When Misfortune Becomes Injustice: Evolving Human Rights Struggles for Health and Social Equality [2 ed.] 1503633055, 9781503633056

Table of contents :
Contents
Foreword
Acknowledgments
Preface to the Second Edition
List of Acronyms
Introduction ALLEGORIZING THE WORLD
Chapter One. Indignation and Injustice
Chapter Two. The Significances of Suffering
Chapter Three. Diverging Parables of Progress
Chapter Four. Dystopian Modernization
Chapter Five. Globalizing Crises, Pandemics, and Norms
Chapter Six. Inequality, Democracy, and Health Rights
Chapter Seven. Power, Politics, and Knowledge
Conclusions THE STRUGGLE FOR THE WORLD WE WANT
Notes
INDEX

Citation preview

Whe n Mi s fo r t une B e co me s Inj u s ti ce

Stanford Studies in Human Rights

When Misfortune Becomes Injustice Evolving Human Rights Struggles for Health and Social Equality Second Edition

Alicia Ely Yamin

Stanford University Press Stanford, California

Sta nf ord Un iv e r sit y Pre ss Stanford, California © 2023 by the Board of Trustees of the Leland Stanford Junior University. All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying and recording, or in any information storage or retrieval system, without the prior written permission of Stanford University Press. Printed in the United States of America on acid-free, archival-quality paper Library of Congress Cataloging-in-Publication Data available upon request. Library of Congress Control Number: 2022046270 isbn 9781503633056 (cloth) isbn 9781503635944 (paper) isbn 9781503635951 (ebook) Typeset by Newgen in Minion Pro 10/14 Cover design and collage: Lindy Kasler Cover photography: Adobe Stock and Shutterstock

For Nico and Sam

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It is precisely the function of constitutional protection to convert misfortune to be endured into injustice to be remedied. —S. v Baloyi and others (J. Albie Sachs) CCT (South Africa) oo 29/99 (1999), para. 12

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Contents

Foreword by Sakiko Fukuda-Parrxi Acknowledgmentsxv Preface to the Second Editionxix List of Acronymsxxiii Introduction: Allegorizing the World

1

1 Indignation and Injustice

22

2 The Significances of Suffering

52

3 Diverging Parables of Progress

77

4 Dystopian Modernization

104

5 Globalizing Crises, Pandemics, and Norms

130

6 Inequality, Democracy, and Health Rights

158

7 Power, Politics, and Knowledge

187

Conclusions: The Struggle for the World We Want

217

Notes

241

Index

281

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Foreword Sakiko Fukuda-Parr

In this reflective work, drawing on her journey as a scholar and activist for health and human rights, Alicia Ely Yamin makes a compelling case for why the praxis of human rights—human rights for social change—must be rethought to meet the challenges of hyper-globalization in the twenty-first century. Capitalism in this century is markedly different from that in the twentieth century. As many economists have pointed out, it is not only about the liberalization and privatization that drove globalization in the last century. Today’s capitalism is driven by financialization, monopoly, and monopsony structures. It is characterized by a new power dynamic: the increasing power of banks and financial actors, holders of monopoly power, leading to extreme concentrations of wealth. Incentives and rewards go to financial transactions, rather than to creation of real economic value, and to the acquisition of intellectual property. These structural changes have shifted the political economy of policy-making, increasing the influence of corporations and shrinking the space of national governments to protect the public interest. The COVID-19 pandemic has exposed and perhaps even exacerbated these dynamics, as illustrated so clearly by vaccine inequity. While national governments rushed to invest in vaccine development through the private sector, the rules were written to give corporations monopoly ownership and the power to decide how much to manufacture and who should be first when buyers lined up. The spectacle of prime ministers and presidents calling on the CEOs of Pfizer, Moderna, AstraZeneca, and other pharmaceutical companies brings home the reality of the shrinking space that governments command to prioritize public interest and protect human rights. This book calls on human rights advocates, xi

xii  Foreword

scholars, and institutions to shift their priorities to the economic rules that govern the world and are the source of persistent human rights abuses such as unequal access to COVID-19 vaccines and treatment. Alicia brings to life the history of human rights law as it relates to the exacerbation of extreme inequity and wealth disparity and their direct impact on health and prosperity, especially amid the recent COVID-19 pandemic. Through a careful analysis that weaves together historical evolutions beginning in the 1970s with developments in human rights law, She describes the increase in socioeconomic inequality over these decades and sees it not just as an issue that affects health outcomes but as a gross social injustice at a time when many economists, human rights lawyers, and philosophers cannot take a stand as to whether inequality is intrinsically undesirable. She balances an understanding of differential, gendered, and other impacts of shifts in economic governance and legal frameworks over the years, with a plea to embrace our common humanity and our shared responsibility for this planet. I was privileged to work with Alicia for many years on the board of the Center for Economic and Social Rights (CESR), when we were collectively engaged in thinking about CESR’s strategy in advancing social justice through human rights. We also worked closely on research projects to understand how indicators employed in the Millennium Development Goals (MDGs), and later the Sustainable Development Goals (SDGs), established both knowledge and governance discourses that in turn produced a wide array of unanticipated consequences. We share an understanding of human rights as consonant with human development, where these rights are guaranteed not only for their intrinsic value but also for their instrumental value in promoting agency, both individual and collective. When Misfortune Becomes Injustice powerfully articulates concerns about the evolution and perpetuation of top-down processes that have historically determined how development priorities and conceptions of justice and equity are formulated. As the book discusses, these top-down “solutions” have often been coupled with a lack of accountability mechanisms, an inadequate reflection of human rights principles, and narrow agendas for mitigating the effects of extreme poverty that neglect urgent attention to inequality, as was made starkly apparent during the pandemic. We need to reclaim a role for national states to be responsible for the provision of public services, including essential public health infrastructures in sustaining human rights in relation to health. That in turn requires addressing global governance that limits the capacity of states in the global South.

Foreword  xiii

Yet it appears that the world is not learning these lessons. Naïvely, I had thought that this existential threat would convince corporations to put aside their pursuit of profit and shareholder value and instead prioritize public interest. I had thought that they would share the technology that could prevent deaths, illness, and the devastating consequences of the pandemic with the world. But this was not the way it worked out. Corporations became even more emboldened in their opposition to technology-sharing and were deaf to calls to do all they could to help end the pandemic. As this volume goes to print, the TRIPS (Trade-Related Aspects of Intellectual Property Rights) waiver at the World Trade Organization (WTO) tabled by India and South Africa over a year ago is yet to be agreed on, with leaked texts from negotiations indicating that they may be leaning toward taking accessibility backward. Governments—predominantly those in the North—seem increasingly unwilling to protect the public interest to end the pandemic when it conflicts with the priorities of the corporations that they host. Global health security measures have continued to privilege colonialist governance by states in the North and rent-seeking pharmaceutical and other commercial interests. Prevailing models continue to focus on disease-related surveillance and detection, but fail to prioritize equitable trade agreements or to reassess metrics for examining health, poverty, and inequality. A human rights praxis for global health must meet head-on global governance structures that have allowed substantial institutional policy change to stagnate and extreme inequality to thrive. Especially after the horrors the world witnessed during the COVID-19 pandemic, we should all challenge ourselves to think of new ways and directions to go in to bring more justice to global health. Throughout this highly readable account, which draws on her many experiences and accomplishments in global health and human rights, Alicia does not hesitate to call out the inadequacy of formalistic rights interpretation that too often accommodates neoliberal conceptions of health (and health rights) at the expense of disruptive change. Despite the glaringly evident lessons of the last several decades of increased global health emergencies and disparity, Alicia is one of few human rights scholars in global health who have long challenged the devastating effects of neoliberal policies and the unfettered power of private actors to control the infrastructure of health provision, including pharmaceutical companies. Long before the pandemic so broadly exposed the inadequacies of bureaucratic approaches to human rights, she rejected the reduction of political and legal struggles to exercises in policy guidance. At the same time, she is a fierce advocate of what dynamic human

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rights praxis can achieve in global health, and she convincingly explains why this matters. As in her other work, in this book Alicia elevates moving stories that show the power of human rights language and the tenacity of human rights advocates, especially from the global South, in promoting political and social reform, freedom, dignity, and agency. If human rights is to remain a relevant framework in our post-pandemic world, advocates and scholars would do well to incorporate the reflections Alicia provides in this exceptional book.

Acknowledgments

Jorge Luis Borges said that “a book is not an isolated being: it is a relationship, an axis of innumerable relationships.” That is certainly the case with this book, which traces one thread in a tapestry of inspiration, struggle, and solidarity. I am tremendously privileged to have had mentors in the United States as well as in the many countries mentioned in these pages who not only were pioneers in international law and global health but valued praxis and showed me how ideas could move worlds. Paul Farmer, Deborah Maine, Philip Alston, Lynn Freedman, Giulia Tamayo, Roxana Vásquez, and many others modeled the understanding that underpins this book, which is, to paraphrase bell hooks, that theory can be and indeed must be a laboratory for practice if we seek to use it to change people’s lives. Much of this book speaks to the power of translating ideas into collective action for progressive change. I am tremendously thankful to my colleagues at Partners In Health who inspired and sustained me throughout the pandemic with their indefatigable commitment to collectively advancing global health justice. All professional lives, and especially those of women, are inexorably the products of social, economic, and personal contingencies as well as personal aspirations and effort. The many transitions between continents, with children in tow, which once may have seemed sacrifices in terms of traditional professional advancement, in retrospect were inestimable gifts that allowed me to meet and work alongside exceptional colleagues around the world. Only some of these pioneering thought leaders, heroic clinicians, brave judges and parliamentarians, and brilliant activists are mentioned in these pages. But they are all invariably part of this story and therefore are present in these pages. Writing the first edition of this book overlapped felicitously with pursuing academic study in Argentina. As a result, I benefited enormously from the xv

xvi  Acknowledgments

incisive comments of Roberto Gargarella, a friend, colleague, and leading scholar of comparative constitutional law and democratic theory. Other friends and colleagues also provided key insights and constructive critiques. I am especially grateful to Norman Daniels, Siri Gloppen, Michael Stein, Luciano Bottini Filho, and Camila Gianella Malca. I have also benefited enormously from joint scholarly projects that I draw on here, as well as collaborative workshops at the Centre on Law and Social Transformation and the Bergen Centre for Ethics and Priority Setting (B-CEPS), both in Norway. Many people contributed directly to the process of putting the book together. Emily Maistrellis played a pivotal role in an early version of this story, and, critically, helped me establish the book’s temporal sequence. I am deeply grateful for the time, knowledge, written notes, and other materials that the following key informants generously shared: Jashodhara Dasgupta, Lynn Freedman, Paul Hunt, Deborah Maine, Rebecca Cook, Marge Berer, and Lucinda O’Hanlon. In completing the first edition Angela Duger’s thorough research and tracking down of different sources and constructive feedback were critical. Tara Boghosian dove into the project with great enthusiasm, diligently helping prepare the final manuscript of the first edition for publication. This second edition could not have been written without the many conversations, research assistance, and invaluable feedback that Amanda Wibben provided. Amanda’s searching questions, together with her profound commitment to the book project and to the larger aspiration of social justice in health, continuously reminded me why this work matters. I am grateful to Sue Goldie, faculty director of the Global Health Education and Learning Incubator at Harvard University, who has long championed multidisciplinary perspectives in global health. Sue provided personal as well as institutional support throughout the time I was researching and writing both the first edition and this significantly expanded second edition. Other institutional support provided at different phases of research and writing the first and second editions at both Harvard and Georgetown was essential. I am appreciative of both Jennifer Leaning, then faculty director of the FrançoisXavier Bagnoud Center for Health and Human Rights at Harvard University, and Lawrence Gostin, faculty director of the O’Neill Institute for National and Global Health Law at the Georgetown University Law Center, for their support during different phases of researching and writing the first edition. I am also grateful to faculty director Glenn Cohen and my colleagues at the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics at

Acknowledgments  xvii

Harvard Law School, where many of the pandemic themes in this second edition were first explored in symposia, events, and academic projects. I was delighted that Mark Goodale embraced the approach of the book for the interdisciplinary, innovative Stanford Studies in Human Rights series he created. I am also grateful to Kate Wahl, editor-in-chief of Stanford University Press, for her guidance and support in creating a revised second edition. Despite the way creative work by men is often portrayed, it is never an autonomous effort that emerges without contributions and sacrifices by those who share our private lives. As ever, I am endlessly grateful to Nico and Sam, my sons and greatest life teachers. My partner, Jeremy, has been my traveling companion along this entire journey. As I wrote this expanded second edition, as with the first edition, he shared coffee at sunrise on countless days and in so doing transformed waking in predawn hours from a dreaded chore into an anticipated pleasure. Finally, I am forever awed and inspired by the true protagonists of the struggle for health rights and social justice: those ordinary people who carve out dignity and purpose in lives too often shadowed by poverty and discrimination; who make tremendous sacrifices not for their own future reward but to enhance the lives of others; who mobilize collectively to protest tyranny of all forms; and who, despite all odds, change the world time and again.

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Preface to the Second Edition

In the same week that the first edition of When Misfortune Becomes Injustice was launched at Harvard Law School in early February 2020, I participated in the first meeting of the Commissioners of the Lancet-Dartmouth Commission on Arctic and Northern Health.1 It was a grim meeting in the sense that we discussed the sweeping social and health impacts of centuries of colonialism, and the climate crisis that was wreaking devastation on the Arctic and the indigenous communities’ lands, health, and ways of life. At the same time, the world urgently needed the policy insights and epistemic approaches that arctic indigenous leaders, scholars, and health providers bring to bear on the intersecting health, social, economic, and climate challenges that the world faces. On the margins of that meeting, some of us discussed emerging evidence about a novel SARS virus that had been identified in Wuhan, China, that was producing a bilateral pneumonia and appeared to be quickly spreading. The virus was named by WHO that same week, on February 11, 2020, and was declared a pandemic a month later. COVID-19 would upend lives and livelihoods across the globe and prove to be the greatest global crisis in a century, leading UN secretary-general António Guterres to call it “the biggest international challenge since the Second World War.”2 As of this writing, over 15 million people had died of COVID-19 directly and from other conditions left untreated or caused indirectly by the pandemic. The massive disruption of lives and livelihoods as well as challenges to the rule of law, democratic norms, and the multilateral system, represent a profound inflection point for all of us. SARS-CoV-2 struck a hyper-globalized world pervaded by intersecting inequalities within and across countries, with many governments shackled by waves of debt and austerity and dependent on the miserly charity of the economic xix

xx   Preface to the Second Edition

North. Already, before Russia’s invasion of Ukraine in 2022, the pandemic had laid bare the need to reimagine the post−World War II order that had evolved in the subsequent decades. Thus, with Stanford University Press we agreed that the pandemic lent urgency to the arguments in the first edition regarding how we came to find ourselves with our current institutionalized social order, as well as the need to revisit strategies for human rights in promoting greater health and social equality. Well before the pandemic, profoundly morbid symptoms of our conjoined political, economic, ecological, and social crises were visible not just to indigenous people in the Arctic and around the globe but to anyone who was paying serious attention. Indeed, the genesis for writing When Misfortune Becomes Injustice was the tracing of the dual trajectory of progressively developing and deploying rights to advance population health on the one hand and on the other the shifting structural constraints that undermined the political possibilities to realize them. Nonetheless, the way the world responded to a global pandemic and the social and economic crises it triggered have elevated these interconnected issues. On a more personal level, people across geographic regions and students across disciplines—law, public health, nursing, sociology, gender studies, anthropology, and the like—were faced with grappling with how to make sense of all the losses, big and small, that they themselves and their communities were experiencing, as well as diverse people across our shared world. Questions about how we understand our own personal narratives, and those of others, were central concerns of the first edition. But, again, COVID-19 raised these questions with greater urgency for a far broader group of people. During the pandemic, I had the privilege of teaching not just Harvard students but students from Argentina to Mexico, from Norway to South Africa. Some of these students lost family members and faced displacement from their homes; others began rethinking career paths as their futures were suddenly upended; some were working in hospitals and on COVID-19 wards; still others were struggling with the overwhelming feeling of impotence that comes with seeing overfilled emergency rooms and makeshift morgues on televisions and smart phones without being able to do anything. The discussions in this significantly revised edition are deeply informed by diversely situated students’ insights and questions not just about the effectiveness of human rights law but about how to respond ethically to the suffering of our fellow human beings and the natural world.



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If When Misfortune Becomes Injustice was already focused on the need to translate the lofty aspirations of human rights law into the “immanent regularity of practices,” to use Pierre Bourdieu’s term,3 this revised edition adds further reflections on that challenge in crisis and “normal” times. Drawing heavily on advocacy work during the pandemic with Partners In Health (PIH) as well as on reproductive justice coalitions in Latin America, which achieved landmark gains in abortion rights, this edition addresses more squarely what makes human rights strategies successful in achieving social change in different contexts and in turn what that tells us about the many challenges that lie ahead. Reflecting on the legacy of my beloved friend and colleague Paul Farmer, the co-founder and chief strategist of PIH, who passed away suddenly in 2022, reinforces the imperative of repeatedly coming back to the question of why it matters to treat health as a matter of rights. Centering the question of why the equal dignity of diverse people matters pushes us to ask what we should do to advance global health justice and how we should do it, in ways that call for profoundly disrupting the status quo. Paul literally connected the world through his extraordinary work and life, driven by the profound belief that the idea that some lives matter less is the root of all that is wrong with the world. At a time when the world seems so broken, it could not be more urgent to carry forward a transformative praxis of human rights in global health based upon our common destiny and shared humanity. Alicia Ely Yamin Cambridge, Massachusetts, 2022

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List of Acronyms

AAAQ

availability, accessibility, acceptability, and quality (of health facilities, goods, and services) ACHR American Convention on Human Rights ACIJ Access to Justice Program of the Asociación Civil por la Igualdad y la Justicia (Civil Association for Equality and Justice) (Argentina) ACT-A Access to COVID-19 Tools (ACT) ACT-Accelerator ACT UP AIDS Coalition to Unleash Power ACUMAR Autoridad de Cuenca Matanza Riachuelo (interjurisdictional river basin authority for Matanza-Riachuelo) (Argentina) AFDC Aid to Families with Dependent Children (USA) ANC African National Congress (South Africa) ANVISA Agência Nacional de Vigilância Sanitária (National Health Surveillance Agency) (Brazil) APRODEH Asociación Pro Derechos Humanos (Association for Human Rights) (Peru) ARV antiretroviral medication AZT azidothymidine BTL bilateral tubal ligation CAT UN Committee against Torture C-TAP COVID-19 Technology Access Pool CCPR UN Committee on Civil and Political Rights CEDAL Centro de Derechos y Desarrollo (Center for Rights and Development) (Peru) CEDAW UN Convention on the Elimination of All Forms of Discrimination against Women xxiii

xxiv

List of Acronyms

CEHURD CEJIL CEPI CERD CESR CHIRAPAQ

Center for Human Rights and Development (Uganda) Center for Justice and International Law Coalition for Epidemic Preparedness Innovations UN Committee on the Elimination of Racial Discrimination Center for Economic and Social Rights Centro de Culturas Indigenas del Perú (Center for Indigenous Cultures of Peru) (Peru) CLADEM Comité de América Latina y el Caribe para la Defensa de los Derechos de las Mujeres (Latin American and Caribbean Committee for the Defense of Women’s Rights) (Peruvian chapter, as referred to in this book) CONITEC Comissão Nacional de Incorporação de Tecnologias no Sistema Único de Saúde (National Commission for Health Technology Incorporation) (Brazil) COPLAMAR Coordinación General del Plan Nacional de Zonas Deprimidas y Grupos Marginados de la Presidencia de la República (Program for the Protection of Marginal Groups) (Mexico) COPs Conferences on Principles CP rights civil and political rights CRC UN Convention on the Rights of the Child (also Child Rights Convention) CRPD UN Convention on the Rights of Persons with Disabilities CRR Center for Reproductive Rights (formerly Center for Reproductive Law and Policy, CRLP) CTM Confederación de Trabajadores de México (Confederation of Mexican Workers) DALYs disability-adjusted life years ECLAC Economic Commission for Latin America and the Caribbean ECtHR European Court of Human Rights ESC rights economic, social, and cultural rights ESG environmental, social, and governance goals ETOs extraterritorial obligations Ex-ESMA [former] Escuela Superior de Mecánica de la Armada (Naval Mechanics School) (Argentina) EZLN Ejército Zapatista de Liberación Nacional [Zapatista Army for National Liberation (Mexico)] FCGH Framework Convention on Global Health



List of Acronyms

xxv

FDA Food and Drug Administration (USA) FOROSALUD Foro de la Sociedad Civil en Salud (Civil Society Forum on Health) (Peru) GATT General Agreement on Tariffs and Trade GDP gross domestic product HAE hereditary angioedema HDI Human Development Index HIPC heavily indebted poor country HRBA human rights−based approach (to health) HRC UN Human Rights Council IACHR Inter-American Commission on Human Rights IACtHR Inter-American Court of Human Rights ICPD International Conference on Population and Development (Cairo, 1994) ICSID International Centre for the Settlement of Investment Disputes IDB Inter-American Development Bank IFI international financial institution IHME Institute for Health Metrics and Evaluation IHR International Health Regulations IIMMHR International Initiative on Maternal Mortality and Human Rights ILO International Labour Organization IMF International Monetary Fund IPV intimate partner violence LGBTQ+ lesbian, gay, bisexual, transgender, queer/questioning and others LIC low-income country LMIC low- middle-income country MDG Millennium Development Goal NAFTA North American Free Trade Agreement NGO nongovernmental organization NHRI national human rights institution NIEO New International Economic Order NIH National Institutes of Health (USA) ODA official development assistance OECD Organisation for Economic Cooperation and Development

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List of Acronyms

OHCHR PEPFAR PHEIC PMA PMNCH PMTCT QALYs SAP SDG SOGI SRHR SUS TAC TBA TMB TNC TRIPS UHC UNAIDS UNCTAD UNDP UNFPA USAID WE:ARE WEP WHA WHO WIPO WTO

UN Office of the High Commissioner for Human Rights President’s Emergency Plan for AIDS Relief public health emergency of international concern Pharmaceutical Manufacturing Association Partnership for Maternal, Newborn and Child Health prevention of mother to child transmission (HIV) quality-adjusted life years Structural Adjustment Program Sustainable Development Goal sexual orientation and gender identity sexual and reproductive health and rights Sistema Único de Saúde (Unified Health System) (Brazil) Treatment Action Campaign (South Africa, as referred to in this book) traditional birth attendant treaty-monitoring body transnational corporation Trade-Related Aspects of Intellectual Property Rights universal health coverage Joint United Nations Programme on HIV/AIDS UN Conference on Trade and Development United Nations Development Programme United Nations Population Fund US Agency for International Development Women’s Empowerment and Recovery Educators (United Kingdom) Women’s Employment Project (USA) World Health Assembly World Health Organization World Intellectual Property Organization World Trade Organization

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Intr o d u c ti o n

ALLEGORIZING THE WORLD The idea that some lives matter less is the root of all that is wrong with the world. —Paul Farmer1 As competent human beings, we cannot shirk the task of judging how things are and what needs to be done. As reflective creatures, we have the ability to contemplate the lives of others [and] the miseries that we see around us and that lie within our power to help remedy. . . . It is not so much a matter of having exact rules about how precisely we ought to behave, as of recognizing the relevance of our shared humanity in making the choices we face. —Amartya Sen2

THERE A RE TUNNE L S UN D ER H A R VA R D L AW SCHOO L that connect the buildings and are lined with student lockers. Before she became a US Supreme Court justice, Dean Elena Kagan had begun to reimagine public space as part of transforming the experience of being at the Law School—not only adding better lighting and framed posters in the tunnels, but also a volleyball court that turned into an ice-skating rink in winter outside the student center. But in September 1988, that was a long way off and the tunnels were grim. It was the first day of my first year, and I had retreated to this underground labyrinth to contemplate having been the first student called on by a visiting professor of contracts, who seemed to believe the purpose of the Socratic method was to humiliate as much as edify. A classmate, who on that first day had already established himself as someone to be looked up to, stopped by my locker and said, “Hey, you did great!” Seeing my dubiousness, he added with a broad smile, “No, really. . . . How’d you know ‘e.g.’ was short for ‘exempli gratia’ anyway?”

1

2 Introduction

Over twenty-five years later, I watched that same classmate, Barack Obama, who by then had graying hair and furrowed brows, in Dallas as he delivered one in a long line of speeches he had had to give as the first African American president of the United States after mass shootings and murders of Black men by police. In this case, five police officers had been shot dead and nine others injured in Dallas, Texas, on July 7, 2016, at the very end of a peaceful Black Lives Matter protest.3 The shooter was a psychologically unstable Black former marine. Many politicians would have used the occasion to pander to fear. President Obama did not. In his speech in Dallas, he asked: Can we see in each other a common humanity and a shared dignity, and recognize how our different experiences have shaped us? . . . [W]ith an open heart, we can learn to stand in each other’s shoes and look at the world through each other’s eyes. So that maybe the police officer sees his own son in that teenager with a hoodie [and] maybe the teenager will see in the police officer [his parents’ values].4

It was a magisterial speech, one that spoke to the aspiration of recognizing our diverse but equal humanity, which lies at the heart of deploying human rights for social transformation. It was the kind of speech for which President Obama had become famous, the kind of speech that eight years earlier might even have made us believe in the possibility of a ‘post-racial America.’ But, looking back, Obama’s mobilization of policy did not match his mobilization of language; the structural drivers of racebased wealth, health, and education inequality had continued to grow unabated. Moreover, we had witnessed hundreds of shootings of Black Americans by the police, a seemingly endless tide of racially motivated violence against multiple groups of people of color, and the ferocity of racist hatred unleashed during the administration of Donald J. Trump. In retrospect, the ‘audacity’ of that hope came to seem cruelly naïve. This book grew out of a critical reflection on a professional career spent pursuing the narrative behind Obama’s speech, not just or even primarily in the United States, but around the world: the narrative that all of us are capable of connecting to the otherness within ourselves, and in those around us, and of uniting around ideals of our shared humanity rather than reflexively recoiling in prejudice or fear. Advancing the right to health and economic, social, and cultural rights has entailed making space for not just racial otherness, but the otherness of gender, ethnicity, and the many other axes of our socially constructed identities. It has also meant confronting the challenges of advancing common human



ALLEGORIZING THE WORLD 3

interests, such as defeating a pandemic and stemming climate change, posed by the profound social and economic inequalities that systematically foster indifference to the suffering of others. An incantation to “look at the world through each other’s eyes” can of course produce a hollow tolerance from our own narrow perspectives. Empathy can easily become a way to congratulate ourselves for feeling the sorrows of the world. Or it can become a performative gesture if it is not accompanied by creating the structural conditions that enable diverse people to be treated as equals under law and in practice. For example, white supremacy in the United States is not a matter of individual racist attitudes or even subconscious biases; it is imbricated in every institution in our society. Moreover, dismantling white supremacy requires relinquishing the privileges of whiteness just as much as recognizing the rights of people of color. The same applies globally: the remedy for the raging neocolonialism in global health that the pandemic has laid bare about vaccines and beyond is not charity—it is structural reform and reparative justice. If taken seriously, however, the idea that we as individuals, our democracies, and our world are enlarged by dialogue among equals with differing views and life experiences has radical transformative potential. Genuinely seeing the dignity in the other, ascribing the other with our own human qualities—and conversely ascribing what we see as their human qualities to ourselves—is the basis of all human rights, both in relation to health and more generally. It was in many ways during my time at Harvard Law School in the late 1980s and early 1990s that great expectations for the potential role of international human rights rose to prominence on the world stage. The idea of international human rights was exploding—in the news media and as a scholarly field. Although in 1989 the Chinese regime acted with swift repression to put down the protests in Tiananmen Square, later that year we all sat glued to our televisions watching the Berlin Wall fall and Nelson Mandela walk free from Victor Verster Prison in 1990. These events not only shattered assumptions about the global political order but also opened apparent possibilities for purposefully expanding the use of an international legal framework that aspired to promote greater justice in the world. The world was changing before our eyes, and it seemed possible that we could develop human rights law in disruptive ways to combat deeply rooted social and economic injustices, which many of us had until then protested through the politics of the street. When the Gulf War broke out in the spring of 1991, a group of friends and classmates created the International Study Team

4 Introduction

on the Gulf Crisis to assess the impacts of the US invasion on civilians using an explicit human rights framework, weaving together legal, public health, and social science expertise to document the resulting deprivations of water, food, sanitation, and healthcare access in terms of economic and social rights.5 That study team became the Center for Economic and Social Rights (CESR) in 1993, which I went on to contribute to through reports, fact-finding delegations, and then through serving on the board, eventually as vice president (2001–2008) and as president (2009–2015) succeeding Philip Alston. At the time, virtually all international human rights scholars and organizations were focused on civil and political (CP) rights, such as freeing political prisoners and exposing abuses. Economic, social, and cultural (ESC) rights were derided if not dismissed by the Northern-dominated international human rights movement. Some of us—at the time, primarily advocates from the global South—nonetheless insisted that the promises of the Universal Declaration of Human Rights could only be achieved if human rights norms, institutions, and procedures were deployed to regulate economic inequality and deprivation, just as the expansion of suffrage and other civil rights had diffused political power. Over the decades since the fall of the Berlin Wall, those of us who have dedicated ourselves to advancing ESC rights have faced at least three challenges in scholarship and advocacy.6 First, we would have to subvert entrenched ideas about rights: notions that ESC rights were not enforceable legal rights, but mere programmatic aspirations. In health, doing so required changing formal legal norms, but also reconceptualizing causal responsibility for patterns in social determinants of health as well as access to care. Second, we had to articulate what it would mean to take ESC rights seriously in laws and practices. A right to health is not a right to be healthy. But it is not at all obvious what shifts conceptualizing health as a right implies across different contexts in terms of policy and legal frameworks, let alone national health strategies and budgets, program design and appropriate remedies for non-compliance. Finally, we sought to demonstrate that applying rights in health could contribute to fostering greater egalitarianism in our societies, and world. This book is an account of facing those evolving challenges over the last few decades, with respect to health-related rights in particular. It is a reflection on the extent to which coming to apply a human rights framework to health, and ill-health, was able to convert a narrative of “misfortune to be endured” to one of “injustice to be remedied.”7 Multiple assessments of international human rights have been written in recent years, both by avowed skeptics and by cheerleaders.



ALLEGORIZING THE WORLD 5

This is, however, an insider’s account of a particular aspect of the human rights story—applying human rights to global health—in which I conclude there is indeed “evidence for hope” but, as exposed by the ravages of the pandemic, “not enough.”8

Framing the Argument In a previous book, Power, Suffering, and the Struggle for Dignity: Human Rights Frameworks for Health and Why They Matter (hereafter referred to as Power and Suffering), as well as in other writing, I have suggested that a transformative engagement between health and human rights requires critically rethinking conventional approaches to both human rights and public health.9 In many ways, this book is the continuation of my thinking in Power and Suffering. Accounts of the evolution of HIV/AIDS, sexual and reproductive health, and other topics into rights issues have addressed pieces of the narrative from different country or disciplinary perspectives. We are missing some of the most significant features of the story of creating health as a matter of rights. These most revealing, and often most challenging and frustrating, parts of the narrative lie precisely in the points of intersection and friction between different fields—law, medicine, and health; human rights and economics—and between their methods and epistemic models. Further, this account tracks the recursive relationships between “lived experience” of health-related rights and the evolution of development frameworks and legal norms—and how these synergies and dissonances evolved over time. Among many other things, we saw during the pandemic that some of the carefully constructed normative edifices in international law crumbled like sandcastles when the first waves of COVID-19 hit. Thus, this book fills in some of the many gaps in this complex history and does so in a way that enables extracting lessons about using human rights critically for progressive social change in health and beyond. While many examples are drawn from women’s health, which is the path I have walked, there is a larger point. The recognition of a specific population’s rights implies a reconfiguration of what it means to assert dignity claims and who is considered an equal member of the political community. Take marriage, for example: if same-sex couples can marry and receive all of the attendant legal benefits, this redefines what the institution of marriage means for everyone. Likewise, if the health needs of women with intersectional identities are integral to the right to health, this changes the design of health systems for everyone. A truly

6 Introduction

subversive struggle for health and other rights should be profoundly destabilizing to the status quo, which requires more than invoking the protected status of an ever-growing list of categories of persons. Rather, it continually calls upon us to think harder about challenging the interlocking structures of power—racial supremacy, patriarchy, biomedicine, economic constructs—that shape our social institutions and assign differential value to categories of humans. My central argument is two-fold. On the one hand, normative and institutional evolution has been extraordinary in health and other ESC rights and has over these decades advanced efforts to curb traditional forms of tyranny and discrimination, as well as to create new discourses of equality, the purposes of the welfare state, and the boundaries of inclusive democracies. Many of these advances indeed have been forged in women’s health rights and sexual and reproductive health and rights (SRHR), which have expanded understandings of rights, the porousness of the border between the public and private spheres, and how societal power structures influence health for everyone. Further, although the pandemic revealed the precarity of many advances, human rights conceptualization and advocacy have not only achieved normative and rhetorical change, as some critics claim. The application of human rights in health has also been crucial to saving actual lives, from HIV to maternal mortality to mental health; improving health outcomes, conditions, and care; enhancing dignity and equality; and easing burdens of stigma and discrimination in practice. Indeed, many places that fared relatively well in terms of trust in government, equity, and social cohesion during the pandemic, including very low-income settings such as Kerala, India, reflect wide implementation of human rights principles in policies, public discourses, and institutional practices, including commitments to gender equity and social solidarity. On the other hand, even as we advanced new understandings of who could participate as full members of society and what equal enjoyment of health rights meant in practice, the possibilities and political space necessary to advance a robustly egalitarian health rights agenda were shrinking. That is, just as health and other ESC rights claims were being theorized and articulated, in international instruments and reformed constitutions, the potential for democratic responses to those claims was being crippled by the global embrace of neoliberalism, which encoded a series of free market-oriented reforms designed to reduce state influence in economies. From the late 1970s onward, we have seen the effects of ever-deepening inequality within and between countries; the hollowing out of safety nets and social institutions, including health and education systems; the



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increasing gap in life chances and choices between waged laborers and the masters of capital markets; and the failures of public and multilateral institutions to address global crises such as conflict, forced displacement, and climate change. As public resources were privatized for personal gain, growth in private capital outpaced growth in public capital, concentrating power in the top echelons of society and distorting political agendas across the world. After decades of these tendencies, the institutionalized social order that the pandemic struck was characterized by a “deeply predatory and unstable form of social organization that [had liberated] capital accumulation from the very constraints (political, ecological, social, moral) needed to sustain it over time.”10 Just before COVID19 erupted, Oxfam announced that 2,000 billionaires owned as much wealth as 60 percent of the world’s population,11 and their interests were not well aligned with those of the rest of humanity. And when the pandemic struck, the world found out quickly that we were not “all in this together.” During the pandemic, some billionaires and multimillionaires amassed exponentially greater fortunes while swathes of humanity lost lives and livelihoods and lacked access to lifesaving vaccines as well as food, adequate housing, and other social support. The pandemic reversed earlier gains in poverty reduction, pushing over a hundred million people into poverty—a historically unprecedented increase in global poverty that had cascading effects on food insecurity, school attendance, and health. Essential health services were widely disrupted by the pandemic, as was long-term care for chronic conditions, rehabilitation, and palliative end-of-life care, disproportionately affecting older people and people living with disabilities. But the health effects of this evolution in national and global political economies were observable long before the pandemic. In different chapters, we will see mass sterilizations of indigenous women in Peru justified by a need for economic growth, barriers to HIV medications based on intellectual property regimes, chronic illness in coffee plantation workers caused by toxic food production, and widely disparate and gendered health outcomes due to increasing privatization of health systems across the world. Moreover, trade liberalization, intellectual property rules, deregulation of private capital flows, and labor market “flexibilization” (a form of deregulation) came to be accepted by many governments as well as intellectual elites as the natural order of things. As public resources and capacities became ever-more constrained by structural adjustment and austerity, the path to “modernization” in health and beyond was increasingly paved with private sector solutions and

8 Introduction

philanthro-capitalist charity. Some autocratic regimes eagerly colluded with policies promoted by international financial institutions (IFIs) and powerful governments; others found themselves hamstrung by economic conditions previously negotiated or created. In addition to everything else, the “cruel pedagogy of the pandemic”12 exposed the mendacity of that neoliberal narrative, and that our exceptional dependence on market-based solutions is part of the problem, not the solution. To be clear: there is zero nostalgia for some mythical romanticized past in this account. It is duality that I am interested in: while we were advancing health and other social rights, the dark side of the multilateral economic order was limiting the very space in which those rights could be realized. To use human rights to promote a robust agenda for health and social justice, we first need to understand “how things became what they are,” in Nietzsche’s expression. Then, based on a clear-eyed analysis of both the critical ground we have gained and why we have fallen short in other respects, we must reenergize the aspirations of a world where everyone enjoys health and other rights in practice. Working toward a social order that includes economic justice both within and across borders calls for critical praxis and experimentalism. Elaboration of positive norms within the bounds of international human rights law is an essential component, but alone cannot produce the transformations we seek. To tackle the structural inequalities in our institutional order, we in human rights need to work across other fields of law, as well as geographic and disciplinary borders. The task ahead requires experimenting with creative militancies, and unsettling orthodoxies not just in dominant macroeconomic and sociocultural constructs, but also in the constellation of overlapping fields related to health and human rights.

A Historical Account Told through Human Stories This account begins in the 1970s and traces developments over the decades since then. By placing this narrative in historical perspective, we can understand better the iterative nature of deploying rights for progressive change in health and beyond, as well as the contingency of normative developments. Given the multiple crises we face today iterative approaches may seem unappealing to many impatient readers. Although I share that fierce sense of urgency, history shows us that revolutions do not tend to yield the kinds of profound social and cultural transformations that both protect and advance the interests of diverse groups which are central to the world we want. Chapter 1 situates the beginning of the account in Argentina during the civic-military dictatorship (1976–1983), and explores the factors that led human



ALLEGORIZING THE WORLD 9

rights to become the dominant model for human emancipation; it describes the implications for health, and women’s health in particular, of how human rights issues were circumscribed in law and practice. In Chapter 2, we turn to the 1980s and examine how an embrace of neoliberal policies reconfigured the relationship between the state and markets, with ensuing effects on health and rights. Chapters 3 and 4 describe both the aspirational hopes for human rights in health and beyond that emerged with the thawing of the Cold War, and at the same time the tightening of neoliberal global governance during the decade of the 1990s. Situating the account in Mexico and Peru respectively, we see how subsistence farmers and indigenous communities were excluded from the vision of modernization that many states pursued. Yet these cases illustrate the power of human rights frameworks in enabling subaltern groups to articulate the causal drivers of their situations and to become agents of change. Chapter 5 discusses how at the turn of the millennium, the HIV/AIDS pandemic underscored the global health security risks of infectious disease spread, while the catastrophic effects of economic volatility were evidenced in the rapid spread of the 2008 financial crisis around the world. Grounded in southern Africa, the chapter discusses both remarkable successes in establishing an enforceable right to health and implications of the marked proliferation of health-related human rights norms, institutions, and procedures during the 2000s. Turning to Brazil and the landmark case of Alyne da Silva Pimentel, Chapter 6 analyzes the advances in elaboration of human rights–based approaches to health. By 2015, judicialization of health-related rights had also advanced at the national level, but with contested effects on equity in Latin America. The Brazilian context reveals how important enshrining health rights can be but also how democratic dysfunction and gaping inequalities constrain rights strategies from producing greater social transformations. Chapter 7 begins in 2016, with the adoption of the Sustainable Development Goals, and brings us through the pandemic years. The chapter focuses on what COVID-19 and government responses to it revealed about connections between health, health systems, and democracy, and concludes by exploring the demands of global health justice moving forward. It would be impossible to set out a comprehensive account of the normative developments across regional and national contexts, let alone in international law. Moreover, scholars and practitioners who have actively carved out this terrain, including many of those with whom I have worked, have already told or would tell a very different story. That is not my objective here. Trying to do justice to the complexity, this book explicitly weaves together multiple threads as different factors evolved.

10 Introduction

These factors range from epidemiological conditions and empirical knowledge to the advent of scientific and technological innovations, from social movements and alliances to legal mobilizations; from institutional leadership to funding for health systems and aid architectures; and from international law to development paradigms. It is the interactions among these factors that have shaped the path we in health and ESC rights have taken, the challenges we have encountered, and the future we face today. It is not just that no single gaze can explain how we got to where we are. It is also that the silo-ing of disciplinary perspectives and systems for the production of knowledge in those disciplines, from law to economics to public health (and even sub-disciplines of human rights and global health law) stymies our collective capacity to see the ways that barriers to change in our institutional order relate to one another. My hope is that synthesizing ideas from multiple domains throughout the book will allow a wider group of readers to connect the dots as to how different events and developments are related. The why question—why readers from diverse backgrounds should care about applying human rights in health —is best conveyed through what rights deprivations mean in real people’s lives. Here, as in other writing, I use stories to humanize the often dense and arid discussions of health systems, international law, and economic models. Using stories invariably involves the politics of power and representation, especially when the accounts relate to experiences of marginalized and vulnerable people. The stories from countries around the globe are explicitly recounted from my perspective, with awareness of my own positionality, and are based on contemporaneous journals and field records, together with additional research.13 In our personal lives, we tend to see the cascading effects of life-changing moments in hindsight. But it is imperative that we collectively reflect on the world-altering COVID-19 pandemic. The stories we tell about the sprawling pain diverse people experienced and continue to experience—and why—will define the future we create. These stories are not captured in statistics of disease and death, legal analyses, or policy reports alone. Many are “ordinary” tragedies and traumas that go uncounted: the tears of loved ones we could not wipe away and the hugs we longed to give; the grief over a partner forced to die alone; the despondency of a teenager who started to cut himself; the unrelenting loneliness of an elderly woman; the sense of abandonment of an intellectually disabled man whose family could not visit him in his institution; the hopelessness of a single mother who lost the housecleaning job she used to support herself and



ALLEGORIZING THE WORLD 11

her children; the desperation of families who could no longer pay their rent; the despair of those consigned to suffer with long COVID-19 in the shadow of massive government indifference; and on and on. These are stories about important parts of our lives that were robbed during the pandemic, which in turn speak to what we value and who we are as human beings in ordinary times. Of course, not all of what happened to individuals, communities, and countries as a novel coronavirus swept across the planet amounts to injustice; discerning when misfortune becomes injustice is the point.

Starting Points I: Law, Rights, and Democracy My first theoretical starting point is that rights, as opposed to broader conceptions of justice, are inexorably tied to the law, which at best offers a conservative set of tools for social change. The language of law, just as the language of economics and medicine, is a way of representing the world, and it often cloaks the deeply unequal architecture of that world. Indeed, using human rights for social change, in health and beyond, is in many ways, as Audre Lorde might say, trying to take up “the master’s tools to dismantle the master’s house.”14 Of course, human rights are more than law; they are cultural and political idioms; they are tools for social mobilization; they are sites of moral contestation about equality and justice; and much more. Indeed, transformative uses of rights often lie in extralegal social practices, and in a more inclusive and engaged politics. Nevertheless, we live in an inexorably normativized world where it is illusory that movements for social change can avoid using law, including international law. Law structures political economies within and across states, meaning that it structures the “rules of the game” by which groups interact in both public and private spheres, from the home to the market. When the state sets the rules of the game, it has distributional consequences. These background assumptions and institutional structures shape the power different groups have over each other, whether men over women in the home or the bargaining power of actors in the market. But in our globalized world, sometimes the laws that construct public institutional capacity and private freedoms lie beyond the borders of a particular nation-state where the distributional effects can be observed. The changes we have seen over the last fifty years are reflected in changes in intellectual property, tax, labor, trade, and other laws, which are sometimes encoded in international legal regimes and sometimes triggered by pressures exerted by foreign governments, such as the United States, and global institutions. In all cases, these legal

12 Introduction

evolutions shape possibilities for using rights in transformative ways to advance population health. My second starting point is that while drawn from liberal philosophy, the notion of dignity that underpins international human rights need not be reduced to a narrow autonomy; dignity understood as agency over our lives that is exercised within a web of relationships has resonance in many other religious and philosophical traditions. Moreover, human rights are not self-standing truths to be plucked from international treaty documents, but loci of contestation over power and evolving values. All rights are terse formulations of profound arguments about distributive justice and humanity. If we seek to use rights to promote social justice in health, it is a strategic mistake to think that merely using the shorthand is enough to circumvent the argument. We will see repeatedly in this history how all human rights are ineluctably embedded in broader legal and economic architectures, which narrowly positivistic approaches to defining health rights fail to challenge—and may obscure. Formalistic claims that presume to lock in specific content are particularly ill-suited in relation to health rights. The right to health is inherently unstable because of constantly emerging diseases (say a novel coronavirus), and shifting demographics and scientific advances, which in turn lead health systems and societies to undergo constant evolution. Further, we will never all agree on what should be guaranteed by the state in relation to potentially bottomless demands for public health and health care, and these decisions determine cartographies of life and death, and illness. Indeed, as many recognized during the pandemic, perhaps more dramatically than any other right, health calls upon us to continually reflect on what we owe to one another as coequal members of a polity and as equal but diverse human beings in a globalized world with finite resources. Advancing health justice calls for using the law in ways that enable not just elites in judiciaries, ministries of health or supra-national institutions, but ordinary people to collectively deliberate with respect to setting the bounds of health rights. My third starting point, which follows from the above, is that advancing health-related rights, as opposed to abstracted health outcomes, is fundamentally linked to democracy. By democracy I mean more than a preset arrangement of state institutions: executive, legislature, and judiciary. Meaningful democracy calls for more than representation of a narrow set of political interests through periodic elections, and more than formal institutional bulwarks to ensure that people leave each other alone. Rather, the essence of democracy is political equality and deliberative processes that enable diverse people (including marginalized



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groups) to govern themselves based on reasons they accept as legitimate, rather than power plays between elites or preassigned racial, class, ethnic, gender, caste, or other identities. As Seyla Benhabib writes, meaningful democracy is best understood as “a model for organizing the collective and public exercise of power in the major institutions of society on the basis of the principle that decisions affecting the well-being of a collectivity can be viewed as the outcome of a procedure of free and reasoned deliberation among . . . moral and political equals.”15 Decisions relating to health policy and priorities invariably affect the well-being of a collectivity, as we all came to understand more clearly during the COVID-19 pandemic. Over the course of the last five decades, we have seen the deepening of what Jürgen Habermas called a “legitimation crisis” in democratic institutions and government, as the apparatus of the administrative state has become increasingly untethered from and unresponsive to the collective will of the people as political economies evolved.16 Rising social inequalities and constitutional settlements that delegated power to technocrats produced a growing turn toward populists who promised to take on the political classes in the years before the pandemic. These populists in turn often undermined both long-established democratic norms and the legal institutions of liberal democracy. The pandemic was a stress test for democratic governance, which many countries failed and which affected possibilities of multilateral cooperation. By the time Russia invaded Ukraine in early 2022, the multilateral governance arrangements established after World War II had come to seem dramatically unfit for purpose in ensuring lasting peace, justice, and security. Today, advancing health and social equality calls for rebuilding and sustaining robust democratic institutions, together with shoring up the foundations of a fairer international order. These aims in turn demand reclaiming both public deliberative space and the institutional capacity necessary to regulate power asymmetries within and between countries.

Starting Points II: Health, Development, and Progress in the World The life-saving vaccines developed in record time during the pandemic underscore that advancing health rights in practice requires not just emancipation from predefined social roles, but also practical progress. Practical progress is, as Roberto Unger argues, a basis for “our power to push back the constraints of scarcity, disease, weakness, and ignorance. It is the empowerment of humanity to act

14 Introduction

upon the world.”17 In no domain is such progress and empowerment more critical than in health. Contraception, antiretroviral therapy, antibiotics, and childhood vaccinations, among many other scientific advances, have transformed the life chances of billions of people and continue to be critical in enhancing human flourishing. The question is what we collectively do with these innovations. Just before the pandemic, a series of articles and books were telling us that we were better off than ever before. These were cheery, optimistic tales about the accelerating march of innovation and practical progress we were making. In 2017, Oxford economist Max Roser notes, “The story that we tell ourselves about our history and our time matters.”18 He argues that child mortality has declined dramatically, while basic education (intimately related to health) has exploded. Similarly, Gregg Easterbrook tells us we should be optimistic because the state of the world “is better than it looks.”19 In 2018, Stephen Pinker argued that the Enlightenment had worked; we now apply reason to enhance human flourishing around the world.20 Indeed, in health there has been tremendous progress toward the eradication of many preventable infectious diseases and the commutation of what were previously death sentences into chronic conditions for rare cancers and the like. Scientific communities regularly announce discoveries that offer many more healthy years of life expectancy and a potential cure for certain horrific diseases through new technologies such as gene editing. The pandemic underscored, however, that there is a second, far darker story about the gaping disparities in public health and biomedical advances and their drivers. Studies have shown that Latino and Black individuals were significantly more likely to test positive for COVID-19 and that Asian Americans were more likely than white Americans to require ICU admission or hospitalization. This is not new. For example, although the absolute rates of infant death have declined by over 90 percent due to improvements in nutrition, hygiene, and health care, the gap between Black and white infant mortality in the United States (11.3 versus 4.9 per 1,000) was greater just before the pandemic than it was in 1850, before the Civil War that ended slavery.21 Similarly, at a global level there is no sharper evidence than the vaccine and treatment apartheid that emerged during the pandemic that the promise of a “grand convergence” in health by 2035 remains a utopian fantasy at best.22 At the end of 2021, a year after safe and effective vaccines were made available to the public, only 0.7 percent of total vaccine doses worldwide had been administered by low-income countries whereas the United States and other high-income countries were already receiving the first of what would become repeated booster shots. This too is not new. The average life expectancy for a child born today



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in Swaziland is 49 years; in Japan it is 84 years.23 A woman in South Sudan has a greater chance of dying in childbirth than of graduating from primary school.24 Even before the pandemic, never in history had life chances—and life choices—been so unevenly determined by the arbitrariness of where one is born. Divergent economic recoveries from the COVID-19 crisis across high-income and low-income countries can be expected to further deepen inequalities and in turn life chances. The story we tell ourselves about progress in the world does matter, as Roser says, and it depends on how we understand health, development, and progress in the world. My first starting point with respect to health is that inequalities matter because health is closely connected to a life of dignity and therefore has special moral importance to us and to a democratic society. After all, not all inequalities raise the same concern. We may feel it is cramped and undignified to travel in economy class as opposed to the opulence of first or business class, but everyone on the plane shares the same risks of travel and arrives at the same time. In a world of ever-present marketing, we are constantly seduced into believing that we are defined by our consumption, but in most cases possessing more things does not determine our life chances. Health is different. Across all cultures, people have prayers and expressions that reflect the importance of health to our lives. The Rawlsian ethicist, Norman Daniels, argues that health enables a preservation of a normal range of opportunities to pursue our life plans and participate in society; Amartya Sen asserts that health constitutes one of “the most important conditions of human life and a critically significant constituent of human capabilities which we have reason to value.”25 In turn, the intimate connection between health and dignity implies that the state has a role to play in leveling the playing field. To be clear: that does not mean equalizing everyone’s health status; it means adopting the legal and institutional measures necessary to spread the benefits of scientific progress equitably and provide fair chances to access the preconditions for health as well as care for diverse people within their territory. On a global level, the debacle of capitulation to pharmaceutical monopolies during the pandemic, together with irrefutable evidence of disparate responsibility for loss and damage in the environmental sphere, have accelerated broader recognition that states also have extraterritorial obligations with respect to transboundary activities. My second starting point is that we care particularly about those health inequalities that we see as arbitrary, avoidable, and fundamentally unfair. Not all illness and death can be ascribed to injustice; much can be chalked up to genetics

16 Introduction

and even bad luck. The task of health justice is to identify and address those socially controllable factors that result in avoidable deprivations of health and arbitrary inequalities. Doing so calls for enlarging our gaze beyond biological or behavioral causes of disease to systemic discrimination and political economy factors, which relate to how political institutions and the economic organization of society, influence each other. For example, according to Jo Phelan, Bruce Link, and Parisa Tehranifar, race is a “fundamental cause” of health inequalities in the US because it correlates with multiple risk factors and influences multiple disease outcomes; further, there is an association between race and health because of a disparity in resources due to racialized wealth distribution.26 As a result of the interplay of factors, the association between race and health persists across diseases. We need not accept a genetic construction of race to acknowledge that living as a person of color in the US is associated with increased morbidity and mortality—in the pandemic and in normal times. Even when specific diseases such as COVID-19 are tackled, other conditions reveal racial disparities because of patterns of systemic racial injustice, which permeate housing, education, and other social determinants of health—as well as the health system. My final starting point is that meaningful progress in the world, and human development, requires tackling what Amartya Sen calls “unfreedoms,”27 which include systemic barriers to accessing social rights such as health and education, as well as infringements of civil and political rights that limit life choices and chances. Taking development as freedom seriously calls for recognizing that future generations should have the same array of capabilities as we do today, which in turn implies an urgent need to stem climate-related loss and damage and invest in mitigation and adaptation. Sustainable economic growth can drive practical progress in health and living conditions. Moreover, sustainable economic growth can advance human development when it leads states to enhance public goods, from clean air and water to public health and education, which have benefits for future generations as well as people alive today. Nonetheless, not all economic growth has equal or equally distributed social benefits and costs; sustainable growth must include reducing the costs of environmental degradation now and in the future. In short, economic growth is positive when it is a means to greater human flourishing for current and future generations; we will see beginning in the 1980s that societies lose their souls, and the planet gets ravaged in the process, when unqualified economic growth becomes an end in itself.



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With these intertwined starting points, I use the lens of health to examine the advances we have made and challenges we still face in using human rights frameworks and tools to promote greater social justice in the world. I conclude that these two truths coexist: on the one hand, we have achieved transformations of laws—and lives. On the other hand, we have too often accepted episodic victories in ESC rights, including health, achieved in the context of institutions and assumptions that too often have gone unchallenged.28 Yet, far from an account of despair or nihilism, this book is a call to re-­ envision our collective efforts toward social transformation in health and beyond. Throughout this history, “ordinary” people have continuously pushed the bounds of what once seemed impossible in human rights. There is no reason that, with reflective, critical praxis spanning multiple fields, human rights cannot join other progressive social movements in reimagining institutional possibilities in our globally interconnected world.

In 2016, I was in far more sinister tunnels than those under Harvard Law School: the labyrinth of the Mangapwani slave caves in Zanzibar. We had lived in Tanzania for years, so this trip with my teenage son was a return to familiar terrain. I was visiting the maternity ward of the Mnaji Mmoja Hospital, the main referral hospital for the three islands that make up Zanzibar. Compared with many of the maternity wards across mainland Tanzania and other countries in Sub-Saharan Africa I had seen over the years, Mnaji Mmoja presented a welcome sight. Each laboring and postpartum woman was covered by a khanga in her own bed; there were no pools of blood, urine, or feces on the floor, and none of the unattended moaning and screaming that fills so many of the facilities in which we demand women bring forth life. I was not surprised as a friend and colleague, Dr. Tarek Meguid, who was then-head of the maternity service, was a tireless champion for providing women with high-quality and dignified care. Nonetheless, as Tarek and I both knew well, the drivers of structural problems in maternal health care cannot be fixed by even the most committed team at the care delivery level, and evidence of systemic issues is never hard to find, from stock-outs and supply chain blockages to budgets and financing. Health spending in Zanzibar was USD 25 per person per year in 2018, with only a fraction going to maternal-child health.29 At one end of the long labor room, there was a small separate area housing several incubators for babies born prematurely, a phenomenon disproportionately

18 Introduction

affecting low-income countries because of health conditions in mothers, from HIV, malaria, and tuberculosis to intestinal parasites and malnutrition. Although designed for a single child, scarce funding meant that each plastic container held multiple tiny babies and in turn the hopes and fears of multiple families. Just before the pandemic in 2020, maternal mortality in Tanzania was estimated at 329 deaths per 100,000 live births—three hundred times higher than the maternal mortality ratio in Ireland or Croatia.30 Moreover, that maternal mortality ratio may be a serious underestimate as we do not care enough about the lives of poor women and girls to carefully count their deaths; global estimates absorb layers of uncertainty in their algorithmic arrogance. The day I visited, the gigantic challenge of collecting and analyzing information in a way that fosters meaningful corrective action was evident from the mountains of records from earlier years stacked in piles on the ground floor. Looking out from a terrace toward the brilliantly turquoise Indian Ocean, the dhows moving languidly across the horizon—in which fishermen were using the same techniques they had for centuries—contrasted sharply with the fancy resort hotels that dot the shores of Stone Town. Zanzibar is a magnet for development donations as well as luxury tourism, and sometimes the lines between the two blur; Bill Gates owns a private island off the coast of one of the three main islands. From the terrace of the hospital, a large new neurology pavilion was visible; it had recently been completed with donations from a Spanish foundation, raising the eternal question: How are priorities set in global health and by whom? Perhaps no issue demonstrates the injustice embedded in the moral and political economies of global health more than maternal mortality. Globally, approximately 95 percent of the estimated 295,000 maternal deaths in 2017 occurred in low- and low-middle-income countries.31 While we saw gross inequity in access to vaccines and therapeutics during COVID-19, almost all maternal deaths are preventable with interventions we have known about not just for a matter of months or a few years but for three-quarters of a century. That they are still not accessible to millions of women and pregnancy-capable persons around the globe speaks to the status of members of society who bear the burden of social reproduction, desperately inadequate and underfunded health systems, and lack of interest from institutions in the economic North. Deaths from unsafe abortions, which account for approximately 11 percent of maternal mortality worldwide, are overwhelmingly due to legal restrictions on this lifesaving procedure that relegate half of humanity’s life plans to



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insignificance. As Mahmoud Fathalla, former director of the International Federation of Gynecologists and Obstetricians, noted in 2006, planeloads of people in the prime of their lives are not dying every day from diseases we do not know how to treat; “they are dying because societies have yet to make the decision that their lives are worth saving.”32 As my friend, Tarek, had often argued, when we stop asking how these patients died (hemorrhage, sepsis, preeclampsia, etc.), we can see that why they die invariably relates to the lack of agency poor women and girls have in their lives. As the many examples in this book attest, maternal mortality is in no way unique. Any number of egregious health inequalities and deprivations within and between countries are the product of what Paul Farmer called “pathologies of power,” as much as biological or behavioral factors.33 And there is no place like Zanzibar to realize how those pathologies of power are inextricable from the chains of history. Zanzibar was a shipping point for slaves from all over Central and Eastern Africa, from Kenya and Uganda to the Congo and Tanzania. The British had formally outlawed the slave trade in 1897, when Tanganyika and Zanzibar were protectorates. But a famous Arab slave trader named Tippu Tipp continued to use the Mangapwami caves and tunnels clandestinely until as late as 1905. The story of Zanzibar and the brutal Arab slave trade belies the tidy mapping of historical injustice onto axes of West–East and North–South. On the day we drove to Mangapwami, there had been one of those pelting, bruising downpours common during the rainy season. Passing villages without paved roads, electricity, piped water, or sanitation but replete with places to charge cellphones and purchase SIM cards, the disconnect between the promises of technological innovation and the conditions necessary for living lives of dignity was impossible to ignore. When we reached the caves, they were half-inundated after the long rains and the coral was extremely slippery. I made my way carefully, wading through the watery blackness. Our guide, Abdul, was a tall, lanky young man about the same age as my son Sam; the two quickly moved on ahead of me. Abdul looked back from time to time, “Sawa Mama?” he asked in the familiar Swahili. “Sasa sawa, asante—All OK, thanks.” But it was impossible not to be viscerally affected by the oppressive heat and humidity magnified in the almost total blackness of the tunnels, not to shudder at the terror and anguish the men, women, and children must have felt, having been ripped away from their lives and loved ones and everything familiar to them, made to travel miles under brutal conditions,

20 Introduction

to be held here before being sent onward, shackled together with heavy bronze anklets in long rows twenty-four hours a day. By the time we got out of the caves, it had stopped raining. We stood catching our breath, adjusting to the light, and taking in what we had experienced. I exclaimed “What a torture!” Abdul asked me what the word meant and for me to type it into his cell phone. “I have learned something,” he said, smiling broadly and repeating “too-chur.” Yes, torture. “Very heinous [hee-ness] things man does to man,” Abdul said. And, looking at his feet, added “For greed.” Indeed. Abdul was filled with curiosity about the world beyond the shores of Zanzibar; he had taught himself English by listening to the BBC broadcasts that came on twice a day. Given a different starting point in life, he might have been a diplomat, an entrepreneur, or perhaps a professor of East African history, about which he had taught himself a remarkable amount. As we walked, Adbul asked Sam why Donald Trump hated Muslims. “What does he think we are? Why does he say those things?” Sam shrugged, looking down at his own feet then, embarrassed, and said, “He just makes stories and stuff up . . . and he’s crazy.” We all nodded and repeated together, “Yes, he’s crazy.” As human beings, our responses to facts and conditions are uniquely conditioned by our beliefs about what things mean, which is fundamentally about the stories that we choose to believe. The lies of ethnonationalism, from Trump and many others, are but one example. Historically, colonialism justified the exploitation of whole populations based on narratives of inferior and superior cultures; colonialist health systems and global health governance continue to do so today, if not always explicitly. The slave trade’s nefarious commerce was based on a story about who was (and was not) human. Nazi atrocities were rooted in another racialist story about the need to protect the Aryan population from subhuman Jews, Roma, non-hetero-conforming individuals, and persons with intellectual disabilities, among others. And women have been perpetually socially and legally constructed as other and less than—as fragile virtuous maidens confined for our own protection, dangerous seductresses to be controlled through brutal means, or deviant lesbians whose lack of sexual attraction to men is seen as imperiling the natural order. The social architecture of Harvard University is designed for some students to inhale the significance of their own lives, and many go on to live up to those expectations. But it should not require a pandemic that disrupts our most basic sense of control for all of us who walk through the world with multiple layers of privilege to recall the contingency of our own entitlement. Meritocracy is often



ALLEGORIZING THE WORLD 21

another myth that serves to legitimate decision-making by educated elites for ‘ordinary’ people, while erasing all the background conditions that enable people to choose the lives they lead. It should not require that we have forebears who might have travelled through those caves—as Barack Obama’s ancestors might have done—for us all to recoil at the crimes against humanity that slavery entailed and to understand that we are still grappling with the ongoing toll of that global injustice. The fact that today, in the 21st Century, a girl or woman who happens to grow up in Zanzibar rarely has the most basic agency in her life should outrage all of us who have the luxury of taking those choices for granted: choices about getting an education; about when and with whom she wants to have sex, and whether she want to use contraception; about how many children to have; and even whether the family will pay to take her to receive emergency obstetric care if her life hangs in the balance. If we are incapable of identifying with others whose lives have followed different narratives, we will never be able to dismantle the systems—colonialism and coloniality, racial supremacy, and patriarchy—that perpetuate such systemic injustices in order to begin to heal our world. Critical human rights praxis invites us to examine the stories we tell ourselves and others—in private spaces, from generation to generation, and as societies— to justify national and international policies. These are the stories that become the invisible scaffolding that contains not just our personal narratives but also sustains socio-legal and economic paradigms, defining both our knowledge and shared humanity in the process. In many respects, more than the development of legal norms, institutions, and procedures, the struggle to apply human rights to health centrally involves shifting allegories of what it means to be human on a shared planet, and why it matters.

Chap te r O ne

Indignation and Injustice It is in your economic policy where we find not only the explanation of this government’s crimes. . . . Wages are frozen and locked down while prices soar, past the sky-ward pointing bayonets of your rifles. . . . Nearly all the creative and protective functions of the state atrophy into utmost decrepitude. Only [the repressive] arm of the state expands . . . there will be no freezes or stagnation in the realm of torture and death. —Rodolfo Walsh1 Massive human rights violations involve what Kant deemed “radical evil”— offenses against human dignity so widespread, persistent, and organized that normal moral assessment seems inappropriate. —Carlos Santiago Nino2

for Berenice Chamorro to celebrate her quinceañera, a fifteenth-birthday party that is culturally important for girls across Latin America. Between 1976 and 1979, Berenice was living with her family in a suite of oak-floored rooms within what was then the “ESMA” (Naval Mechanics School; ESMA for its acronym in Spanish), the most notorious of the clandestine detention, torture, and extermination centers used by the Argentine civic-military dictatorship that brutally ruled Argentina between 1976 and 1983. Her father, Rear Admiral Rubén Jacinto Chamorro, alias Delfín (Dolphin), was in charge of the ex-ESMA and supervised Task Force 3.2.2, which ran the concentration camp and planned clandestine operations.3 Berenice’s quinceañera was held in the Salón Dorado, a converted ballroom on the ground floor usually used by the officers in Task Force 3.2.2 to review intelligence they had gathered through torture and to dole out new assignments. As guests danced and drank, hundreds of human beings who had been illegally IT WA S A B I Z A RRE P L A CE

22

Indignation and Injustice 23

abducted were being held in inhuman conditions just two floors above, in leg chains and kept hooded so they could not identify others or the place where they were being held.4 It was at the ex-ESMA that the diabolical plan to steal and sell the babies of female prisoners was hatched. Dozens of young women alleged to be subversives, many just a few years older than Berenice, gave birth in the ESMA on the third floor only to have their newborns taken from them.5 It is not implausible that one might have been in labor as the revelry at Berenice’s party was going on below. Virtually all the women who delivered were subsequently murdered; just as other prisoners were, most often they were injected with sedatives and then dropped while alive from planes into the Río de la Plata, the river that runs between Argentina and Uruguay. The infants were given false birth certificates and most often illegally adopted by military families—stolen from victims and their families as if they were just more of the loot that the military plundered. As a visitor, one is immediately struck by the suffocating intimacy that existed between abused and abuser. The ex-ESMA is a seventeen-acre complex of white buildings with red terracotta rooves in the capital city of Buenos Aires, close to the Jorge Newberry Airport from which the notorious death flights took off. But the center for torture and clandestine operations was located in a single threestory building. There, in what had been the officers’ club, were the Chamorros’s living quarters; naval petty officers slept on the first and second floors, while prisoners slept on the third floor and in the attic and were moved up and down in a small elevator to be tortured in the basement, most often with electric shocks. The military even adopted the Nazi technique of putting a spoon in a pregnant detainee’s vagina until it touched the fetus, and then applying 220 volts.6 Even for those not directly involved in the tortures, Tina Rosenberg writes, “there is no doubt” that all the officers in the confined space of the ex-ESMA knew that torture, forced labor, and extermination were going on.7 One of Berenice’s childhood friends, Andrea Kirchmar, later testified at the trial of junta members in 1976 that when she went to her friend’s home for lunch and a playdate, they watched a horror movie, Dracula, on Super 8 film and then played billiards. Through the window of the billiards room, the eleven-year-old Andrea saw a hooded and chained woman whose limp body was being dragged from a green Ford Falcon into the building.8 It is unclear exactly what Berenice understood—or chose to believe—about the real horror story unfolding under her own roof at the time she was living and having playdates in the ex-ESMA. But according to Andrea, on that visit or another she showed her friend a closet full

24 Chapter One

of weapons, including guns and a grenade, that her father kept in his quarters, as well as the pistol in his bedside table. Shortly after the quinceañera, Berenice moved to Cape Town, South Africa, where her father was assigned as naval attaché. Andrea stated that she saw her once more after that, saying she seemed to be a “kind of mummy. . . . She was quite detached, like a ghost.”9 After democracy returned to Argentina, either a haunting sense of guilt or an inability to reconcile her childhood attachments with what had happened must have become unbearable, because Berenice eventually committed suicide. Over five thousand prisoners were taken to the ex-ESMA during its ninetytwo months as a clandestine detention center; only a fraction emerged alive. The atrocities the junta committed became notorious, including the abductions by the death squads that trolled the streets in unmarked cars—often Ford ­Falcons—and the torture, murder, and disappearance of as many as thirty thousand people.10 Claiming to be the defenders of “tradition, family, and property,” the Argentine civic-military dictatorship categorized all opposition as subversive, to be eradicated to restore a nostalgic notion of what Argentina had been in a mythical past. Establishing a polarity between order and the existential danger of the uncontrolled masses (las masas), the junta took their fundamentalist economic and social visions to a hideously violent extreme. When the military’s grip on power began to fray, after a failed war in the Malvinas/Falklands and a tanking economy among other things, democracy returned to Argentina at the end of 1983. In an effort to ensure that nunca más (never again) would anything similar occur, a truth commission was established and trials were held not only to determine individual culpability for crimes against humanity and other human rights violations but also to engender broad public reflection on what made the dictatorship possible. The ex-ESMA itself became a piece of evidence, and the complex has since been converted into a museum and cultural space dedicated to promoting collective memory, not just for Argentina but for the whole of humanity. Walking through the building that housed the clandestine torture center now, it is impossible not to constantly ask oneself how this could have happened. As the words printed on the floor in one of the cramped attic rooms query, “How is it possible that women gave birth here?” By all accounts, one of Chamorro’s two main subordinates, Jorge Acosta, alias el Tigre (the Tiger), derived sadistic pleasure from devising and applying tortures; the other, Alfredo Astiz, entertained long conversations about literature

Indignation and Injustice 25

and music at all hours of the day and night with some of the inmates, even as he dropped human beings to their death out of a Fokker plane every week. Nonetheless, a vast literature on human rights abuses suggests that most torturers are neither psychopaths nor sociopaths. It is the conditions we create in society that facilitate or inhibit this ultimate dehumanization of others. Moreover, being in a closed system or institution such as the ex-ESMA makes it easier to buy into the ostensible existential threat posed by the victims as well as to go along with orders out of either fear or merely conformity. I originally became involved in human rights work in part because my mother’s family is from Argentina and I was deeply affected both by state-sponsored terrorism in Argentina, as well as by horror at the role of the United States in it. I grew up in a house of many coexisting truths and many lies, much like every home and every family everywhere. And as in almost every case—including in Berenice’s most horrifically extreme case—truths were transmuted into lies and vice versa. But I was fortunate to have a background of mixed national origins, social classes, and religions. The gift of being forced to struggle consciously with multiple and sometimes conflicting identities and truths from an early age is that sense of slight unease that causes us to pause rather than reflexively accept any prepackaged narrative of our own lives or events in the world. What happened in Argentina in the 1970s, and across the Southern Cone, was instrumental in galvanizing the world community around the importance of a supranational human rights system that could provide external accountability when internal democratic controls failed. Over the decades since the 1970s, advancing health through human rights has called for understanding what conditions are required for other widespread deprivations of dignity—from the torture and inhuman treatment many suffer in homes and health systems to the degradations of desperate poverty in a world of plenty—to produce the same sense of repugnance and outrage as what occurred in the ex-ESMA. Misfortunes and tragedies elicit sympathy and lamentation; injustices elicit indignation and remedies. Unlike the harms people suffered under the Argentine dictatorship, which were clearly organized and directly committed by state agents, the responsibility for most of the injustices we will discuss in these pages has become more diffuse and complex. Consider racial disparities in rates of infection and death within countries and global COVID-19 vaccine and treatment apartheid. Deploying rights claims always has and always will call for seeing the dignity and humanity in the other, whoever that may be. But acting on health issues as matters of injustice and formulating transformative remedies require

26 Chapter One

that we continually shift our understanding of what can be ascribed to human responsibility and societal causality. Although the account in this chapter really begins in the 1970s, when human rights arguably became the dominant language of human emancipation, it first sets out the context and conceptual foundations of international human rights law from its inception. It goes on to discuss three principal fault lines that explain the ascendancy of human rights in the 1970s as well as some of the framework’s historically determined limitations. First, situating the birth of the modern human rights movement in the post–World War II multilateral order, the chapter describes the separation of economic development and relations between countries from human rights, which addressed the relationship between individuals and their states. Second, as a result of Cold War politics and conceptualizations of rights, CP rights—for example, those that the military junta in Argentina ­violated—were privileged by the West. The artificial dichotomies under international law between CP rights and ESC rights, which include the right to health, had implications for the evolution of the human rights movement. A third fault line that reinforced the ESC versus CP rights distinction and had effects on women’s health and other rights in particular, emerged as a result of distinctions between private and public spheres in the traditional liberal state. Historically the idea that rights were curbs on the state in the public sphere precluded treating clandestine abuses of women and children in homes as human rights violations, and it continues to obscure the structural dynamics that deny women equal enjoyment of rights in practice. In the 1970s, social and legal mobilizations to obtain access to newly available forms of contraception as well as abortion began to erode the inextricable identification of “woman as womb,” as Simone de Beauvoir had described it.11 In 1979, the promulgation of the Convention on the Elimination of Discrimination against Women (CEDAW) was a milestone in advancing women’s human rights under international law. If early achievements of women’s movements around the world made visible connections between equality and control over our bodies as fundamental to life plans and dignity, they also surfaced heated contestation around the right to terminate a pregnancy. Struggles over abortion rights have become proxies for battles over gender equality, the roles of courts vis-à-vis legislatures, deference to medical opinion, and the boundaries between private morality and public policy. However, the trajectories of those struggles, and their implications for effective access to abortion services in practice, have played out very differently in different countries. The long struggle for reproductive justice in Argentina,

Indignation and Injustice 27

which began in the 1970s and culminated in the 2020 legalization of abortion provides an inspirational story about how deploying rights in constructivist ways can effect changes in laws and health systems and deepen the meaning of democracy for everyone. Finally, during COVID-19 normative scaffoldings built over decades in international law regarding gender equality and women’s rights were severely tested. The “shadow pandemic” of domestic violence revealed how unreliable the concept of privacy is for women, just as the pandemic exposed the urgency of rethinking the unremunerated care economy, which is overwhelmingly upheld by women. These hard lessons reveal the imperative of addressing structural features in political economies of care and social reproduction to advance women’s health-related and other rights and social justice.

The Beginnings of Modern Human Rights: Context and Concepts Multilateralism It is impossible to separate the international human rights enterprise from the Janus-headed aspirations that spawned it. In the first place, the creation of the United Nations was aimed at avoiding the catastrophe of another Holocaust and the breakdown of peace and security that World War II had entailed. Yet from its inception, international human rights law also contained within it the utopian aspiration of a world of equal dignity for diverse peoples with the elusive promise of an international order necessary to sustain it. The design of the postwar order represented faith in multilateralism—rulemaking through international organizations. The primary organization to project this vision was, of course, the United Nations, which took the place of the failed League of Nations. Admittedly, the United Nations was never designed to be fully “democratic” as the Security Council wielded outsized decision-making power by comparison with the General Assembly. However, the larger postwar vision of a multilateralism that would secure lasting peace and security included economic cooperation through what were known as the Bretton Woods institutions. These institutions were designed to be controlled by a small set of countries from Western Europe together with the United States. As originally established, these comprised the International Monetary Fund (IMF), the World Bank,12 and shortly thereafter the General Agreement on Tariffs and Trade (GATT), which had a small secretariat.13 To understand the genealogy of applying human rights to health, it is important to recognize that from the outset of the postwar order, there was a division between

28 Chapter One

political and economic multilateralism. In retrospect, the rulemaking and ruleenforcing authority of the Bretton Woods institutions, in conjunction with the wealthy member states that controlled them, would come to legitimate global inequalities in wealth and power in a way that the naked brutality of traditional colonialism could no longer effectively achieve.

Dignity and Rights The founding document of the modern human rights movement is the Universal Declaration of Human Rights (Universal Declaration), promulgated without dissent by the UN General Assembly in 1948. The Universal Declaration reflects manifold philosophical, cultural, and other influences, but the central notion of rights emerges from a liberal philosophical tradition in which the capacity for reason and conscience enables dignity and gives each human life distinct moral value. Thus, human beings cannot be used as instruments to achieve social goals. Torturing people for information or as punishment is the ultimate instrumentalization and erasure of an individual’s dignity, and in Argentina and elsewhere it was directly tied to the ends-justifies-the means logic of the need to “cleanse subversion.” However, there are countless ways in which policies reduce people to means to achieve others’ ends, whether demographic targets or economic goals. This fundamental idea of what being human means distinguishes the human rights field from conventional public health and mainstream economics, which are deeply influenced by utilitarian, or consequentialist, values. The liberal philosopher Immanuel Kant emphasized the intrinsic and incommensurable value of dignity: “Everything has either a price or a dignity. Whatever has a price can be replaced by [an] equivalent; whatever . . . admits of no equivalent, has a dignity.”14 Thus, when we understand health as a right because it is essential to people’s fundamental dignity, it follows that we cannot defer to the market to allocate preconditions for public health or health care as we might a simple commodity. On the contrary, the state has a role to play in ensuring fair equality of access to public health conditions and health care, as well as agency over well-being. Dignity, according to Kant, is a relational concept: our own dignity is bound up in a mutual recognition of others’ dignity and treating each other as ends and not means. This web of mutuality implied by dignity has been articulated in countless ways across religious and philosophical traditions, from the African concept of Ubuntu – ‘I am what I am because of who we all are’-- to teachings drawn from Judeo-Christianity to Buddhism to indigenous traditions. The North

Indignation and Injustice 29

American self-described ‘womanist,’ Audre Lorde, captured the implications of this understanding for social activism: “I am not free while any woman is unfree, even when her shackles are very different from my own.”15 This relational dimension of rights is critical to understand, as is the fact that rights operate in thick social contexts where diverse people have multiple and often competing rights claims. The imperative of dignity does not require unfettered autonomy, nor does it mean that people’s interests can never be negatively affected. There is nothing in ‘dignity’ that excuses not wearing a seat belt or a mask in a pandemic that might save other people’s lives; there is nothing about dignity that implies the freedom to dump waste or shoot a gun off anywhere one wants. Nor does acknowledging a right to health as intimately connected to dignity mean that we have a right to claim any existing medical treatment regardless of opportunity costs to others. In a democracy, the exercise of rights— both negative freedoms and positive entitlements—is always bounded by others’ exercise of rights.

Universality and Legitimacy in International Human Rights Law In the aftermath of World War II, where manifestly unjust national laws had facilitated the Holocaust, a critical mass of scholars and policy-makers believed that a supranational rules-based order was necessary to protect all people’s dignity, as well as international peace and security. The Universal Declaration, which contained both civil and political liberties and economic, social, and cultural rights, was promulgated as a “common standard of achievement” for all humanity. The nature of a body of higher law that aspires to enshrine a universal vision of justice is subject to debate. The Argentine legal theorist Carlos Nino argued that historically, the notion of depoliticizing law began with the French Declaration of the Rights of Man and Citizen (1789), where rights emanating from popular will were to be separated from the corroded law of the ancien régime, and this new secular but superior law could be infallibly interpreted through human reason.16 There have been similar efforts to treat the Universal Declaration as a set of pre-political rights, as “secular natural law.” And conservative initiatives, such as the so-called “Geneva Consensus on Promoting Women’s Health and Strengthening the Family,” which promote “human rights originalism” are aimed at rolling back SRHR and imposing a superior “natural law” that is decidedly not secular.17 Critics have long argued that such an ahistorical view of the Universal Declaration erases the geopolitical dynamics underpinning the origins of human rights.

30 Chapter One

When the Universal Declaration was created, representation of sub-­Saharan Africa, still shackled by colonialism, was notably missing, and the United States had legal segregation. Moreover, despite Eleanor Roosevelt’ s role in the process, the drafters were virtually all men. However, with all of its limitations, the drafting process did bring together leading jurists and thinkers from European, Latin American, North American, Islamic, Jewish, and Chinese philosophical, cultural, and legal traditions in an effort to establish a set of rights that would be valued across cultural contexts. In addition to critiques about the colonialist origins and premises of the Universal Declaration, other prominent skeptics of a universal code of rights have argued that without fundamental agreement as to cultural values, abstract principles are too vague to guide state practice. Jacques Maritain, the French philosopher who had been central in the drafting of the Universal Declaration, knew that it was difficult to conceive of a global agreement among people from different cultures and civilizations, spiritual families, and schools of thought.18 But he argued that the aim was not to agree on “the same conception of the world, man, and knowledge, but on the affirmation of the same set of convictions concerning action. This is doubtless very little. . . . It is, however, enough to undertake a great work.”19 We need not accept any particular origin story to note that philosophically, the Universal Declaration—the “constitution” of modern human rights law—was arguably based on what the philosopher John Rawls referred to as an “overlapping consensus” among many schools of thought.20 Evidence of shared concepts of human dignity and equality can be found in sources from Confucianism to Islam to Christianity, from the “Great Law of Peace” of the six Haudenosaunee indigenous tribes (1722) to the Mexican Constitution of 1917 to Franklin Roosevelt’s 1941 Four Freedoms speech. That is, as Maritain suggests, precisely by refraining from fundamental arguments over religious and philosophical conceptions of justice, an overlapping consensus on a set of rights as basic tools for dignity and equality could be reached, even when the grounds of this support may have differed. Another way of conceptualizing the Universal Declaration is as an incompletely theorized agreement, a term from social choice theory, which allows people with conflicting views to arrive at outcomes in concrete situations. To illustrate how an incompletely theorized agreement works in setting constitutional rules in national legal systems, Cass Sunstein notes that people who accept a general principle—for example, that murder is wrong—need not agree on what

Indignation and Injustice 31

this principle entails in particular cases such as abortion.21 Likewise, in setting out the right to life, the Universal Declaration did not have to specify the reasons for valuing life or its implications for myriad laws and policies. Both John Tobin and Jennifer Prah Ruger apply the incompletely theorized agreement to the right to health, which has been set out in numerous subsequent treaties under international law.22 Ruger says that this approach allows different but converging paths to agreement: “In dealing with collective choice involving numerous views and disagreements, incompletely theorized agreements can help bring participants in a public policy and human rights discussion to agreement on certain specific outcomes.”23 This makes sense: there may be multiple principles involved in establishing a right to any given health entitlement. For example, over the years multiple paths have been taken to arrive at an “overlapping consensus” on abortion rights under international law, from gender equality in health to freedom from structural violence to the self-determination necessary for a life of dignity. If the Universal Declaration, and international human rights law more generally, is understood in terms of incompletely theorized agreements, it points to a necessary process of deliberation to reach concrete understandings in specific social and normative contexts. There are formal rules about treaty interpretation under international law, which include looking to the plain text and the discussions in preparatory works for treaties (Travaux préparatoires). These are useful sources of interpretation; but a rigid formalism is untenable with respect to deploying international human rights law in progressive ways, and in no domain is this more true than with respect to health rights. Transforming abstract concepts of rights in international law into specific obligations relating to health occurs through dynamic sociolegal translation—what the late anthropologist Sally Engle Merry called “vernacularization.”24 Vernacularization is produced through dialogue between lived experiences and normative concepts, and is influenced by evolving scientific knowledge regarding what measures are appropriate and available. Through this process, which invariably involves contestation among national legislatures, courts, and multiple actors from civil society, the social as well as legal meaning of claims to dignity are constructed and reconstructed over time. It is how those claims are shaped in that process, together with background rules of the game, that determines the distributional consequences that deploying rights can achieve in any context. In turn, those vernacularized understandings of what health-related rights violations mean in people’s daily lives in specific country settings recursively influence the

32 Chapter One

creation of further norms, and the elaboration of their content through general comments and other guidance, at regional and international levels.

The Ascendancy of Human Rights and the Conceptualization of International Norms Human Rights and Development In the wake of decolonization, there were important early efforts to connect the promotion of human flourishing within and between countries and a more egalitarian global order. In 1968, the first World Conference on Human Rights, held in Tehran, declared that “the achievement of lasting progress in the implementation of human rights is dependent on sound and effective national and international policies of economic and social development.”25 In the 1950s and 1960s, economic theories developed by Argentine economist Raúl Prebisch, among others, focused on the structural effects of historically contingent power dynamics between countries in the “center” such as the US and Western Europe and countries in the “periphery.” Peripheral countries, according to this view are trapped in a vicious cycle of dependency when it comes to development because they provide raw materials and cheap labor to the global market and then are forced to import finished products at high prices from the center.26 Consider, for example, countries in Sub-Saharan Africa that export cacao or coffee beans to Europe or the United States and then face steep prices to import fancy chocolate and coffee brands. Further, when technology and knowledge economies overtake markets for industrial products, the relational dependence does not improve. The clearest example of this may be in medicine where research trials are often conducted on people in the global South, but medications or vaccines are not accessible to the populations once m ­ anufactured—as we witnessed in the COVID-19 pandemic. Structural dependency is not the natural order of things; it is the product of history and laws, including trade, debt, and investment regimes. And laws can be changed. Indeed, alternative policy proposals intended to protect the interests of countries at a disadvantage, such as import substitution, were integrated into policies in a number of states. At the time, a coalition of representatives from postcolonial states and the nonaligned movement were arguing for a “New International Economic Order” (NIEO), as a way of reducing structural inequalities among nations and reordering power in the world.27 NIEO was announced in a special session of the United Nations in 1974; later that year the UN set out a “Charter on the Economic Rights

Indignation and Injustice 33

and Duties of States.”28 When, in 1977, the UN Commission for Human Rights called for a report on the “right to development,”29 it provided encouragement for countries in the global South to argue for expanding human rights to include issues of international development between states. However, anticolonial and egalitarian aspirations embedded in the NIEO were espoused by some decidedly nondemocratic governments. Further, there was a conceptual tension in how individual rights coexisted with states’ claims to self-determination in the eventual nonbinding UN Declaration on the Right to Development.30 Sovereign self-determination could easily be used by governments to justify excluding disadvantaged minorities from social and political programs and from seats at the policy-making table. Western governments, often out of self-interest as much as principle, argued that newly decolonized governments could not be allowed to do as they pleased with their populations in the name of self-determination and a right to development. It is inaccurate, however, to argue that human rights blinded actors to the structural forces connecting lack of democracy with the global order. Indeed, in 1978 Antonio Cassese, the first UN special rapporteur to examine foreign assistance to the Pinochet dictatorship in Chile, which was an early adopter of the same neoliberal and economic policies adopted under the Argentine civicmilitary dictatorship, submitted a report to the United Nations. In that report, he concluded that such economic assistance “largely serves to strengthen and underpin the economic system adopted by the Chilean authorities, which in turn needs to rely on the suppression of civil and political rights.” 31 Cassese’s report was swiftly set aside by Western governments.

Struggles for Recognition, Not Just Class Another important thread in what legal historian Samuel Moyn calls “the ideological ascendancy of human rights” is that the postwar years into the early 1970s was an era of prosperity in the economic North.32 The world’s economy had grown at approximately 3 percent per capita per year between 1950 and 1973.33 In the late 1970s, economic growth would slow dramatically, leading to major political and policy changes. But in these postwar years, wages rose for working classes in countries and unemployment declined in the economic North. In the United States, the poverty rate declined to its lowest point—11 percent—in 1973.34 In the US and Western Europe, economic growth and diminished inequality through the early 1970s reduced the perceived urgency of the class struggle. Different groups—including women and racial and sexual minorities—began

34 Chapter One

clamoring for recognition and a right to their identity, not just an end to class exploitation. The 1970s were a decade of catharsis and confrontation, from the emergence of movements for gay rights (hereafter LGBTQ+ movements) to women’s liberation. Not surprisingly, there were also backlashes to the sweeping social movements that threatened to disrupt the core of racially stratified and patriarchal societies. For example, resistance to racial integration in the US played out in fights over local school district control and funding, and conservative groups in democracies as well as dictatorships invoked specters of family and societal dissolution in response to the dislocation that women’s claims for rights spurred. In 1979, when the UN Convention on the Elimination of All Forms of Discrimination against Women was promulgated, and the Argentine dictatorship was proclaiming its defense of Western Christian values, the Shah of Iran was toppled by a revolution that swept Ayatollah Khomeini’s particular brand of fundamentalist Islam into power, and in the U.S., backlash became organized against an Equal Rights Amendment and newly achieved contraception and abortion rights. Nonetheless, it was in this world of authoritarian dictatorships in some countries and struggles for greater recognition of diverse groups in others, that human rights came to be the dominant paradigm for human emancipation.

Conceptualizations of Rights; Primacy of Civil and Political Rights Over ESC Rights As Philip Alston argues, the inclusion of civil and political as well as economic, social, and cultural rights on an equal footing in the Universal Declaration “reflects a hard-fought ideological and political compromise . . . between capitalist and communist approaches in the 1940s.”35 However, this compromise did not hold during the Cold War, when the primacy of CP rights was championed in the West and ESC rights were championed by former Soviet bloc countries and others. During the Cold War, CP rights were separated from ESC rights not only ideologically but also legally, having been drafted into separate treaties—the International Covenant on Civil and Political Rights (UN Covenant on CP Rights) and the International Covenant on Economic, Social and Cultural Rights (UN Covenant on ESC Rights), which both entered into force in 1976. Largely aligned with the political interests of Western Europe and the United States, the dominant human rights paradigm became inextricably tied to the traditional liberal state and the understanding of democracy that it entails.

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In the traditional liberal state, the subjects of rights were assumed to be equal, autonomous individuals (generally property-owning men) who were free to pursue their own notions of the good in private. In the public sphere, the state would guarantee protections for limited rights related to (1) individual physical integrity (e.g., freedom from torture); (2) procedural protections for those deprived of liberty (e.g., due process of law); (3) formal legal equality; (4) freedoms of conscience, expression, association, and the like; and (5) political participation through periodic elections. These rights were conceived as shields against what the state could do to individuals. The archetypical, traditional liberal constitution with this austere set of rights is the US Constitution. That the edifice of the official international human rights system was initially built on this “right to be left alone” has had substantial implications for the conceptualization of state obligations flowing from categories of CP or ESC rights.

Situating the Right to Health Under International Law There is no right to be healthy, which would be absurd. Nor can a legally enforceable right to health include all “social determinants of health” that make up the “conditions in which people are born, grow, live, work, and age.”36 In any national context, the contours and content of legal right are drawn from international law, from national constitutions and legislation, and from judge-made interpretation—as we will discuss in these pages. Nonetheless, an important starting place to understand the right to health is the core formulation in international law set out in Article 12 of the UN Covenant on ESC Rights. There are numerous differences between the phrasing of the UN Covenant on CP Rights and the UN Covenant on ESC Rights. For example, Article 12(1) of the UN Covenant on ESC Rights does not state that “everyone has a right to” health (as rights in the UN Covenant on CP Rights are framed). Instead, it states that “States Parties recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.”37 This phrasing also differs from the definition of health as a “complete state of physical, mental and social well-being” that had been set out in the World Health Organization (WHO) preamble in 1946, although that definition has played an important role in breaking away from a purely biological or behavioral understanding of health.38 Indeed, the UN Covenant on ESC Rights itself does not actually define health; rather, Article 12(2) sets out steps to be taken “to achieve the full realization of this right,” including: “(a) reduction of the stillbirth-rate and of infant mortality

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Table 1.1  Formulations of rights obligations under UN Covenants on CP Rights and ESC Rights UN Covenant on Civil and

Immediately enforceable

Political Rights

No mention of resources limiting legal standard

UN Covenant on

Subject to “progressive

Subject to maximum of

Economic, Social and

realization”

“available resources”

Cultural Rights

(including from “international assistance and cooperation”)

and [provision for] healthy development of the child; (b) improvement of . . . environmental and industrial hygiene; (c) prevention, treatment and control of epidemic, endemic, occupational, and other diseases; and (d) [creation of] conditions which would assure to all medical service and medical attention in the event of sickness.”39 Thus the right to health under international law does not just comprise obligations to ensure medical care but importantly includes public health preconditions, such as water and sanitation and adequate hygiene. While the UN Covenant on CP Rights requires states to realize CP rights immediately, Article 2 of the UN Covenant on ESC Rights sets out that each state party “undertakes to take steps, individually and through international assistance and co-operation, especially economic and technical, to the maximum of its available resources, with a view to achieving progressively the full realization of the rights recognized in the present Covenant by all appropriate means, including particularly the adoption of legislative measures” [emphasis added].40 In practice, these different formulations were long used to justify treating ESC rights as mere programmatic aspirations or to indefinitely postpone implementation of the UN Covenant on ESC Rights by states, which is clearly unacceptable under international law. In truth, all rights have dimensions that are immediately enforceable and dimensions that are progressively achieved. Moreover, both CP and ESC rights contain negative freedoms as well as positive entitlements. For example, the right to health includes both freedom from involuntary treatment and an affirmative claim to access; likewise, the classic civil right to a fair trial requires affirmative measures to establish access to justice as well as due process of law. Nonetheless, scholarship emphasizing that CP rights were negative and ESC rights were positive, which was used to distinguish “real” legal CP rights and

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vague and programmatic ESC rights inadvertently or deliberately legitimated this view. As we will see, however, over the years the artificial dichotomy between ESC rights and CP rights has been significantly eroded in both international and domestic constitutional law. The language of “maximum available resources” was also not included in the UN Covenant on CP Rights. Again, all rights require resources. Think, for example, of the investment in electoral or criminal justice systems necessary to uphold CP rights. In part this is a consequence of how rights are financed. CP rights are universally financed out of general taxation and seen as part of the social contract. Many ESC rights, including health, are often financed through private as well as employer contributions, and through development assistance in low-income countries. This produces an obvious syllogism: real rights are embedded in the social contract and are therefore financed through taxation; health is often not financed fully through general taxation and therefore is considered not a real, legally enforceable, right but instead a programmatic aspiration. Likewise, the language of “international assistance and cooperation” is only in the UN Covenant on ESC Rights. Some scholars have argued that its inclusion was a ground-breaking recognition of an obligation for wealthy countries to provide poor countries financial and technical support in health. Others see this language as displacing attention from the structural drivers of inequalities and the historical relations between countries, including colonialism, which proponents of the NIEO had pointed out. The two sets of rights were treated distinctly by an international human rights advocacy community dominated by northern nongovernmental organizations (NGOs). Aryeh Neier, who played an influential role in shaping the international human rights movement as “apolitical” and “classless,” first as founding director of Human Rights Watch in 1978 and later as president of the Open Society Foundation, had long argued that ESC rights were essentially political, not suited to judicial decision-making and so not real rights.41 Today, health rights are enforced across the globe in countries of varying resource levels and all rights are recognized to have dimensions that are immediately enforceable and dimensions that require legislative and other measures. Yet the narrow view of human rights continues to dominate much political discourse, as well as work by many northern NGOs and much of the official UN human rights system. At the same time, recent critiques of human rights writ large too often conflate this narrow position with the much more diverse global human rights community. Groups that are largely but not exclusively in the global South have long

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deployed rights as part of economic and social justice struggles; human rights groups in Argentina and elsewhere were from the outset keenly aware of the connections between structural economic exclusion and political repression. Today a far more diverse set of practitioners, scholars, and movements has embraced the use of human rights to address social and economic justice issues from budgets to tax justice, from access to medicines to climate change and from environmental extractivism to debt burdens.

Women’s Rights in International Law: Concepts, Evolution, and Continuing Challenges Public versus Private A third fault line in the conceptualization of human rights stems from the fact that what Simone de Beauvoir first referred to as women’s “lived realities” have challenged an array of notions in traditional liberal thought and in turn international law.42 That is, the rigid dichotomy between public and private realms in the traditional liberal state excluded many of the most pressing issues in women’s lives from being considered matters of justice and rights at the time. To be clear: the public/private divide is not natural or immutable; all “private” activities occur within a background structure of legal entitlements regarding what persons can do to themselves and others, and the resources to which they can make claims. Nonetheless, in the 1970s, “public” and “private” appeared as two extremes in international law. Actions by state actors under a dictatorship—as in the torture and disappearances in Argentina—were recognized as human rights violations. By contrast, physical and sexual violence in the private domain of the home was not considered in law, or much public discourse, as an issue of equal dignity. Moreover, even when, in the early 1990s, international law and constitutional law began to acknowledge that human dignity is intrinsically related to nondependence— “no citizen shall ever be wealthy enough to buy another, and none poor enough to be forced to sell himself,” according to Rousseau43—they often did not include women’s lived realities. Sexual divisions of labor and power are intertwined and reinforce each other. When men are breadwinners in the public labor market and women are unremunerated caregivers in the private domestic space, it belies the non-dependence to be able to pursue one’s life plans, including leaving a certain job—if that job is wife and mother. For women, sex work is criminalized in many societies because women are not allowed to use their sexual labor for financial independence. At the same time, de facto transactional sex in loveless and even abusive unions around the world is still justified as part

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of the “traditional family”; indeed, marital rape is still not typified as a crime in many settings today. Feminists expanded our understanding of how power operates to deny dignity: from the power over people located centrally within the legal organizations of the state to making visible the networks through which power constitutes our gendered identities and shapes intimate as well as social relations. Addressing the diverse needs of women (as well as children and LGBTQ+ persons) for both protection and agency across spheres defined as public or private has required creatively reinterpreting constitutional and international human rights law over the years to establish a causal nexus between private behavior and state responsibility.

Evolution in International Law and Practice It was in the 1970s that in many countries women’s lived realities were beginning to change as a result of women’s liberation movements in countries around the world and the advent of scientific progress, such as contraception, which together offered the possibility of emancipation from preset social roles. Women’s rights were hotly resisted in many countries as their recognition required reformulating traditional conceptions of the family. In Argentina, for instance, in the early 1970s the then-government’s discourse insisted that reducing birth rates would threaten the “future project of the country,” and issued a ban on contraception, which was extended and reinforced by under the junta. Nonetheless, tectonic changes were under way. In 1974, Bucharest, Hungary, hosted the first UN intergovernmental conference on population, which attempted to establish criteria for policies that respected the right of couples and individuals to decide the number and spacing of their children.44 In 1975, the UN secretary-general announced that 1976–1985 would be known as the UN Decade for Women, to advance equal rights for women.45 In 1979, the concerted organizing of women’s movements around the world led to the adoption of CEDAW, which entered into force in 1981. For the first time, a binding international treaty acknowledged the state’s role in setting the parameters for behavior across public and private spheres, political and sociocultural domains. For example, CEDAW Article 5 called on state parties to “modify the social and cultural patterns of conduct of men and women, with a view to achieving the elimination of prejudices and harmful traditional practices which are based on . . . stereotyped roles for men and women”46 [emphasis added]. In the late 1970s, this language was groundbreaking for international law; the

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patriarchal family and traditional gender roles were not only widespread but vigorously defended by conservative regimes from the military in Argentina to the new revolutionary government in Iran, to conservative evangelical groups in the US. Breaking down stereotyped roles for men and women opened the door to integrating into international law understandings of gender as a social construct based upon custom and power relations as much as biological sex. CEDAW began to expand our understanding of women’s needs for not just formal but substantive equality. Formal equality seeks to eradicate arbitrary legal differentiation, which had often excluded women from both many forms of formal employment and the public deliberative arena. A quintessential example of women’s exclusion from civic space was not allowing them to sit on juries in all fifty states in the US until 1973.47 Likewise, around the world women began to fight for equal parental rights, equal protections for male and female workers with family responsibilities, legalization of divorce, and pension entitlements for married spouses. However, formal equality based upon inserting women into the legal regimes and institutions that are constructed around men often ignores the sociopolitical contexts that underpin women’s actual, lived realities. Thus, formal equality alone can obscure and even impede transforming the power relations that systematically disempower women. Granting substantive equality requires measures that enable the effective enjoyment of rights by diverse women on an equal footing with men. For example, it might require additional positive measures to enable women to achieve equal educational attainment with men; these additional measures are explicitly not discriminatory under international law. In terms of health care, CEDAW not only prohibits formal discrimination against women; it sets out that women’s differential reproductive health needs must be considered in order for them to fully enjoy meaningful equality of health rights with men.48 Although women faced both formal and substantive discrimination in every country of the world when CEDAW was promulgated, there was virtually no data available to show how bad things were. Indeed, even as late as 1991, a report by the UN entitled “The World’s Women 1970–1990: Trends and Statistics” called for data on domestic violence, which it described as “unmeasured but almost certainly very extensive.”49 Without the most basic empirical information about the discrimination that diverse groups of women faced, it proved difficult if not impossible to mobilize the political branches of government to effectively address issues conceptualized in CEDAW.

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In women’s health, the situation was equally stark. Women were almost never included in clinical trials and in the 1970s women’s health was still measured in terms of fertility and treated largely as an appendage to children’s health. It would take another decade before evidence began to accumulate that women’s health needs to survive pregnancy and childbirth were entirely different from those needed for babies’ survival. The clandestine nature of abortion made it even more complicated to estimate the number of abortions, who was having them, who was providing them, and who was dying from them. If CEDAW helped to generate urgency for collecting data on women, scientific innovations were critical to the social and political movements for women’s liberation generally. Oral contraception had been approved in many countries in Europe and in the United States in the 1960s, and by the early- to mid-1970s tens of millions of women around the world were using it; this was a game changer. In 1969, the UN Fund for Population Activities (now the UN Population Fund, or UNFPA) was created, and in the 1970s the era of state-sponsored family planning began.50 Access to oral and other forms of woman-controlled contraception in the 1970s unquestionably advanced women’s reproductive autonomy and sexual agency, which the Argentine junta among other governments resisted aggressively. However, the entanglement of contraception with state control of women’s fertility is a theme that we see played out in synergy with colonialist impulses in global health throughout this story, and it is one that continues to this day. Indeed, it is impossible to understand the struggle for women’s health rights without understanding the ambivalent relationship between women’s health and androcentric biomedicine, which has both freed women from traditional roles and been used time and again to regulate women’s bodies.

Abortion Struggles, Reproductive Justice, and Democracy Perhaps no issue more clearly illustrates the complexity of using rights to advance gender equality than abortion struggles. Contraception can fail, is often unavailable, or is not negotiable with male partners or predators. Pregnancy is too often the result not of loving creation but of brutal subordination. Abortion therefore entails a right to security from the unwanted appropriation of a one’s body—a kind of imposed slavery51—and the often irreparable damage to a person’s life plans from a forced pregnancy, or even maternal death. All persons who gestate, including transgender men, require access to abortion as well as other obstetric care.

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However, in the 1970s it was women’s movements that began to mobilize for abortion rights. Legislatures were not inclined to pass laws liberalizing abortion at the time, so feminists turned to courts. The two leading early cases on abortion are Roe v. Wade in the US Supreme Court in 1973 and BVerfGE 39,1—Abortion I in the Federal Constitutional Court of (West) Germany in 1975. In Roe, the Court interpreted a right to privacy under the Due Process Clause of the 14th Amendment to include a woman’s decision to have an abortion; finding that the state’s interests in preserving life became stronger over the course of a pregnancy, the Court linked the right to fetal viability.52 Roe followed an earlier case on contraception, Griswold v. Connecticut (1965), in which the Supreme Court established the basis for the right to privacy in certain intimate practices as a right to “protect[ion] from governmental intrusion.”53 This was a classical liberal notion of rights acting as shields protecting a sphere of autonomy. As many scholars, including Robin West, have noted, “women need the freedom to make reproductive decisions not merely to vindicate the right to be left alone, but often to strengthen their ties to others.”54 Locating abortion rights in the right to privacy, as opposed to recognizing the “web of interlocking, competing and often irreconcilable responsibilities and commitments”55 faced by women, allowed the Court in later decisions to preclude state funding for abortion for poor women and to place significant restrictions on access as long as they did not “unduly burden” exercise of the right.56From racial barriers to needs for child care or leave from work to geographic distance and transportation costs, let alone fees—the structural constraints on abortion were systematically organized out of the fictional legal narrative that women made these choices in an autonomous vacuum. By the mid-1990s, Black women activists in the US had founded a movement for reproductive justice that centered the contexts necessary to enable meaningful choice not just about pregnancy termination but about when and whether to have children and raise them. The reproductive justice framing, closely aligned with and influenced by international struggles for sexual and reproductive rights, became all the more urgent for legal and social organizing when the fifty-year-old precedent of Roe was overturned by a newly established conservative supermajority in Dobbs v. Mississippi in 2022. The genealogy of abortion rights has been very different in other countries. In BVer-fGE 39,1–Abortion I in 1975, the Federal Constitutional Court of (West) Germany held that respect for human dignity required criminalization of abortion in all but exceptional circumstances called indications (Indikationen).57

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These included cases involving the life or health of the mother and rape. The Court specifically rejected the reasoning in Roe.58 However, it recognized that pregnancy entails a positive obligation, of a uniquely intensive nature, for a woman to care for the future child with her own body. The West German Federal Court, and later courts across Western Europe and Latin America, found the sui generis nature of that obligation makes the duty to carry a pregnancy to term unenforceable under certain circumstances—and better addressed through counselling than criminalization. The interpretation of the circumstances under which a person has a right to terminate a pregnancy, as well as the nature of counselling, has shifted to expand abortion access over time in Germany, and abortions are paid for by the state. Over the last half century, abortion battles have been proxies for contestation over personal morality and public policy, the relationship between international and national law, and the role of women and other pregnancy-capable persons in democratic societies. Until 2020, in Argentina, like most Latin American countries, provided for a regime of exceptions based on the 1921 criminal code.59 In a heavily Catholic country, the default of prohibition led to a web of informal and background rules in health institutions as well as police and judiciaries that chilled the possibility of gaining access even when they met legal indications, such as a threat to the health of the mother. In turn, these negative informal norms that led to denials of women’s rights contributed to high numbers of unsafe abortions, maternal deaths, and profound stigma around the issue.60 Since Argentina’s return to democracy at the end of 1983, feminists have iteratively broadened rights for women, from parental rights to divorce, from workplace protections to political representation—to abortion. Feminists argued that all people, but especially women, require control over their reproductive capacities to carry out their life plans and to fully participate in society. As conceptualizations of rights related to health, freedom from violence, and gender equality evolved in international law as well as in domestic constitutional law over the last forty years, advocates and local institutions, including courts, shifted the legal and political discourse of default criminalization to a default of recognizing and respecting the conditions under which gestating persons had legal rights to claim. Since 2005, lawyers and social movements, formal and informal providers, human rights groups, labor federations, and many others came together in a broad national campaign to change the legal framework altogether. Feminists had long combatted the high rates of violence against women, including femicides. The Ni una menos (Not One Less) campaign that emerged in the mid-2010s in

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Argentina solidified initiatives for abortion rights of all gestating persons as part of a broader struggle against a social order permeated by structural violence. For activists, the violence of abortion was also reflected in domestic violence, femicide, violence in the workplace, and violence against the environment. In other words, abortion was embedded in other struggles and sovereignty of women’s bodies was not perceived as just a question of individual choice. The Marea Verde (Green Wave), identified by the green kerchiefs activists wear, repeatedly occupied public space with mass mobilizations on the streets of Buenos Aires and throughout the country. In 2018, when legislation to decriminalize was debated in Congress and seven hundred testimonies from a wide array of academics, advocates, public health researchers, and religious and civic leaders were livestreamed, abortion shifted from a taboo subject enclosed in discourse of religion and morality to one that opened the broadest public debates in Argentine history. Discussions of abortion rights and reproductive justice were not confined to the legislature but took place in cafes, comedores populares (soup kitchens), and schoolrooms, on buses, and around kitchen tables. That process of social decriminalization was critical for the struggle to change the formal law. After an initial narrow defeat in 2018, activists continued to mobilize support persistently for legalization, even after the pandemic began. The passage of Law 27.610 in 2020, legalizing first-trimester abortion, and in cases of rape and threats to the life or health of the pregnant person throughout prgnancy,, was an extraordinary milestone in a long struggle to en-gender Argentina’s democracy.61

Continuing Challenges to Women’s Health and Other Rights: What the Pandemic Exposed62 Most of the attention surrounding privacy violations during the pandemic focused on the sweeping forms of digital surveillance that it ushered in, which now threaten to become permanent modes of social control in many countries. However, the right to privacy in international and much of constitutional law not only protects individual autonomy and the ability of the individual to control vital aspects of life, including personal intimacies; it also protects the sanctity of family life in the home. How the public/private divide is drawn and how it structures legal entitlements has tremendous significance for women’s lives. Erasing protective borders around a domestic sphere leaves everything that happens in the home open to interference by the state, from contraceptive use to sexual practices to criminalization of medication abortion to government-imposed drug tests for pregnant

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persons. Government regulation of activities in the private sphere is invariably weaponized to control racial minorities, LGBTQ+ people, immigrants, and other marginalized groups. At the same time, a rigid sphere of privacy shields the abuse that can occur in the family home. The indeterminacy and ambiguous implications of privacy has led Martha Nussbaum to call it “the most untrustworthy and compromised of concepts” for women.63 Since the 1970s, women’s rights advocates have had to walk a fine line, arguing for the enjoyment of rights to be extended to the private sphere but for not inviting the state into private domains to define deviance. Sometimes their efforts have not had the intended effects. For example, evidence shows that mandatory arrest laws for domestic violence have not reduced intimate partner abuse in the US, but they have exacerbated the underprotection of Black women with overpolicing. Moreover, individualized carceral solutions reify the status quo and deflect attention from the structural drivers of domestic violence. Domestic violence is no more just an individual act of violence than is the torture of one person in the ex-ESMA. Although intimate partner violence (IPV) is not exclusively committed by men against women in heterosexual relationships, it is integral to the systematic subordination of women that prevents them from enjoying equal rights—both freedoms and entitlements—in the public domain. Rates of domestic violence are often inversely correlated with women’s financial independence and earning power. Over the last fifty years, great progress has been achieved in eroding false distinctions in both national and international law between the public and private in relation to gender-based violence.64 Legal systems have been able to balance burdens of proof between the enforcement of restraining orders and the presumption of innocence. The masculinized definition of “torture” as limited to acts by state agents in the public sphere has also been significantly modified in terms of legal standards. In 2017, the CEDAW Committee declared that freedom from violence against women wherever it occurs could constitute jus cogens—a peremptory norm of international law akin to freedom from cruel, inhuman, and degrading treatment and perhaps even torture.65 Nonetheless, the infrastructures necessary to protect women (and children, LGBTQ+ populations, persons with disabilities and others) from domestic violence have not been put in place in countries across the world, or have not been adequately funded. Before the pandemic, one in five women reported experiencing IPV during the last twelve months, making it the quintessential example of endemicity in virtually every country around the globe. Yet, the so-called “shadow

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pandemic” unleashed by the lockdowns during COVID-19 underscored more widely how much further we must go in articulating what institutional arrangements are necessary to really protect diverse people from domestic violence without creating other injustices. According to Jacky Mulveen, project manager of Women’s Empowerment and Recovery Educators (WE:ARE) in England, COVID-19 lockdowns did not create abusers but they exacerbated abuse: “The abuser says, ‘You can’t go out; you’re not going anywhere,’ and the government also is saying, ‘You have to stay in.’”66 The institutions set up to protect people and to provide them with sanctuaries were restricted or closed because of the combined effects of the pandemic and already-reduced social spending caused by waves of austerity over the years.67 Mandatory mediation procedures, where they existed, and other civil procedures were often suspended. Carceral solutions, which had always disproportionately affected disadvantaged groups, came to seem fundamentally misguided to many more people during the pandemic as SARS-CoV-2 swept through prisons. Moving forward, the inflection point of the pandemic provides an opportunity to pay greater attention to the social and physical infrastructures necessary to ensure rights to be free from domestic violence in ordinary times as well as emergencies. In turn, this implies a stronger focus on structural inequalities built into our institutionalized social orders. Addressing structural inequalities goes beyond substantive equality, which focuses on obtaining specific services for women’s particular needs to put them in a position similar to men. Advancing structural equality calls not for a binary comparator with men but for examining how agency with respect to our lives is shaped by the economic and social organization of society. Table 1.2  Forms of inequality Formal

Similarly situated people are arbitrarily treated differently under law

Substantive

Differential starting points or specific characteristics (e.g., gender, race, disability) mean unequal enjoyment of rights in practice

Structural

Features of institutional order (e.g., political economy, design/ organization of institutions) produce patterns of subordination and inequalities in rights enjoyment, as well as in shaping norms

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For example, long before the pandemic there was an evident crisis of care and social reproduction across the world—a burden overwhelmingly borne by women. In the years before the pandemic women in Latin America and the Caribbean were spending three times as many hours on unremunerated care work than men on any given day.68 According to the International Labour Organization (ILO), globally men spent eighty-three minutes on unpaid care work per day while women spent almost five hours.69 Tasks range from fetching firewood and water to household chores such as cooking and cleaning to caring for children and elders. Just as with domestic violence, the effects of the organization of our care economies on gender equality are systemic—and the two are related. Unpaid care work prevents women from having outside employment and independent financial resources, which are associated with greater domestic violence as mentioned previously. Across a range of countries, women who are employed outside the home disproportionately work in informal service sectors as opposed to the formal economy in large measure because of the burdens of their unpaid care work. This status gives them few of the rights associated with formal employment, including salary protections. They can rarely unionize, and they are far more likely to be left without health insurance and social protection when they lose employment. And most heavily female jobs, such as child care workers, are notoriously underpaid. The disproportionate extraction of unpaid labor from women enables employers in the formal economy to treat care work as invisible and, in turn, lowers wages for everyone, not just women. Well before the pandemic, it was apparent that seeking caregiver parity between the sexes was radically inadequate to address the structural nature of the crisis in the care economy. Diane Elson, Radhika Balakrishnan and others argued that in this post–industrial age, unremunerated care work needs to be recognized (made visible in its scope and impact), reduced (through institutional change), and redistributed (not just within families but through broader societal change).70 Likewise, Nancy Fraser has proposed a “universal care-giver model,” where all people share bread-winner and care-giving responsibilities, but the strain of doing so is eased by public financing and different institutional arrangements.71 In many countries, we currently do the opposite, doubly burdening women. For example, community health workers (CHWs), who take on community care on top of their caregiving at home, are overwhelmingly women. In Sub-Saharan Africa, only 4 percent of CHWs (approximately 70 percent of whom are women)

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are paid, which amounts to a remuneration deficit that equals the GDP of some countries. Nonetheless, countries that do not privatize caregiving burdens, such as Norway and Sweden, offer social policies and financing mechanisms that move toward gender equality and social justice. In India, courts have begun recognizing the value of unpaid care work in civil judgments, which may catalyze social discourse and eventually policy.72 Moreover, the pandemic forced many countries to address greatly exacerbated caregiving burdens through emergency measures. In Argentina in 2020, the government created an “exceptional” payment for unemployed workers, including those in informal work and workers in private homes (registered or not).73 The crisis in care long predated and will endure long after the experience of living through COVID-19 fades from our minds. But the pandemic forced us to see the dimensions of the problem; it forced us to see that our way of being, which so many had come to take for granted, is not only unjust but quite obviously not working.74 As recognized in the 2022 “Regional Commitment of Buenos Aires on Women in Latin America and the Caribbean,” there is an urgent imperative for countries to establish permanent, robust, publicly financed, and universal social protection systems that recognize care work as real work—work that sustains the functioning of entire economies as well as lives of dignity.75 In Argentina, after the civic-military dictatorship fell many wanted to move on. But the collective reflections fostered through the truth commission and the trials held over time were essential to creating new institutions. After the painful lessons of the pandemic years, we cannot afford to unsee the fact that advancing gender equality must go beyond specific programs for women; it calls for restructuring political economies to provide public support for varieties of contributions to societal well-being across public and private spheres. In future chapters, we will see that adequately funding these infrastructures requires regional and global solutions in addition to national ones.

Understanding how the atrocities in the ex-ESMA could occur requires looking beyond the site itself. During the civic-military dictatorship in Argentina, schools functioned as surveillance sites; universities were infiltrated; agricultural associations became complicit; neighbors turned in neighbors. But it was the support and complicity of business elites in the civic-military dictatorship—as well as foreign banks and governments that was most critical. Numerous businesses colluded directly with the military, keeping lists of suspected sympathizers as well as trade

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union activists, many of whom were rounded up and tortured.76 There was a pathological reciprocity between support for the military and economic policies that were profoundly regressive and entailed vicious repression of labor rights and trade union activities. Moreover, internationally, just as Cassese’s report found in Pinochet’s Chile, Argentina’s repressive regime needed support from the US government, US and other foreign banks, and the World Bank and International Monetary Fund (IMF). As minister of the economy from 1976–1981, José Alfredo Martínez de Hoz was the external face of the regime in finance circles in Washington and London, and was personally responsible for the regime’s zealous embrace of regressive economic policies. Before his appointment, Martínez de Hoz had been president of the board of Acindar, a major player in the steel and construction industry, where he had been involved personally in a vicious crackdown on workers. By 1975, a clandestine torture center was being operated on the grounds of the Acindar factory in Villa Constitución to gather intelligence from workers, in a kind of macabre rehearsal of the horrors to come under the dictatorship.77 In 1986, on the day I went with a Harvard classmate to interview Martínez de Hoz at his posh apartment in the historic Kavanagh building overlooking the Plaza San Martín, he had not yet faced a trial for the violent repression of workers he directed prior to and during the regime. Martínez de Hoz came from one of the wealthiest cattle-owning families in the country. The narrative he had created about his life was one of defending the Argentina in which he had been born, and to which he apparently felt entitled, from “the masses” (las masas) who were allegedly destroying the country. The walls of the high-ceilinged living room in Martínez de Hoz’s elegant apartment were decorated with an astonishing number of heads of large game animals that Martínez de Hoz had killed—elephant, giraffe, zebra, wildebeest, and the like—all staring out disconcertingly if not accusingly. There was a surreal dissonance in that room, and not just because we were surrounded by dead and dismembered animals, as he served us tea and alfajores77 on imported china. It was hard to square the thin, genteel, elegantly attired man sitting across from us with the monster who had crushed labor protests, organized murders of trade union members, and had so often been the sophisticated front man giving credibility to the brutally repressive regime abroad. Having studied at Cambridge University, he clearly assumed, as elites often do, that our shared privileged educations meant that we would see the world in much the same ways: we would see his trophies as evidence of great conquests on his world travels and similarly

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would accept his narrative of conquering subversion by the masses as a means of getting Argentina “back on track.” We did not. In addition to legitimating the dictatorship abroad, Martínez de Hoz played a leading role in restructuring—and destroying—the economy. Among other things, he had the inheritance tax rescinded and deregulated financial markets and the banking industry; and had the government assume billions in debt. At the same time, Martínez de Hoz pushed the government to ban strikes and institute wage freezes for workers. In 1982, after the debacle in the Malvinas/ Falklands war and a rise in US interest rates, the regime assumed the foreign debts of some of the largest companies in the country. By then, Martínez de Hoz was no longer in office but Acindar was among more than 70 companies reaping enormous financial benefit from this scheme. In total Argentina’s sovereign debt ballooned from USD 8 billion in 1975 to approximately USD 45 billion by the time the military was out of power in 1983,79 triggering effects that very much continue to haunt the country today. The trauma that engulfed Argentina and continues to exact a toll today is a keen reminder that democracy everywhere is inherently fragile and must be actively nurtured by an engaged citizenry on a continual basis. Moreover, in the 1970s and today the ‘beast’ that undermines democracy is not always found just within the state itself;80 indeed, over the decades, the concentration of power in the hands of private actors and transnational corporations has grown increasingly strong. Such imbalances in political economy must be checked if we hope to ensure that nunca más (never again) can the toxic synergies between economic and political oppression play out so devastatingly anywhere in the world. What occurred in Argentina also underscores that protecting democracy requires support from beyond national borders and, conversely, that a multilateral order that aims to meet the aspirations of the Universal Declaration calls for deepening democratic governance and global equity. The story of Argentina since the end of the dictatorship further illustrates how democratic commitments to political equality can evolve over time in line with new understandings of institutional and structural violence and demands for human rights, including health rights. The white kerchiefs that were the symbol of the mothers and grandmothers of the Plaza de Mayo who courageously protested the disappearance of their children and grandchildren under the dictatorship gave way to green kerchiefs worn to symbolize feminist struggles for sexual and reproductive health and rights in the second decade of the twenty-first century. Conquering abortion rights in Argentina required reframing forced pregnancy

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not as a misfortune, or punishment for sin, but as an injustice—for which the state’s laws and institutions were causally responsible. It called for revealing the hollowness of a democratic state of law that failed to respect women’s equality and dignity, and to ensure the health care needed to realize their life plans. Perhaps most important, the struggle shifted the understanding of women from all backgrounds (and other pregnancy-capable people) about their own agency to effect structural changes in their country. The Argentine Green Wave inspired feminists across the region to achieve what was once thought impossible, leading to successful efforts to decriminalize abortion in Mexico (2021) and Colombia (2022). And after the US Supreme Court overruled Roe in 2022, North American activists began to look to Argentina and Latin America for lessons on how to advance reproductive justice in the US. Patricia Williams famously likened rights to a “magic wand of visibility and invisibility, of inclusion and exclusion, of power and no power.”81 Time and again in this book we will see how human rights can be deployed not only to curb tyranny. Rights struggles can also bring visibility and inclusion to people and dignity claims related to health that are ignored, and they can become an entry point to legal, political, and broad societal discussions about the conditions necessary to uphold the equal dignity of diverse people.

Chap te r Two

The Significances of Suffering There are successful countries and people, and there are failed countries and people because the efficient deserve rewards and the useless deserve punishment. . . . Broken memory leads us to believe that wealth is innocent of poverty. —Eduardo Galeano1 “Plague” is the principal metaphor by which the AIDS epidemic is understood. Plague . . . has long been used metaphorically as the highest standard of collective calamity, evil, scourge. . . . And these mass incidences of illness are understood as inflicted, not just endured. —Susan Sontag2

IN A NOTHER SETTIN G , Latonya would have seemed much like any other petulant teenager who had little interest in being tied down with a baby. But her starting point in life had not only led to a lack of life choices from a very young age; it had now enabled the state to regulate even the most intimate aspects of her life. By the age of sixteen, Latonya had dropped out of school and developed an addiction to drugs, which led her to engage in transactional, if not commercial, sex. And later she had gotten pregnant. When I met her in 1988, her child’s father was not in the picture. Latonya’s mother, Annie, had been caring for the baby during Latonya’s recent stint for drugs in Massachusetts’ only correctional facility for women. Annie, whose accent betrayed she had moved north as an adult and whose face showed some of the hardness of her life, was, as any mother might be, both angry at her daughter and defensive of her. Allegedly, Latonya had bathed the baby with Ajax the night before, a cleanser used to scrub pots and pans, and the child had been taken to the emergency room with skin abrasions and burns. This was long before cell phones and FaceTime

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so Peggy, the Women’s Employment Project (WEP) caseworker whom I was assisting, did not have details. Before information about everything was shared instantly on texts and social media, people had to piece together truths through multiple phone calls and personal interactions—creating a different relationship to knowledge, time, and physical reality. In this case, we went to Latonya’s home to figure out what had actually happened. Latonya had to have legal custody of the baby in order to receive Aid to Families with Dependent Children (AFDC), the federal welfare program administered by states that was meant to support single mothers. That is why we were there: to see the child’s condition and to evaluate whether Latonya could plausibly assert her “fitness” as a mother. The media in the late 1980s and 1990s reinforced racially charged and misogynistic discourse, incessantly repeating stories about the plight of “crack babies.”3 The Women’s Employment Project was meant to secure employment and/or welfare benefits for formerly incarcerated women, such as Latonya, virtually all of whom were in prison for drugs, sex work or both. In the late 1980s, many had HIV, often undiagnosed, which at the time was as lethal as it was stigmatized. Annie and Latonya lived in a nondescript building among many nondescript buildings in Roxbury, a neighborhood where two white women in business attire stuck out. Boston was still subject to compulsory busing for school desegregation in early 1988, stemming from court orders that followed from the US Supreme Court’s Brown v. Board of Education decisions in 1954 and 1955.4 But busing to overcome separate and unequal education had not worked as planned in greater Boston; instead, backlash and white flight occurred, exposing the enduring tenacity of class-based racism in the United States. To this day, despite its reputation for progressive politics, greater Boston remains profoundly segregated by race and class, with educational opportunities as well as health statistics determined largely by zip code. In the years before the pandemic, parts of Roxbury had a life expectancy of less than fifty-nine years, while less than half a mile away residents of the Back Bay neighborhood had a life expectancy of almost ninety-two years.5 During the pandemic, death rates for communities of color in greater Boston, adjusted for age, were significantly higher than for whites. Neither gaping disparities in life expectancy nor COVID-19 mortality rates can be explained by biology; in COVID-19, they have everything to do with overcrowded and inadequate housing, population density and food deserts, lack of educational and employment opportunities, vast racial wealth gaps, and a health system

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based on private insurance that exacerbates the fault lines of exclusion in the overall society.6 The neighborhood Latonya and Annie lived in exuded the bleakness characteristic of urban poverty in much of the United States at that time, as if socalled housing ‘projects’ were deliberately designed to deaden any grand hopes or dreams that managed to sprout in a child of these streets. Moreover, by the late 1980s absentee landlords in Roxbury had allowed buildings to go for years without maintenance; some units were left vacant while others were burnt out and boarded up. Inside the apartment, the walls were strikingly bare—no books or art that might suggest how Annie and Latonya wanted to see the world. We sat on the one couch in the living room, facing a television set, which at the time still had rabbit ears. We listened to Annie and Latonya tell us their version of what h ­ appened— washing the baby in the kitchen sink, which had some residual detergent in it—and we observed Latonya’s interaction with her child. Looking back, this visit and the others we made were inevitably both intrusive and performative. But Peggy, who seemed guided in her work by her religious views, had explained to me that employment was often not possible so the focus of WEP was on getting clients AFDC benefits for the sake of the innocent children who suffered, if not the mothers. Latonya was basically still a girl herself, and most women who end up in prison have suffered from emotional or sexual trauma as girls. But innocence implies that guilt and blame lie somewhere and that not all suffering merits the same response from governments or society. AFDC began under FDR’s New Deal as Aid to Dependent Children in 1935—“not as charity,” Roosevelt said about those programs at the time, “ but as social duty.”7 AFDC had continued in different forms until 1996, when President Bill Clinton enacted the “Welfare to Work Act: The Personal Responsibility and Work Opportunity Reconciliation Act.8 Billy Bulger—better known for being the brother of the brutal mob boss James “Whitey” Bulger—was the president of the Massachusetts state senate when I met Latonya in 1988, and he spearheaded a welfare reform proposal that foreshadowed the national law, conditioning welfare payments on employment in most cases. By then, attitudes about personal responsibility versus the duty of the state to free people from want had changed dramatically since the New Deal. AFDC drew particularly scathing critiques about perpetuating laziness and dependency because it fed so many racial and gender stereotypes; it was denounced for leading poor women, and by implication if not fact, women of color, to have

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additional children in order to get benefits.9 When social protection is viewed as charity as opposed to part of the social contract, it facilitates placing moral judgments, as well as demands, on the behavior of poor people and especially women such as Latonya. By the late 1980s the “War on Drugs” had taken center stage in US politics, displacing the earlier “War on Poverty” and sweeping vast numbers of disproportionately Black and Brown people into the carceral system.10 Public discourse was radically different from what it later became during the opioid epidemic, when we finally began to recognize that addiction was a public health crisis. Pregnant women who were found to be consuming drugs were particularly demonized in popular discourse, as well as prosecuted criminally for the harm to which they were subjecting the fetus. As Aziza Ahmed writes, “starting in the 1980s, public officials and the media advanced a narrative of Black women as uncaring mothers who passed drugs to their fetus and resulting child. Hospitals doubled down on reporting drug use to law enforcement and social services, often targeting pregnant women of color in ways that neither addressed their health needs nor ensured better birth outcomes for their children.”11 Latonya seemed to tick all the boxes of politically charged tropes. Her life was caught up not just in the politicking over drugs, race, and crime but in sweeping changes in how poverty was conceived and addressed. In 1980 the former actor Ronald Reagan was elected president of the United States, declaring “morning in America.” Morning in America was billed as a fresh start after social upheavals and rising crime which would end the high inflation and unemployment (“stagflation”) that had emerged in the late 1970s. Morning in America—and the equivalent under the Iron Lady of Great Britain, Margaret Thatcher—translated into policies that set the stage for dramatic market expansions, financial deregulation, and increasing wealth inequalities in the US and the UK—and around the globe. In Chapter 1, we discussed the need to expand traditional liberal conceptions of rights to extend the causal responsibility of the state and advance the health rights of all people, including women. In this chapter, we turn to how development paradigms were evolving in the 1980s and how new economic policies were beginning to shape the role of the state and possibilities for enjoying health and other economic, social, and cultural (ESC) rights. The chapter first examines the dramatic changes in political and economic discourses that occurred in the 1980s, which ushered in changes to the role of the state vis-à-vis the private sector domestically, and implied new approaches to development internationally.

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For example, from 1951 to 1982 in the US, the wealth of the top 10 percent never exceeded more than one-third of total wealth. This relative social equality (at least among whites) was only possible because, in addition to the government proactively generating employment opportunities, and college and home subsidies, income tax had been progressive: the top marginal rate was 91 percent from 1951 to 1963 and above 70 percent until 1981.12 Progressive fiscal policy provided financing for common social endowments, from schools to public health to infrastructure. But this was all about to change as the US embraced neoliberal policies that expanded the role of markets to allocate social as well as private goods. Tax reforms benefiting the wealthy were coupled with deregulation and privatization across much of the economy, and social safety nets for people like Latonya were deliberately unraveled. On a global level, the neoliberal faith in markets to drive economic growth came together with untenable debt burdens in the global South in the late 1970s and 1980s. As a result, the Bretton Woods institutions and Northern governments called for dramatic restructuring of economies in the global South (Structural Adjustment Programs, or SAPs), which meant adopting policy imperatives that came to be called the “Washington Consensus.”13 Beginning in the late 1970s and increasingly in the 1980s, the dominant neoliberal paradigm that began to be actively pushed by IFIs overshadowed ideas of a right to development or a New International Economic Order (NIEO) that aimed to address uneven power relations between countries. Just as within countries there were people categorized as winners and losers, so too were there successful states and failures. Second, the chapter moves from broadly examining the changed paradigms of state responsibility to the specific effects of these shifting policies on health and health systems. Patterns of health and ill-health are only questions of justice if we understand them to be causally related to social relations and institutional arrangements, including health systems. In the 1980s empirical evidence emerged to support the link between social inequality and health. Yet ideas of health as reflections of societal structures and ideas of health systems as sites of citizenship were competing with other marketized paradigms. The increasingly entrenched biomedical understanding of disease as pathology isolated from the social context lent itself to efforts to privatize responsibility for health. The growing HIV/AIDS pandemic revealed an extreme of this privatization as well as a stigmatization not just of the illness but of the people who were blamed for contracting it. However, AIDS also highlighted the tremendous capacity of people to organize collectively to fight for their rights to health and survival and to change the course of history.

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In the last section, the chapter explores the transformative impacts of addressing the suffering and health deprivations of children as injustices, and the ways in which doing so called for reimagining the meaning of rights for everyone. The “child survival revolution” that UNICEF launched in the 1980s, which saved millions of lives, was inextricably connected to the promotion of children as subjects of rights. Children had historically been treated as partial adults or chattel, while adolescents and youths such as Latonya were too often caricaturized as fueling social unrest or as uncontrollably hedonistic. The UN Convention on the Rights of the Child reframed children as rights-holders and citizens. In so doing, it changed approaches to child health as well as understandings of dignity protection more broadly.

Conceptions of Development and Progress in the World How we understand the purpose of development affects the policies we pursue and in turn how we evaluate the impacts of those policies, for good and ill. The decade of the 1980s was marked by a shift in thinking, both as to the aim of macroeconomic policy and as to the political economy of development in an unequal world. The SAPs that swept the global South in the later 1970s in a few countries and more widely in the 1980s, together with later economic reforms we will discuss are referred to as neoliberal because they were understood as a resurgence of the nineteenth-century laissez-faire capitalism and economic liberalism. Since the early 1980s, neoliberalism has evolved; its relentless commodification has intensified greatly with financialization and been accelerated by digital networks of exchange that sprawl across the planet—and it has reshaped how we understand our social institutions and relations. Wendy Brown writes that neoliberalism has come to be “a normative order of reason developed over . . . decades into a widely and deeply disseminated governing rationality . . . [that] transmogrifies every human domain and endeavor, along with humans themselves, according to a specific image of the economic.” She explains: “All spheres of existence are framed and measured by economic terms and metrics, even when those spheres are not directly monetized. In neoliberal reason and in domains governed by it, we are only and everywhere homo oeconomicus.”14

The Ends and Means of Development The consequentialist goal of development in what I loosely refer to as “mainstream economics” is to maximize economic growth. Economic growth over time is presumed to reduce poverty levels, measured in income. Neoliberalism

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was based upon the idea that efficient economic outcomes were best produced if the private sector could be unshackled from government regulation. Nobel Prize−winning economist Joseph Stiglitz and countless others have written about the disprovable empirical assumptions built into neoliberal policies.15 Further, human rights scholars and practitioners have noted that neoliberal economic policies have undermined health and social equality in different contexts.16 However, it is important to be clear about the relationship between the goals of development and human rights before we examine the means through which economists and policy-makers have sought to achieve those goals. As noted in the Introduction, sustainable economic growth can and should be beneficial to human flourishing and rights. Sustainable economic growth should enable individuals to have greater choices in making and executing life plans, recognizing the finite resources of the planet; sustainable economic growth should also provide the government with greater revenues to enhance social welfare for living members of society as well as to maintain a situation where future generations enjoy equal freedoms and entitlements. Think for example of the vast public funds needed for climate mitigation and adaptation, and paying for existing damage and loss across the most heavily affected countries. Still, economic growth is a means, not an end in itself, from a human rights perspective. The value of economic growth is inherently dependent on the distribution of its benefits, as well as short- and long-term social costs. For example, the “natural resources curse” has long referred to state reliance on extraction of natural resources for economic growth that generally: (1) does not require or yield equitable investment in education, independent institutions, or population health; and (2) has high costs in terms of both human health and ravaging the environment, which will affect future as well as living generations. Reliance on extractive industries in wealthy countries, such as Canada, invariably hurts marginalized populations, such as Arctic indigenous communities whose lands and livelihoods are devastated. Extractive growth in low-income, poorly consolidated democracies, such as the Democratic Republic of Congo, produces weak institutions, social inequality, and conflict, and doubly punishes citizens who then have to import finished products that their raw materials produced, such as cell phones. Many states fall somewhere in the middle, such as Colombia, where half of all exports are fossil fuels; there, rural populations’ farms and indigenous communities’ lands and water are poisoned, while the benefits of this economic growth overwhelmingly go to elites and foreign investors. Today we know that extractive growth in one country or region is driven by demand for fossil fuels

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and minerals elsewhere—and everywhere. We now understand that the natural resources curse cannot be separated from histories of colonialism and global markets that prop up our endless addiction to fossil fuels. If economic growth is not the end goal, what is the aim of development from a human rights perspective? In the 1970s and 1980s, Amartya Sen, along with others, including Mahbub ul Haq, was putting forward a very different understanding of development. Sen argued that traditional development that focused narrowly on increased average income was inadequate because diverse people differed in their capabilities to convert income and wealth into the “functionings” they actually valued.17 According to Sen’s capabilities theory, what is really valuable to people are freedoms to be and do certain things with their lives, so the aim of development should be to promote “the capabilities that a person has, that is, the substantive freedoms he or she enjoys to lead the kind of life he or she has reason to value.”18 Thus, human development speaks to the structural conditions necessary for people to enjoy lives of dignity. If what we really care about are capabilities to pursue our life choices, it follows that the means to societal progress call not just for economic growth incentives but for removing what Sen called “unfreedoms,” including infringements of civil and political rights. People obviously cannot do and be the things they value in life under dictatorships, such as Argentina’s in the 1970s or when they do not have genuine freedom of information and expression. Unfreedoms also include barriers to education, food security, and health care, such as discrimination. When we think about development in this way, it calls not for unfettered economic growth but for democratic political economies where institutions are structured to enhance human capabilities within and across societies, including but not limited to material entitlements. Such institutional arrangements invariably call for governmental regulations and sustained investment in common goods, such as education and public health. This vision of human development reflects and refracts norms of reciprocity among current members of a society, as well as measures that take future generations into account. In our globalized world, human development also calls for multilateral institutions and governance that support investment in the global commons, such as pandemic preparedness and climate mitigation. Sen’s ideas were partially institutionalized in 1990 by the United Nations Development Programme (UNDP) in the Human Development Index (HDI) and the annual Human Development Report. Instead of focusing exclusively on economic growth to measure societal progress, the Human Development Report

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(an alternative to the World Bank’s World Development Report) measured “a long and healthy life [life expectancy], being knowledgeable [education], and having a decent standard of living [income].”19 In the year 2000, UNDP’s Human Development Report focused specifically on “human rights and human development.”

Structural Adjustment and the Washington Consensus Despite work by Sen and others, in the 1980s the dominant economic model focused on economic growth. Free market ideology coupled with events in the world changed the approach to securing that growth. Since their creation, the Bretton Woods institutions of the IMF and the World Bank had generally provided short-term loans to enable states in the global South to repay debts. In the 1980s, IFIs undertook far more ambitious policies to address what was perceived as structural instability. By the late 1970s, the long period of postwar economic growth had ended. Governments in much of the world faced internal problems of inflation and unemployment, as well as external problems of ballooning deficits, currency volatility, and lower demand for commodities.20 States in the global South, often under newly decolonized regimes or dictatorships as in Argentina, had borrowed heavily to maintain levels of imports and consumption. Eventually, unsustainable borrowing meant that governments were able to pay less and less back (known as a “deteriorating balance of payments”) on larger and larger debts.21 In 1982 Mexico defaulted, which led to the fear that many other countries in Latin America and elsewhere would follow suit, crippling banks in the North and causing the global economic system to collapse. The World Bank and the IMF—pushed by their most powerful shareholders particularly the US—developed more drastic interventions in the internal governance and economies of countries in Latin America and Africa to address this perceived threat. The IMF is the institution charged with setting parameters for economic policies, but both the IMF and the World Bank, together with regional development banks and other institutions, function as part of a global economic governance ecosystem. “Structural adjustment” meant that in exchange for rescuing them from default, indebted countries were required to adopt a menu of neoliberal policies which generally included: (1) privatization and deregulation; (2) trade liberalization to open markets to foreign investment; and (3) reduction or elimination of social subsidies in order to balance budgets. The logic the SAPs followed, became known as the “Washington Consensus.”22 These market-friendly reforms prioritized fiscal discipline and balanced budgets, and

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almost always involved replacing broad universal social programs (often largely aspirational at the time) with targeted programs for the neediest, including in health, to meet “basic needs.” In the SAPs’ ends-justifies-the-means logic of SAPs, those populations who could not fit into the productive sectors—e.g., rural peasants in the informal economy—were not treated as citizens with rights but as externalities on the road to modernity. Moreover, economic policies, like all policies, are gendered. SAPs, and neoliberal policies more broadly, have had outsized impacts on women. Women overwhelmingly bore the burden of squeezing household money to pay newly imposed school and other fees, and support family needs, as well as increased care work, as we discussed in Chapter 1. Women also are more dependent on health systems, both for their own reproductive health needs and for their children’s care, which at the time in much of the global South largely involved preventable diseases of poverty. Under SAPs, most government expenditures for health were reduced to a mere 2% of gross domestic product (GDP).23 In one study examining the effects of SAPs on the health sector in multiple countries, the authors conclude that the data show that “the incidence of preventable diseases rises and [over the course of children’s lives, there is an] irreversible deterioration in health status.”24 In the 1980s and 1990s, many countries following SAPs increased fees for childbirth at health facilities and other reproductive services, including contraception, which disincentivized women (who often had no control over financial resources) from interacting with the health system altogether. Studies that measured nutritional indicators for children asserted that the negative impacts of SAPs on the health of the poor would continue to be manifested for decades.25 The SAPs dramatically showed how closely patterns of health and ill-health reflected social policy changes. In 1987, UNICEF published the first major institutional critique of SAPs, entitled Adjustment with a Human Face, which pointed to their adverse effects on the health of women and children in particular.26 By the 1990s, the World Bank itself conceded that “women have borne the brunt of SAP-induced poverty,” and that even “where growth has occurred its benefits have been unevenly distributed.”27

A New View of Multilateralism Takes Hold Structural adjustment also required changing the relationships between countries through economic integration. In the 1980s, multilateralism, which was supposed to be the key to propagating norms of equal dignity through the UN, was

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quickly becoming, through transformed Bretton Woods institutions, the key to entrenching norms of neoliberalism throughout the global order. In 1986, the UN General Assembly adopted a nonbinding Declaration on the Right to Development, which attempted to combine the NIEO’s language on state self-determination and sovereignty over natural resources with the rights of individuals to “participate in, contribute to, and enjoy economic, social, cultural, and political development, in which all human rights and fundamental freedoms can be fully realized.”28 But, as noted in Chapter 1, the right to development remained a deeply contested concept due to both inherent tensions between individuals’ claims and those of states and the threat it would pose to the global economic order. Powerful actors in mainstream economic development were interested in a very different turn during the 1980s, including a sharp rupture with previous understandings of international trade. The same year the UN passed the Declaration on the Right to Development, the Uruguay round of the General Agreement on Tariffs and Trade (GATT) negotiations began, which would lead to the creation of the World Trade Organization (WTO) when the agreement entered into force in 1995. Trade rules were extended to areas that had been exempted, including agriculture and intellectual property, which would come to have outsized effects on access to medicines as well as the production of food. The GATT had previously afforded maneuvering room for corporate governance, labor markets, tax regimes, business-government relations, and welfare state arrangements. It allowed what Peter Hall and David Soskice term “varieties of capitalism.”29 For example, the German social market economy differed from the Scandinavian welfare state, which differed from the French indicative planning model. Dani Rodrik argues that “GATT’s purpose was never to maximize free trade. It was to achieve the maximum amount of trade compatible with different nations doing their own thing.”30 That made sense. A regime of international exchange is enormously preferable to a default of nationalistic protectionism for many reasons. These include not just economic efficiencies but the interpenetration of varied social and cultural forms, which in turn drive creativity, spread practical progress, and encourage emancipation from preset social roles, alongside greater mutual understanding and respect for human rights. It is no coincidence that the height of protectionism in the US, which was a dismal failure and exacerbated the Great Depression, coincided with deeply nationalist fear mongering in public discourse.31 According to the late economist John Ruggie, “unlike the economic nationalism of the thirties

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. . . the postwar international economic order was designed to be multilateral. . . . But unlike the laissez-faire liberalism of the gold standard and free trade, its multilateralism was predicated on the interventionist [and redistributive] character of the modern capitalist state.”32 Nonetheless, in the 1980s, as trade liberalization was promoted with almost religious zeal by economists of the day, neoliberal multilateralism began to look a lot like a framework built for a global elite. If labor is just a commodity, it makes sense to get it from countries where it is cheaper. It was entirely foreseeable that over these years US and other multinationals would outsource production to the global South to lower costs, to avoid labor protections abroad and weaken unions at home, and to circumvent domestic regulation. In the global South, as Joseph Stiglitz writes, “trade liberalization accompanied by high interest rates [was] an almost certain recipe for job destruction and unemployment creation—at the expense of the poor.”33

Changing Conceptions of Health and Health Systems Paradigms of Health and Implications for a Right to Health Ironically, at the same time as the implementation of neoliberal policies was creating greater social inequalities in the 1980s, the empirical evidence about the predictability of the impact of such policies on population health was becoming irrefutable. The Black Report in the UK, which followed an earlier Whitehall Study on gradients in health among British civil servants, showed “marked differences in mortality rates between the occupational classes” and concluded that “much . . . can be adequately understood in terms of . . . consequences of the class structure: poverty, working conditions and deprivation in its various forms.”34 At the global level, the preamble to the 1946 WHO Constitution had declared health to be a fundamental human right and defined it as a “complete state of physical, mental, and social wellbeing and not just the absence of disease,” calling it a “fundamental right.”35 In 1978 the WHO adopted the Declaration of AlmaAta (Alma-Ata),36 reaffirming health as a “fundamental human right . . . [that] reflects and evolves from the economic conditions and sociocultural and political characteristics of the country and its communities.” The declaration stated that “the attainment of the highest possible level of health is a most important worldwide social goal whose realization requires the action of many other social and economic sectors in addition to the health sector.”37 Alma-Ata conceptualized patterns of health and ill-health as socially constructed, both within and across

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societies, and explicitly embraced the imperative of a NIEO. Its conception of health was reaffirmed in 1986 at the First International Conference on Health Promotion in Ottawa. The Ottawa Charter stated that “at the heart of [health promotion] is the empowerment of communities—their ownership and control of their own endeavors and destinies.”38 However, both Alma-Ata’s view of health as a social construction and Ottawa’s focus on health promotion through community empowerment contrasted sharply with mainstream discourse on health in the 1980s—and today. By the 1980s health had become increasingly medicalized and commercialized. The two processes were related. During World War II, the life-saving antibiotic penicillin entered large-scale production for use on the battlefield and beyond. Many childhood vaccines that have greatly reduced the scourges of disease, from measles to polio, were developed with significant government funding and involvement in the postwar decades. On April 12, 1955, when Jonas Salk was asked by a journalist who owned the patent on his history-changing discovery of a polio vaccine, he famously replied, “Well, the people I would say. There is no patent. Could you patent the sun?”39 But since the late 1960s and early 1970s, the underlying political and social causes of disease such as poverty—underscored by Alma-Ata and Ottawa—were being increasingly displaced by medical diagnoses and treatments in the economic North. Diagnoses increasingly required sophisticated technologies, and treatments were based on newly invented medical devices—above all, pharmaceuticals. Unsurprisingly, pharmaceutical companies quickly started lobbying for increased patent protection in the United States and, through the Uruguay Round of the GATT, across the globe. Pfizer—now perhaps most known for its marketing of a COVID-19 vaccine and therapeutics—was one such company. Edmund Pratt, Pfizer’s CEO from 1971 to 1993, was an advisor to the US Trade Representative in the 1980s and a member of the Intellectual Property Committee delegation to the Uruguay Round, where he played a major role in expanding negotiations to include intellectual property.40 Health in biomedicine is defined as the absence of disease or pathology, which is precisely what the WHO preamble had aimed to broaden. Think of “normal” on a cholesterol or blood pressure test. If health is a matter of social well-being, as stated in the preamble, social relations—in other words, power relations—­necessarily influence patterns of health and ill-health as well as the experience of them. But in the biomedical paradigm, both the social causation of health inequalities, confirmed by studies such as the Black Report, and the

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social experience of health conditions (such as infertility) are peripheral. Health is treated as a technical issue within an isolated body to be deciphered exclusively by scientific and clinical experts. In turn, conventional public health largely confines itself to identifying proximate behavioral or biological factors that shape distributions of disease. In controlling for or displacing attention from “distal factors,” such as racialized poverty and inequality, the methods of conventional public health often reify the status quo rather than disrupting it. The technocratic understanding of health has become so normalized in many Western countries that it is important to recall that it is not the only way to think about health. In fact, it contrasts with many traditional Eastern and indigenous approaches in which health is understood as relational, belonging to a culture and social space. Conventional Western medical understandings also differ from social medicine, which explicitly understands health as inseparable from the social and material worlds we inhabit. In the nineteenth century, the father of social medicine, Rudolf Virchow, explicitly called not for narrow medical interventions but for a more radically egalitarian (in his term, “full”) democracy as the necessary means of addressing the true causes of a typhus outbreak in Upper Silesia that killed as many as 10 percent of the population in some towns.41 But today conventional medical solutions too often turn to narrow treatments and, in public health, behavioral interventions that take the social structure of society for granted. In mainstream medicine, expert medical judgments have come to be taken not only as neutral and objective but as unchallengeable by ordinary laypersons. This expansion of medical authority also produces social effects. For example, evidence of what Michel Foucault called “disciplining power” to define the contours of deviance can be seen in psychiatry, where a multitude of social discontents have been transformed over the decades into disorders to be suppressed through behavioral modification or medication. When the HIV/AIDS pandemic broke out in the 1980s, homosexuality itself was still defined as a disease in the Diagnostic and Statistical Manual of Mental Disorders of the time. To be clear, advancing population health and health-related rights depends on medical and scientific advances. Nonetheless, when we understand health as a matter of rights, we think about its inherent connection to a life of dignity. We also necessarily think about health as subject to social influence. We cannot claim rights to individual talents, such as playing the clarinet or painting. Nor can we claim rights to stochastic phenomena. As discussed in Chapter 1, causality is the key to understanding patterns of health and ill-health as injustice rather

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than misfortune. Consider for example the disparities in life expectancy between Roxbury and Back Bay in Boston. If they are due to biology or behavior alone, they are tragic but not necessarily unjust. But if they are due to discrimination and failures in regulation, they call for legal and institutional remedies. The same holds true for the dramatic increases in childhood morbidity and mortality rates among the poor after SAPs were introduced in many countries. In the 1980s the HIV/AIDS pandemic surfaced narratives around personal versus social responsibility, and in turn ambivalent relationship between rightsbased framings of health and mainstream medicine and public health approaches. In the West, HIV/AIDS was associated initially with homosexual men and labeled the “gay plague” early on. While young people in the prime of their lives (as well as older ones) were dying of this mysterious illness and communities from New York to San Francisco were being decimated, it was met with the politics of blame and shame and massive governmental indifference. When they garnered attention, the suffering and death of the gay community was widely portrayed as evidence of sexual deviance as well as promiscuity.42 Sex workers and IV drug users were likewise said to have merited AIDS as punishments for their behavior. HIV/AIDS was portrayed as a foreign threat, producing xenophobic stigmatization of Haitians, for example. As Susan Sontag suggested, stigmatizing the sufferers of this plague for any number of reasons facilitated othering and clearly separating the ill and potentially ill from the general population. The mainstream media amplified HIV/AIDS hysteria by obsessively asking whether it was safe to get your teeth cleaned by a gay dentist, whether you were at risk if your roommate was gay or bisexual and having sex with multiple partners, whether you should hire a gay person who might have contact with food or with children as a teacher or in childcare, and on and on. Narratives of abnormality and deviance, fueled by misinformation and disinformation, were reinforced by an array of laws that, for example, excluded HIV-positive people from entering countries (including the United States); forbade blood transfusions from gay men as automatically “high-risk”; permitted discrimination in employment and housing; and in some cases, criminalized HIV transmission. If, like a social X-ray, HIV/AIDS revealed the exclusion and stigma faced by gays and lesbians, sex workers, and other groups, it also revealed the power of collective action to change our socially constructed reality. Accepting homophobic violence and discrimination, whether out of denial of the validity of one’s own story or strategic calculations, had come to mean certain death in the era of HIV/AIDS. Activists who refused to live cloaked in shame and consigned to

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their fates came together through multiple organizations to force the powers that be to address this new disease. AIDS activists drew on organizing lessons from the civil rights movement and feminist struggles for women’s rights. In 1987, the global grass-roots movement, AIDS Coalition to Unleash Power (ACT UP) was formed and held a large march on Washington for gay and lesbian rights. Thereafter, they advocated for treatment and research and took direct actions to make their cause visible. For example, ACT UP held “die-ins” on Wall Street to protest the price of AZT, and experimental antiviral medication; they shut down the Food and Drug Administration (FDA) for a day in protest of the red tape that impeded access to experimental drugs; they staged protests at the National Institutes of Health (NIH) to force the government to invest more, and more effectively, in research on HIV/AIDS.43 Activists also used art to reframe discourses and raise awareness of rights violations, just as sexual and reproductive health and rights (SRHR) activists did with the Green Kerchiefs in Argentina. These symbolic resignifications included famously appropriating the pink triangle the Nazis used to identify homosexuals for extermination and disseminating images with the triangle reading “Silence=Death.” The persistent and creative militancy from activists, together with the dedication of many scientific researchers, produced results. In 1996 at the annual global AIDS conference, it was announced that an effective “triple cocktail” of antiretroviral medications had been discovered. For those who had access to them, these medical advances were transformational; a certain death sentence was converted into a chronic disease. Of course, not everyone had access—­effective antiretroviral treatment was denied for years to millions of people in sub-Saharan Africa, Haiti, and elsewhere because of patent protections and cynical fatalism about the capacity of health systems to manage treatment regimens, as we will discuss in Chapter 5. However, the medicalization of HIV/AIDS as an infectious disease to be treated in individual bodies with antiretrovirals and individual behavior change (such as abstinence or condom use) drew attention away from the fact that HIV/ AIDS was, and remains, a social phenomenon. Understanding AIDS as such, driven by and perpetuating discrimination based on stigma and stereotypes changes how we understand causal responsibility and what we choose to do about it.44 Indeed, the “health and human rights movement” was founded in the early 1990s largely because of the unreflective discrimination so widespread in public health in the HIV/AIDS pandemic. Jonathan Mann resigned in frustration from the WHO’s Global Programme on AIDS and became the founding

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Director of the Francois-Xavier Bagnoud Center for Health and Human Rights at Harvard University. Mann and colleagues argued that truly addressing HIV/AIDS required tackling the underlying human rights violations in law and institutional practice, not treating the biological virus and secondary infections alone.45 In a seminal article in the newly founded journal, Health and Human Rights, Mann and colleagues argued that deliberate or inadvertent discrimination seen in the AIDS response was built into the long-standing infectious disease control principle of limiting the “rights of the few” to preserve the “good of the many.”46 In other words, rights deprivations stem from the deeply rooted consequentialism of conventional public health, which adopts an ends-justifies-the-means approach to containing disease, and in so doing ignores people’s dignity. Mann and colleagues argued, based on experience with HIV/AIDS, that all “health policies and programs should be considered discriminatory and burdensome on human rights until proven otherwise” [emphasis added].47 In the very different dynamics of the COVID-19 pandemic, policies dictated by public health experts “following the science” were often rife with blind spots regarding the disproportionate impacts of measures on diverse populations, from migrant workers to persons with disabilities. Mann and colleagues’ presumption of discrimination “until proven otherwise” may seem unworkable during a pandemic. However, their insights suggest that, in ordinary and pandemic times, an aura of objective “scientificity” 48 should not be enough for health policies to circumvent democratic scrutiny from those who will be affected, including marginalized populations.

Health Systems: Charity, Marketplaces, or Sites for Constructing Citizenship Dating back to medieval times, from Baghdad to Europe health institutions have been organized by religious or charitable organizations. In some countries in sub-Saharan Africa, close to half of all health care is still provided by religious organizations. From “clean and modern” birthing practices enforced on indigenous women to male circumcision to reduce HIV transmission, historically there has been a deep synergy between Western missionary charity in health systems and enforcement of colonialist conceptions of hygiene and social norms. When newly formed states began establishing public hospitals, they were invariably places for the destitute. As late as 1929, when George Orwell famously recorded his account of time spent in a hospital in France, “How the Poor Die,”

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public hospitals were still generally filled with the impoverished and others who had no way to avoid being there.49 Those who could afford it were attended at home by doctors with little black bags. Women giving birth were at higher risk of death in hospitals than at home, as puerperal fever, a postpartum bacterial infection, was passed from physicians to patients before widespread antibiotics and infection control measures. Public health and health care evolved tremendously over the twentieth century, with broad sanitary measures and occupational safety and newly discovered vaccines to prevent formerly deadly diseases as well as antibiotics. Labor movements in Western Europe fought for universal health systems as part of inclusive democracy.50 Health systems were also sites of democratic contestation in much of Latin America, even when they showed the fissures between formal and nonformalized labor sectors.51 President Salvador Allende of Chile was a physician himself who had famously championed a Latin American variant of social medicine before he was overthrown in the military coup that brought Pinochet to power in 1973.52 The post-dictatorship Brazilian constitution of 1988 explicitly enshrined a broad right to health, understood as part of social citizenship in a democratic state of law and a factor in social and economic policies, not just medical care.53 However, in the 1980s not only were SAPs leading to the imposition of user fees on certain services, but a model of health systems as marketplaces governed by business incentives began to entrench itself. The US was an early adopter of this paradigm; other countries would follow in their health system reforms in the 1990s and beyond. The idea that health care should be allocated by markets was not new; it had arisen in previous decades and had been roundly criticized by a number of leading thinkers. In a famous article in 1963, Nobel Prize−winning economist Kenneth Arrow pointed out that the unique extent of asymmetries in information in health and the fact that providers set both supply and demand for services made health a particularly poor sector to be set up along market principles.54 Nevertheless, market fundamentalism was sweeping social policy in the US in the 1980s, including with respect to health. Public funding for broad public health measures was diminished. Within the health-care system, the increasing reliance on technologies for diagnosis and treatment had made the doctor with the little black bag a thing of the past in much of the economic North, and had created ballooning costs. In the US, where private health care was largely tied to employment, insurance groups that contracted with providers and separated

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financing and administration from provision to reduce costs through “managed care.” Patients were increasingly treated as consumers engaging in commercial transactions, which gave enormous power to hospitals to set prices and to insurance companies to determine coverage. In this marketized system, insurance reimbursements were set according to average treatment costs, no matter what particular circumstances might be at play. Moreover, many illnesses, such as HIV/AIDS, generated conditions not covered by any pre-established diagnostic and reimbursement group categories. A marketized system in which fairness became a question of “you get what you pay for” had foreseeable societal effects. Private insurance companies could pick and choose patients who would be less costly to treat or rescind coverage based on “pre-existing conditions.” HIV/AIDS patients often found themselves selling their belongings and spending their life savings to obtain health insurance through Medicaid, the US government’s health care program for the poor. By the time the COVID-19 pandemic hit, public health infrastructures needed for such things as contact tracing, were grossly defunded and health-care costs were the largest source of personal bankruptcy in the United States.55 Moreover, by 2020 decades of intertwining economic and public health Darwinism allowed certain politicians to weaponize the notion of “pre-existing condition” against vast swathes of the US population as being synonymous with “comorbidity,” and argue that public policy only need concern itself with fit and strong people who were being punished economically by lockdowns and restrictions. The isolated individualism of biomedicine lent itself to this privatization of responsibility for health, as fundamental social causes of ill-health were systematically organized out of this framing—and political failures became personal defects. This was true not just for HIV/AIDS or for girls and women who faced unwanted pregnancies. Noncommunicable diseases, such as diabetes and cardiovascular disease, could be diagnosed and treated in individual bodies and causation could be ascribed to diet or exercise habits, displacing public scrutiny from increasingly pathogenic commercialized food systems and other environmental factors.

Children’s Health and Rights If HIV/AIDS demonstrated how the dehumanization of certain populations— e.g., gay men, or IV drug users—was related to their health and rights, children faced another form of dehumanization that affected their ability to flourish. Historically, children have not been deemed to have the same capacity for

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self-governance and reason as adults; small children have historically been treated as innocent beings without agency while adolescents have been viewed as uncontrollable and hedonistic. Many children have been traditionally treated as chattel, with parents depending on their labor for family survival—or their exchange value when child brides are married off. In 1982, the director of UNICEF, James Grant, launched a “child survival revolution” which reconceptualized the reduction of child mortality and morbidity as integral to human development, not just economic growth.56 The initial reaction to Grant’s revolution was overwhelmingly skeptical, both from those who thought it a distraction from the imperative of economic development and from those who believed Grant had deferred too much to IFIs. Halfdan Mahler, for example, then WHO director-general, argued that Grant’s endorsement of “selective primary health care” as a package of interventions—growth monitoring, oral rehydration, breastfeeding, and immunization—undermined holistic understanding of the social construction of health put forth in Alma-Ata. Nevertheless, Grant—and UNICEF—persisted. The child survival revolution is believed to have saved twenty-five million lives between 1980 and 1995 through immunizations, oral rehydration therapy, growth monitoring, breastfeeding promotion, family planning, and food supplements.57 In 1982, child mortality and infant mortality killed 40,000 children per day.58 In 2019, before the pandemic reversed some of these gains, child mortality killed an estimated 20,000 children per day even though the world’s population had expanded exponentially.59 For James Grant, the idea of promoting children’s health was inextricably linked to child rights. The promulgation and entry into force of the groundbreaking UN Convention on the Rights of the Child (Child Rights Convention, or CRC) in 1989/1990 respectively,60 and UNICEF’s adoption of rights-based approaches to child health were the first application of rights specifically to health. Although children could benefit from the protections of other treaties, the CRC enshrined a new understanding of children from birth to age eighteen as full subjects with “evolving capacities” as they grew, which implied shifting the boundaries of human rights law. In addition the continuing erosion of distinctions between public and private spheres begun under the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), a central consequence of acknowledging children as subjects of rights and as citizens is that parents, and other private as well as public actors, should justify their decisions regarding children based on reasons that consider the children’s best interests. According to Felton Earls and

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Mary Carlson, the “CRC represents a set of claims made on behalf of the child to activate the obligations and responsibility of adults in a society.”61 At the time, decisions about every aspect of children’s lives—whether and how they were educated, whether and what kinds of health care they received, what kinds of work they might do, who they might marry, and the like—were made for them. The Child Rights Convention adopted the “best interests of the child” standard whereby both public policy decisions and parental decisions in the privacy of the home were to be made consistent with “the holistic physical, psychological, moral, and spiritual integrity of the child and . . . his or her human dignity.”62 The child’s own views are integral to determining her best interests and are to be given “due weight in accordance with . . . age and maturity,” and the child must be “provided the opportunity to be heard in any judicial and administrative proceedings affecting the child.” This was revolutionary, as it reframed the traditional patriarchal family, the basic unit of society. Some of the opposition to CRC ratification in the United States—the only country in the world not to have ratified—argued that the CRC limited parental rights to determine homeschooling as well as to discipline children as they saw fit. Evidence of withholding vaccinations before and during COVID-19 as well as denying children other lifesaving health care suggests that requiring decisions to account for children’s best interests remains elusive today. The Child Rights Convention not only challenged the authority of parents but also deepened the relational understanding of rights based on growing insights from developmental psychology and other social sciences. That is, the arbitrary detention of an adult under the dictatorship in Argentina was a life-interrupting violation of dignity. But children’s sense of themselves as subjects with dignity begins with the way they are treated at home. This insight has particular implications for girls and non-heteroconforming children. As Gloria Steinem notes, “The family is the basic cell of the government: it is where we are trained to believe that we are human beings or that we are chattel, it is where we are trained to see the sex and race divisions and become callous to injustice even [when] it is done to ourselves, to accept as biological a full system of authoritarian government.”64 Rights should protect this process of constructing ourselves as subjects with dignity as well as protect against the arbitrary deprivation of dignity that happens to adults. Children create themselves through external narratives and norms in their communities and societies as well. Children like Latonya whose lives are shadowed by poverty and varieties of prejudice are not just limited by external barriers

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to what they can do in life; they often grow up believing that they do not deserve to have life choices. In this vein, subordination can be “less a product of direct coercion, and more a product of when those who are dominated stop questioning existing power relations.”65 Providing diverse children with a sense of themselves as subjects with dignity, with lives of moral value, is critical to enabling them to critically appraise and exercise agency with regard to the world around them. Challenging this invisible internalized domination to enable people to see they have the right to have rights has been and continues to be essential in promoting the health and dignity of diversely situated children (and adults, as we saw in Argentina’s Green Wave) across varied contexts. If Latonya had contracted HIV around the time I met her in the late 1980s, she almost certainly would have died by now. Four decades after HIV/AIDS first came to light, it is now a chronic disease, not a death sentence, for many in upper- and middle-income countries, as well as in some low-income countries. This transformation is a consequence of practical progress in biomedical research and clinical practice as well as in human rights and other advocacy by and on behalf of people living with HIV/AIDS. Nonetheless, patterns of HIV/AIDS to this day illuminate structural inequalities between and within countries, and too many people whose lives are not invested with social and political value still suffer in the shadows.

In 2013, I was living in Tanzania while overseeing a study based at the Harvard T. H. Chan School of Public Health on the intergenerational impacts of maternal mortality. By then, there were few publicly funded AIDS orphanages remaining in East Africa, and those that existed were woefully underfunded because foreign donors had revised their views on the cost-benefit of charitable aid to them. That was the case with the Kurasini Children’s Home, the only public orphanage left in Dar es Salaam by 2013, which housed over a hundred children from infants up to age eighteen, some of whom were children of women who had died in childbirth, and some were AIDS orphans. By 2013, I was able to look at photos of Kurasini on the internet to know what to expect. But images on a screen, as Susan Sontag cautioned, too often provide only an illusion of understanding; the afternoon I visited, Kurasini bore little resemblance to the cheery place someone from afar might have imagined.66 Few children were playing in the open dirt expanse between buildings; a group of younger children quickly congregated and clung to me and my

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Tanzanian colleague as if starved for human affection. We all depend upon the touch of others to feel that we ourselves are human, and yet many do not have the luxury of taking that for granted even in “normal” times. The rooms were sparse and barrack-like, the bathrooms grim, and the food gruel-like; the children’s heads shaved to keep down lice, and even where posters had been pasted to walls, there was no evidence of anything that children there had created themselves. The atmosphere was inescapably bleak despite the bright sunny afternoon; these children were growing up in a gray world where it was difficult to see how they might develop a sense of their own distinct moral value or agency to act upon the world. In the last building we visited, we met Janet, who was a little younger than Latonya had been when I met her and, like Latonya, had an infant. She was surrounded by girls who were playing with the baby as if it were a doll, and seemed happy to have the attention of visitors. Janet wore a mask of bravado that concealed what she was really thinking as much as it projected an underlying fragility. We learned that she had been escaping from the grounds at night for months and having sex with men in the area (which was near a commercial port) for small amounts of money that were enough to buy alcohol or marijuana. I noted to myself that the baby had signs of being HIV-positive—fevers, diarrhea, skin infections, although neither Janet nor the baby had been tested. Kurasini did not test the children for fear of creating stigma and because even if a child were found to be positive, the orphanage could not treat them. If Janet and the baby lived until she turned eighteen, they would be pushed out into the streets and, as she had no particular skills and had a child for whom to care, it was more than likely Janet would depend upon transactional or commercial sex work. Janet—far more than Latonya—was never given any choices about her life, and by this stage she had no plans, no hopes beyond feeding and clothing herself and her baby, and not being brutalized in her next sexual encounter or being evicted from the orphanage in the short run. Children cannot question the world into which they are born. Janet had been born desperately poor in a very poor country with no meaningful social safety net; she had no access to contraception or even sex education; her parents had both died of AIDS, and she might be HIV-positive now too. She had no relatives who wanted to take her in, no resources to draw upon—in short, she had no plan B. As the COVID-19 pandemic left millions of children around the globe without their primary caregivers, I thought again about Kurasini. From the work on inter-generational impacts of maternal deaths I was doing at the time I visited, it is clear that counting the cadavers from this cataclysm is only the beginning

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of understanding the toll it will wreak on individual children as well as future societies. Even when not warehoused in places like Kurasini, the loss of primary caregivers too often translates into lost household income, displacement from the housing, school, and community children have known; anxiety, depression and other psycho-social impacts; and poor educational outcomes. In the case of women’s deaths in particular, the beneficial effect mothers (and sometimes grandmothers) have on intrahousehold resource distribution is lost to children, as is the protective, socially constructed influence mothers generally have with respect to health behaviors and the interface with health systems. It is impossible to heal the pain of losing a beloved parent or grandparent, or to dictate by fiat a loving household. However, the intrusive and moralizing charity to which Latonya and her baby were subjected, and the systemic neglect Janet and her baby faced, are the predictable results of intertwined moral and political economies of care. Decades of neoliberal policies have not valued social protection as a public good that requires robust public financing, leaving children’s fates to the arbitrariness of luck. At the same time, SAPs and layers of debt have hollowed out state capacities to provide adequate social protection across low-income and low-middle-income countries (LICs and LMICs). In addition to lifting the shackles of debt and austerity, our grossly unequal world now calls for sustained global and regional public investment in social protection, understood as a basis for the well-being of future generations in our interconnected world. Forty years after a new neoliberal narrative began to colonize our collective imagination, the challenge to advance health justice globally in today’s world remains nothing less than to reshape the political economy of avoidable suffering, for diverse children and adults. One overarching lesson to extract from the narrative of the 1980s is that moral conceptions about justice influence—and are influenced by—the institutional arrangements we come to take for granted in our societies and our world. The neoliberalism that swept the globe in the 1980s began to transform how we thought about social values as well as politics. Neoliberal economic organization diffused norms of individualism, of rights as claims by individuals and private actors to unfettered spheres of action, of health as conditions located in individual bodies. The mutual recognition of common dignity was severed, and society increasingly became a playing field on which corporations could act without regard to societal obligations. At the international level, the persistence and even exacerbation of inequality, despite technological, scientific, and other forms of progress, ceased to be a moral concern to the affluent societies in the economic North. To paraphrase Eduardo Galeano, when

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poverty and illness are not seen as fruits of injustice, they might arouse pity but no longer cause indignation.67 Yet, in the aftermath of this global crisis, “the reigning common sense that has underpinned political domination” since the 1980s has been profoundly shaken.68 Far more people have realized that we can choose other allegories of development and progress in the world—and that if we are to avoid climate catastrophe we need to do so. Indeed, a second lesson from the 1980s for advancing global health justice is that ordinary people can come together and, against all odds, change scientific research, institutional policies, and history. HIV/AIDS was an awakening for a generation of LGBTQ+ activists who refused to accept the homophobic morality that rejected them and, through their in-your-face HIV advocacy, exposed the homophobic narrative as a lie about social life in the US and elsewhere. Today the world is awash in grief and trauma, but we can look to the example set by that generation of crusaders, who managed to climb out of their grief and fear, find their collective political voice, and claim their dignity.

Chap te r Thr e e

Diverging Parables of Progress [P]romoting and protecting human rights is inextricably linked to the challenge of promoting and protecting health [because] health and human rights are complementary approaches to the central problem of defining and advancing human well-being. —Jonathan Mann et al.1 Neoliberalism’s financial bomb . . . not only destroys the polis, imposing . . . misery on those who live there, but also transforms its target into just another piece in the puzzle of economic globalization. —Subcomandante Marcos2 THE FIRST C L IENT I C A M E TO L OV E was don Timoteo López. I met don Timoteo in 1991 when I moved to Mexico City after graduating from law school with a fellowship to bring human rights claims to supranational forums. Don Timoteo was an elderly campesino from Guerrero, an impoverished state in the south riven by both drug and political violence then and today. Campesinos were disappeared from time to time, but residents rarely raised complaints, as they suspected police involvement or at a minimum complicity with the killers. A subsistence farmer, don Timoteo had refused the local drug lord’s request to plant poppies for heroin on his land. Guerrero was—and remains—one of Mexico’s top poppy-growing states and a direct transit point to the US market.3 The police, who were working for the local drug lord, harassed don Timoteo and then murdered his youngest son and tried to murder him. Don Timoteo survived a bullet wound to the abdomen and was transferred for treatment to a public hospital in Mexico City, where one of his sons lived. We met shortly after the first of several surgeries. Each week, sometimes several times a week, he came to the office of the human rights NGO where I worked, as we were trying to obtain legal protection and redress for him. He always wore a

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broad-brimmed sombrero and huaraches, and he never failed to bring an apple. From the very first time he came to the office, don Timoteo insisted that I examine him. “You must feel how I am, doctorcita,” pulling up his shirt and laying my fingers gently on the giant bandage across his large, bruised abdomen. At first, I was self-conscious and protested, and at almost every visit I would remind him that I had no medical knowledge. He would retort “but doctorcita, you are healing me. Can’t you see that?” It became a ritual: first I “examined” him, and then we shared the apple, sometimes with coffee or tea, while don Timoteo shared stories of his life. Don Timoteo had lived his entire life in extreme poverty, a condition defined not primarily by income level but by lack of agency and dependency on luck: the luck of dodging disease, managing to get a decent crop, and avoiding the predations of local caciques (bosses). It would have been understandable if he had sold his land or at least agreed to dedicate a portion of it to producing la goma, the milky, sticky sap of the poppies from which heroin is made; it would have been the profitable, and sensible, thing to do given the situation. But don Timoteo wanted to grow maize and beans and other vegetables, as his father had. He had built his house with his own hands on the plot of land his family had received during President Lázaro Cárdenas’s massive agrarian reform in the 1930s, which left approximately half of Mexico’s cultivated land in the hands of formerly landless peasants.4 In don Timoteo’s telling, his family received the land directly from Cárdenas himself, “the Great One,” on a day about which he said he remembered everything but was undoubtedly too young to have remembered much of anything. Don Timoteo was a widower. He told me that he had sworn to God that would never drink again if only his wife survived an unnamed and untreated illness, but she died. There is no way to know whether she was properly diagnosed or would have survived with adequate medical care. But the Mexican health system, which had previously adopted the Coordinación General del Plan Nacional de Zonas Deprimidas y Grupos Marginados de la Presidencia de la República (COPLAMAR; Program for the Protection of Marginal Groups) to provide rural health services in the spirit of Alma-Ata’s vision of community control, had been slashed in late 1983 in the midst of Mexico’s debt and economic crisis.5 In 1984, health system reforms that followed Structural Adjustment Program (SAP) dictates, including decentralization and user fees, were introduced. For the López family the health system ended up reinforcing rather than mitigating their social exclusion and disadvantage; there had not even been accessible information or



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explanations to help them understand what was happening. Nonetheless, don Timoteo never drank again, believing that he had to atone for the sins that had made God punish his wife. He told me about his two older sons, who had chosen to leave their land behind, whether to escape the poverty and violence or to pursue dreams piped in from movies, or both. He was staying with one son and his family in Mexico City; the other had made the arduous trip to the United States. The youngest of his three sons, his favorite, had stayed in Guerrero after his wife’s death; he was murdered the same day don Timoteo was shot. I came to cherish this sixty-odd-year-old man because, although he carried a profound burden of grief, where you would expect to find bitterness instead there was a contagious sense of humor and tremendous warmth. Don Timoteo showed me, as others have since, that it is possible to suffer the cruelest injustices and still retain generosity and kindness, and wonderment at the beauty in the world. That resilience in no way excuses structural violence, but it is something to profoundly admire. Part of what allowed don Timoteo to keep on keeping on, despite being literally and emotionally gutted, was fighting for his ranchito. He felt incomplete in Mexico City without his land, as though he were missing a part of himself. He had a relationship with the parcel of land on which he had lived basically his entire life, as though it were a living being, and he understood how to treat it, to make it happy. He wanted me to see his place and meet his horse, who “danced” but “only in the moonlight.” Yet before my colleagues and I had a chance to go to Guerrero, men showed up to finish off the job. It was clear there would be no real investigation of his death, and no accountability. I was devastated for months by don Timoteo’s murder and by a feeling that we—I—had failed him. From time to time, often when I felt particularly bereft, I would see what I took to be a sign, like a large woven palm-leaf sombrero lying on the side of the road, similar to the one he wore. I lit candles and brought apples for him on Día de Muertos; I wrote about him; I told his story to honor his memory. Decades later, I still carry don Timoteo’s memory with me. It reminds me why the Sisyphean struggle for dignity and rights matters; it reminds me that profound caring connections are not sentimental luxuries but essential to sustaining this struggle over time. I tried to understand how don Timoteo’s story fit into a much larger puzzle of social and economic upheaval in Mexico and the world at the time. Unlike Argentina, Mexico was formally a democracy with an elected government and

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separation of powers. But by the early 1990s the ruling Partido Revolucionario Institucional (PRI; Institutional Revolutionary Party) had held uninterrupted power since the 1917 Revolution. The PRI had its corrupt tentacles in every aspect of Mexican political and communal life. In Mexico’s hyper-presidential system, the executive branch wielded extraordinary powers which it used to adopt structural reforms necessary for Mexico’s entry into the North American Free Trade Agreement (NAFTA). In 1991, then President Carlos Salinas de Gortari declared the end of land reform in Mexico and spearheaded constitutional changes to allow ejidos to be rented or sold outright. Cárdenas’s agrarian reform had granted communal usufruct rights through the ejido system while preserving ownership rights in the state. But foreign investment required undivided property rights; subsistence farmers like don Timoteo had no place in a “modernized” Mexican economy. The change in law made real property easily transferable rather than communally held, which facilitated the dispossession of thousands of campesinos who became peones working for someone else, whether growing poppies or other legal crops. Enabling large agro-conglomerates to buy up land was part of a modernization narrative whereby the use of herbicides and pesticides, and continual degradation of the land from planting the same cash crops were displaced from evaluations of the costs and benefits of growth, just as was the immiseration of campesinos. Mexico had been an early and zealous adopter of structural adjustment after its debt default in 1982 and, under Salinas de Gortari, was preparing for deeper economic integration in NAFTA through sweeping changes in commercial regulation, and tax, labor, and property law, among other things. On January 1, 1994, the day that NAFTA went into effect, the Ejército Zapatista de Liberación Nacional (EZLN; Zapatista National Liberation Army) declared war on the government in protest of the structural marginalization of indigenous communities in Chiapas and across Mexico. The soon-to-be-famous Subcomandante Marcos—complete with black ski mask and pipe—read out the First Declaration of the Lacandón Jungle: “They do not care that we have nothing, absolutely nothing, not even a roof over our heads, no land, no work, no health care, no food nor education . . . but today, we say ENOUGH IS ENOUGH.”6 Less than six months before the Zapatista uprising, in July 1993, Forbes applauded the eleven new billionaires who had been created in Mexico just since 1991.7 When we consider not just how don Timoteo died but why, we have to look beyond the thugs who killed him. This chapter tells the complicated story of the diverging understandings of development and social progress during the early 1990s and how these changes affected people such as don Timoteo, whose lives



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had been rendered externalities on the road to state modernization. First, it examines the trans-sectoral UN conferences that aimed to draw the post−Cold War world together to address interrelated problems of environmental sustainability, population dynamics, women’s rights, food security, and education. Second, as the Cold War thawed, economic, social, and cultural (ESC) rights, including health rights, were finally recognized as legally enforceable internationally and nationally. For its part, the newly established UN Committee on ESC Rights adopted a minimum threshold level of ESC rights, which shifted the onus to governments to demonstrate why they were not meeting these levels—not as charity but as a legal obligation to people like don Timoteo and the Zapatistas. Within countries, a wave of new and reformed constitutions replaced the outdated social contract of the traditional liberal state of law with new social contracts for a “democratic state of law,” which also enshrined obligations to address minimum standards of living and substantive inequality, and implied structural innovations in adjudication as well. The chapter underscores the importance for strategic rights praxis today of understanding the multitude of national actors involved in vernacularizing abstract rights set out in international law, as well as the nascent use of supranational forums by human rights advocates to adjudicate rights, which greatly expanded during the 1990s. Finally, we turn to the other parable of progress of deepening economic integration during the 1990s, which had enormous impacts on the health rights of poor subsistence farmers such as don Timoteo, and other sectors. Growing financialization (the increasing share of national and global economies dominated by financial sectors) accelerated the expansion of trade and foreign investment, which required massive legal and regulatory changes. In addition to NAFTA, the World Trade Organization (WTO), established in 1995, required member states to ratify the agreement on Trade-Related Aspects of Intellectual Property (TRIPS). Policy space began to shrink significantly across countries in the global South as democratic political projects gave way to economic projects of growth, competitive positioning, and capital enhancement. What had previously been politically contested issues of debt, tax, trade, and the like, became technical issues to be managed by lawyers, economists, and bankers in the North, beyond the purview of the public. Many leaders, including President Salinas de Gortari in Mexico, embraced their roles as modernizers and used their powers to pass significant reforms with virtually no meaningful democratic discussion. However, this process was in no way benign: Mexico epitomizes the systematic violence necessary for the state to legal promises of rights to the citizenry.

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UN Conferences on Human Rights and Development: Emergence of New International Norms and Institutions A Decade of Trans-Sectoral Conferences; Global Civil Society The 1980s had been marked by development policies that met basic needs only for those who could not fit into productive sectors in the newly trimmed-down state. In 1990, the UNDP’s launch of the Human Development Report and the Human Development Index, based on Amartya Sen’s capabilities theory, put institutional force behind addressing the multidimensional aspects of poverty as the starting point of development rather than an afterthought. Throughout the early 1990s, the UN asserted its authority as a norm-setting body, convening international conferences on the major and interrelated issues of the time. These included the World Conference on Education for All (Jomtien, Thailand, 1990); the Río Conference on Environment and Development (Earth Summit, Río de Janeiro, 1992), the World Conference on Human Rights (Vienna, 1993), the International Conference on Population and Development (Cairo, 1994), the Fourth World Conference on Women (Beijing, 1995), the World Summit for Social Development (Copenhagen, 1995), and the World Food Summit (Rome, 1996). They reinforced an understanding of development as “people-centered,” “sustainable,” “social,” and always trans-sectoral, which required legal and institutional changes in societies for diverse people to flourish. At the same time, in the declarations of these conferences, earlier notions of a New International Order (NIEO) were largely displaced by an emphasis on the imperative of “international assistance and cooperation” to help people in postcolonial and low-resource countries achieve their rights. The UN conferences had varying dynamics; however, each produced not only norms but also institutions and procedural mechanisms that largely continue today. In 1992, for example, 197 countries at the Earth Summit in Río agreed on a Framework Convention on Climate Change that recognized the “dangerous anthropogenic interference with the climate system.”8 The framework convention set out principles, but the language setting out what states undertake to do had to be negotiated over dozens of annual “conferences on principles” (COPs) since then.

ESC Rights and CP Rights are Interdependent and Indivisible; Women’s Rights Become Human Rights After the end of the Cold War, the World Conference on Human Rights held in Vienna in 1993 importantly recuperated the equal imperatives of ESC and CP



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rights. There 171 governments recognized that “all human rights are universal, indivisible and interdependent and interrelated”9—civil and political (CP) and ESC rights—and committed to strengthening the machinery of the United Nations to support this holistic understanding. Then UN secretary-general Boutros Boutros-Ghali called the Vienna Declaration and Programme of Action “a new vision for global action for human rights into the next century.”10 Indeed, it was. Vienna affirmed that “extreme poverty and social exclusion constitute a violation of human dignity and that urgent steps are necessary to achieve better knowledge of extreme poverty and its causes, including those related to the problem of development, in order to promote the human rights of the poorest, and to put an end to extreme poverty and social exclusion and to promote the enjoyment of the fruits of social progress.”11 It also called on states to foster the participation of impoverished people such as don Timoteo and the Zapatistas in policy-making to combat poverty. At the same time, human rights were described as “birthrights” and “their protection and promotion” as “the first responsibility of Governments.”12 The right to development was still evident in Vienna and the other UN Conferences; indeed, national sovereignty over natural resources of all kinds had been enshrined in the Convention on Biological Diversity set out for signature in Río in 1992. However, the world-reordering aspirations of earlier decades had shifted by the early 1990s, whereby the Vienna Declaration and Programme of Action called for achieving greater global equity through the “enhancement of international cooperation.”13 Vienna also signaled growth in global civil society, which would be sustained by the UN conferences throughout the decade. In 1993, Vienna was attended by an unprecedented number of civil society actors: more than seven thousand representing seven hundred NGOs.14 A year later, four thousand NGOs from one hundred thirty-three countries attended the NGO Forum at the International Conference on Population and Development (ICPD) in Cairo.15 In 1995, almost thirty thousand attended the NGO Forum at the Fourth World Conference on Women in Beijing.16 Civil society involvement at all levels—from preparatory meetings to NGO forums at the conferences—proved crucial to the outcome documents.17 Given that the NGO forums were organized before widespread use of the internet, and when international travel was much more difficult and expensive, the strength and impact of this new global civil society was extraordinary. In the new post–Cold War geopolitical environment, the UN system seemed unfit for purpose. Critics noted the lack of human rights−based policies in its institutional actions and the shallow permeation of human rights across the

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organization.18 The Vienna Declaration and Programme of Action led to the establishment of the Office of the High Commissioner for Human Rights (OHCHR) to coordinate human rights activities by, for example, special rapporteurs), to liaise with treaty-monitoring committees, and to strengthen the UN system in human rights knowledge and actions.19 It also led to the creation of National Human Rights Institutions (NHRIs) around the world, for which the Mexican National Human Rights Commission established in 1990 had provided one model. In addition to reaffirmation of the interdependence and indivisibility of all human rights, the Vienna Declaration and Programme of Action established that “the human rights of women and of the girl-child are an inalienable, integral and indivisible part of universal human rights.”20 Further, a hugely successful global mobilization by feminist organizations “helped to establish the specificity of women’s human rights, including their right to bodily integrity and freedom from violence.”21 Vienna was the beginning of gender-sensitive interpretation of international human rights norms whereby the state could be characterized as committing human rights abuses if it failed to prevent or sanction abuses of women by private actors. The Global Tribunal on Violations of Women’s Human Rights, a parallel nongovernmental activity at Vienna, was the symbolic culmination of efforts to make governments recognize the impacts of violence against women and the gendered nature of experiences of injustice. Thirty-three women provided testimony, and a panel of “judges” assessed accountability for the abuses presented, explaining that they could be interpreted as violating human rights principles, and making concrete suggestions on redress.22 The tribunal showcased women and their claims regarding “private” and intimate issues as the world and government representatives looked on. Enacting that process in public explicated norms and state responsibilities in ways that responded to women’s lives. It also empowered women to see themselves as claimants, mobilized enormous support for changing paradigms of rights, and generated pressure to create the mandate of the UN Special Rapporteur on Violence against Women. This new understanding of the state nexus to the systematic subordination of women was reflected in a nonbinding Declaration on the Elimination of Violence against Women, which was adopted by the UN General Assembly just months after the Vienna Conference.23 Further, feminist activism in Latin America led quickly to the promulgation of the binding Inter-American Convention on the Prevention, Punishment and Eradication of Violence Against Women (the Belém do Pará Convention).24 The iterative refinement of what different forms of



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violence meant in real women’s lives would come to underpin advocacy around reproductive justice in Argentina and elsewhere, as discussed in Chapter 1—and in turn to recursively influence concluding observations and general recommendations from treaty-monitoring bodies and supranational tribunals.

Population Policies and Reproductive Rights; Gender versus Sex The impact of Vienna on women’s health rights cannot be understood in isolation from the subsequent UN conferences of the 1990s. As discussed in Chapter 1, since the 1960s and 1970s, women’s movements in the economic North had been largely concerned with reproductive autonomy, domestic violence, and formal equality in employment. In the global South, women faced different social, cultural, and economic issues, different environments, and different possibilities for mobilization. Moreover, many feminists in the global South had been concerned about inequalities spawned by the global economic order. Bringing together networks of feminist activists from North and South repeatedly during the 1990s for these trans-sectoral UN conferences was invaluable for bridging some distances in political agendas around a set of gender equality goals. Population debates were nothing new in the 1990s. Sen has written of the debates between Malthus and Condorcet at the turn of the nineteenth century, which Sen argues marked the original framing of “collaborative” and “override” approaches.25 Condorcet was confident that the threat of overpopulation could be solved by reasoned human action “through increases in productivity, through better conservation and prevention of waste, and through education, especially female education, which would contribute to reducing the birth rate.”26 When ordinary women were educated and given the necessary information and conditions, they would see the value of limiting family size through voluntary family planning “rather than foolishly . . . encumber the world with useless and wretched beings.”27 Malthus, on the other hand, did not trust the ability of ordinary women to reason and favored “overriding” their will to control overpopulation.28 These debates continued to inflect social policies a century later. Think of the moralizing attitudes and control Latonya faced as an example. On a global scale, governmental concerns about population explosions, as well as lagging population growth, had produced rampant violations of both men’s and women’s rights from India to Romania by the time of the Cairo conference. ICPD achieved many things, but perhaps above all it reflected the triumph of the “collaborative approach”: trusting ordinary women to make reasoned choices about their lives and their potential children’s lives when given adequate

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information and supported by social institutions. However, ICPD represented not just an upheaval of thought; it implied the need for revolutionary changes in policy, program, and practice within and beyond the health sector. Programs that were previously administered separately, such as for family planning, sexually transmitted infections, and maternal health, were now to be joined together under the umbrella of the newly defined “reproductive health.”29 In ICPD, reproductive health was based on individuals’ agency over their reproductive lives, and that implied “that people are able to have a satisfying and safe sex life and that they have . . . the freedom to decide if, when and how often to [reproduce].”30 Needless to say, ICPD was not all peace, love, rainbows, and unicorns. Advances made by an extraordinary convergence of LGBTQ+, abortion, and women’s health advocates from both North and South were met with staunch opposition by conservative groups. Difficult choices had to be made in lobbying for the outcome document, and tensions remained between more mainstream feminists and indigenous and other social movements, as well as between North and South. Sexual rights were dropped from the final document.31 Abortion was mentioned in terms of “the health impact of unsafe abortion,” but expanding its legalization was not in the final outcome document either.32 Nonetheless, it is fair to say that ICPD was a milestone in the conceptualization of reproductive rights and in bringing together women’s movements from North and South. It also became a driving factor in “promoting the use of law, policy and rights in the service of reproductive health.”33 A year later, in 1995, the Fourth World Conference on Women in Beijing enabled the SRHR movement to continue mobilizing around an expanded platform for women’s health and human rights. The Beijing Platform for Action reiterated and strengthened what had been stated in Vienna regarding violence against women as a violation of human rights.34 It also emphasized “gender stereotypes” and “gender bias” as inequities in power to be overcome: “Health policies and programmes often perpetuate gender stereotypes and fail to consider socioeconomic disparities and other differences among women and may not fully take account of the lack of autonomy of women regarding their health. Women’s health is also affected by gender bias in the health system.”35 By the mid-1990s, Judith Butler and other important scholars had theorized the social construction of gender and how gender subordination functions in women’s lives. Butler distinguished “sex, as biological facticity, and gender, as the cultural interpretation or signification of that facticity,”36 and argued that the “script” of gender performance is conveyed through socially established



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meanings enacted repeatedly in our lives and transmitted from one generation to the next. If gender roles were socially and culturally established, not fixed and immutable, their meanings would be subject to change. And Beijing recognized that realizing women’s health and other rights requires subverting predefined gender roles. Challenging the power of negative gender stereotypes about women—naturalized shortcuts to understanding how women should act and what they should want—called for multiple strategies beyond formal norm change, such as education and institutional changes in health systems and beyond. At the same time, the idea of gender as a social construction was a red flag for conservatives of varying stripes—“a code for the disruption of cherished certainties about human relations.”37 Coupled with ICPD having put women’s choices and agency at the center of development, Beijing’s Platform for Action lit a match under conservative opposition to gender equality, especially from the Vatican, conservative Islamic states, and evangelical Christians in the United States.

Social Rights and New Social Contracts The changing geopolitics that had permitted reaffirming the indivisibility and interdependence of human rights at the Vienna Conference also played out in the construction of international human rights norms and in constitutional law. Against the backdrop of structural adjustment in the 1980s, scholars such as Henry Shue had argued for affirming a minimum core of basic subsistence rights including in health. And in 1990, the UN Committee on Economic, Social and Cultural Rights (UN Committee on ESC Rights) adopted General Comment 3: The Nature of States Parties’ Obligations in which it established the notion of an essential minimum of ESC rights: “A State party in which any significant number of individuals is deprived of essential foodstuffs, of essential primary health care, of basic shelter and housing, or of the most basic forms of education is, prima facie, failing to discharge its obligations under the Covenant.”38 Thus the committee argued that protecting the worst-off in society from the grinding degradation of extreme poverty was not a programmatic aspiration or a laudable effort but a legal obligation of parties to the covenant, without which these rights “would be largely deprived of [their] raison d’être.”39 General Comment 3 was saying that an essential minimum was necessary to guarantee a person’s nondependence, so that no one could be converted into a mere instrument for others’ ends—whether through imposed serfdom or through wages that amounted to forced labor. An essential minimum as a matter of rights

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also implied recognizing the causes of extreme poverty as changeable through political choices, including laws, policies, and programs. Consider don Timoteo’s life, for example. Over time, changes in laws and policies that ensured (or curtalied) land distribution and access to credit, security from the infringements of others, and social entitlements to education and healthcare, structured possibilities for him and his family to live with dignity. For the UN Committee on ESC Rights, the concept of a minimum core that could be applied across varied income levels posed a major challenge.40 Nevertheless, setting out a minimum threshold level was fundamental for the advancement of ESC rights as real rights in the world that existed in 1990. Further, the illustrative list provided by the committee was never intended to be invariant. Context was to be addressed through dialogue with States Parties—“scoping and benchmarking ”process— whatever its limitations and defects in practice. Shifting the burden of proof, including when a state alleged an economic downturn, allowed the committee to require States Parties to present reasoned arguments and valid evidence to justify actions taken to redress any extreme denial of ESC rights within their countries, as well as resource limitations and other constraints on state action. This dialogue would necessarily differ with respect to the lack of essential primary care for excluded minorities in a middle-income country, such as indigenous groups or poor campesinos in Mexico, or the lack of ESC rights in situations of mass deprivation in a country like Tanzania. Dialogue to create public learning and assess compliance has been the case with CP rights as well. For example, the assessment of programs to train police investigative techniques that ensure freedom from torture, which is a nonderogable obligation under the Covenant on Civil and Political Rights, in practice requires some contextualization. Moreover, and equally important, this minimum level was never meant to substitute for, or read in isolation from, obligations of progressive realization of ESC rights under the covenant.41 Maintaining this nuanced understanding of minimum core obligations was crucial if these treaty rights, including the right to health, were not to end up serving as palliative remedies for egregious instances of degradation, rather than as scaffolding for creating more egalitarian societies.

At the National Level: “Transformative Constitutionalism” and New Roles for Courts The essential minimum originally sprang from sociological concepts of obligations in the Bismarckian state.42 Indeed, many constitutional formulations



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explicitly linked an essential or existential minimum to the purposes of the modern welfare state, or a democratic state of law, that were enshrined in recently adopted constitutions. From the late 1980s through the mid-1990s, a wave of new and amended constitutions—from Argentina to South Africa—included CP rights but also added generous enumerations of ESC rights reflecting a new vision of the social contract. This “transformative” or new “social constitutionalism,” as it was called in Latin America, “aspired to large-scale social change through political processes grounded in law.”43 The trend was referred to as new social constitutionalism in Latin America because the original social constitutionalism derived from the Mexican Constitution of 1917, which among other things included labor rights directly in the text, reserved subsoil rights to the state, and explicitly stated that the state was the “rector” of national development and responsible for the economy. However, in the early 1990s, Mexico’s inspiring vision of social constitutionalism was being altered in response to the large-scale social changes necessary for growing economic integration under NAFTA. In many post-dictatorship and transitional contexts in the region and elsewhere, however, social constitutions reflected emancipatory aspirations to transcend the impacts of historical oppression and exclusion. For example, the Constitutional Court of Colombia eloquently captured the changed conception of the state under the Colombian Constitution of 1991: “The realization of freedom and equality requires measures, actions, entitlements and services that a person by himself cannot achieve. The social state of law thus evolved from a liberal state of law, animated by the purpose of ensuring that the material prerequisites of freedom and equality are effectively guaranteed.”44 Thus, although still grounded in the institutions of the liberal state, these new constitutions reflected a much more egalitarian nation-building project and the use of rights not just as shields but tools for greater social equality. After histories of political and social exclusion, democratic states of law also often embraced a more robust notion of active citizen engagement in decisions affecting their lives as opposed to the right to be left alone. According to the Constitutional Court of Colombia, “the concept of participatory democracy contains within it the democratic principles that inform the practice in spheres other than the political. It requires a rigorous re-evaluation of the concept of “citizen” and the role of the citizen in national life. [I]t also requires qualitatively increasing participation in individual, economic, familial and social aspects of life.”45

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Addressing substantive inequalities through this new constitutionalism also called for more politically and morally engaged adjudication. Constitutional reforms were accompanied by structural reforms and in some cases the creation of constitutional courts as in Colombia and South Africa, for example, or a specialized chamber of a constitutional court as in Costa Rica. High-court judges were no longer seen as mere custodians of legality but as guardians of egalitarian aspirations in the new constitutions, and in practice the chief bricoleurs of new legal architectures. Ciro Angarita, one of the first justices to serve on the Constitutional Court of Colombia, stated this view powerfully in 1992: “[The] relation between fundamental rights and judges is a sharp departure from the previous constitution; a change that can be defined as a new strategy for rights enforcement that consists in granting to judges . . . the responsibility of promoting the development of fundamental rights. In the previous system rights only had symbolic force. Today, with the new constitution, rights are what judges say they are [and can be enforced].”46 In the 1990s, this new constitutionalism seemed to promise social transformation through rights and the rule of law, and promoted the idea that courts, especially high courts, could be engines of democratization. Judicial interpretations of law became less formalistic in this more engaged adjudication, which was critical to advancing health rights among other ESC rights. In some countries, including Colombia, courts quickly began to erode artificial distinctions between CP and ESC rights, paving the way for enforcement of health, which was often not formally designated a fundamental right. In countries such as Costa Rica, courts began to interpret the right to life with dignity more broadly to include access to health care, first HIV medications and then more broadly. In turn, doctrines that had reserved decisions with budgetary implications to governments began to fall away. The erosion of formalistic interpretations of constitutional rights was accompanied by judge-made procedures that came to be equally essential to the judicial interpretation and enforcement of health rights. For example, innovations such as the expansion of amicus curiae (friend of the court briefs) allowed for thirdparty advocates as well as scientific expertise to be introduced in health rights cases. Amicus curiae from varied experts as well as people with lived experience have proven essential to advancing external scrutiny of health decisions—from abortion to mental health—which are ordinarily cloaked in technocratic medical expertise. Further, locus standi (standing) rules regarding who can bring a case were loosened to varying degrees across civil and common law jurisdictions, so that



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NGOs and other groups could bring claims on behalf of directly affected plaintiffs in collective cases, such as water rights in South Africa or the effects of pollution on health in Argentina. As often plaintiffs came from marginalized and disadvantaged communities, loosening standing greatly extended possibilities of public interest litigation to advance health-related rights. In many countries in Latin America, the introduction or modification of protection writs (e.g., amparos, tutelas) under newly reformed constitutions transformed individuals’ access to courts to resolve complaints, including specific health claims, in a matter of days rather than months or even years. In some countries, these protection writs could be presented orally—or famously written on banana leaves in Costa Rica—and often required no legal representation.47 For readers from the US or another common law jurisdiction, it is important to understand that these protection writs function more like administrative complaints than what we generally think of in terms of judicial proceedings. In general, they resolve only the case at hand (e.g., the right to a specific medication or treatment) and their impacts are usually, but not always, limited to the petitioner. The constitutionalization of ESC rights including health meant that conflicts with providers or insurance companies often became constitutional rather than merely administrative matters. Protection writs were meant to bridge the gap between exuberant promises in newly reformed constitutions and the realities of poorly regulated health care and other social systems such as pensions. Further, in countries known for heavy judicial backlogs, writ mechanisms spelled out a constitutional claim that could be reviewed by any judge in the country and allowed individuals to jump the queue. For example, in Colombia tutelas by law must be resolved within ten days. These innovations were particularly consequential in health, where the ethical dimension to the passage of time in obtaining lifesaving care is acutely apparent. In Latin America, individual protection writs to secure health rights in particular increased exponentially over the next decades. Eventually, as we will see in Chapter 6, using courts to resolve individual medical complaints instead of transforming the system came to raise questions about the judicialization of health policy in Latin America.

International and National Law, Vernacularization, and Strategic Implications for Advancing Health Rights Transformative constitutionalism was deeply influenced by international human rights concepts and law. In some places, new constitutions explicitly included

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ESC rights (South Africa, for one); in others, ESC rights set out in international human rights treaties were incorporated in “constitutional blocs,” and in many countries both occurred (such as Argentina and Colombia). The embedding and/or incorporation of international standards into new constitutions changed the nature of the dialogue between national and international law and iterative interpretation and adaptation of norms. The interpretation of constitutional rights required harmonizing national norms with a variety of international and regional norms and, in turn, incorporating arguments about the meaning of dignity, equality, freedom, and other broad concepts into socioculturally determined understandings. After constitutionalization of ESC rights, Daniel Brinks, Varun Gauri, and Kyle Shen argue, the process that Sally Merry termed “vernacularization” “selectively translates apparently universal aspirations into a much more localized version deeply grounded in local social and political realities” [emphasis added]. They note that the effectiveness as well as universality or particularity of ESC rights “is a function of . . . vernacularization.”48 For example, in some cases local use of the vernacular on reproductive rights spotlights the most “deserving” cases, such as teenage victims of rape, at times undermining broader justice arguments about access to abortion. In Chapter 1, we noted that international law is a starting point for understanding the legal right to health, but this is never the whole story. What Jean Dreze says about the right to food is equally if not more applicable to health: “The entitlements and responsibilities associated with the right . . . are far from obvious.”49 In the vernacularization of principles set out in Article 12 of the UN Covenant on ESC Rights and other treaties, there is heated contestation at the national level over the responsibility of the state versus that of individuals for aspects of health, as well as over the allocation of responsibilities between different sectors and parts of government. It is not just that new empirical conditions shift reasonable expectations of the state in protecting health, both because of novel infections and because of newly discovered technologies and treatments. As Norman Daniels argues, as not all of a population’s health needs can be met, the task of justice is meeting health needs fairly, through deliberative processes, given there are not universally shared agreements as to what that entails.50 Moreover, the right to health depends on the structure of health as well as legal systems. Within countries, ministries of health are responsible for certain issues relating to care and primary prevention, but other ministries might be responsible for water and sanitation, and other public health measures. In federalist



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systems, health duties are divided between federal and subnational governments, each with specific budgetary and regulatory authorities. For example, is it up to a state or the federal government to impose a vaccine mandate and establish priorities for life-saving care? Further, some nonstate actors often provide services while others greatly affect public health conditions as well as access to care, and regulation of these actors is inherently part of protecting the scope of any right to health. Background norms and practices within health institutions can produce bureaucratic barriers to care, as well as involuntary treatment. All of these contested issues have produced struggles in litigation, legislation, regulations and health protocols over these years. Over time, changing conditions and evolving understandings of what it means to be unjustly deprived of health lead to changes in the legal norms at national and international levels, as we saw in relation to abortion in Argentina. As formal legal norms are modified, they can foster changes in social norms and institutional practices as well. Understanding these struggles is the key to deploying health rights in transformative ways. It is a conceptual and strategic mistake to focus on top-down “operationalization” of international standards through state bureaucracies.51 Doing so fundamentally misconstrues how rights garner normative authority, provide specific inflections to contested social demands, and ultimately effect social change in health. First, as we will continue to see throughout this book, when rights are deployed effectively to advance health— abortion rights in Argentina, say, or access to HIV/AIDS medicines—they are not separate from but integral to social justice struggles. Constructive use of rights entails a dynamic praxis that, according to Grainne da Burca, “is activated, shaped, and given its meaning and impact through the ongoing mobilization of affected populations, groups and individuals, and through their iterative engagement with an array of domestic and international processes over time.”52 Second, viewing the advancement of health rights as a top-down operationalization of formal rules risks obscuring the informal and background norms within health and other systems53 that limit how health rights are made real to different actors over time, how services are revised, and how policy-makers are persuaded to change programs and practices. A top-down approach ignores the structural limits on public capacity that are the most tenacious barriers to health and other ESC rights. As Roberto Gargarella argues, the incorporation of social rights into constitutions in Latin America has produced complicated results.54 On the one hand, it reflects fundamental principles binding a democratic state of law. On the other hand, it has not

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changed the hardwired architecture of the state institutions necessary to realize these rights, including hypertrophied presidentialist powers, weak institutions, and limited political representation in much of the region. Finally, just as ESC rights were being constitutionalized, neoliberal reforms were affecting societies and health sectors around the world. Bureaucratic operationalization can inadvertently make human rights complicit in precisely the forms of global and national governance that protect capital from democratic demands for social justice and redistribution.

Using International Forums to Define State Responsibility The other side of the new dialogue between national and international norms emerged from the turn to supra-national forums for adjudication that allowed for interpretations of regional and UN human rights treaties. At the same time as courts presented new opportunity structures in some countries, advocates also turned to regional and international mechanisms when national courts were seen as ineffective in bringing justice for victims of state abuse. New human rights NGOs, such as the Center for Justice and International Law (CEJIL), were founded in the early 1990s with the mission of bringing human rights cases to supranational forums to combat precisely the kind of impunity we saw in don Timoteo’s case.55 In the 1990s, establishing a hierarchy of international human rights law was especially appealing to feminist lawyers because many issues that most affected women’s health and rights had been marginalized in domestic politics and law. Even where there were transformative constitutions, vernacularization was often shaped by male constructions of reality, which rendered gender discrimination invisible and imposed moral narratives on issues affecting women’s health and rights, from abortion to sex work.56 Supranational litigation was a way to seed the new standards for reproductive rights that had been articulated in Vienna, Cairo, and Beijing, as well as CEDAW and regional treaties. In 1992, the Center for Reproductive Rights (CRR)—then the Center for Reproductive Law and Policy—was founded and would become the single most important “norm entrepreneur”57 in reproductive rights in the world. Luisa Cabal, Monica Roa, and Lilián Sepúlveda, writing about CRR’s work in Latin America, argue that it “pioneered the use of international litigation as a strategy to ensure that nationallevel legislation, policies, and jurisprudence better reflect the international community’s recognition of reproductive rights [and] to push for development of new standards for the protection of reproductive rights under international law.”58



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When I met don Timoteo, I was working with Mexican colleagues to bring cases to supranational forums in cases where domestic redress was futile. For example, when documenting individual cases proved hopelessly inadequate, my colleagues and I documented a pattern of transfers and reassignments, and even promotions, for Mexican Federal Judicial Police officers involved in systematic abuses of human rights, including arbitrary detention, torture, and extrajudicial execution. We brought these cases to the UN Committee against Torture (CAT), which was reviewing Mexico’s compliance with the treaty.59 A scathing report, coupled with massive press coverage of the findings, contributed to various police officials being suspended, fired and even facing internal charges in some cases. In conjunction with an array of other scandals, the report contributed to thenAttorney General Morales Lechuga stepping aside and being replaced by Dr. Jorge Carpizo Macgregor, the first director of the National Human Rights Commission. Recent scholarship has claimed that this “anti-impunity turn” in human rights fostered the depoliticization of structural inequality,60 so it is important to distinguish between contexts as well as between certain international NGOs, such as Human Rights Watch, and “the human rights community” writ large. In Mexico, as Asa Laurell, the Mexican physician and health scholar, notes, the state played a decisively repressive role in dismantling former institutions to “diminish the intervention of the state” in pursuit of neoliberal modernization.61 When workers protested the loss of pensions and benefits, they were swiftly and brutally repressed. Human rights groups in Mexico understood that such violence was not incidental but was a central feature of the restructuring of society that the government was pursuing. For example, the PRI-coopted Confederation of Mexican Workers (CTM, for its acronym in Spanish) regularly undermined collective bargaining agreements and violently squelched clamor over wage, benefits, and lay-off grievances. In a prominent incident in 1990, one worker, Cleto Nigmo Urbina, was killed and fifteen more were shot when CTM-directed thugs viciously dissolved a protest over Ford Motor Company’s withholding of annual benefits (aguinaldos) for taxes at their Cuautitlán plant.62 In light of impunity for perpetrators and lack of redress for victims, labor lawyers sought redress through the Inter-American System. At the time, it proved impossible for us to causally connect the actions of the thugs with state responsibility as a matter of international law. However, just as in Argentina businesses had colluded with the military junta to brutally suppress labor rights, there was no doubt that both the Mexican state and Ford were complicit. A business-friendly environment was necessary to secure and

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maintain foreign investment. In turn, labor “flexibilization”—including reducing benefits and making it easier to dismiss workers —was a pillar of the structural adjustment that the Mexican government had zealously undertaken since the 1980s, and a key to NAFTA. Likewise, far from seeking to draw attention away from the structural injustice in rural, disproportionately indigenous communities that the Zapatistas were rebelling against, human rights advocates diligently documented social conditions, including nutrition and health, as well as abuses against the Zapatistas by the military and paramilitaries in Chiapas. Most human rights NGOs in Mexico were not opting for an “apolitical struggle,” as some prominent international NGOs and donors were. When I lived in Mexico, many if not most groups were connected to the progressive side of the Catholic Church; deeply influenced by liberation theology, they explicitly pursued a “preferential option for the poor.”63 Although there was intense fighting for twelve days after the announced rebellion, the EZLN revolt itself was based not on older revolutionary notions of class warfare. Rather, it was explicitly based on human rights and inclusion of diverse identities in an inclusive democratic society, with its slogan, “Todos los derechos para todos”(All Rights For Everyone).64 Re-orienting abstract legal and political critiques to focus on documented impacts of structural inequality on real people’s socially embodied lives responded to the opportunity structures that existed in the early 1990s, given the existing state of international law as well as the tremendous threat of repression that loomed over all critics of the Mexican government.

The Other Story: Deepening Neoliberalism Transformations of Discourse and Governance By the early 1990s the International Monetary Fund (IMF) had become the world’s leading promoter of market-liberalizing reforms through structural adjustment.65 Shockingly in retrospect, this radical transformation in less than a decade—and all of its implications for global economic governance—had not required formal renegotiation of agreements made at Bretton Woods as other transformations had. For example, in 1971 new legal agreements were drawn up to change the way currencies were pegged to the US dollar, which had become deeply politically contentious.66 In this case, the IMF transformation was “a process of norm substitution—the alteration of everyday assumptions about the appropriateness of a particular set of activities.”67 As Alexander Kentikelenis



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and Sarah Babb note, “such de facto but not de jure institutional change preempts overt contestation or lengthy negotiations and masks underlying politics through symbolic work.”68 This trend quietly allowed unelected experts to decide an increasing number of questions that were fundamental to the political and economic conditions under which people would live. The tectonic changes in laws and institutions called for under neoliberal governance within countries required a specific parable of progress in the world. According to Morten Bøås and Desmond McNeill: Powerful states (notably the USA), powerful organizations (such as the IMF and the World Bank Group) and even, perhaps, powerful disciplines (economics) exercise their power largely by framing, which serves to limit the power of potentially radical ideas to achieve change. A successful framing exercise will both cause an issue to be seen by those who matter and ensure that they see it in a specific way. And this is achieved with the minimum of conflict or pressure. For the ideas appear to be “natural” and “common sense.” 69

Key to this framing was referring to neoliberal progress as “rationalization” and “modernization” of the state, which was eagerly picked up by many governments and elites across the South, including in Mexico. It was in the name of this seemingly unquestionable good of modernization, touted even in his inaugural address,70 that Salinas took so many executive actions to deregulate, privatize (including health), and open the country to foreign investment through NAFTA and otherwise. The parts of the modernization project that could not be accomplished through executive action faced little resistance from the PRI-dominated legislature. Mexico was not alone in removing the neoliberal agenda from democratic contestation. For example, Juan Arroyo dubs the health reforms that took place across Latin America during the 1990s “silent reforms” because of the lack of public or democratic discussion involved in determining the shape of the system.71 There is no question that powerful executive branches in undemocratic governments and elites, including Mexico’s, embraced their new roles as champions of “modernization” together with new opportunities to exploit for economic and political advantage. However, it is also true that deepening global economic integration made it increasingly difficult for indebted nations to resist neoliberal framing. As Thomas Friedman suggests, the range of political choices became reduced to fit that framing: mainstream opposition parties offered Pepsi; incumbents offered Coke.72 More radical proposals were pushed to the fringes of

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the democratic spectrum and delegitimated as unserious. For Wendy Brown, increasing reliance on capital markets and the ratings assigned by institutions in the economic North meant that a government pursuing another course faced “fiscal crises, downgraded credit, currency or bond ratings, and lost legitimacy at the least, bankruptcy and dissolution at the extreme.”73

Deepening Integration; Implications for debt and trade By the end of 1991, seventy-five countries had received structural adjustment loans worth more than USD 41 billion,74 and the effects of SAPs had provoked social unrest and often violent government crackdowns. Succeeding James Baker, who had been a major architect of the IMF transformation and structural adjustment in the 1980s, Nicholas Brady, US Treasury Secretary at the time, proposed what would later be called the Brady Plan. Mexico, which had been the first major country to default, was also the first country to convert its debt into “Brady Bonds” under President Salinas de Gortari. In order to ease Mexico’s sovereign debt burden, Salinas privatized over 85 percent of state-owned industries—almost twelve hundred, leaving fewer than two hundred in the state’s hands. Other debt was converted to Brady Bonds, which could be traded on capital markets rather than sit on the balance sheet of a bank or other creditor. Brady Bonds signaled the beginning of financializing debt far more broadly and were part of a growing trend of turning to global financial markets—and private banks and investors—to address structural problems in national economies.75 Thus debt, which had previously been understood as a political issue, increasingly became the domain of technocrats at the IMF, the US Treasury, and private banks. The causes and legitimacy of sovereign indebtedness— such as in Argentina—were displaced from political contestation, and the mechanics of payment were worked out by specialized lawyers, economists, and investment bankers largely in the global North.76 Adjustment targets and numerical indicators were developed so that IFIs—and in turn private lenders and investors and credit-rating agencies—could assess a country’s progress. These included substantive issues such as inflation, budget deficits, balance of payments, and the like, as well as laws and regulations, such as those governing competition and bankruptcy.77 Debt-rating agencies like Moody’s and Standard & Poor’s used algorithms to arrive at grades of creditworthiness, which affected interest rates on loans and trading of debt on capital markets. The shift in evaluation to seemingly apolitical (and unchallengeable) indicators played an important role in sustaining global governance and in the discourse



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promoted by IFIs and their major member states about what progress in the world entailed. Multilateral trade rules were also being redefined and significantly disrupting national political economies. On the day the EZLN revolted, January 1, 1994, NAFTA created the largest free trade bloc in the world between Canada, Mexico, and the United States. A year later, on January 1, 1995, the General Agreement on Tariffs and Trade (GATT) was superseded by the WTO, under which trade preferences and other benefits that came with membership were conditioned on ratifying the TRIPS, which required additional changes in tax regimes, corporate governance, and welfare state arrangements. Corporations were given many rights, including in intellectual property, that shielded them from domestic laws and regulations. Templates for the reforms that then had to be implemented were often drafted by international lawyers rather than openly debated in political forums, despite their very real impacts on constitutional commitments.78 In turn, the enforcement of trade and investment disputes was shifted to the WTO and specialized dispute resolution tribunals in regional and bilateral trade agreements, and systematically removed from the judicial systems in countries. Unlike in human rights law, where it is necessary to demonstrate either exhaustion of domestic remedies or the futility of exhaustion, there was no such requirement for foreign investors suing governments. These dispute resolution mechanisms, such as the International Centre for the Settlement of Investment Disputes (ICSID), were ostensibly intended to shield technocratic decision-makers from political influences, but they also symbolically transformed the grounds for determinations. For example, Chapter 11 of NAFTA guaranteed investment protections that were stronger for foreign investment than for domestic investment and subjected disputes to arbitration. Thus the government of Mexico, and its subnational governments, were immediately limited in their ability to protect public health and the environment from the actions of transnational corporations. For example, shortly after NAFTA went into effect, a Mexican municipality refused to grant a permit to a US company for construction of a toxic waste dump. The company sued and was awarded USD 15.6 million in damages.79 Over decades international arbitration clauses came to imply sweeping incursions into democratic capacities to protect social determinants of health. For example, in 2019 the US mining company Odyssey Marine Exploration sued Mexico in the ICSID for USD 3.54 billion. Odyssey alleged that Mexico violated the terms of NAFTA when it denied a seabed mining permit to extract

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phosphate off the coast of Baja California Sur in order to protect sea life and the livelihoods of local fishermen. An amicus curiae brief filed by an environmental group in support of Mexico’s position was considered irrelevant by the ICSID panel, which was largely composed of corporate lawyers. 80 If arbitration clauses have caused increasing resistance from civil society advocates and several governments since the 1990s, the “apolitical” mask covering trade disputes was definitively ripped away from WTO decision-making during the COVID-19 pandemic, when a handful of northern countries repeatedly blocked a TRIPS waiver petition. India and South Africa had brought the petition to temporarily waive intellectual property restrictions on COVID-19 diagnostics, therapeutics, and vaccines in 2020.81 Although over a hundred governments endorsed a temporary waiver as essential to meet their needs, a few wealthy countries argued that intellectual property was not the problem. Advocates knew that the TRIPS waiver alone was insufficient; national governments would need to change internal regulations, issue compulsory licenses, and obtain access to trade secrets, as well as address the lack of manufacturing capacity for vaccines in the global South. Nonetheless, freedom from the threat of litigation—for example over the hundreds of patents entailed in any one vaccine—was essential. It was difficult to see this institutional governance as anything but colonialist control of decision-making in development combined with capitulation to pharmaceutical monopolies—and violations of international obligations concerning not imposing barriers to the rights to life, health, and the benefits of scientific progress.82 Protection of intellectual property, which had previously been handled through the UN World Intellectual Property Organization (WIPO) in the UN, was always different from the WTO’s other roles regarding liberalization of trade. TRIPS required adopting far more invasive rules for patents on medicines, among other things, which largely did not exist in the global South—instead of “freeing up” trade in goods by eliminating tariffs.83 Intellectual property became a major source of wealth transfer from the global South to corporations in the North. Monopoly rights, not manufacturing costs, generally account for the lion’s share of budgetary implications of a right to medications. As Amy Kapczynski writes, “the prevailing political economy . . . structurally undermines equity, increasing prices without generating significant countervailing innovation to meet the needs of the global poor.”84 In the COVID-19, pandemic, for example, pharmaceutical companies received more than USD 10 billion in taxpayer dollars from multiple countries to develop and produce vaccines, but parameters were not placed on



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equitable pricing or distribution.85 In effect, the public was paying twice and governments were incentivizing private profiteering.

In 2016 in Mexico City, I participated as a judge in a Symbolic Tribunal on Maternal Mortality and Obstetric Violence, self-consciously modeled in aim and style after the Global Tribunal in Vienna and others that had followed.86 We wore robes and sat behind a panel in the enormous Siqueiros Polyforum and heard testimony from twenty-seven women and widowers around the country, each more harrowing than the last. Our job was to place their specific suffering in the framework of international human rights law. “Obstetric violence”—including both disrespect and abuse and unnecessary medicalization of natural childbirth—was articulated as a matter of human rights, just as violence against women had been in Vienna. As in Vienna, this tribunal was symbolic; we were not prescribing redress. Nonetheless, precisely because we had appropriated the symbolic authority that legitimates all courts, it had a deeply cathartic effect on people whose pain and loved ones’ deaths had been dismissed with indifference. In sharing their stories in a public arena and having their profound personal suffering acknowledged as injustice by those invested with such symbolic authority, they were no longer invisible. Shortly after the tribunal, Mexico adopted legislation on obstetric violence; through symbolic activism and the use of international legal concepts, feminists had created sufficient pressure to change the way in which providers and women related to each other. Much had changed since the 1990s, enabling this tipping point on obstetric violence. Through the work of advocates as well as scholars, we had built international law based on the scaffolding established in treaties and the international conferences of the 1990s and constructed iteratively through local as well as transnational advocacy. We also had seen many aspects of health rights become judicially enforceable across the globe, including Mexico. Since the early 1990s and especially after further reforms were introduced in 2011, the Mexican Supreme Court has adopted a bolder approach to protecting rights and assessing not just formal but substantive and structural inequalities, including aspects of the health system. The health system itself had gone through various structural reforms with the aim of expanding coverage to the entire population, some of which explicitly used notions of rights as organizing frames. These advances had changed the lives of diverse populations across the country. Yet we had also seen deepening economic integration and neoliberal governance. In Mexico, both the winners and losers of neoliberal globalization were

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readily apparent. In 1994, Mexico was able to join the club of donors, otherwise known as the Organization for Economic Cooperation and Development (OECD), in 1994. Per capita income grew from USD 3,112 in 1990 to USD 9,950 in 2019, just before the pandemic.87 Thirteen Mexican billionaires made it onto the Forbes list of richest people in the world; they included Carlos Slim Helú, who added $10.7 billion to his worth between 2020 and 2021 amid the pandemic, and Germán Larrea Mota Velasco, who gained $11 billion during this time.88 The social exclusion and deprivation of rights that the Zapatistas had long ago denounced had not changed much since I met don Timoteo and the EZLN launched its revolt. Rural residents like don Timoteo and his wife were dying for lack of access to basic care, including obstetric care, in the formal health system when I lived in Mexico. By 2016, indigenous parteras (traditional birth attendants, or TBAs) from Chiapas who had come to Mexico City for the Symbolic Tribunal spoke in a private meeting, for fear of state retribution, of being criminally prosecuted for attending home births. At the same time, the coerced institutionalization of delivery by the state had not been accompanied by commensurate increases in budgets, staffing, and facility space. This environment was a breeding ground for obstetric violence and abuse within the health system—the reason for the tribunal. Likewise, since the changes in the Constitution undertaken by Salinas before NAFTA that enabled privatization, huge tracts of land and rights to both surface water and aquifers had been bought up by beverage conglomerates that sold cheap soda and blocked community access. When I met don Timoteo, the lack of access to clean water was causing parasitic infections and diarrheal disease in rural communities from Guerrero to Chiapas. By the time the pandemic broke out, diabetes had become a larger health threat than infections for many impoverished people in rural Mexico.89 NAFTA had made drugs more profitable and reduced the prices for local farmers of crops such as corn and coffee beans, driving many farmers who, like don Timoteo had previously resisted, to turn to poppy cultivation. The 2017 United States-Canada-Mexico Agreement (USCMA) on free trade, which revised and updated some terms in NAFTA, did nothing to alter this reality.90 Nor did it change the flow of arms trafficked in the other direction. By 2014, when forty-three students at the Escuela normal in don Timoteo’s home state of Guerrero were disappeared—evidently because they had unknowingly commandeered a bus loaded with heroin—rural communities were becoming battle zones because of grisly, inextricably intertwined drug and political



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violence.91 Mass graves were found in Guerrero, eventually forcing a long overdue reckoning. As of the end of 2021, according to UN Committee on Enforced Disappearances estimates, as many as 95,000 people had been forcibly disappeared in Mexico, which was formally a democracy.92 These truths can and do coexist: on the one hand, real changes resulted from the 1990s expansion of rights struggles to include more people, as well as the substantive freedoms necessary for diverse people to live with dignity, including health. Legal and social mobilizations to advance different populations’ rights to health continue today, and where national laws and Symbolic Tribunal mechanisms prove inadequate, supra-national litigation and creative advocacy such as the in Mexico City continue to draw on the normative authority of international standards. On the other hand, rights are not bureaucratic tools; they ineluctably exist within social space which is shaped by power relations. Focusing on health rights without challenging neoliberalism’s framing of the background rules of the game can reinforce market logics as opposed to affirm the need for state intervention to level the playing field in health. As Amy Kapczynski argues, “The struggle for the meaning of human rights—as movement and as law—matters for those who wish to challenge the prevailing order, not only because it could help advance real change, but also because it could forestall it.”93 What should have been clear before the pandemic is now incontrovertible: struggles to advance human rights in health and beyond must engage with the larger legal frameworks in which the conditions for their (non)realization are systematically produced.

Chap te r Fo u r

Dystopian Modernization The [colonizing] doctors say, “Those patients are rough and unmannerly.” The patients say “I don’t trust them.” . . . Fairly soon, the doctor and even the nurses worked out a rule of action: with these people you couldn’t practice medicine, you had to be a veterinarian. —Frantz Fanon1 Although enshrining the so-called negative rights (including the right not to be an object of coercion or sexual violence) constitutes an appreciable advance, those of us who see ourselves as part of movements of emancipation do not merely aspire to rights as curbs on power. This tradition has . . . not served to dismantle the structural hierarchies that permit the continuation of abusive policies and practices, nor has it been useful in addressing the challenge of enlarging and extending human capabilities and freedoms for all people. —Giulia Tamayo2

mass graves in Brazilian favelas, and makeshift morgues in New York flowed across our large and small screens during the first years of the pandemic, along with a daily saturation of numbing statistics, even those not visited directly by the Grim Reaper were forced to contemplate whose deaths are grieved—and why. Grief and mourning are not the same. We mourn many public figures whose obituaries elide episodes of their fecklessness; we take note if not mourn the passing of the masters of the universe who tried to defy the myth of Icarus; we mourn the soldiers, often in the prime of their lives, who made the ultimate sacrifice for their country. Grief, as opposed to mourning, is a private affair, reserved to those for whom the absence A S I M A G ES OF B O D IES L ININ G THE G A N G ES ,

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of a person leaves their inner worlds shattered. Sometimes, however, in the very saddest of cases, neither grief nor mourning are to be found in the shadow of loss cast by a death. Blame, shame, and recriminations, or merely indifference, fill the space that a human being used to inhabit. The death of Pabla Arizanca Barrientos, who was thirty-five years old when she died in childbirth in the early 2000s, was one of those cases.3 Leading an investigation into maternal mortality for Physicians for Human Rights in 2007, I met Pabla’s family and others in her community when I returned to Peru after living there for years in the late 1990s and early 2000s. By all accounts, Pabla’s life in the small Quechua community of Ramis in the Peruvian Altiplano had been clouded by melancholy. Her own mother had died giving birth to twins at a very young age, Pabla had been forced to assume responsibilities around the house to help her father, including taking care of her three siblings. She dropped out of school after the second year of primary school, and never learned to read or write, or to speak Spanish. Her father died when Pabla was just a teenager, and she was then forced to enter into a loveless union. She and her partner lived in the small adobe home in which Pabla had grown up and had two children, a boy and a girl. It was not very long before her partner left her for Lima and took their son with him, leaving Pabla with her toddler daughter, Clara. A few years later, Agustín Quispe moved into the house Pabla had lived in with her former partner, the house she had grown up in, the house where her mother had died giving birth. Agustín and Pabla had two girls of their own. In 2005, when Pabla found she was pregnant for the fifth time she was reportedly despondent; she did not want another child, but Agustín did not allow her to use contraception. Prenatal checkups diagnosed preeclampsia, a serious condition that can lead to seizures and death if untreated and calls for delivery by cesarean section. Pabla tried not once but twice to get from her remote rural community to the hospital in Juliaca, the capital of Puno Department (equivalent to a state or province). After one failed attempt, she made a second at full term. At thirty-seven weeks, she packed a small bag and went to the hospital, expecting to stay and deliver her baby by C-section and then have a bilateral tubal ligation (BTL), as she was desperate not to have more children. Juliaca is a large city, buzzing with traffic and mototaxis. The Carlos Monge Medrano Hospital occupies the equivalent of at least a full city block and must have been intimidating to an illiterate indigenous woman, unfamiliar with the city and unable to communicate in Spanish. At the hospital, an ultrasound was

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performed; however, despite her elevated blood pressure and other signs of preeclampsia noted in her chart, the doctor who examined her told her to go home. The doctor did not speak Quechua, Pabla did not speak Spanish, and the midwife from Ramis who had accompanied her was not allowed to be present at the consultation. Pabla returned home even more disconsolate. Just days after she returned from the hospital in Juliaca, Pabla’s labor pains began. It was already evening, and the community health post was closed; Agustín went to fetch Felix Yucra Yucra, a partero (traditional birth attendant) who had attended the birth of their previous child. As is traditional in Andean birthing rituals, Pabla was lying on a black sheepskin as a fire burned. The tiny room was filled with heavy smoke from burning cow hide and herbs meant to ease labor pains and speed delivery.4 This was the same putuco (cone-shaped adobe structure) where Pabla’s mother had given birth to her and where she had died in childbirth when Pabla was still a young child. After the baby was born, Agustín’s mother tried to persuade Pabla to drink a tea made from herbs traditionally given after childbirth (mate de chancaca negra). However, almost immediately it became apparent that something was terribly wrong. Pabla began to convulse violently; her arms became rigid, and she could not be held down as she writhed and kicked. Her eyes glazed over. By all indications, she had gone into eclamptic seizures. Between fifteen and thirty minutes later, Pabla was dead. The placenta, traditionally buried to nourish the earth, was never expelled, which was taken as a bad omen. At the time in Peru, all maternal deaths that did not occur in health-care facilities were subject to autopsy according to Ministry of Health regulations. Community members protested the plan to have an autopsy conducted by strangers; they said it would bring terrible luck down upon them and cause their crops to fail. There is a strong belief that cutting a woman’s body open will not allow her to rest in peace, and as a result she will haunt the family and community. The thought of strangers cutting Pabla open was a particularly offensive transgression of their beliefs. Nonetheless, the autopsy went forward. The night after the autopsy was conducted, it began to hail; it was an unusually hard and prolonged hail that devastated the potatoes and other crops of this community of subsistence farmers. The community immediately blamed the health system; the nurse and midwife at the community health post were afraid to go to work for days. The meaning we take from the community’s reaction to both the failure of the placenta to be delivered as well as the autopsy is critical to questions of advancing health rights. Understanding the failure to expel the placenta as a bad omen, or connecting an autopsy to the hail that ruined their crops might seem



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like irrational superstitions to many readers. But, as mentioned in Chapter 2, we would do well to pause before assuming that the biological individualism of Western medicine—based on how cells interact and organs function—presents the only possible narrative of the human condition. Indeed, the Cartesian dualism between man and nature, between mind and body—or mental and physical health—through which we have come understand our well-being and our relationship with the natural world is an artifact of colonialism. In indigenous cultures, there is a reciprocal, indeed symbiotic, relationship between human beings and the natural world, evidenced through rituals and daily practices. The Inca-descendants who live in the Peruvian Sierra and elsewhere believe the mountains are homes to spirit gods called apus that protect their mental, physical, and social well-being, understood not as separate from one another but as an integral whole. Pachamama is the earth mother goddess who sustains all life and protects fertility and healthy outcomes for children as well as animals and crops.5 Health is not a condition that can be isolated in autonomous bodies or described by alleles alone; rather, our health is constructed through relationships with each other and the natural world. In this much thicker description of life and dignity, achieving the “highest attainable standard of health” for people in the community is reciprocally related to respecting the rights of nature through specific social practices. Returning the placenta to the earth is one of those practices. A white criollo physician who interviewed about Pabla’s case told me bluntly, “we use the threat of the autopsy to pressure them to give birth in establishments.”6 Never mind that in this case, Pabla had made extraordinary efforts travelling hours to get to the hospital in Juliaca not just for the sake of her delivery but so as not to have any other children. Moreover, when we pause to see competing cosmologies embedded in the stories we tell about health and what is required to protect health, it becomes apparent why the imposition of coercive rules, such as the autopsy, cannot be understood outside of its historical context. As Frantz Fanon pointed out, in every interaction between the colonial doctor and the colonized, there are epistemic clashes, continual reenactments of the subordination of what they characterized as “savage beliefs”, and in turn of the affective and material worlds of the people living in Quechua communities such as Ramis. To understand the role of the health system in reinforcing the intersectional exclusion Pabla faced from the moment she was born as an impoverished indigenous woman, we also need to look to the more immediate history of what was happening in the Peruvian health system in the decade before her death. Between 1996 and 2000, the Peruvian Family Planning Program had

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systematically sterilized over a quarter of a million overwhelmingly indigenous women.7 The mass sterilizations were the most egregious episode of attempts to erase and dehumanize Peru’s indigenous underclass. After the sterilization scandal, many indigenous women and their partners were understandably even more deeply distrusting of the formal health system for delivery care—which made Pabla’s choice, and her efforts to exert agency over her body and destiny, further stand out. This chapter first situates Pabla’s story and the mass sterilizations in the larger socio-political context. Between 1980 and 2000, Peru went through a long period of brutal civil conflict with the Maoist Sendero Luminoso (Shining Path) and the smaller Marxist Movimiento Revolucionario Túpac Amaru, in which as many as 75 percent of the estimated 70,000 deaths were in Quechua-speaking communities, including in Puno.8 In the 1990s, President Alberto Fujimori implemented neoliberal policies with the same authoritarian zeal that he used against suspected terrorists, with devastating effects on subsistence farmers such as Agustín and Pabla. Initially Fujimori had championed the ideas set out in the International Conference on Population and Development (ICPD) and the Fourth World Conference on Women (Beijing) and had stood up to the conservative Catholic Church. However, by 1998 it was clear that in contrast to the fundamental message of ICPD to trust women, Fujimori did not want indigenous women to make basic choices over their bodies and lives. With the support of the US Agency for International Development (USAID) and other donors, the Fujimori administration instituted a systematic program to brutally control their fertility. In turn, a campaign by new and traditional coalitions of human rights groups brought the abuses to light, framed them in the language of ICPD and Beijing, and catalyzed political, social, and legal mobilizations to vindicate the rights of indigenous women, and push for systemic changes. Second, the chapter moves from the broad context to examine the role of the health system in perpetrating the abuses. The Peruvian health system has historically functioned to spread colonialist views of sexuality, health and hygiene, as well as racial, gendered, and ethnic hierarchies. In the 1990s, financing for the health system as well as the labor flexibilization undertaken by Fujimori abetted the abuses that occurred. In the subsequent administration, the conservative Catholic turn of Peru’s Ministry of Health coincided with a global backlash against sexual and reproductive health and rights (SRHR), and a new framework of development, the Millennium Development Goals (MDGs). Reducing maternal mortality became the goal under the MDGs, which the government



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approached with same punitive approach they had used in family planning as revealed by the autopsy debacle in Pabla’s case. Finally, we discuss the impacts of deploying human rights to advance women’s reproductive health, and health more broadly, in light of what happened in Peru. Extrapolating from what happened in Peru, the chapter argues that in addition to formal law reform, it is important to analyze discursive changes and shifts in actors, power relations, and practices in the health sector as well as in politics more broadly. The chapter concludes that the most significant and lasting impacts of deploying rights in health are often not the most visible but rather lie in the appropriation of agency over their bodies and lives by subaltern groups.

Peru: “Stark Utopia” Breeds Dystopia The “Golden Straightjacket” As the economist Karl Polanyi suggested, the illusion of self-regulating markets implies a “stark utopia” that cannot exist for any length of time without becoming a dystopia that destroys human aspects of society.9 In the 1990s governments across the global South adopted “best practices” for economic restructuring based on the “expertise-based authority” of international financial institutions (IFIs). As discussed in Chapter 3, this authority did not just happen; it had been carefully constructed based not just on mobilizing resources but on a new framing of the world and the role of the IMF and other parts of the global economic ecosystem in it. The World Bank started calling itself a “knowledge bank”; the Organisation for Economic Cooperation and Development (OECD) became a “policy bank.” In the late 1990s, Thomas Friedman referred to these “best practices” as a “golden straightjacket”: “If your country hasn’t been fitted for a golden straightjacket, it soon will be. . . . As your country puts [it] on [two things happen]: your economy grows and your politics shrinks.”10 But in Peru and elsewhere authoritarian executive branches embraced the shrinkage of politics just as they welcomed economic growth. When Alberto Fujimori assumed the presidency in 1990, Peru’s democratic institutions were not well-consolidated, given a long period of military rule followed by internal armed conflict in the midst of crushing debt and high inflation. Despite promises made during his campaign, Fujimori quickly instituted so-called “Fujishock”— fiscal and monetary reforms, draconian reductions in public spending, sweeping privatization of state enterprises, and flexibilization of labor, which introduced short-term service contracts in health as well as other sectors.11 The consumer price index rose 7,650 percent, and real salaries fell precipitously. Some of the

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worst inflation was in the health sector, where the cost of care rose an average of 8,400 percent between 1990 and 1991. The population living in poverty went from 7 to 12 million almost overnight. By 1994, almost 60 percent of the Peruvian population was living in poverty, with far higher poverty among indigenous populations who disproportionately lived in rural areas.12 In the late 1990s, roughly half of Peru’s population was indigenous,13 and Fujimori’s neoliberal policies particularly devastated rural indigenous communities. Families were unable to purchase basic necessities, including health products. Men left their farms and families to seek work in cities; in Puno (which borders Bolivia), some also turned to bringing goods across the border to support their families and, despite “trade liberalization” were criminalized for trafficking in contraband. In July 1995, the Congress had rubber-stamped Fujimori’s Law 26505, an agrarian reform designed to “promote the development of economic activities in the lands of the national territory and in the campesino and indigenous communities.”14 Privatization was a stark change from the agrarian reform implemented in 1969 by the left-wing military government of General Juan Velasco, which established cooperative and communal property ownership in 75 percent of the country as a way to quell internal strife. However, after fifteen years of civil conflict, by 1995 most leaders of the Shining Path had been captured and, without the threat of worsening insurgency in rural areas, overtures toward social inclusion gave way to “state modernization.” A coalition of indigenous women, the Centro de Culturas Indígenas del Perú (CHIRAPAQ; Centre for Indigenous Cultures of Peru), condemned the effects that land privatization was having on their ability to feed families and live in healthy environments.15 The Quechua inhabitants of the highlands, or la Sierra, like many other indigenous communities, viewed land and the natural resources under it as a communal good , the use of which followed spiritual tenets and fulfilled a social function. Donning the golden straitjacket did produce rapid economic growth, which boosted Fujimori’s popularity among the elite classes largely in Lima and on the coast, who benefited from privatization, drastic reductions in import substitutions, and trade liberalization, along with financial deregulation and fewer worker protections. Just as important, Fujimori became a poster child for the IFIs. In his first term alone, Peru received more than USD 1 billion in structural adjustment loans from the World Bank, as well as complementary loans from the Inter-American Development Bank (IDB). These included a USD 400 million Financial Sector Adjustment Loan, a USD 300 million Structural Adjustment Loan, and a USD 300 million Trade Policy Reform Loan.16 Modernization became



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synonymous with Fujimori’s policies, just as it had in Mexico under Salinas. Thus, any opposition was invariably characterized by the administration and the media platforms it controlled as anti-progress. As Thomas Friedman suggests, the strictures of neoliberalism also narrowed the available political and economic policy choices. But shrinking politics suited Fujimori’s authoritarian mode of rule. When early on, in 1992, it appeared that he would face political resistance to his antiterrorism policies, Fujimori carried out an “auto-coup,” dissolving the Congress, the Court of Constitutional Guarantees, and the National Council of Judiciary. Thereafter, the dramatic structural adjustment achieved in Peru was almost entirely through supreme and ministerial decrees—more than nine hundred of them. In other words, Fujimori was able to implement the IFI’s restructuring program with almost zero democratic discussion.

Family Planning Program in Sociocultural Context Anti-natalist population policy was an integral part of Fujimori’s restructuring from the beginning. Indigenous subsistence farmers such as those in Pabla’s community, Ramis, have historically been cast as anti-modern and did not fit into Fujimori’s vision of a modernized Peru. Their numbers had to be contained to align with his aspirations for employment and economic growth. Despite his plans, Fujimori made it appear that he was supportive of the transformative agendas of ICPD and Beijing. The Fujimori government joined a technical committee to monitor the implementation of the ICPD Programme of Action in collaboration with international agencies and women’s rights NGOs. Fujimori personally attended the Beijing Conference, where he publicly declared the commitment of his administration to the Beijing Platform for Action.17 At the beginning of his second term in 1995, right after Beijing, he declared that “women were going to be in charge of their own destiny,”18 which, together with his other actions, led some women’s rights NGOs to believe that Fujimori could be an ally in their struggle against the Catholic Church. Indeed, Fujimori had stood up to the Peruvian Catholic Church beyond promoting family planning. For example, in 1991 he initiated changes in the penal code to criminalize marital rape and introduced the term “offenses against sexual liberty.” In 1997, his administration repealed a law exempting rapists from criminal penalties if they married their victims.19 In the aftermath of ICPD, Peru received support from the US, the UK, Japan, and even the UN Population Fund to “bring Cairo home.” Indeed, between

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1995 and 2000, the Movimiento de la Mujer Manuela Ramos (Manuela Ramos, for short), one of the most important feminist NGOs in the country, received a major grant from the US Agency for International Development (USAID) to implement the project, ReproSalud, in coordination with the Ministry of Health. Through ReproSalud, local community members were trained and awareness raised about reproductive health and rights, including but not limited to family planning.20 For feminists, the UN conferences had laid out a vision of a transnational modernity grounded in secular norms of gender equality and dignity. Soon, however, the goal of “bringing Cairo home” would be perverted and coopted by the Fujimori regime to advance its own dystopian idea of a modern Peruvian state based on transnational neoliberal norms. When Fujimori’s administration decided to “prioritize” permanent and long-acting contraceptive methods in 1996, the gruesome implications were not immediately clear. Soon thereafter, though, human rights investigators heard reports of abuses related to BTLs, in Huancabamba Department in northwestern Peru. They discovered that health workers across the country—who were now operating on flexible contracts rather than stable employment—had to meet certain quotas each month for surgical sterilization, overwhelmingly BTLs.21 Punitive quotas demanded of workers, coupled with entrenched racism against indigenous people, predictably produced a cascade of coercion, manipulation, and institutionalized abuse. Between 1996 and 2000, more than 272,000 people were surgically sterilized in Peru through the family planning program.22 The overwhelming majority were BTLs performed on rural indigenous women from the poorest quintiles of the population, often under conditions that did not meet basic standards of hygiene and care, let alone informed consent.

Human Rights Advocacy Regarding the Sterilizations: Framing, Alliances, and Strategies Fujimori portrayed himself as a savior of the country, in terms of both the economy and national security. Before populist despots could even dream of social media, Fujimori and his infamous Rasputin-like advisor, Vladimiro Montesinos, expertly used the popular chicha press to spread fake stories, create constant distractions, and erode faith in the country’s democratic institutions.23 With shrinking oversight from other branches of government, his administration trampled human rights with virtual impunity for almost a decade. Human rights NGOs were among the few groups that persistently stood up to Fujimori, and supranational procedures and forums were a key part of their



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strategy in resisting the autocratic state. Moreover, use of the Inter-American System and shadow reports to treaty-monitoring bodies was not limited to civil and political (CP) rights violations carried out in the state’s fight against Shining Path and another, smaller terrorist organization. NGOs fought the regime’s systematic dismantling of labor rights and protections (estabilidad laboral), which advocates saw clearly as the unshackling of capital to advance the neoliberal agenda.24 During the late 1990s and early 2000s when I lived there, the Asociación Pro Derechos Humanos (APRODEH; Association for Human Rights) and the Centro de Derechos y Desarrollo (CEDAL; Center for Rights and Development) were among the few voices openly decrying the structural exploitation of the disadvantaged in the wake of the regime’s neoliberal economic and social reforms. APRODEH and CEDAL (and other NGOs) were on the frontlines of resistance to Fujimori’s pro-elite and pro-market reforms and frequently worked alongside labor movements and grassroots indigenous groups. However, the mainstream human rights movement in Peru, just as in many parts of Latin America, had historically maintained strong ties to the progressive side of the Catholic Church, which has created a complicated relationship with women’s struggles for SRHR.25 Indeed, in Mexico, when the then-governor of Chiapas liberalized abortion under the state penal code, Bishop Samuel Ruiz, a hero to the indigenous Zapatista Army for National Liberation (EZLN), threatened those who supported the revised code with excommunication and was able to get it changed.26 Similarly, in Peru, when the Fujimori regime attacked the Church’s opposition to its family planning program, the mainstream human rights movement initially reacted by supporting the Church’s position and its right to express opinions about public policies in the context of profound autocracy. Nonetheless, when the revelations of forced sterilizations came out, APRODEH, where together with Dr. Mario Ríos I co-founded a program on human rights in health, co-signed a petition to the Inter-American Commission on Human Rights (IACHR). The case that prompted the petition involved María Mamérita Mestanza, a thirty-three-year-old indigenous mother of seven from Cajamarca Department who underwent BTL in 1998, after she and her husband had suffered continual harassment and threats of criminal prosecution from personnel at the local health center on whom they depended for all of their family’s health needs. Mamérita was not examined prior to surgery and, despite postsurgical nausea and headaches, she was sent home the next day. The health center dismissed daily pleas from her husband about Mamérita’s worsening condition, and nine days later she

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died at home. After her death, the Ministry of Health paid a nominal fee to the Mestanza family and regional health authorities convened a pro forma “investigative commission” that absolved the center’s personnel of all responsibility.27 Giulia Tamayo, a close friend who brought a preternatural intensity to her human rights advocacy, worked doggedly with other colleagues to uncover the full circumstances surrounding María Mamérita’s death. They documented a pattern of cases around the country and tied those abuses to a national policy that set targets for BTL for health facilities throughout Peru. In 1999, the Peruvian chapter of the Comité de América Latina y el Caribe para la Defensa de los Derechos de las Mujeres (CLADEM; Latin American and Caribbean Committee for the Defense of Women’s Rights), together with another women’s rights group, the Estudio para la Defensa de los Derechos de la Mujer (DEMUS; Firm for the Defense of Women’s Rights), and APRODEH took Mestanza’s case to the IACHR. The petition argued that Mestanza’s case was emblematic of the systematic violations of the rights to life, bodily integrity, and equal protection of the law, as well as violations of state obligations to prevent, sanction, and eradicate violence against women under the regional Belém do Pará Convention, which had entered into force only a few years earlier.28 Both CRR and CEJIL later joined the case as co-petitioners. In 2002, a new administration agreed to pursue a friendly settlement, reached in 2003, whereby the Peruvian government acknowledged legal responsibility and agreed to compensate Mestanza’s surviving family.29 Tens of thousands of other women and their families were not compensated, however, and did not receive any physical or psychological counseling. Fujimori’s administration and USAID had portrayed the involuntary BTLs as unfortunate lapses in quality of care. That was tactical; boundaries and framings are invariably essential to symbolic structures in both medicine and law. Lapses in quality of care call for changes in protocols and oversight within and controlled by the Ministry of Health. By contrast, human rights advocacy reframed the sterilizations as a question of social injustice, for which remedies were required. Taken by itself the petition to the IACHR might seem to abstract the violations of individual rights from the structural context of patriarchy and Colonialism. However, let’s consider the legal opportunity structures available to advocates at the time. The Mamérita Mestanza case involved a novel use of the Belém do Pará Convention. Another Peruvian case involving sexual assault by a doctor in the same hospital in Juliaca where Pabla had sought care30 had opened the door to addressing violence against women in the health system, but the Mamérita Mestanza case examined the systematic perpetration of violence



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fostered in the family planning program. The petition also presented groundbreaking interpretations of the rights enshrined in the American Convention on Human Rights, such as freedom from inhuman and degrading treatment, extending conceptualizations of the loci, processes, and effects of such abuses. Moreover, the turn to legal claims, far from displacing social demands, amplified them. Although the women’s rights community had been fractured by the involvement of Manuela Ramos in the BTL scandal, much of the advocacy around forced sterilizations in the human and women’s rights communities in Peru construed individual bodily integrity violations as rooted in the same societal fragmentation along rural-urban, class, ethnic, and gender lines that underlay the country’s internal armed conflict. This advocacy characterized BTLs as structural violence against impoverished indigenous women in the Peruvian health system—and society as a whole.31 For many advocates, there could be no clearer example of structural arrangements embedded in the political and economic organization of the social world that were systematically causing violent harm to certain groups of people. Giulia Tamayo was particularly outspoken about the need to dismantle the interlocking systems of power based not just on gender but on class, race, and ethnicity that denied indigenous women dignity and full citizenship in Peruvian society. New coalitions within the human rights and women’s rights movements formed as the dimensions of the structural violence were brought to the fore. Advocates such as María Esther Mogollón, coordinator of the Movimiento Amplio de Mujeres-Fundacional (Foundational Broad Women’s Movement), sought to create a moment of truth and self-appraisal not just in Peruvian society but in traditional feminist advocacy circles as well.32 Indigenous women had created coalitions previously and had participated in collective reflections on the ICPD and Beijing platforms in terms of their lived realities,33 yet the feminist movement in Peru was heavily dominated by groups in Lima. For at least a while, indigenous women were able to amplify their voices across this deeply hierarchical society, organize broader social movements, and even enter politics after the sterilizations came to light. Hilaria Supa, an indigenous community leader who led protests and lobbied against the sterilizations from early on, became the coordinator of the Federación de Mujeres de Anta (Women’s Federation of Anta), a region of the Sierra department of Cusco. She was elected to the national Congress in 2006 and became the first member of parliament in Peru’s history to take the oath of office in Quechua. In 2011, she was elected to the Andean parliament.34

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Reproductive health and rights appeared on the democratization agenda for everyone when Fujimori sought to impose himself in a third presidential term. Beginning in May of 2000, the Colectivo Sociedad Civil (Civil Society Collective) began symbolically “washing” the Peruvian flag every Friday in the main government square Lima, and later elsewhere, in a creative act of resistance against the regime’s corruption and abuses, including the BTLs, which garnered immense public attention. In July of 2000, the end of Fujimori’s regime was foretold when social movements, including indigenous and feminist movements, together with opposition leaders, converged on Lima in the Marcha de los Cuatro Suyos (March from the Four Corners, in reference to the four corners of the Tawantinsuyo, as the Incans called their territories). After Fujimori fled to Japan later that year, some grassroots women’s movements together with human rights groups continued to press for accountability, seeking unsuccessfully to have the involuntary sterilizations recognized as crimes against humanity by the Truth and Reconciliation Commission in 2003, and continuing to argue for criminal prosecution of the program’s architects.35 Only in November 2018 did the Peruvian government begin prosecuting high-level officials in the program. Women’s rights groups continued to use supranational human rights bodies to set standards and seek relief, arguing that remedies for their claims did not exist under domestic law.36 Two cases--brought by CLADEM, DEMUS, and subsequently PROMSEX, another Peruvian NGO, with CRR, in the early 2000s— related to denials of therapeutic abortion to adolescent girls who faced threats to their physical and mental health and had been victims of sexual violence. However, the solidarity of the mainstream human rights community in combating “violence against women” when it related to sterilizations, did not extend to construing deprivations of lifesaving care as manifestations of structural violence.

The Peruvian Health System: A Site for Reinforcing Social Exclusion A History of Colonialism and Structural Discrimination It is impossible to understand how almost three hundred thousand women were involuntarily sterilized in a matter of a few years without understanding how the Peruvian health system fostered systematic dehumanization. As Lynn Freedman writes, “The health system is not simply a mechanical structure to deliver technical interventions the way a post office delivers a letter. Rather . . . [it] functions at the interface between people and the structures of power that shape their broader society.”37 In every country of the world, due to their reproductive health



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needs and disproportionate care-seeking responsibilities for children, women often experience their social exclusion through the indifference and abuse they face in contacts with the health system; in Peru, indigenous women had long experienced intersectional discrimination in the health system. In Mexico in the 1990s, a central demand of the Zapatistas for a more democratic society had related to indigenous communities’ rights to autonomous health systems; later constitutional reform projects in the region incorporated autonomous control for indigenous communities over their health systems. International norms played an important role in reframing plural health systems in terms of rights. Pursuant to the Indigenous and Tribal People’s Convention of the International Labor Organization (ILO Convention 169), indigenous health services were to be designed and delivered under the community’s responsibility and control, administered by the state in cooperation with the indigenous groups, and take into account their traditional practices as well as individuals’ rights.38 In essence, ILO Convention 169 recognizes that a health system is not an apparatus for the delivery of goods and services; it is a social institution that embeds practices and values. For hundreds of years, the formal health system in Peru had functioned as a tool of state oppression, criminalizing or taming the practices of indigenous communities to bring them under the power and control of the state. Moreover, while bodies are always imbued with the meaning that cultures give them, women’s bodies in particular tend to be saturated with sexual significance. Throughout the twentieth century in Peru, women’s bodies were policed with the aim of creating female subjects who were limpias y modernas (clean and modern).39 In the case of indigenous women, social control through the health system took on added dimensions. To be clear, all women need access to reproductive health care that is of high quality and both medically and culturally acceptable. But the imposition of colonial obstetric techniques and rejection of indigenous birthing rituals was particularly fraught. Indigenous women in the cold Sierra rarely bathe and traditionally give birth the way that Pabla did, in darkened warm rooms with burning cowhide to speed contractions. The formal health system reflexively insisted on shaving their pubis, stripping them naked in cold rooms, and forcing their bodies into unnatural supine positions with their feet in stirrups in a grotesque enactment of subordination to attending providers.40 In addition to often being overtly discriminated against and mistreated in hospitals and health centers, women were denied the traditional herbal teas (mates) and forced to give birth alone without their families. The drinking of herbal teas is not simply for easing labor pains as an injection or pill in the Western health system might be. The

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ingestion of these herbs are part of an integral worldview, gifts from the earth which, along with the other rituals performed in the company of family, infuse the experience of childbirth with meaning. The structural reforms made to the health system during the 1990s acted in synergy with historical patterns of colonialism and discrimination to shape what Lynn Morgan and Elizabeth Roberts have termed “reproductive governance”— “incitements to produce, monitor, and control reproductive behaviours and population practices.”41Designed in keeping with World Bank and IDB guidance, these reforms required shrinking government expenditure by abandoning universal programs in favor of “targeting” reduced packages of basic services to “the poor.”42 In light of the ravages of other structural changes in the economy and the fact that over half of the population was living in poverty, a 1993 document from the Ministry of Health, “Guidelines for Social Policy,” even stated: “It is considered that the state should guarantee access to the entire population to health services because that is a basis for equality between people which sustains the exercise of citizenship and modern democracy” [emphasis added].43 Nevertheless, these aspirations were discarded in favor of targeting, which was considered more efficient by the IFIs. Even on their own terms, experts from the Inter-American Development Bank calculated that Peru could not finance even 20 percent of the needs of women and children in extreme poverty with the budget Fujimori assigned to cover maternal-child health between 1995 and 2000.

Understanding the Perpetration of Mass Abuses In the family planning program, the Ministry of Health had established monthly numerical targets for surgical sterilizations that increased from year to year and were systematically monitored at the central level in Lima. Quotas for recruitment of women to be sterilized were applied to health facilities throughout the country, particularly in indigenous areas. Quotas for BTL recruitment and performance were even broken down by cadre of worker within facilities.44 These quotas were combined with incentives and sanctions for providers, which in turn led to intimidation and harassment as in Mamérita’s case, as well as misleading and false information about BTL’s effects and permanence. Some women were told that they would receive a free checkup at the clinic and were then threatened with fines, denial of future care, or even imprisonment if they refused the procedure. The actions of health workers were possible only because of the pervasive othering of indigenous women in public discourse and social norms, supported by



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intersectional discrimination in law and practice. Gender stereotypes about women’s essential roles in reproduction, were also wrapped up in racist assumptions about indigenous women in particular. When I lived in Peru in the late 1990s, health workers in many establishments told me directly that indigenous women did not experience pain the way white women did, that they were incapable of rational decision-making, and that their husbands controlled their child-bearing decisions. In fact, it was Western-trained doctors performing BTLs without adequate anesthesia who were the true savages, but in many of these conversations the openness with which these professionals expressed their racist views amazed me. It brought on the same sensation I had experienced with Martínez de Hoz in Argentina, who assumed that our elite educations conferred a shared view of the masas. Because I am white and Western, and I have formal training in public health, program directors and providers in Peru assumed I would share their views of indigenous women and their cultures as primitive and in need of civilizing. I did not. But these widely-held and ingrained social beliefs helped to foster the conditions under which, as Kimberly Theidon writes, health providers “wielded the scalpels that permanently altered so many bodies and lives.”45 Nonetheless, an explanatory narrative that focuses on the attitudes of frontline providers can too easily displace attention from the power dynamics within the Peruvian health system. There were many more health providers who did not harbor racist beliefs or certainly never would have taken them to such an extreme—some of them became whistleblowers when the scandal came to light. Yet for years, just as in situations where police or military officers come to abuse or even torture their fellow citizens, the system’s punitive organization and background norms, coupled with specific policies, fostered massive abuses. The dynamics of the way policies were understood and applied had been directly shaped by Fujimori’s broader imposition of structural adjustment, including labor deregulation. Because by 1996 many health workers had been placed on service contracts as opposed to fixed salaries in line with labor flexibilization, it was far easier to manipulate their behavior. Failing to meet a monthly quota for BTL capture meant having compensation reduced or potentially being dismissed and not rehired elsewhere. Numerical targets were not used just to identify eligibility for sterilization; they were also used to increase worker productivity and “efficiency” in the sector more broadly even after the scandal. Just as the physician who sent Pabla home to die after her ultrasound faced no consequences, those health professionals with “tenured” appointments (nombrados) had complete impunity. Health professionals on contract, however, lived

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in fear of being fired, whether for not “capturing” sufficient numbers of women to be sterilized or later for mere association with a maternal death. The nurse at the health clinic in Pabla’s case told me, Everyone blamed us. But did they say the patient went to the hospital and because of negligence was sent back? . . . No, that they never mentioned. . . . And to me they said, ‘Don’t say anything else. . . . It’s better for you to shut up.’ The only thing I said then was that the midwife should have job security and then I shut up and I felt so powerless. I didn’t know what to do.46

While a “tenured” doctor at the Juliaca hospital earned approximately 2800 nuevos soles (USD 875) per month at the time of Pabla’s death, a doctor working on contract earned approximately 1,000 nuevos soles (USD 312) per month. Other lower cadres of workers such as nurses and midwives—more often than not women—were paid far less. The midwife who had attended Pabla’s case said, “We aren’t given set schedules and the Social Health Insurance program pays us 350.00 nuevos soles per month [approximately USD 110] for which we work from morning to night. At other times we have to work overnight with no pay while our bosses meanwhile criticize us. . . . They tell us to refer high-risk pregnancies and when we do, they don’t treat them . . . and then we look bad with the patient and that’s what happened with Pabla.”47 This highly precarious and inequitable labor situation had fostered rampant abuses in the family planning program; it also systematically undermined possibilities for building an effective referral system for obstetric and other care.48 Punitive treatment of workers led to direct abuses. Flexible service contracts and poor pay also created high absenteeism among workers doing other jobs on the side. Absenteeism, in turn, posed significant costs to the system and left patients without access to care in life and death situations. But these very real costs were “externalized” to workers and patients and not included in abstracted indicators of health system spending or performance. Peru’s health spending was only 4.6 percent of its GDP when Pabla died, and had been under 5 percent (low by regional standards) throughout the 1990s. Furthermore, spending patterns were profoundly inequitable. In 2000, Peru ranked 184 out of 191 countries in terms of fair financial contributions in health.49 To make up for reduced government spending and lack of steady compensation, providers did not just turn to side jobs. Informal fees were routinely applied (for drugs or goods that by law should have been free) alongside formal user fees. Other aspects of Fujimori’s health reform did not work as planned either. For example, decentralization without adequate governance and accountability



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predictably produced inequities and local political capture more than “democratization.” Further, there is no evidence that the creation of parallel structures through the World Bank and the Inter-American Development Bank reforms prevented corruption. On the contrary, the evidence shows that bids put out to private contractors for various aspects of health reform fostered grotesque collusion and cronyism, and created sandcastle institutions that did little to strengthen the country’s health system in the long term. And, because these reforms were based on loans, failures were in the end borne by the Peruvian public.

Post-Sterilizations: National and International Developments Just as the events that played out in Peru were inextricably tied to developments at the global level, the revelations of the mass sterilizations coincided with a vicious countermobilization to undermine reproductive rights in the aftermath of ICPD and Beijing. Conservative opposition believed that the “reproductive health and rights” approach of ICPD and Beijing was morally wrong because “it promote[d] ‘abortion on demand,’ homosexuality, premarital and extra-marital sexual relations, and greater control for women over sexual and reproductive behaviors.”50 Consolidation around these objectives as “anti-gender ideology” became a rallying cry for the backlash against reproductive rights. What Peggy Leavitt and Sally Engle Merry called the “transnational modernity” with which women’s rights had come to be associated after Vienna, Cairo, and Beijing, facilitating network and partnership building with organizations across the world,51 became the target of conservatives, even as the political economy underpinning neoliberal “modernization” was left unchallenged. In the fall of 2000, the Millennium Declaration outlined the new development agenda through 2015, filled with aspirations to end poverty and promote dignity, but it did not include reproductive rights.52 Translating the Millennium Declaration into eight global development goals, known for short as MDGs, was an opaque process controlled by a tiny group of technocrats—mostly economists and statisticians from UN agencies.53 The contrast with the social mobilization at the UN conferences of the 1990s could not have been more dramatic. Among other consequences, as Barbara Crossette writes, “This [more] streamlined procedure also meant . . . that those delegations who would have fought hard to include reproductive rights and services had limited input. NGOs and even government experts were barred entirely from the process.”54 Reproductive health and rights were reduced to MDG 5, the depoliticized goal of “improving maternal health.”

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It was in this climate that the pendulum in Peru swung back to a denial of reproductive rights. In 2001, the year that the MDGs were adopted, the new administration of President Alejandro Toledo launched two investigations into the national family planning program, even using the language of “genocide.” In this context, the inclusion of the sterilizations as “crimes against humanity” by the Truth and Reconciliation Commission was irreparably clouded by the politicization of those terms by certain actors. The new minister of health under Toledo, Luis Solari (and his successor, Fernando Carbone), were both part of the ultraconservative Catholic sect, Sodalitium Christianae Vitae. Under the new regime, women’s fertility was determined by the “will of God”; thus all contraception was heavily restricted. Even under the subsequent administration, access to permanent methods was still very difficult to access by the time Pabla desperately wanted a tubal ligation.55 At the same time, the idea of “safe motherhood” in MDG 5 offered the perfect noncontroversial goal and talking point for the conservative Catholics who had taken control of the Ministry of Health. Cecilia Costa, who in the early 2000s directed the government’s strategic plan to reduce maternal mortality, told me in an interview, “They can criticize us for what we did with family planning, but look at what we’re doing now on maternal mortality. . . .This is a priority for the country and we’re going to set our sights on this, and saving women’s lives is an unquestionably good goal”56 [emphasis added]. As we saw in Pabla’s case, the government adopted the same punitive approaches to reducing maternal mortality as it had to family planning, often weaponizing the health system against indigenous women. In addition to quotas for prenatal checkups, both formal regulations (such as regarding autopsy) and informal rules were created to incentivize women to deliver in health-care facilities even if they were not equipped to provide emergency obstetric care. For example, families were frequently required to pay for birth certificates for children not born in facilities, a practice that blatantly violated Peruvian and international law.

Assessing Impacts of Applying Human Rights Frameworks and Strategies in Health Measuring What Matters The way we measure the effect of deploying human rights in health is directly related to our understanding of how rights function and what changes matter. In some conventional legal assessments, the emphasis is on formal norms established through legislative reform or material impacts from judicial orders.



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However, Rachel Rebouché’s critique of excessive focus on formal norms in relation to abortion is true of health more broadly: “The weakness of the methodology is that [laws are] evaluated, as well as legitimized, against a highly stylized, abstract set of rights while leaving out or marginalizing questions of what [the law] achieves in practice.”57 She emphasizes the importance of informal norms (such as charging for birth certificates for children born at home) and background rules within and beyond the health system (such as hierarchical and punitive decision-making, and labor flexibilization). Understanding how these factors play out and what they mean in practice requires contextual knowledge. A formalistic approach to analyzing comparative legal frameworks is exacerbated by the increasing tendency in global health and development to use quantitative indicators to capture realization of rights to SRH.58 As Rosga and Satterthwaite assert, abstracted use of quantitative indicators threatens “to close space for democratic accountability, [purporting] to turn an exercise of judgment into one of technical measurement,” to be conducted by “experts.”59 The Peruvian case suggests that rights function to effect change through multiple channels at multiple levels. For example, human rights lawyers identified wrongs and articulated them in rights terms, pushing the limits of the legal scaffolding available at the time. A coalition of new and traditional women’s and human rights movements generated awareness and moved issues to the public agenda, gathered and generated information, challenged official accounts, and advocated for political change. Some activists engaged in mass mobilizations and other in symbolic actions, such as washing the flag, that maintained the spotlight on the regime’s many abuses. Independent institutions, such as the Defensoría del Pueblo (Human Rights Ombuds office), and a small number of brave legislators and independent media outlets provided domestic opportunity structures and catalyzed pressure on the Fujimori regime. In turn, international and regional institutions first provided conceptualizations of reproductive rights in UN conferences and treaties; later, together with transnational networks of women’s and human rights groups, these supranational forums promoted external accountability and amplified the demands of domestic actors. Assessing what was and was not achieved in Peru calls for engaging with what Alice Miller calls “the much messier and more context-specific questions of how rights are made real, how services are revised and policy makers and local authorities are convinced that their practice must change, and how affected persons are moved to act as if these rights can in fact underpin their actions and demands.”60 Evaluation of these different impacts is much trickier because it acknowledges the incommensurability of certain effects; it requires accepting

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learnings at multiple levels that mean strategies to advance health rights cannot merely be rolled out.

Direct and Indirect Normative Impacts We can identify impacts that stem directly from the original Mamérita Mestanza petition, but these are often best understood over time and not as a single snapshot. These include material changes, such as reparations to the Mestanza family and the class of women affected.61 In Peru sterilized women were given access to state-funded health insurance, which by law they were entitled to in any case. As noted previously, women who were sterilized were not initially compensated for the physical injuries or mental trauma they suffered, and the Mamérita Mestanza case was eventually reopened in 2012 as a result, and was the subject of hearings at the IACHR in 2014.62 In 2015, after the hearing at the IACHR, the Peruvian government committed to providing adequate resources to the Public Prosecutor to allow her to complete preliminary investigations and to create a registry of the victims of forced sterilizations in order to provide some compensation. In turn, criminal prosecutions of some of the architects of the sterilization plans for crimes against humanity were undertaken in Peru in 2018; as of this writing, there have been no convictions. There were impacts on regulations and policies that stemmed from the combined pressure of the legal petition and the social and political mobilizations that the published reports triggered. Protocols for informed consent and policies requiring surgical sterilization to be performed under hospital-like conditions were adopted. Internationally, the Mamérita Mestanza case and the sterilization scandal in the USAID-supported family planning program created momentum for conservatives to achieve passage of the 1998 Tiahrt Amendment to the US Foreign Assistance Act, which prohibited aid to countries in which targets, quotas, or financial incentives were used in family planning.63 Mamérita Mestanza’s case, despite ending in a friendly settlement, contributed to global norm development and diffusion over subsequent decades. In a 2016 case before the Inter-American System, I. V. v. Bolivia, the involuntary sterilization of a Peruvian refugee in Bolivia was found to constitute intersectional discrimination as well as violations of bodily integrity, freedom from inhuman treatment, private life, information, and access to effective redress.64 In the I. V. v. Bolivia case, the Inter-American Court of Human Rights explicitly recognized the effects of gender stereotypes on informed consent: “(i) women are seen as vulnerable beings, incapable of taking reliable or consistent decisions, which results in providers not giving them sufficient information to give them



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informed consent; (ii) women are considered impulsive and indecisive and in need of a more stable person with better judgment, usually a man; and (iii) it is the woman who should bear responsibility for the couple’s sexual health.”65 The Court further noted that the power dynamics and asymmetrical interactions between medical personnel and the patient and her family could not be separated from intersectional discrimination in society, and imposed an affirmative burden on the state to provide “active transparency,” to proactively provide nontechnical, accessible, actionable information to mitigate the effects of structural inequalities in genuine informed consent.66

Impacts on Public Discourses In their work on judicial decisions, César Rodríguez Garavito and Diana Rodríguez Franco emphasize the need to go beyond material effects to examine “symbolic effects,” both direct (reframing of media coverage, shifts in public discourse around sterilizations) and indirect (transformation of public opinion, appropriation of agency by survivors of rights violations).67 The Mamérita Mestanza case, together with political and legal advocacy around involuntary sterilizations, reflected and used the sea change occurring in normative understanding of violence against women in the 1990s. Human rights were powerful tools in providing a “radical break from the view that violence [against women] was natural and inevitable.”68 In turn, the Peruvian case created deeper understanding of structural and institutionalized violence in the health system as violence against women. As Rebecca Cook notes, women’s health is a metaphor for the (non)fulfillment of women’s rights “in the body politic and in influential community institutions, whether political, economic, religious, or health care.”69 Moreover, by bringing the Mamérita Mestanza case to the Inter-American System, the sterilizations became an issue not just for the Ministry of Health (which wanted to resolve them as lapses in quality of care). They were immediately converted into issues that called for the attention of the Ministry of Justice and the Ministry of Foreign Affairs, which was key to enlarging the public debate and discussion about what the sterilizations revealed in terms of the treatment of indigenous women in Peru. As described earlier in the chapter, there is no question that political discourses and social movement coalitions changed at the time, due not just to the Mamérita Mestanza case itself, but to the tremendous social mobilizations that surrounded the revelations. Civil society activism for health rights beyond SRHR also evolved as new actors and coalitions were formed. A Foro Ciudadano en Salud (FOROSALUD; Civil Society Forum on Health) emerged both because of

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Figure 4.1  Recursiveness of using human rights in health: Mamérita Mestanza v Peru case and involuntary sterilizations. CEDAW 1979/1981

Women's health and feminist movement organizing and mobilizing

Trans-sectoral International Conferences 1990s

Vernacularization (socio-legal translation)

Inter-American Commission Mamerita Mestanza case

Broad concepts defined in light of concrete experiences for women facing involuntary sterilization

* Change in institutional actors involved * “technical lapse” or misfortune becomes injustice to be remedied

Norm diffusion at national and supra-national levels

Change in framing produces changes in response and multiple impacts

Material compensation/ changes in laws and policies

New coalitions formed for advocacy/social mobilization

Ideational/symbolic changes; appropriation of agency

the sterilizations and because of other health rights activism. It created a large civil society network of health professionals and human rights advocates across the country. In turn, the notion of health rights was more broadly disseminated, and over a period of years varied legislation was proposed by civil society and passed in subsequent years, including Law 29414, which established patients’ rights in healthcare facilities.70 On the other hand, even when issues of mistreatment and abuse were brought onto the health agenda and personnel within the system changed, decisionmaking about interventions remained tied to goals and targets, and the Peruvian Ministry of Health remained colonialist, authoritarian and punitive in subsequent administrations. As evident from Pabla’s case, the historically rooted ethnic and gender inequalities that had underpinned the sterilization abuses continued to disproportionately result in the neglect of obstetric care for poor, rural, indigenous women. As Giulia Tamayo wrote in the early 2000s, the persistently high maternal mortality rates among indigenous women such as Pabla made manifest and irrefutable the profound structural discrimination they continued to face.71 Further, a major message of this book is that we cannot understand impacts of deploying rights in health without considering the structural constraints that were being imposed by the neoliberal organization of the economy. Even after Fujimori’s draconian adjustments, in the early 2000s Peru’s foreign debt represented 38 percent of GDP and the country was annually spending four times more on debt service than on health.72 Moreover, 40 percent of Peru’s debt was



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in “variable rate” instruments and almost two-thirds was in USD-denominated instruments. That meant that the government—like others across the world—was extremely vulnerable to exchange rate fluctuations and risks associated with interest rates in the United States, over which they had zero control. In other words, at the very same time that the deregulation of financial markets was encouraging volatility, governments were hamstrung in their ability to predict what resources they could allocate to health and social sectors for long-term investments even if (unlike Fujimori) they had the political will. In short, human rights−based legal and political mobilizations in the aftermath of the sterilization scandal did achieve multiple and important impacts. Nonetheless, the background structures against which advocacy efforts were made limited the reach of effective enjoyment of health rights by indigenous women in practice.

We grieve for unfinished lives but not for lives that are never really lived or as Judith Butler says, a “life that is not supposed to have existed at all, whose ‘negation’ is built into its definition.”73 Pabla’s time on this planet had been entirely devoted to fulfilling roles and expectations placed on her by others. She was evidently determined given the lengths she went to in order to seek care; perhaps she had a premonition about her pregnancy and feared leaving her daughters in the way her mother had left her. But after decades of doing interviews with family and friends of women who died in childbirth, across Peru and elsewhere, it was striking that where tears and laughter virtually always accompany anecdotes and memories, in Pabla’s case there were none. She was a blank. There was plenty of blame to go around for her death, though. Pabla herself was blamed because “she sat in the sun too much,” which caused the placenta “to stick to her back.” Agustín was blamed for not keeping the putuco warm enough, with some neighbors saying that Pabla died from the cold. Felix, the partero, was blamed for not asking the local health clinic for help in a timely fashion. The staff at the clinic was blamed by the health system hierarchy for allowing a maternal death to occur in its catchment area. The fundamental cause of Pabla’s death, however, just as with the sterilizations, lay in the structural violence, discrimination and dysfunction imbricated in the Peruvian health system. One of the key lessons that the Peruvian case illustrates, as Lynn Freedman writes, is “the extent to which abusive, marginalizing, or exclusionary treatment by the health system has come to define the very experience of being poor.”74 At every level, the Peruvian health system reflected and embedded the larger

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society’s colonialist and discriminatory norms, doubly penalizing indigenous women for their ethnicity and gender. But the converse is also true, as Freedman notes: “The health system as a core institution, part of the very fabric of social and civic life, has enormous potential to contribute to democratic development.” How patients and providers are treated within a health system is one way that that system reflects social values, as we have seen in Peru. Likewise, the accessibility of pertinent information encodes norms around transparency and accountability. The sufficiency and equity with which goods and services are financed and levels of care organized for different populations both reflects and influences solidarity norms in a society. The Peruvian case also highlights that how the system manages differences among plural identities and cosmologies is crucial for a health system to contribute meaningfully to democracy. When SARS-CoV-2 struck, Peru’s health system once again came under scrutiny because it had the highest COVID-19 mortality rate in the world by the end of 2021. Indigenous and native Amazonian communities were particularly hard-hit, both because of risks of exposure—poverty, overcrowded housing, undernutrition—and lack of access. There was also substantial vaccine hesitancy among native populations and among the Quechua of the Altiplano that spans from Peru to Bolivia. In this regard, one physician noted: “It isn’t denialism about COVID19, nor is it the typical anti-vaccine denialism. Rather, there is a lack of trust in the healthcare system. . . . When these populations go to the healthcare system, they suffer mistreatment. And this trauma means they don’t want to go back.”75 To be clear: traditional medicine is not a substitute for equitable access to the latest and most effective diagnostics, therapeutics, and vaccines. Likewise, pregnant women like Pabla require access to emergency obstetric care as a matter of justice. Nonetheless, the historical suppression of traditional medicine and practices, coupled with mistreatment, by the formal health system fosters profound mistrust that we cannot expect to simply be set aside when a new infectious disease emerges. What is to be done to address these structural and historically rooted issues? Democratizing health systems is notoriously challenging. But we need not be nihilistic; creative approaches can navigate between utopian paralysis and trivial reforms. For example, in conjunction with the investigation of maternal deaths such as Pabla’s, which Physicians for Human Rights conducted with CARE-Peru, we worked with women community leaders from Puno and the regional offices of the Defensoría del Pueblo to monitor reproductive health services. Accompaniment was at the heart of this model; indigenous women literally and emotionally accompanied other community members during their pregnancies, including in



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seeking care. With the leverage that came from working through the Defensoría del Pueblo, these indigenous women were able to secure changes in both policies and practices from local and regional health authorities, and ultimately from authorities at the national level. Replicated elsewhere in Peru, the program has been lauded internationally for contributing to increased transparency, respect, and cultural sensitivity in service delivery for rural, indigenous women—as well as contributing to the development of national policies enabling citizen monitoring in all health policies and programs.76 However, perhaps the greatest significance of that effort, along with work by many other grass-roots organizations across Peru, derives not from generalizable impacts but from the processes themselves. “Talking circles” have long been a part of feminist and indigenous movements around the world. The invariable corporality of health-related rights, which challenges universal disembodied gazes in law and medicine, makes such talking circles particularly important. In this case, indigenous women got to tell new stories about their bodies, themselves and their lives—the kind of story Pabla never got to create for herself. These stories changed how this subaltern community made sense of their experiences in the health system, and shaped future capacities to stand up for their rights in encounters with providers.77 Nancy Fraser argues that it is in these “counterpublics”—sites of resistance among groups excluded from politics vis-à-vis the state—that marginalized people can begin “understanding themselves better, forging bonds of solidarity, preserving memories of past injustices, interpreting the meaning of those injustices, working out alternative conceptions of the self, of community, or justice, of universality . . . deciding how to act individually and collectively.”78 That process of awakening to injustice is invariably painful, individually and collectively. When then-president Pedro Castillo was jailed in December, 2022 by his former Vice President, the mass protests by indigenous groups and campesinos that broke out across Peru reflected this long-simmering rage at their continuing exclusion from Peruvian society and demands for representation by national government. Of course we should not romanticize the empowerment of communities unless it results in material changes; protests can lead to brutal repression. Yet, as Maria Elena Moyano, an afro-descendant Peruvian feminist who began her own activism through such collective discussions as part of her work in the Vaso de leche (Cup of Milk) committees that provide food in Lima’s urban slums, asserted, participating in social struggle is itself an affirmation of our individual and collective dignity. Moyano argued that in the long run such participation was the key to “sowing new seeds of power in a new Peru.”79

Chap te r Five

Globalizing Crises, Pandemics, and Norms [G]lobalization is under trial, partly because these benefits are not yet reaching hundreds of millions of the world’s poor, and partly because globalization introduces new kinds of international challenges as turmoil in one part of the world can spread rapidly to others . . . as demonstrated by the dramatic spread of AIDS around the globe. —WHO Commission on Macroeconomics and Health1 [O]ur post-war institutions were built for an inter-national world, but now we live in a global world. —Former UN Secretary-General Kofi Annan2

THE COV I D -19 PA N D E MIC introduced millions of people across the world to the numbing experience of powerlessness over their own lives, their governments, and the global order. For many millions of others, that was nothing new. I had been living in East Africa for several years when I met the family of Elva, a woman in southern Malawi who had died in 2012 delivering her sixth child after her husband had infected her with HIV.3 Elva had dropped out of school as a teenager when she became pregnant, but the father of her first child did not stay with her. Shortly thereafter she entered into a common-law marriage with Christopher, with whom she had five more children. Christopher spent some of his time with Elva in rural Neno District and some in the city of Blantyre with his parents and siblings. He also went frequently to South Africa for farming, construction, and other occasional jobs, and it was there he contracted HIV. Over 80 percent of the population of Malawi was living on subsistence farming, and it was common for men to do seasonal labor in South Africa. As we have seen in COVID-19 times, disease always follows trade and travel routes and does not respect national borders.

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In southern Africa, HIV/AIDS was primarily transmitted through heterosexual sex and fueled by women’s lack of rights, along with poverty and food insecurity. Elva’s story was no exception. Christopher beat Elva and was emotionally abusive to her and their children, including not sharing the family’s meager food with them. According to Elva’s mother Pauline, Christopher had been taking antiretroviral therapy he obtained in South Africa but stopped at some point. He would not use condoms or allow Elva to use contraception. Indeed, Elva only found out she was HIV-positive late in her last pregnancy, which had been the product of repeated marital rape. But marital rape was not a crime in Malawi, and there was no question of Elva getting an abortion. She was given nevirapine to prevent mother-to-child transmission (PMTCT), which was designed to spare the baby. Elva was clearly not all right after delivery; the bleeding did not stop, and it appeared she may have had a stroke as her tongue was hanging out and she could not speak. The health center where Elva delivered was not equipped to manage an obstetric emergency, let alone one that required intensive care or surgery. Nor was there any referral network—no ambulance, no provision for vouchers for private cars, not even stable communication between the health center and the hospital. Pauline managed to take her to Blantyre District Hospital, which was hours away on the only paved road in Neno. But when they arrived, there was no one to treat Elva. After more delays, a desperate Pauline brought her daughter all the way back to the health center, where she was declared dead. When Elva died, Christopher disappeared. There was no doubt that Elva’s six children would be raised by Pauline and her husband Crispine, along with another three children orphaned by other daughters who had also died of HIV/ AIDS contracted from male partners. Neither Christopher nor his family offered support or came to visit; when Christopher died of AIDS shortly before my interview, the news had reached Pauline through a community member. Pauline and Crispine were already in their midsixties when I interviewed the family, and had lived hard lives. They had met as children, both dropping out of school after a couple of years and both illiterate. Three of their twelve children had died of HIV/AIDS. By the time I met them, Crispine had become a shrunken, withdrawn man; cataracts had left him almost completely blind without the simple surgery to remove them. As Pauline and I sat and talked in the dirt space in the center of the small family compound, children hovered around her, flitting away and coming back to touch her or be close for a moment. It was clear Pauline was the anchor of the family, and it was equally clear

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that she understood that, as a result, surrendering to fatigue or despair was a luxury she did not have. Pauline and Crispine lived in abject destitution with no electricity, running water, or even a pit latrine, and little capacity to feed, let alone care for, nine grandchildren with the fruits of their tiny plot. Some of the older children had already dropped out of school to help with the farming and earn extra income; one of Elva’s daughters had dropped out because the other children bullied her about her odd behavior after her mother died. All the children were struggling. Some, including Elva’s one-year-old baby, had signs of HIV infection. The toxic combination of extreme poverty and emotional loss inflicted its cruelties on them all: flies in their eyes, lice and skin conditions, protruding bellies and loss of interest in food, poor sleep, and on and on. By 2013, when I met them, had they lived in the UK, Malawi’s former colonial ruler, these children would have had access to treatment for the array of health issues they faced; had they lived in South Africa they would have had access to a social protection allowance for HIV/AIDS orphans as well as ARVs for those who were HIV-positive. In this remote corner of southern Malawi, they had access to nothing. In 2010, Malawi and South Africa had life expectancies of 55.6 and 57.7 years, respectively; the UK had a life expectancy of 80.4 years.4 How we understand the injustices embedded in these intersecting inequalities in human development and the societal and global responsibilities for them is crucial to advancing health rights. Malawi illustrates both why a New International Economic Order (NIEO) or the materialization of a right to development could have been so transformative in changing the trajectories of decolonized countries and the complexities of national self-determination in less than democratic regimes. British colonial rule of this landlocked country was quickly replaced with neocolonial controls based on the debt undertaken after independence in 1964. The debt assumed in the 1970s quickly increased because, among other things, interest rates rose sharply in the early 1980s while export commodity prices (tea for example) fell. The combined effects of a severe drought and an influx of refugees from the civil war in Mozambique resulted in a ballooning debt, which has since subjected Malawi to repeated waves of austerity and restructuring.5 At the same time, Malawi has been plagued by corruption and poor governance since independence, and people’s lives are governed as much by the autocratic neo-patrimonial system of chiefs and paramount chiefs as by the legal institutions of the state.6 This chapter takes up the story of the HIV/AIDS pandemic in southern Africa during the 2000s. After the discovery of ARVs was announced at the 1996 World



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AIDS Conference in Vancouver, Canada, global advocacy around the pandemic changed the paths of both global health and development, and health rights. In 1996, Brazil became the first country in the global South to provide universal access to ARVs after activists, NGOs, and government representatives came together and framed demand for access as a human right.7 Other countries, from Argentina to India, followed. But nowhere was HIV/AIDS more devastating and the narrative of the pandemic more analyzed than in southern Africa, and especially South Africa. The first part of the chapter situates southern Africa in a global economy ever-more firmly gripped by neoliberal policies by the turn of the millennium. In the 2000s, the internet had created a “global web-enabled playing field,” which allowed corporate actors and investors to work across the world in real time.8 At the same time, successive financial and banking deregulations in the US and elsewhere led to vastly expanding capital markets that left governments in the global South with little control over basic economic policy and planning. They also meant that economic crises in one part of the world were quickly felt elsewhere, a phenomenon that culminated in the 2008 financial crisis that began in the US but quickly spread throughout the world. It was in this context, in which policy space was increasingly dramatically limited, that southern Africa faced the deadly HIV/AIDS pandemic. In South Africa, the Treatment Action Campaign (TAC), a broad-based coalition of activists, turned first to political and social mobilization and then to the courts to vindicate rights to access medications. AIDS activists not only demonstrated that the right to an affirmative health entitlement could be enforced; importantly, they also challenged the unfettered power of pharmaceutical companies to set prices and cloak their decisions behind intellectual property rules. Second, the chapter goes on to describe how prevalence of HIV/AIDS in southern Africa changed calculations of the imperatives of addressing it through the new development agenda, the Millennium Development Goals (MDGs). HIV funding and programming became the success story of the MDGs and showed how new imperatives could catalyze the creation of new institutions of global governance. At the same time, the MDGs shifted dramatically away from the aspirational view of development through institutional and political change to a technocratic approach focused on narrow, vertical interventions, where goals and targets could be set and measured at the global level. The concept of “global health” replaced older concepts of tropical hygiene and international health, which had been based on colonialist framings of health challenges in poor countries. Global health, ostensibly concerned with equity

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across and within countries, was accompanied by increased attention to “global health security,” which focused on protecting national security interests as much as on common health threats. The new global health security paradigm was enshrined in the revised International Health Regulations (IHR) of 2005, which attempted to balance protection of travel and trade against public health. This was a precedent that would be sorely tested during the COVID-19 pandemic. Lastly, the chapter traces the evolving edifice of human rights in the first decade of the millennium. On the one hand, population groups such as persons with disabilities and, increasingly, LGBTQ+ persons, were acknowledged as subjects of dignity with equal rights, which called for reassessing institutional arrangements for everyone. At the UN, human rights norms, institutions, and procedures proliferated exponentially, including in relation to health. In light of this turn toward global institutions, and the issues facing us today, the chapter considers what contested demands for global health justice mean in a human rights framework.

Global Economic Governance and Health-Related Rights: The Case of HIV/AIDS The Globalized Economy: Debt, Inequality, and Instability By the early 2000s, growing economic inequalities within and between countries were glaringly apparent. Together with other authors, in 2000, Jim Yong Kim, who would serve as president of the World Bank from 2012 to 2018 and appear to change his views significantly, questioned the IMF and World Bank narrative of the time, arguing that “at the close of two decades of neoliberal dominance in international finance and development, 1.6 billion people are worse off economically.”9 Indeed, since the end of the 1970s economic benefits had been going to the top quintile of the population across low-income countries while in the United States the top 1 percent was more than doubling its ownership of private wealth.10 It was also clear that the US and Western Europe were reaping the benefits of globalization in the post–World War II order. By the turn of the millennium, sub-Saharan African governments were transferring on average four times more in debt repayments to Northern countries than they were spending on the health and education of their citizens.11 For example, in Malawi approximately USD 100 million in debt payments left the country annually from 1980 through the 1990s; while standards of living declined, the country’s debt still doubled. In 2000, Malawi was designated a heavily indebted poor country (HIPC) under the Multilateral Debt Relief Initiative established by the World Bank, the IMF, and other creditors. By the early 2000s financialization



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of debt had led to fragmentation between private lenders, governmental donor groups, and IFIs, making it virtually impossible for poor countries to negotiate restructurings. HIPC status was intended to enable countries to substitute debt secured at more favorable terms, including partial grants (concessional finance) for debt that had previously been secured at market rates (nonconcessional finance). Numerous scholars pointed out the paradox of so many countries coming to be defined as heavily indebted at the end of two decades of ostensible debt relief and increased concessional financing from IFIs. 12 In Malawi’s case, the government was forced to privatize state-owned enterprises in 2001 and 2002, including those in the agricultural sector. In the absence of effective regulation, privatized food systems do not serve the interests of local farmers who need access to markets; nor do they serve local consumption needs. As a country heavily dependent on subsistence agriculture, Malawi faced a food crisis in 2004–2005. By 2005, Malawi was spending 9.6 percent of its national income on debt servicing and only 4.6 percent on public health and care.13 Just as in Peru, in many cases this debt was denominated in variable-rate instruments, making long-term national development planning virtually impossible. Sergio Spinaci of the WHO Commission on Macroeconomics and Health noted the difficulty of investing more in health “if you have a large proportion of the budget invested in debt repayments and a macroeconomic policy focused on containing even minor inflation and setting rigid spending ceilings for social sectors.”14 All complex social problems, including health issues, require long-term, ongoing investments. But policy space had shrunk dramatically in countries that had donned “the golden straightjacket,” making countries such as Malawi ever-more dependent on politicized, crisis-driven, and erratic foreign aid. Further, “financial modernization” had dismantled meaningful regulation against exploiting asymmetries in information and fluctuations in interest and exchange rates; consequently, destabilizing effects could now spread across countries and regions with alarming speed.15 Protests such as the so-called tear-gas ministerial meeting launched against the WTO in 1999—the “tear-gas ministerial meeting”—received spurts of media attention but were largely dismissed by policy-makers as radicals out of touch with reality.16 That is, out of touch with the hegemonic reality that had been so carefully constructed.

Global Economic Governance versus National Politics: The Case of South Africa What occurred in post-apartheid South Africa illustrates sharply David Kennedy’s insights into the global political economy as a “terrain for contestation”

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between global markets and local governments, where the law shapes power relationships, reifying and sometimes challenging inequalities.17 In South Africa, the economic strictures imposed on the post-apartheid government dramatically clashed with the ability of national politics to address the social and health crisis posed by HIV/AIDS. In addition to its new, transformative constitution, Nelson Mandela’s government promised sweeping social and economic reforms to address the structural inequalities built into the society over decades of apartheid—acutely reflected in health and the health system. Poverty-related diseases and lack of basic care and sanitation were widespread, especially in rural areas. The post-apartheid health system reflected the legacy of racialized colonialist governance, including radically underfunded care for non-whites and lack of investment in human resources for health and in public health measures in areas where predominantly non-whites resided. The country also faced a growing HIV epidemic, which by 1999 was estimated to affect 22 percent of the adult population. By 2000, there were estimates that up to seventy thousand children were being born every year with HIV.18 Against this backdrop, the TRIPS agreement, in effect since 1995, had increased the cost of on-patent pharmaceuticals and reduced access to generics.19 The international patent system had been designed by and for wealthy countries, where the overwhelming majority of pharmaceutical research and development and manufacturing takes place. Ten countries accounted for approximately 80 percent of spending on research and development. By contrast, just before COVID-19, sub-Saharan Africa and central Asia each accounted for just under 1 percent of the world’s pharmaceutical market and Latin America and the Caribbean accounted for less than 4 percent.20 Intellectual property regimes, including patents, copyrights, and trademarks, had become a huge source of the wealth transfer from the global South to the economic North. In 1997, the democratically elected government of South Africa had amended the Medicines and Related Substances Act to create competition in the domestic market, allow parallel importation, and make generic substitution of off-patent medicines mandatory. But pharmaceutical lobbies in the US and Europe, not content with forging regulations that would enhance their profits, pushed their governments to apply pressure on global South countries that would not play by their rules. The US revoked favorable tariffs to pressure the South African government into abandoning legislation that would require distribution of free ARVs, and in February 1999 US vice president Al Gore visited to pressure Mandela’s government into overturning that legislation—which backfired in this case.21



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South Africa was in a bind. The country was “under-borrowed” during apartheid because it had been a pariah state, but in short order the World Bank orchestrated huge loans to the new democracy for housing, infrastructure, and other projects. The government was also desperate to join the world economy and secure foreign investment. The first two African National Congress (ANC) governments generally followed international economic prescriptions and, “hoping for redistribution through growth,”22 slashed tariffs and opened the country to international trade and capital flows, fought inflation, and pursued conservative fiscal policies despite the massive impoverishment visible in the wake of apartheid. All democratic transitions are complex to navigate, but South Africa was facing a particularly volatile situation; conservative political elites had to be pacified. That meant, among other things, subsidizing privatization, which scholars later found offered vast opportunities for corruption, including in health. At the same time, during the administration of the second ANC president, Thabo Mbeki, unemployment (disproportionately young, Black, unskilled workers) rose as high as 31 percent by some estimates—among the highest in the world.23 By the early 2000s, South Africa had little control over its own monetary and fiscal policy. Rules liberalizing capital flows across borders precluded attempts to boost profitability in manufacturing by devaluing the national currency; at the same time, greater subsidies to manufacturing industries, which might have created more jobs for unskilled laborers, ran counter to WTO rules.24 Global economic governance left the government hamstrung with limited options in terms of structuring a democratic political economy.

Government Response to the HIV/AIDS Epidemic: Mobilizations and Rights Advocacy from Streets to Courtroom to WTO In 1998, the Treatment Action Campaign (TAC) was founded by Zackie Achmat and other activists who were mostly veterans of the antiapartheid movement; it quickly grew into a broad social movement around the HIV crisis. Under social and political pressure from TAC and others, the government agreed to fund a two-year pilot program of PMTCT via nevirapine (the drug that Elva had received). If the program proved efficacious, it was to be scaled up from the initial two sites per province. By 2001, nevirapine had officially been registered as a PMTCT drug. But Mbeki’s government questioned the link between HIV and AIDS, as well as the safety and efficacy of nevirapine and the capacity of the health system to administer it. Consequently, the Ministry of Health failed to expand its small pilot program. TAC turned to social and political mobilization, and when

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those initiatives did not work, they turned to litigation.25 Many TAC activists were veteran organizers from anti-apartheid struggles and their instinct was to mobilize pressure through the politics of the street. Mark Heywood, former director of the AIDS Law Project (subsequently called Section 27) recounts that “TAC organised hard. We demonstrated, confronted, challenged and demanded.”26 As with the AIDS Coalition to Unleash Power (ACT UP) earlier, TAC was willing to be bold and confrontational where other groups had been meek. South African president Thabo Mbeki and health minister Manto TshabalalaMsimang, together with provincial health ministers, blocked political channels for advancing lifesaving HIV treatment. It was the “time of dying” as Mark Heywood says, when hospitals became death sites and cemeteries became parking lots because of back-to-back burials. However, former statistician-general Pali Lehohla notes that at the prevailing cost of ARVs in the early 2000s (more than USD 10,000 per year per person), “South Africa would have borrowed itself into bankruptcy from the IMF, World Bank and capital markets with a result of more death.” Lehohla asserts that Mbeki’s strategy was “first stopping the capitalist feeding frenzy at the door, second mobilizing global solidarity for generics, third conscientizing [sic] the world for global resources, and fourth demanding a practical medicine-dispensing regime that would be less complex and not harm those who are less fortunate and illiterate.”27 In the end, though, it was civil society that curbed the price demands of pharmaceutical companies, mobilized global solidarity, and raised the world’s consciousness. In that struggle, a more engaged judiciary seeking to uphold the emancipatory promises in the constitution played a critical role. In a now-famous landmark decision in 2002, South Africa’s Constitutional Court held that restricting PMTCT to two sites per province unreasonably restricted access to nevirapine, violating the rights to dignity and life as well as the rights of adults and children to medical services. The opinion did not dictate to the government exactly what it needed to do but ordered that it develop a national plan of action for PMTCT, which the Court would then review to see if it passed constitutional muster in terms of both formulation and implementation.28 In so doing, the opinion was widely hailed as striking a balance between the kind of robust review consonant with the goals of a just and equitable society and retaining the constitutional legitimacy of a balance of powers, which had been one of the chief critiques of ESC rights enforcement. The Court did not shy away from matters that had budgetary implications, but was far from usurping the powers of the political branches. Rather, it was catalyzing action on their part.



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Due to federal and provincial government resistance, the PMTCT opinion was not uniformly enforced. Further litigation was necessary, including contempt of court orders. Nonetheless, new policies and a national plan of action were adopted. Ole Norheim and Siri Gloppen have estimated that by 2010, the estimated life years saved by women and infants having access to nevirapine at 60 percent coverage was approximately 1 million.29 Beyond the direct and indirect material impacts in terms of ARV access and restructuring of programs in health institutions, there were enormously consequential symbolic impacts, as discussed in Chapter 4. Deaths from HIV were no longer described in public discourse as unfortunate casualties of this dreaded disease but were considered legal injustices. Desperately ill impoverished Blacks came to see themselves as equal members of the new South African nation and appropriated the agency to make their nation live up to the promises of the iconic constitution. The norm diffusion effects were also significant and went far beyond South Africa; the initial success ushered in a tide of other access to medicines litigation focused on ARVs in South Africa and elsewhere. These included access for specific populations such as prisoners,30 access to second-line treatment,31 and intellectual property litigation in Kenya successfully challenging legislation that, under the guise of prohibiting “counterfeit medicines,” erected barriers to ARVs and other medicines.32 And countless more. Early HIV/AIDS activism catalyzed a far broader turn to courts to enforce health rights claims around the world. The groundwork for the TAC PMTCT case had been laid by an earlier case, and access to ARVs was extended greatly by another; these were arguably equally important in the process of effecting systemic change. In 1999, thirty-nine pharmaceutical companies sued the South African government to prevent implementation of the amended Medicines and Related Substances Act, which allowed for parallel importation and compulsory licensing to distribute affordable ARVs.33 Nelson Mandela was listed as the first respondent. In 2001, TAC joined the case as an amicus curiae framing the dispute in moral terms—in Heywood’s words, as a contest “between rich, hugely profitable pharmaceutical companies and poor people in life-or-death need of essential medicines; between rich companies wielding great economic and legal power . . . and a newly democratic state seeking to keep a constitutional promise to protect the health of its people in the midst of the AIDS pandemic.”34 The Pharmaceutical Manufacturing Association (PMA) settled, fearing global outrage and the impacts of bad publicity if companies were to insist on enforcing their intellectual property rights when human beings were

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dropping dead at such rates. TAC proceeded to take a number of legal actions against transnational pharmaceutical companies to reduce prices. In 2003, after the PMTCT judgment, the Hazel Tau case was settled at the South African Competition Commission. TAC had argued that the collusive pricing practices of two foreign pharmaceutical companies, Glaxo SmithKline and Boeringer Ingelheim, violated South Africa’s anticompetition laws. The companies agreed to import generic azidothymidine (AZT), lamivudine, and nevirapine subject to a maximum 5 percent royalty, which was a major victory for ARV access and precedents against private companies.35 Today, as a result of relentless lobbying by TAC and other actors in global civil society, the great majority of South Africa’s ARVs are generics, largely imported from India. As these cases showed, legal advocacy for health rights requires a broad array of strategies that deploy not just human rights arguments. It requires working with and challenging antitrust, trade, contract, and administrative laws, which structure the possibilities for people to enjoy health entitlements. At the time, courts enforcing newly expanded constitutional rights seemed to offer a bulwark against neoliberal incursions into democratic politics. Mark Heywood expresses what many of us in the ESC rights community felt at the time, that “there can be successful campaigns for better health rights . . . that are driven by human rights demands and that take advantage of legal systems and the law.”36 But as Heywood himself extensively argues, the successful use of courts must be placed in the context of the TAC’s politics-centered approach, the almost unique social and economic consequences of HIV/AIDS in South Africa, and the focus on law in action, on bringing “social rights to earth in the form of actual social provision.”37 Another key lesson from HIV/AIDS is that battles at the national level cannot be isolated from those at the international level. In November 2001, the same year that the PMA case settled, the Doha Declaration on the TRIPS agreement was adopted by the WTO Ministerial Conference. The declaration affirmed that the TRIPS agreement “does not and should not prevent Members from taking measures to protect public health,” and the agreement “should be interpreted in a manner supportive of WTO members’ right to protect public health and in particular to promote access to medicines for all.”38 The Doha Declaration was not a complete victory for the right of access to medicines though. TRIPS restricts exports under a compulsory license to less than half of national production, which greatly undermines the economic viability of compulsory licenses by limiting economies of scale, seemingly at odds with the WTO mission of promoting



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trade and economic efficiency. According to Jamie Love, founding director of Knowledge Ecology International and long-time activist in the struggle for access to medicines, “making things worse, paragraph 6 of the 2001 Doha Declaration described the problem as “insufficient or no manufacturing capacities in the pharmaceutical sector” as if this was purely a technical issue, having nothing to do with economics.”39 After a year of negotiations, Article 31bis was adopted in 2003 to deal with compulsory licenses under TRIPS, which according to Love, “is a monstrosity of bad faith, hypocrisy and bureaucratic red tape.” He notes, “The fix for the problem in the 20-word Article 31.f was the 468-word Article 31bis, a 1,042-word annex to the TRIPS agreement, 220 words in nine footnotes in the Annex, plus a 136-word appendix to the annex to the TRIPS agreement.”40 That bad faith was again on full display when a handful of wealthy countries cynically rejected the TRIPS waiver, proposed by South Africa and India in 2020, relating to diagnostics, therapeutics, and vaccines for COVID-19, arguing that a waiver was unnecessary because flexibilities pursuant to the Doha Declaration were sufficient. On its face, that argument was “patently” ridiculous as under Article 31bis, compulsory licenses must be issued for each patent, when a vaccine could have dozens if not hundreds of patents.

Global Health and Development HIV/AIDS and the Global Health Architecture To human rights advocates, HIV/AIDS represented a dramatic illustration of both the need for applying rights in global health as well as the possibility for the enforcement of affirmative entitlements to health. Causality and state responsibility were clear: with ARVs, people lived; without them, they died. To global institutions, HIV/AIDS represented a global health security threat as well as a potentially devastating economic impact for sub-Saharan Africa, as most people with HIV were in their productive years. The HIV/AIDS pandemic highlighted not only ingrained inequalities within societies but also the injustice of global governance for health, which was rife with stereotyped beliefs about the cultures and capacities of people in the global South. In 2001, the head of the US Agency for International Development argued before the US Congress that efforts to extend ARV access to poor people would inevitably fail because, to be effective, the medication had to be taken on a schedule and in such impoverished communities, “people do not know what watches and clocks are.”41 The late Paul Farmer, cofounder of Partners In Health

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(PIH), was among the leading voices standing up to the blatantly colonialist view held by the US and the WHO. During the MDGs, HIV/AIDS activists and global advocates such as Farmer, together with institutional leadership at the newly created, multiinstitutional Joint United Nations Programme on HIV/AIDS (UNAIDS), and elsewhere, successfully campaigned for greatly increased funding.42 Three of the eight Millennium Development Goals were devoted to health: child health, maternal health, and communicable diseases (HIV/AIDS, tuberculosis, and malaria). In 2002, the UN Global Fund to Fight AIDS, Malaria and Tuberculosis (the Global Fund) was founded as a partnership between governments, civil society, and private-sector actors (including the Gates Foundation), and the funding it raised went overwhelmingly to HIV/AIDS during the MDGs.43 The Global Fund introduced a novel process for recipient as well as donor countries to make investment decisions and plans through what were known as Country Coordinating Mechanisms. These comprised medical professionals, civil society, and people living with HIV/AIDS. AIDS activists thus had a permanent institutionalized voice with respect to policies that were being designed for them. In 2003, US President George Bush created the President’s Emergency Plan for AIDS Relief (PEPFAR) and tripled US funding for HIV during the MDGs.44 While it greatly increased funding, PEPFAR simultaneously reinforced the neocolonialist power dynamics of aid. Countries were chosen according to political imperatives in the United States, on-patent ARVs were purchased, and prevention programs were based on a model of behavior change disconnected from social context: ABC— “abstain, be faithful, and wear condoms.” HIV programming in sub-Saharan Africa during the MDGs largely reflected the shift away from the need for broader trans-sectoral institutional initiatives that included efforts to transform gendered power relations as had been called for in the Beijing Platform for Action.45 Legal and policy reforms to end child marriage, confer inheritance rights on women, enact domestic violence legislation, provide social protection for people in poverty, and many other issues were pushed to the margins of programs that offered specific interventions to treat a specific pathology. Over time, both UNAIDS and the Global Fund’s support shifted to encompass human rights and rule of law concerns. But the MDG focus was not on social determinants of health, nor health systems as social institutions; it was on technical vertical interventions with objective quantitative metrics (e.g., ARV coverage) that could be tracked at global levels.



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A Shift in Governance and Accountability With the MDGs, the nature of the political UN development processes came to look much more like the technocratic governance-at-a-distance used by international financial institutions (IFIs) to ensure “modernization” of economies. As Marge Berer notes, “the global agenda . . . was taken over by the World Bank and the International Monetary Fund. . . . This ‘coup’ was a by-product of the consolidation of power by these new stakeholders, who asserted their leadership at the expense of the United Nations, whose leadership was previously responsible for global governance.”46 At the same time, the UN was losing core funding in its development agencies, according to Gita Sen, “pushing [it] ever closer to transnational corporations through the Global Compact.”47 The UN Global Compact, launched in 2000, was intended to encourage the private sector to partner with the UN on Environmental, Social, and Governance goals (ESGs). It transformed global governance, as well as the funding of global health. Transformed governance was accompanied by a change in discourse on knowledge to assess progress in the world. In the MDGs, progress was measured through a nested structure of goals, targets, and indicators. The goals were intended to establish global priorities in health and other areas of poverty reduction. However, because of donor financing and agendas, these global goals were quickly converted into national planning goals in aid-dependent countries, using the targets and indicators to measure progress. Countries were then held accountable for meeting specific outcome targets such as two-thirds reduction in child mortality and 75 percent reduction in maternal mortality ratios. This change implied a tremendous transfer of power from sovereign governments in resource-poor countries to global bureaucracies and institutions to: (1) set health priorities by choosing the goals as imperatives for national development; (2) establish the performance targets governments were supposed to meet in exchange for aid; and (3) decide the metrics through which progress would be measured.48 Not only do uniform targets not make sense—reducing maternal mortality in Peru by 75 percent is totally different from reducing it in Malawi—but, as a result, many national governments became accountable to global institutions and donors more than to their own populations for setting and meeting health priorities. The priorities of national development were ceded to “experts” at the global level rather than determined by those who were accountable to the people whose lives were affected. In the case of HIV, this greatly expanded testing and

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treatment; in other areas, impacts were far more mixed. By the end of the MDGs, not surprisingly, the majority of offtrack countries were in sub-Saharan Africa because the vertical programs of the MDGs failed to take into account starting places, infrastructure, and institution building, let alone the social determinants of health.49 At the same time that the WHO was experiencing shrinking and narrowing budgets, the private Institute for Health Metrics and Evaluation (IHME), funded by the Gates Foundation, was launched, in 2007, to be an alternative source of global health data. In 2010, IHME took over from the WHO the annual survey of the Global Burden of Disease, which was algorithmically calculated based on disability-adjusted life years (DALYs). DALYs assigned values to reductions in species-typical functioning. IHME greatly expanded data sources, supplementing data from national governments, and relied on algorithms to combine sources and produce estimates of progress on MDGs. These algorithms were not replicable or actionable at national level, thus shifting both knowledge production and the evaluation of performance in health from national level to governance at a distance, just as the economic adjustment targets had facilitated. The Gates Foundation has played an outsized role in shifting global governance for health. The Gates Foundation is obviously responsible for research and projects that have saved millions of lives around the world. Nevertheless, it should concern us that the actions the Foundation implements, the means and metrics it uses, and the priorities it sets (and does not set) are not subject to public scrutiny either in the countries in which it operates or in the United States, where it is headquartered. In national health systems, the Gates Foundation actively advanced privatization, and the reductivist and arrogant idea that business models could (re)solve the complex social problems we have been discussing throughout the book. Anne-Emanuelle Birn rightly notes that this the reflexive tenet—that such models “are superior to redistributive, collectively deliberated policies and actions employed by elected governments—masks the reality that private enterprise approaches have been accompanied, facilitated, and made inevitable by neoliberal deregulation, privatization, government downsizing, and emphasis on short-term results over long-term sustainability.”50 Linsey McGoey’s research has further pointed out that philanthro-­capitalists from Bill Gates to the progressive founder of the Open Society Initiatives, George Soros, earned their billions through business tactics (such as currency trading) that have “compounded financial instability, eroded labor protections and



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entrenched economic inequalities.”51 Why, then, is there not a greater clamor over the source of their wealth and their usurpation of government functions in global health governance? As one journalist interviewed by McGoey noted, Gates determines the areas it wants to pursue; it financially supports all the major global health agencies, as well as many leading researchers at major institutions: “That’s why you’re not going to get anyone on the record.”52

Global Health and Global Health Security The MDG era ushered in widespread adoption of the concept of “global health,” which, as S.ẹ`yẹ Abímbọ´lá has written, means many different things to actors with different agendas. The prevalent view of the transition from international to global health in universities and development organizations in the economic North during the early 2000s is that it brought a focus on health equity and recognized that health issues transcend national boundaries. But that narrative oversimplifies a complex and contested history. Abímbọ´lá argues that delivery problems define the terrain of global health: “While the gulf between discovery and delivery exists in other fields, what makes global health peculiar is that discoveries and the decisions on whether or how to deliver them are typically made at a distance, removed from the realities of their targets or intended beneficiaries. They are removed not only geographically but also socially, culturally and economically, even when geographically proximal.” As we saw in Peru, these distances also exist within countries across class, social, and ethnic divides. Abímbọ´lá explains that the gaping distance between discovery and delivery arises “when people with resources to address delivery problems do not have the information or motivation to either make the discoveries available or tailor them to local circumstances . . . [when] feedback between actors at the global and national level, the national and subnational level, or the subnational level and the community, or between any of the parties to these combinations [does not work].” In short, “It is present when there are asymmetries of power, motivation and information between the helper and the helped.”53 While there were gaping distances in the earlier paradigms of tropical medicine as well as international health, the knowledge and governance discourses in the MDGs, reified the asymmetries of power in the increasingly neoliberal architecture of the global economy. But there was another important shift in the political economy of global health during the 2000s. In the context of neoliberal economic globalization, the rise in biosecurity threats after 9/11, increased migration due to climate change as well as instability, and armed conflict, the consolidation of global health as

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a field was accompanied by attention to global health security. Global health security reframed the spread of infectious diseases as a national security threat, which required defending national borders as opposed to embracing a notion of shared humanity at stake in a pandemic. As then-Senator Barack Obama and Senator Richard Lugar stated in a New York Times editorial in 2005 written to urge policy attention to pandemic preparedness, “When we think of the major threats to our national security, the first to come to mind are nuclear proliferation, rogue states and global terrorism. But another kind of threat lurks beyond our shores, one from nature, not humans.”54 Controlling the spread of infectious disease across borders was not a new concern. It had become an imperative with the growth of trade and industrialization in the nineteenth century, largely to protect Europe and North America from “Asiatic diseases”. The establishment of the WHO led to the 1951 International Sanitary Regulations, renamed International Health Regulations (IHR) in 1969. In the postwar era, with improved living conditions and effective antibiotics and vaccines, the concern in the economic North turned to noncommunicable diseases. But HIV/AIDS, which precipitated resurgent infectious diseases such as tuberculosis, changed that. HIV/AIDS and later the 2003 outbreak of SARS CoV-1 called for a new legal framework to maintain a greatly expanded regime of international exchange and commerce. The purpose and scope of the IHR as revised in 2005 were to “prevent, protect against, control, and provide a public health response to the international spread of disease in ways that are commensurate with and restricted to public health risks, and which avoid unnecessary interference with international traffic and trade.”55 In providing a binding legal framework to govern public health emergencies of international concern (PHEICs),56 the IHR (2005) emphasized disease surveillance and notification, but included certain rights-related protections in the management of and response to cross-border health risks, especially for travellers. As Aeyal Gross has written, the framework of global health security prioritizes diseases determined to be PHEICs by a closed-door committee at the WHO “over endemic conditions like malaria, which impose a much greater burden on the population’s health but are less likely to travel.” Gross notes, “these approaches end up favoring the nations of the global North, which have the power and resources to shape infrastructure and policy in countries of the global South to protect themselves against rapidly spreading (rather than endemic) diseases, reproducing domination patterns typical of European colonialism.”57 Consider the resources spent on COVID-19 in sub-Saharan Africa versus those spent on



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water and sanitation, basic primary care, and non-COVID-19 diseases. For example, in 2020, 1.5 million people died of tuberculosis, 39 percent in sub-Saharan Africa,58 and 627,000 died of malaria, 96 percent in sub-Saharan Africa.59 In contrast to the rosy view of possibilities for “global health security with justice” under the leadership of the United States, which some US academics endorse,60 scholars from the global South have argued that global health security implies a deepening incursion into the sovereignty of national governments’ health policies and the potential for toxic synergies with autocratic national governments in the name of national security. Gonzalo Basile and colleagues argue that the logic underpinning global health security reductively simplifies the notion of “pandemic response” to the agenda of disease surveillance in the IHR and in turn normalizes the grotesque inequities in health capacities and status between nations.61 Further the global health security paradigm predetermines the universe of possible responses by governments and generates continuing dependency on aid and loans to mobilize those responses.

Human Rights, Development, and Global Health Justice: Evolving Institutional and Normative Architectures in the 2000s Human Rights–Based Approaches to Development: Health Systems Against the backdrop of the impact of the IFIs and their powerful member states on the development agenda, the UN attempted to reassert itself and reinsert human rights into at least one aspect of development: assistance. Under the 2003 UN Common Understanding on Development Assistance, assistance programs were to be based on and promote human rights principles of universality and inalienability, indivisibility, interdependence and interrelatedness, nondiscrimination and equality, participation and inclusion, accountability, and the rule of law.62 In 2005, Lynn Freedman and Ronald Waldman co-led the Millennium Task Force on MDG 4 and 5 (Child and Maternal Health) that set out the critical importance of human rights in achieving the MDGs.63 The task force emphasized the importance of health systems, which were widely perceived as being undermined by vertical programs.64 For example, with some exceptions, programs for the laboratories and treatment of HIV/AIDS were carried out in isolation from the rest of health systems infrastructure in countries across sub-Saharan Africa. That the emphasis on health systems came from Lynn Freedman, whose work focused on maternal mortality, was no surprise. In 1997, just as ARVs were being recognized as a life-or-death intervention, the UN’s Guidelines for Monitoring the Availability and Use of Obstetric Services was adopted,65 shifting

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maternal health programming from treating women as instrumental to children to making emergency obstetric care accessible without delay for every pregnant woman.66 As Elva’s death showed, preventing maternal death requires sexual and reproductive health rights (SRHR) broadly, including comprehensive sex education and laws to help women negotiate sex and protect themselves from violence. But it also requires a functioning health system, including emergency capacity and referrals, as well as access to contraception to prevent unwanted pregnancies. Just after the 2005 MDG Task Force report, Paul Hunt, the first UN Special Rapporteur on the Right to Health, called for a human rights campaign on maternal mortality in his 2006 report to the UN General Assembly, which explicitly grounded both the right to health and the prevention of maternal mortality in functioning and equitable health systems.67

Reframing Human Dignity: Disability Rights In the first decade of the millennium, categories of protected groups and norms were greatly expanded, including through the groundbreaking UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD, promulgated in 2007 and entering into force in record time in 2008,68 transformed frameworks of disability—physical, intellectual, and psychosocial—as human rights instruments had done for children’s and women’s rights earlier. The convention defined disability as resulting “from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.”69 Thus, the CRPD explicitly rejected the prevalent biomedical individualization of disability, recognized the social nature of disability itself as well as the penalty it produced, and called for measures to promote the full participation in society of persons living with disabilities. The implications of this understanding of disability are enormous for our understanding of what human dignity means, in health and far beyond. Consider Crispine, Elva’s father, whose cataracts would have been treated with a simple surgery elsewhere. It is not the fact of cataracts that defined the extent of his disability; it was the lack of access to a simple procedure that left him reduced to a hollow shell, spending most of his days sitting in a corner as his grandchildren and wife moved around him. But what if Crispine had had congenital blindness? Advancing the right to health cannot mean merely recovering the greatest possible degree of “species-typical functioning.” Rather, it requires modifying educational programs to ensure accessibility to knowledge for vision-impaired persons as well as creating a built environment in the way that public buildings



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and bathrooms and curb cuts are created for people with mobility impairments. If disability is socially constructed, persons with disability do not need to be “fixed”; the social order needs to be fixed.70 The Marrakesh Treaty, adopted in 2013, is a milestone in this regard, creating exceptions to traditional copyright law to enable states to provide books and other materials in accessible formats for visually impaired persons; notably, this important achievement for the rights of persons with visual disabilities was done through WIPO, not the WTO. 71 Just as with women’s health rights, taking disability rights seriously calls for dismantling legal norms and institutional practices based on harmful stereotypes about persons with physical, intellectual, and psychosocial impairments. For example, persons with disabilities were not originally included in UNAIDS and PEPFAR programs to combat HIV/AIDS because they were wrongly assumed to be asexual. HIV/AIDS programs across many countries continue to exclude people with disabilities today. Sometimes these discrimination and stereotyped assumptions entrenched in health governance are concealed under “neutral” indicators. For example, just as the CRPD was entering into force, the significance of health utility measures such as DALYs were being extended through IHME’s Global Burden of Disease estimates and adopted widely in mainstream public health planning. As Sudhir Anand, Fabienne Peter, and Amartya Sen point out, these measures impose a double penalty on persons with disabilities. DALYs and their counterpart, quality-adjusted life years (QALYs), devalue interventions for persons with disabilities, as their underlying life-years are already “discounted.”72 For example, an intervention to prolong the life of a blind person would not have the same value as the identical intervention provided to a person of “species-typical functioning.” These epistemic frames increase those asymmetries in power in global health that Abímbọ´lá referenced, in turn undermining the claims to equal dignity of persons with disabilities.

Reframing Sexuality: Rights Relating to Sexual Orientation and Gender Identity; International Law and Backlash In 2006, the nonbinding but very influential Yogyakarta Principles filled a gap left by the International Conference on Population and Development (ICPD) and other normative guidance regarding sexual orientation and gender identity (SOGI) rights. In 2017 an additional set of principles amended them. The Yogyakarta Principles signaled an imperative to protect LGBTQ+ populations from widespread stigma, violence, and discrimination in law and practice. However, they also challenged the idea of heteronormativity as part of an unquestionable

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natural order. Yogyakarta defined gender identity as “each person’s deeply felt internal and individual experience of gender, which may or may not correspond with the sex assigned at birth, including the personal sense of the body (which may involve, if freely chosen, modification of bodily appearance or function by medical, surgical or other means) and other expressions of gender, including dress, speech and mannerisms.”73 Queer theory regarding sexual orientation status and criminalization of consensual same-sex practices had been and remains critical to expanding SOGI rights, enabling us to see the unfinished and more fluid nature of gender expression and sexuality, which is deeply destabilizing to the traditional patriarchal family. In the 1990s, in the middle of the HIV/AIDS pandemic when homophobic furor raged and national opportunity structures were often closed, cases were brought to international tribunals to repeal discriminatory laws, just as they had been regarding women’s SRHR. In the 2000s, cases regarding SOGI rights proliferated in international tribunals. These cases were occurring in the context of political backlash to globalized norms. For example, in highly aid-dependent sub-Saharan African countries, one way to show independence from the colonialist West was to reject its moral values, such as LGBTQ+ rights, even while accepting donor priorities. Ironically, anti-sodomy laws had largely been propagated by colonialist regimes. However, displacing questions of accountability for structural economic policies onto moral economies proved an easy distraction. President Museveni in Uganda perfected this spectacle in his 2009 “Kill the Gays” bill, which created the new crime of aggravated homosexuality.74 Legislation restricting LGBTQ+ movements followed across much of eastern Africa. In reality, these “anti-imperialist” movements had deep connections to far-right anti-SRHR groups, such as the American Center for Law and Justice, Family Watch International, and Human Life International, which joined in a struggle against an invented “gender ideology.” Even though the MDG development agenda had been deliberately framed as apolitical, political spaces were occupied by battles over “culture.” This happened both at the national level, from Uganda to Peru, and at the international level. UN forums were increasingly marked by hostile confrontations. In 2004, when Paul Hunt, then UN Special Rapporteur on the Right to Health, addressed the UN General Assembly with a report on SRHR, one conservative group claimed his report was “part of a coordinated effort to push for homosexual, transsexual, and multi-partner sexual license, and unrestricted, government funded abortion.”75 Progressive SRHR groups had seen international law and forums as outside of



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domestic power politics and sought to use them to extend equality and combat gender discrimination in health and beyond. Conservative groups not only brought politics directly to UN forums through legal and political mobilization against SRHR; they promoted the view that international law was generally undemocratic and illegitimate.

Proliferating Normative Guidance: Further Elaboration of the Right to Health During the 2000s there was an exponential proliferation of normative guidance and procedures at international level. Treaty-monitoring bodies (TMBs) set out more and increasingly detailed interpretive guidance of provisions of treaties; so-called Special Procedures, including special rapporteurs, independent experts, and working groups, greatly increased in number. Paul Hunt, a law professor from the University of Essex in the UK, was named the first Special Rapporteur on the Right to Health in 2001. By the end of the decade, thirtynine Special Procedures had been created, with thirteen new mandate-holders in 2010 alone.76 In 2010 alone, Special Procedures representatives carried out 67 visits to 48 countries and territories; submitted 156 reports to the UN Human Rights Council, including 58 country visit reports; submitted 26 reports to the UN General Assembly; and issued 232 public statements and 604 separate written communications to 110 different states.77 The rapid growth of human rights norms and procedures required an expanded bureaucracy, but the Office of the High Commissioner for Human Rights was chronically underfunded and overstretched. The burgeoning machinery of “Human Rights officialdom” also depended on and encouraged a professionalization of human rights advocates and advocacy organizations. A premium was placed on specialized training in university human rights programs. International NGOs, with access to greater funding sources, started establishing regional offices, which in some cases attracted human and financial resources away from local groups. Rapid expansion of norms had the inevitable effect of fragmentation. International human rights law has no highest authority to sort out competing interpretations, as a high court does within a country. By 2006 the International Law Commission felt the need to publish Fragmentation of International Law: Difficulties Arising from Diversification and Expansion of International Law, in which it stated, “The presumption against normative conflicts . . . [implied that] attempts should be made to read them as compatible” insofar as possible, including when they do not specify any relationship.78

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Health-related rights were a major site of normative proliferation during this period. In 1996, the UN Committee on the Elimination of Racial Discrimination (CERD) had issued a General Recommendation on Article 5 of the Convention on the Elimination of All Forms of Racial Discrimination, which addressed public health and medical care.79 The Committee on the Rights of the Child also issued general comments that touched on various dimensions of children’s health.80 The CEDAW Committee had issued a general recommendation on “Women and Health” in 1999, which followed other narrower recommendations on aspects of women’s health and took up and elaborated on many of the ideas that had been set out in Cairo and Beijing.81 In August of 2000, the UN Committee on ESC Rights issued General Comment 14: The Right to the Highest Attainable Standard of Health, updating important aspects of Article 12 of the UN Covenant on ESC Rights, which contained the core formulation of the right to health under international law. For example, in 1966 when the covenant was adopted, reproductive health was not even mentioned in the treaty. General Comment 14 included analytical frameworks that had begun to be used across TMBs. For instance, the AAAQ framework stated that the right to health required that health facilities, goods, and services be available, accessible, acceptable, and of adequate quality.82 The CEDAW Committee had earlier elaborated AAAQ in the context of women’s health, noting just after the eruption of Peru’s sterilization scandal that “acceptable services [must be] delivered in a way that ensures that a woman gives her fully informed consent, respects her dignity, guarantees her confidentiality, and is sensitive to her needs and perspectives.”83 A second framework used in General Comment 14, as well as in other general comments, was “respect, protect, fulfill,” which went far toward eroding the fallacious negative-versus-positive distinctions between CP and ESC rights. General Comment 14 set out that health, like all rights—CP as well as ESC—entails obligations by States Parties to respect by refraining from direct infringement (such as de jure discrimination); protect against third-party interference (domestic violence, pollution by private actors); and fulfill through positive legislative and other measures (extending health care or sanitary measures). In previous chapters, we have discussed the importance of recognizing and distinguishing between: (1) the notion that health is both inherently tied to dignity, subject to social influence, and susceptible to a broad array of economic and political policies; and (2) the right to health, which includes both public health preconditions and care, and is interdependent on many other rights. However,



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General Comment 14 asserted that the right to health was “an inclusive right”, comprising not just care but “the underlying determinants of health, such as access to safe and potable water and adequate sanitation, an adequate supply of safe food, nutrition and housing, healthy occupational and environmental conditions, and access to health-related education and information, including sexual and reproductive health.”84 As John Tobin notes, the wording in General Comment 14 left hazy the boundaries of the right to health vis-à-vis other rights (such as food, housing) that are of equal significance to a life of dignity.85 It left equally hazy the duty-bearers at national and subnational levels for such a varied and expansive list of obligations. With General Comment 14, the committee abandoned any approximation of a minimum threshold, as it had set out in General Comment 3. Instead, it set out “basic obligations” and “obligations of comparable priority,” which included items as diverse as essential medicines and health and human rights education for providers.86 Multiple scholars have offered critiques of the core obligations in General Comment 14, which I generally share. These include (1) the vagueness inherent in many of the terms; (2) the scope of theoretically “nonderogable” obligations, as opposed to the prima facie presumption established in General Comment 3—which was later changed back; (3) the unclear relationship between “core obligations” and those of “comparable priority”; and (4) the ill-defined obligations of “international assistance and cooperation.” Most important, Tobin asserts, is that the list “simply does not offer a principled, practical or coherent rationale.”87 Of course, it is entirely appropriate that General Comment 14 updated General Comment 3 regarding “essential primary care” as the threshold necessary to provide a raison d’être for the right to health. General comments are supposed to update the terms of treaties as well as earlier statements in light of changing realities. For example, by the year 2000 we had a much better idea of the intersectional and gendered aspects of health system design, from financing to referral networks that go beyond “primary health care services.” There are a multiplicity of other approaches to reframing a country’s immediate obligations. However, the basic obligations in General Comment 14 undermined the critical normative distinction between immediate obligations to ensure core content and the “specific and continuing obligation[s] to move as expeditiously and effectively as possible towards the full realization of article 12.”88 Moreover, given the detailed policy guidance in General Comment 14, progressive realization is cast as a set of prescriptions toward the end point of “full realization,” as opposed to the more

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dynamic, constant evolution linked to deliberative processes in high-income and low-income countries alike that we discussed in earlier chapters. This is problematic. As Norman Daniels notes, “[health] rights are not moral fruits that spring up from bare earth, fully ripened, without cultivation.”89 At a national level, the Constitutional Court of South Africa rejected the notion of a minimum core in the PMTCT case, instead seeing it as an aspect of reasonableness review. National courts that have adopted a minimum core have done so based on national social insurance schemes and other criteria. The UN Committee on ESC Rights has refined its normative guidance on the right to health, in particular through its important General Comment 22 (2016) on Sexual and Reproductive Health.90 Further, the COVID-19 pandemic laid bare that “core” obligations must be anchored in fair infrastructures of provision if they are to be more than hollow legal promises.

Global Health Justice 91 The HIV/AIDS pandemic in southern Africa acutely raised the problem of global health justice, which is at the center of understanding what happened in the COVID-19 pandemic as well. In a given country, where everyone is in theory an equal member of the polity, inequalities in health are unjust if they result from avoidably unfair distributions of socially controllable factors. Of course, as the pandemic made starkly apparent, there are heated debates about what is avoidably unfair and what factors are or should be socially controllable, as well as debates about the normative legitimacy of different forms of social control. That is why we require spaces for deliberation and participation in health policy-making. Yet this does not necessarily tell us when international inequalities arising during or prior to the pandemic are injustices. These inequalities stem from three overlapping but nonetheless distinct sources. First, domestic injustices create inequalities between as well as within countries: legislative, regulatory, and implementation gaps that fail to deliver access to health-related goods and services; political culture/lack of political accountability for rampant leakage; and corruption or wanton indifference to the suffering of the entire population or specific groups. Consider the South African government’s initial denial of broader access to ARVs. Second, there are “norms, policies, and practices that arise from transnational interaction,” which the Lancet-Oslo Commission on Global Governance for Health termed “political determinants of health.”92 The story of HIV/AIDS in southern Africa cannot be understood without considering the many political determinants of health we have noted in these pages: debt accumulated because of events beyond sovereign control; waves of austerity and structural adjustment;



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TRIPS and other bilateral trade agreements that establish monopolies on scientific knowledge; and global governance arrangements. Finally, both domestic and global factors are framed by the chains of history and especially varied expressions of colonialism and coloniality, from slavery to apartheid, and the accompanying stereotyped views about people’s capabilities to manage health systems, manufacture medical countermeasures and follow medication regimens. As we will discuss further in Chapter 7, the ways in which we understand global health injustices and the interactions among these sources of inequality are invariably reflected in distinct proposals for promoting global health justice and the role of human rights in doing so. Some scholars focus on interstate technical and financial assistance to enhance domestic resources and capacities in lowerincome countries.93 Along with other scholars and practitioners, I understand the imperative differently. Justice in global public health certainly requires more global solidarity in financing and technical assistance, but it also calls for remaking the aid system and unshackling the constraints on low- and middle-income countries that perpetuate the dependencies we have discussed throughout this book. Lessons from HIV/AIDS also tell us that a starting place for promoting fairness in global health, as well as effective enjoyment of health rights, must be deconstructing the barriers to democratization of health information that lie in the architecture of knowledge production in global health.

In the spring of 2013, I participated in a session at the UN Palais des Nations in Geneva on the measurement of progress in gender equality and poverty alleviation under the MDGs. Most of the delegates who spoke chose to highlight their country’s successes, citing statistical indicators monitored in the MDGs. Reading a transcript of the session might lead one to believe that as a result of the MDGs the global blights of poverty and patriarchal domination were fading into historical footnotes. A few weeks after the session, I was in Neno, Malawi, where I interviewed Pauline and Crispine about Elva’s death. I flew into Blantyre, stopping at the district hospital to which Elva had been taken, and then drove to Neno on the same road Pauline had taken Elva on. At the time, the capital of Neno District was essentially one dirt road dotted with international NGOs that had set up camp to help Malawi meet the MDGs. The next morning, I found myself wrapping a chitenje cloth around my waist as a skirt and crawling on my knees up a gravelly incline to the house of the paramount chief—the highest traditional leader of a chiefdom community—in

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order to obtain approval to conduct interviews. The control of women’s appearances, including the use of these colorful long cloths as skirts, as opposed to the traditional bark cloths, was dictated under British Colonial rule, and distinct chitenjes had come to signify identity and status. To me the wearing of a specific chitenje and the show of obeisance to the chief meant little because I had not grown up with the layered gender scripts they encoded. But to the women who lived in the community, as Pauline did and Elva had, these intricate rituals shaped their identities and were passed from generation to generation. Even in what may seem a remote area of the world, it is not possible to imagine a local lived reality as unrelated to the global order, shaped by entangled histories of privilege and exploitation. As we have seen from Argentina to Mexico to Peru to southern Africa, to deploy human rights to advance health and social justice, it is imperative to understand, and make visible, the recursive relationships between the global and the local. Identifying the dissonance in perspectives and agendas is an essential entry point to effective advocacy and coalition-building: the divergent understandings of advancing gender and social justice evinced at the Palais de Nations, the missions of the international development NGOs in Neno, the stated political aspirations of national leaders, and the voices of those, like Elva, who are literally forced to embody injustice. The intersecting problems that we face—from health to climate change—all raise issues of global justice and require linking global and local strategies. When cyclone Ana tore through the southern districts of Malawi in 2022, leaving a trail of damage and making countless families homeless and desperate for food, clean water, and shelter as well as medical care, I thought of Pauline, Crispine, and the children I had met, of how they had no cushion, no stock of extra food, no insurance against the ravages of such a disaster. Ana was the second “once-in-a century” cyclone to hit Malawi (and neighboring countries) in three years, even though Malawi is a hardly contributor to climate change. Climate volatility, just like economic volatility, is an artifact of a global institutionalized order based on financialized capitalism and ecological extractivism; the poorest people in the world are already suffering the consequences. In Malawi’s much larger neighbor, South Africa, the golden straightjacket performed as it had elsewhere, accelerating growth but delivering the benefits to the wealthiest. Moreover, by 2018, when Jacob Zuma was forced from office after unprecedented corruption scandals, politics in South Africa had become performative in public and transactional in private. As usual, however, the “beast” within the state was fed by other hands. It turned out that Bain & Co. as well



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as KPMG had facilitated the seeping of corruption into revenue collection and practically every aspect of South African society.94 By the time the COVID-19 pandemic hit, much of society had grown cynical about the democratic institutions in which they had placed such tremendous hope. But in South Africa, I also found reason to believe we can rise to the challenges of today, just as HIV/AIDS activists rose to the challenges they faced at the turn of the twentieth-first century. In the year before the pandemic, I participated in an inspiring Activist Leadership School with Mark Heywood at Section 27 (formerly the AIDS Law Project). By that time, an array of civil society groups, including TAC and Section 27, were mobilizing around tax justice; privatization of services, including those for people with psychosocial disabilities; and, importantly, the connections between national economic and health realities and such issues as dependence on mining, the ravaging of human and environmental health, and the reigning neoliberal economic order. Throughout the pandemic, civil society continued to work at the international level pushing for a meaningful TRIPS waiver, including through the People’s Vaccine Alliance, an advocacy network that extended around the globe, seeking to change the global narrative on access to COVID-19 vaccines, diagnostics and treatments, just as HIV/AIDS activists had done years before. Perhaps more than any other example in global health and rights, the use of human rights strategies in the face of the deadly HIV/AIDS pandemic in southern Africa demonstrated that ordinary people could change the narratives they had been told about themselves and act collectively to challenge the power of governments, transnational pharmaceutical companies, and intergovernmental institutions. Just as in the antiapartheid struggle, what once seemed impossible suddenly was not. Coming out of the COVID-19 pandemic and looking forward to the intersecting challenges we now face, we will need to find our own creative militancies that allow work across borders and across epistemologies. The most important source of human rights consciousness and energy, however, is still—and always will be—the diverse people who have been affected by, and collectively struggle against, what Paul Farmer called pathologies of power.95

Chap te r S ix

Inequality, Democracy, and Health Rights [M]aternal deaths can no longer be explained away by fate, by divine purpose or as something that is predetermined to happen and beyond human control . . . when governments fail to take the appropriate preventive measures, that failure violates women’s human rights. —Rebecca Cook1 Social justice is a matter of life and death. It affects the way people live, their consequent chance of illness, and their risk of premature death. —WHO Commission on Social Determinants of Health2

IN A U G UST OF 2 0 15, the neonatal intensive care unit in the Hospital Géral de Nova Igaçu was filled with incubators, all occupied by babies who had been born prematurely with neonatal complications. The postpartum wards in this public hospital outside of Río de Janeiro were lined with women who had just had cesarean sections. The premature births and C-sections are related, as cesareans are associated with placental problems that lead to premature labor in future pregnancies. Moreover, they are a major abdominal surgery that entails possible complications, including infection, blood loss, hysterectomy, and even death.3 At the time, Brazil had the highest cesarean rate in the world: 88 percent in the private sector, where 30 percent of deliveries were performed, and 46 percent in the public sector.4 Based on the best available evidence, the WHO calls for Csection rates of 5 to 15 percent. The extreme overuse of cesarean surgeries revealed systemic problems as well as gender-based discrimination, just as their absence did in Elva’s case in Malawi in Chapter 5. As discussed in Chapter 3 in the context of the Symbolic Tribunal in Mexico, by 2015 not just disrespect and abuse but the pathologization of natural reproductive processes and overmedicalization of childbirth had been conceptualized as “obstetric violence.”5

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I was at Nova Igaçu with a Brazilian colleague and physician, Sandra Valongueiro, because Alyne da Silva Pimentel had died there in 2002 and her death had become a landmark case under international law in 2011, establishing an affirmative right to maternal health care in that year.6 Despite CEDAW Committee calling government compliance formally complete, at the invitation of the Brazilian government we went to Brazil to catalyze political engagement around implementation of the structural recommendations. In 2015, the UN Committee on ESC Rights had yet to implement a formal follow-up procedure for its judgments, and those of other treaty-monitoring bodies (TMBs), including the CEDAW Committee, had been critiqued for lacking resources and capacity.7 As Victor Abramovich notes, effective implementation of structural remedies by supranational tribunals calls for reengaging domestic actors, including national agencies, judiciaries, national human rights institutions, and civil society actors.8 Moving from the global to the national level, from the legal and adversarial to the political and deliberative realm, from law on the books to law in action, is exactly what our follow-up mission was about. We were in Brazil to encourage local actors to figure out how to measure implementation of the Alyne decision and to advance rights related to maternal health. Alyne was 28 and barely six and a half months pregnant when she went into labor and delivered a stillborn fetus at a private health center in Belford Roxo in 2002. She had to wait until the next day to undergo surgery to remove retained tissue. Afterward, Alyne’s condition deteriorated, though her family’s concerns were dismissed just as Mamérita Mestanza’s had been as we saw in Chapter 4. A few days later, Alyne needed a blood transfusion because she had been hemorrhaging internally. The only hospital that would accept her refused to use its ambulance for her transfer. Because so many patients are booked in advance for cesareans in Brazil, women who want natural births or need other maternal care routinely encounter long waits to find free beds. In this case, the delay was a death sentence. Alyne’s family did not have money for a private ambulance, so they waited eight hours before she was finally taken to a hospital, which turned out not to have a bed for her. Alyne died at the Hospital Géral de Nova Igaçu five days after she had gone to Belford Roxo complaining of nausea and abdominal pain. In 2008, the Center for Reproductive Rights (CRR) and a Brazilian NGO, Advocacia Cidadã Pelos Direitos Humanos (which subsequently closed), brought Alyne’s case to the CEDAW Committee under the Optional Protocol, which had just entered into force. In 2011, the committee’s findings established important precedents in international law. For the first time, a supranational tribunal (1)

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enforced a state’s obligations to ensure affirmative entitlements to emergency obstetric care as a matter of nondiscrimination against women; (2) explicated intersectional discrimination on the basis of race, gender, and poverty in a concrete case; and (3) elaborated duties to regulate private actors in the health sector as part of a state’s duty to protect women’s rights to health and life.9 This chapter places the Alyne case in the context of the three original challenges I set out in the Introduction relating to health and ESC rights advancement. By the second decade of the millennium, we had shown that health rights were legally enforceable rights and not mere programmatic aspirations. Judicial enforcement had gone far beyond affirmative entitlements to HIV treatment to include treatments for a wide variety of conditions. However, in Brazil and Latin America more broadly, where tens of thousands of protection writs were being brought to courts by individuals every year, the enforceable right to health was portrayed very differently than it had been in South Africa. Second, we had advanced significantly in defining what governments were required to do to apply human rights obligations in health policy-making and programming, particularly in maternal health. The Alyne case was also precedent-setting in the deployment of a human rights−based approach to health (HRBA) to evaluate implementation of a supranational decision with the intent of catalyzing local action, structuring an analysis that examined every stage of the policy cycle. Nevertheless, these advances were being struck against a background of ballooning inequality and weakened state capacity. In the first section, the chapter examines policy responses to the 2008 economic crisis and the challenges of extreme inequality, exacerbated by increasing financialization, that were affecting not just health but also democratic governance. Extreme inequality frays social cohesion and separates those who make policy from those who live with those policies. Brazil had long been a society with profound structural inequalities. With a national government that was seen as indifferent to massive human suffering, and largely captured by elites, the charismatic Luis Inácio “Lula” da Silva, founder of the Brazilian Workers’ Party, was elected president in 2002. The Workers’ Party had emerged out of social movements, and Lula drew on their proposals as well as support. But by the time of COVID-19, corruption scandals and political dysfunction had unraveled support for the Workers’ Party and Brazil had elected a staunchly conservative, populist president, Jair Bolsonaro, who quickly set about dismantling efforts to reduce social inequality, including gender inequality. After a tumultuous four years Lula was re-elected in 2022, and the chapter focuses on the entanglement of rights realization with political realities.

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Second, the chapter explores the development and application of HRBAs to health. By 2011, when the CEDAW Committee issued its findings in the Alyne case, we had come a long way from when human rights violations relating to reproductive health were confined to abuses that had taken place in the ex-ESMA in Argentina or even the coercive sterilizations in Peru. The Alyne case was the result of many years of parallel and synergistic work in human rights and public health. As Rebecca Cook notes, the case changed our understanding of “human rights as abstract and aspirational to obligatory and concrete,”10 which had been unthinkable just two decades before. In the latter half of the Millennium Development Goals (MDGs), human rights activists advanced intergovernmental understanding of HRBAs to health, among other things, as a Trojan horse to insert rights issues into the narrow approaches to health that the MDGs were promoting. However, ongoing contestation about HRBAs reflected different ideas of how human rights function to achieve social change. The third section of the chapter goes on to describe some key insights into the possibilities and challenges of judicial enforcement of health rights. By the end of the 2000s, several apex courts in the region and beyond had begun to experiment with structural ways to promote dialogue with the political organs of government, as we saw in the Treatment Action Campaign for the prevention of mother to child transmission of HIV (TAC PMTCT) case in South Africa in Chapter 5. Briefly reviewing a case involving environmental pollution in Argentina and another calling for significant restructuring of the Colombian health system, I argue that such approaches promise to shift public discourses and political action around health. At the same time, significant challenges to systemic change call for greater reflection on how judicialization functions in societies with steep power asymmetries. Ultimately, this chapter underscores that advancing health rights cannot be separated from meaningfully democratic processes and institutions that can be held accountable to people whose lives are affected. Reframing health in terms of human rights and justice is not sufficient without building political power for ordinary people and state capacity to respond to their demands for accountability.

Inequality, Financialization, and Austerity: Implications for Health and Democracy A Global Financial Crisis, Sweeping Austerity, and National Capacities for Response From the early 1980s to 2008, the top 10 percent of the US population received 100 percent of the benefits from economic growth, seeing their incomes rise

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while the bottom 90 percent saw theirs fall.11 The top 1 percent had increased their share of income by over 60 percent. Why and how did this happen? It is true that wage inequality ballooned in certain industries as unions were decimated. For example, in 1979 chief executive officers (CEOs) of the most successful US businesses earned on average thirty times as much as their workers. By 2013, that figure had changed to three hundred times.12 But that is not the whole story; both Brazil and the US, and elsewhere, were subject to the continuing shift from production to financialization. When returns on investments greatly exceed wage growth, income inequality expands. In the 2000s, financialization was boosted exponentially by digital technology together with a lack of regulation. An ever-greater share of national economies and the global economy was driven and controlled by financial sectors, affecting commodity prices and supply chains. At the same time as it increased inequality, financialization exacerbated the privatization of wealth because for decades capital gains, carried interest, and the like, had been subject to differing tax regimes and often escaped virtually all taxation, which is the mechanism states use to provide for the common good. If the 2008 global financial crisis began with the bursting of the housing bubble in America, it spread across the world with lightning speed as commodity and other markets and the functioning of supply chains were all inextricably entangled.13 By 2009 it was the worst economic crisis since the Great Depression in the 1930s. In the US, after a giant bailout of banks deemed “too big to fail,” it was the poor and middle class, whose wealth was tied to wages and their equity in homes, who saw their wealth wiped out; the top 10 percent, whose wealth was based on capital markets, recovered quickly. Moreover, in the wake of the crisis—unlike the United States—indebted countries in the global South were largely unable to use monetary and fiscal policy to address their national collapse because of strictures on containing inflation controlling exchange rates and reducing spending imposed by banks and international financial institutions (IFIs). As a result, in the ten years following the crash, measures promoting austerity—or “fiscal consolidation” as it was rebranded—were enacted across two-thirds of the countries in the world.14 Initially, the Brazilian economy seemed to be weathering the 2008 global financial crisis due to a commodities boom, and Lula’s administration appeared to offer an alternative to global trends in austerity that were spreading around the globe. day. In 2003, when Lula took office, 25 percent of the population lived below the line, but by 2009 only approximately 11 percent were officially poor.15

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Lula implemented immensely popular programs that were often responses to years of organizing by ordinary people asserting collective proposals and building collective power, such as the Brazilian land rights movement. These programs included Bolsa Familia, a conditional cash transfer program for poor people such as Alyne da Silva, as well as an ambitious campaign against hunger. Lula’s administration was plagued by corruption charges, but it increased minimum wages in areas such as construction and gave hundreds of thousands of now formally employed workers (disproportionately men) more power to negotiate. Lula reduced dependency on IFIs by paying off debt, made Brazil an important creditor nation, and stressed the need to establish an international democratic economic order. His administration sought to strengthen the influence of regional blocs (such as the Union of South American Nations, or UNASUR,), and it increased trade with Africa. Lula came to be viewed globally as one of the architects of changing global power dynamics, strengthening the clout of the so-called BRICS countries (Brazil, India, China, and South Africa). In 2010, he was named one of most influential leaders in the world by Time magazine.16 In 2012, as a result of planning under Lula and his handpicked successor, Dilma Rousseff, the United Nations Conference on Sustainable Development (Río+20) was held in Río, as a follow-up to the 1992 UN environment conference discussed in in Chapter 3. In turn, Rio+20 created a process that led to Agenda 2030 and the Sustainable Development Goals (SDGs), which succeeded the MDGs and would wrest power over the development agenda from the club of rich donor countries, handing it to a broader group of states. Lula’s tenure seemed to illustrate that tolerating poverty was a political choice that could be remedied through elections, and that was no doubt true to some extent. However, much of the “Brazilian miracle” has come to be questioned, as economists have pointed out that while social programs and increased wages had shrunk poverty, wealth inequality—including investment wealth—between rich and poor grew as well, widening the gap between the top 10 percent and the bottom 90 percent and that between the top 1 percent and everyone else. Without major tax reform to redistribute wealth, Lula’s social programs did little to address the structural inequality in Brazil, which put Afro-descendant women such as Alyne da Silva at the bottom. Indeed, cuts to food security programs in 2017 undid much of Lula’s antihunger achievements over the past decade, with disproportionate impacts on Afro-descendants and other disadvantaged groups. Before the former socialist was elected, because perceived “Lula risk” was affecting foreign investor confidence, Lula was forced to sign an extraordinary

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Carta ao povo brasileiro (Letter to the Brazilian People), in which he promised not to do anything to upset foreign markets and investments if he won the election.17

Inequality, Health, and Democracy The 2008 global crash occurred just as a groundbreaking report was released by the WHO Commission on Social Determinants of Health which reframed health equities as the starting place to formulate policy rather than as something to address after aggregate health advances were achieved. The report synthesized a multitude of studies using a variety of methodologies and demonstrated the overwhelming importance to health of the “conditions in which people are born, grow, live, work, and age”—precisely the conditions affected by the enjoyment of human rights.18 As we have seen throughout these pages, austerity affects population health in myriad ways. Among these, one way is through the health care system itself: wage cuts/layoffs of health personnel, increasing co-pays and out-of-pocket expenses, decreasing benefit packages and changing eligibility criteria, disrupting access to insurance, and applying cuts to mental health, reproductive health, and other services that have an impact on excluded communities. A second mechanism is through cuts to environmental protection and water/sanitation infrastructure/ safety, which affects the preconditions for health. A third way is by restricting rights that closely relate to health through cuts to education subsidies, reduced food assistance and food security programs, and reduced funding for temporary housing/shelter and housing subsidies. A fourth way is through redefining the scope of “deserving” people and levels of support through reduced social protection and tightening parameters for targeted social programs.19 These all implicate social determinants of health. If human rights work over the last few decades had shown how certain people are kept low on the social ladder as a result of intersectional discrimination, stigma, and other forms of marginalization, the report of the WHO Commission on the Social Determinants of Health strongly reinforced earlier reports showing how the social gradient in wealth itself affected health. Economic inequalities tend to be reinforced by urban-rural, education, race, and gender inequalities, as evidenced in the Alyne case. A burgeoning literature in social epidemiology had made it increasingly evident since the 1980s that steep inequalities were bad for health in a multitude of ways.20 One highly influential study found that the “pernicious effects that inequality has on societies: eroding trust, increasing anxiety and illness, [and] encouraging excessive consumption” held true not just among those who were deprived but also among the wealthy.21 Nonetheless, neither the erosion of social

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cohesion and trust, which proved deadly during the pandemic, nor a turn toward insular civic privatism, encouraged by digital realities and consumerism, were considered by all scholars as relevant to debates about the appropriate measure of inequality and why we should care. Agenda 2030, which emerged from the conference on sustainable development in Río de Janeiro in 2012, was meant to provide a way forward in global health and development more generally, taking stock of and building on the MDGs. The Sustainable Development Goals (SDGs) announced in 2016 provided a universal framework—like that for human rights—and it explicitly focused on inequality not just poverty. In the negotiation of SDG indicators, prominent figures such as Michael Doyle, former assistant UN secretary-general, and Joseph Stiglitz, 2001 Nobel laureate in economics, weighed in on measures of inequality, arguing for the Palma Index, which compares shares of wealth controlled at the top and bottom of the social pyramid,22 but this was not the measure adopted. Instead, the World Bank preempted open debate early on and ensured that the measure of inequality would be given the euphemistic moniker “Shared Prosperity”—calculated by the “growth rates of household expenditure or income per capita among the bottom 40 percent of the population and the total population,” with the target being the bottom 40 percent exceeding the average.23 Shared prosperity is useful to creating incentives for pro-poor growth, just as occurred in Brazil. Nonetheless, as Sakiko Fukuda-Parr asserts, it does not affect the antidemocratic extremes; it does nothing to redistribute ballooning private wealth at the top for the common good.24 This distinction matters for measuring progress in the world: it reflects the difference between pretending that people have been “left behind” by development paradigms in the past and acknowledging, as Duncan Kennedy asserts, that in reality they have been “defeated.”25 The seemingly technical question of the inequality measure shapes understanding of where the solution to inequality lies. The choice of the Shared Prosperity metric over the Palma Index aligned with the use of private investment and so-called blended finance to implement the SDGs26—making countries more investor-friendly, not imposing more regulation and taxes—which foreseeably would exacerbate extreme inequality. As Brazil shows, extreme poverty can be reduced without reducing structural inequality. The fundamentally unequal structures in Brazilian society, which were not tackled through tax reform and were exacerbated by financialization, meant that by 2018 six individual Brazilians had as much wealth as the poorest one-half of the population.27 The way we measure inequality reflects why we care about it, which matters a great deal from a human rights perspective. Is a right to health (and other

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ESC rights) merely a sufficiency guarantee for the poor? Or, as I have suggested throughout these pages, is the enjoyment of human rights, including health, linked to democracy and to questions about who legitimately exercises what kind of power over whom? Since the philosophers of ancient Greece, scholars have warned that great wealth inequality is fatal to democracy. Wealthy elites interact less with ordinary citizens and begin to believe they are more capable of governing. The Argentine dictatorship had held this view of the “masses,” and apartheid had institutionalized separation based on race and class in South Africa. However, extreme wealth inequality can achieve the same effect in an electoral democracy. As we have discussed, the epistemic value of democracy lies not in the official form of government. Mexico under seven plus decades of the Partido Revolucionario Institucional (PRI; Institutional Revolutionary Party) in the early 1990s was a “democracy”—as was Fujimori’s Peru, and Jacob Zuma’s South Africa to name a few. We value democracy because it allows ordinary people to have a say in governing themselves on the basis of political equality—including with respect to decisions affecting health and well-being. This robust understanding of democracy requires not merely keeping diverse groups apart through civil liberties protections but continually bringing them together in mutually humanizing interaction through democratic deliberation.28 However, the necessary conditions for democratic institutional arrangements fundamental to advancing health and other rights cannot be achieved when there is an increasing gap between elites and the general public; between those who make laws and policies and those who have to live by them. By the second decade of the 2000s, elites in many countries of the North and South, including politicians, were largely buying their way out of public education, public health systems, public transport. The literal public spaces in which people might gather to protest, as well as socialize and play sports, were being privatized. The renowned Brazilian modernist landscape architect Roberto Burle Marx famously preferred to design public spaces because they were necessary “to provide dignity for the people”; when I was in Brazil in 2015, stretches of his iconic black-andwhite mosaic sidewalks along Copacabana Beach were still public spaces for promenading. But by the end of 2015, the private corporation Facebook (now Meta) had become the “global public square” in digital reality and in physical reality Río, just like the rest of Brazil, was staggeringly segregated by race and class. Wealthy Brazilians, largely of European and Asian descent, lived in posh areas with extremely high security, while the poor—Afro-descendants and others

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of mixed race—were amassed in favelas, slums that often lacked piped water and basic sanitation. Within months of my visit, the Zika outbreak occurred. Impoverished women and girls who lived in favelas and other slums with standing water, who had difficulty accessing contraception and negotiating sexual relations with their partners, were told to wear mosquito repellant and, if bitten, to avoid getting pregnant. If they did get pregnant, they could not obtain abortions under Brazilian law. The initial Zika response from Brazil and other governments, which discursively transformed blatant political failures into personal responsibilities of poor, powerless women, was exactly what HRBAs to health were intended to combat.29

Human Rights–Based Approaches to Health Get Defined Actors and Coalitions When the UN outlined its human rights−based approach to development in 2003, then UN High Commissioner for Human Rights Navanethem Pillay encouraged incorporating rights “into the implementation of programmes as a mechanism for making rights easier to claim and understand, and thereby be more effective.”30 In women’s health, the call for human rights−based approaches to development, with their focus on rule of law, accountability, non-discrimination and participation, was particularly welcome. By the midpoint of the MDGs, advocates had become increasingly aware of the adverse consequences of the depoliticization of sexual and reproductive health rights (SRHRs) in MDG 5: the vertical approaches to care delivery that failed to build health systems or address social determinants of diverse women’s risks. Even as many feminist groups distanced themselves from the MDGs, new alliances and coalitions were formed, and maternal health became a space to advance health as an ESC right as well as an SRHR. In 2007, the largest human rights NGO in the world, Amnesty International, launched the Demand Dignity campaign, enlarging its traditional mandate from a narrow slice of CP rights to ESC rights; in health, the campaign focused on maternal health. In the same year, the International Initiative on Maternal Mortality and Human Rights (IIMMHR) was launched, which brought together human rights and SRHR advocacy groups from across the world and health service delivery groups. The IIMMHR mandate, which would have been unimaginable even a decade earlier, among other things sought to promote understanding that “maternal death can be as much a human rights violation as extrajudicial executions, torture, and arbitrary detentions.”31

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Paul Hunt, the first UN Special Rapporteur on the Right to Health, was pivotal in galvanizing support for a human rights–based approach in relation to maternal health at the UN Human Rights Council. The convergence of Hunt’s leadership, institutional support, and the fundamental role of civil society, including the IIMMHR, led to a series of Human Rights Council resolutions in 2009, 2010, and 2011 calling for the Office of the High Commissioner for Human Rights (OHCHR) to report on links between maternal mortality and human rights, to outline best practices, and finally to provide “concise technical guidance on the application of a human rights−based approach to the implementation of policies and programmes to reduce preventable maternal mortality and morbidity.”32

Frameworks Define Rights and Rights-Holders in HRBAs: SRHR versus RMNCH The Human Rights Council’s 2012 Technical Guidance, for which I served as lead consultant and drafter, was the first inter-governmentally approved statement setting out an HRBA for any health issue. Although it was called a “technical guidance” to cloak it in some expert authority, the real aim, as I saw it, was to move from the adversarial to the policy-making domain by articulating what measures were appropriate for states to adopt at every stage of the policy cycle rather than merely signaling violations. As such, there were several elements that were essential in the elaboration of a human rights−based approach: (1) placing maternal health in the context of SRHR and reproductive justice; (2) establishing key definitional issues distinguishing an HRBA from conventional approaches to health; and (3) fostering deliberation of local actors over the contours and content of health rights in practice. First, the Technical Guidance embedded maternal health in a broader SRHR framework as opposed to the continuum-of-care approach based on reproductive, maternal, newborn, and child health (RMNCH), which had been institutionalized in the MDGs in the Partnership for Maternal Newborn and Child Health (PMNCH).33 Despite highlighting the need for continuity of care, which is aligned with the need for a referral network, the RMNCH framework was a step backward, reducing women to their reproductive intentions and capacities rather than treating them as individuals with agency over their bodies and lives, as had been the central message in the International Conference on Population and Development (ICPD). SRHR versus RMNCH was a red line because it would foreseeably trigger a cascade of implications for how the health and rights of women and pregnancy-capable people would be institutionalized. We saw in Chapter 4 how Peru’s adoption of

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a maternal health imperative had nothing to do with respecting the SRHR choices of women like Pabla. In Brazil, the follow-up mission found that the government had taken an extraordinary number of measures regarding maternal mortality to achieve MDG 5, including adopting a national policy on sexual rights and reproductive rights. Nevertheless, the central initiative and strategy for reducing maternal mortality and morbidity was the Rede Cegonha (Stork Network), which adopted an approach based on RMNCH. On our follow-up mission after the Alyne decision, in 2015, we found that the instrumentalization of women generated through this RMNCH approach was exacerbated by the Brazilian health system’s extreme medicalization of reproduction. Women were thingified, their dignity denied, and their bodies treated as no more than fields on which to operate. The untrammeled power of physicians to control women’s delivery processes resulted not just in increased cesarean sections but also in other intrusive interventions (for example, the overuse of fundal pressure and oxytocin to accelerate contractions).34

Clarifying What Applying Human Rights to Health Means and Why It Matters The second major aim of the Technical Guidance was to demonstrate that international legal standards on the right to health and related rights could be translated into principled policy guidance, which implied four key points. First, the Technical Guidance established a human rights−based approach to health, applied in the context of reducing preventable maternal morbidity and mortality. That is, in contrast to the biomedical paradigm, applying a human rights framework is not disease-specific.35 Further, when we understand that patterns of health are fostered by inequalities in power as much as biology or behavior, an HRBA must seek to transform not just the symptoms but the legal and institutional drivers of ill-health among different populations.36 In Brazil, as noted by the CEDAW Committee itself, Alyne’s death was emblematic of patterns of exclusion in the Brazilian health system and beyond—from housing to education—which in turn reflect intersecting social, racial, and gender inequalities in Brazilian society. Second, as we have discussed, when health is understood as a right, health systems are not merely delivery apparatuses for interventions and commodities; nor are they marketplaces. They are reflections of the quality of democracy in any given society. Thus, the Technical Guidance asserted that “claims for sexual and reproductive health goods, services, and information should be understood by health system users, providers, and policy-makers as fundamental rights, not as commodities to be allocated by the market or matters of charity.”37

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Figure 6.1  Recursiveness of using human rights in health: Alyne da Silva v Brazil case.

Change in public health paradigm regarding maternal mortality

CEDAW 1979/1981

Trans-sectoral International Conferences 1990s

Millennium Development Goals, including MDG 5 2001–2015

Core Obligations defined by treaty-monitoring bodies 1999–2000; optional protocol to CEDAW adopted

Women’s health and feminist movement organizing and mobilizing

Enshrinement of the right to health and its institutionalization through the Sistema Único de Saúde (SUS; Universal Health System) was fundamental to the democratic state of law established in the 1988 Constitution of the Federative Republic of Brazil. But over the years growing marketization of health had undermined the aspirations of that universal system, and the public financing that had also been embedded in the constitutional framework itself. As the wealthy increasingly opted out of the public system for their care, the SUS entered into an increasing number of convênios with private providers. By 2009, private health spending accounted for 54 percent of total health spending.38 Failure to establish parameters for contracting private health care, together with standards of performance, left a significant legal and regulatory gap with serious repercussions for the equitable delivery and accountability of health care services.39 Alyne’s death had been a consequence of this gap, as noted by the CEDAW Committee in underscoring the failure of effective regulation of private providers.40 Effective regulation and more broadly accountability is crucial to promote what Lynn Freedman calls “a dynamic of entitlement and obligation between people and

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Global financial crisis and response 2008

HRBAs to health defined in context of maternal health 2009–2012

Vernacularization (socio-legal translation)

Material compensation/ changes in laws and policies

Alyne case findings issued by CEDAW Committee 2011

Norm diffusion at national and supra-national levels

Change in framing produces changes in response and multiple impacts

New coalitions formed for advocacy/social mobilization

Ideational/symbolic changes; appropriation of agency

their government and within the complex system of relationships that form the wider health system, public and private.”41 Third, if health rights are real rights, HRBAs should entail multiple forms of accountability, including judicial recourse. Unlike some accountability frameworks offered in global health that reduced accountability to monitoring, review, and actions that could be taken within health ministries without external enforcement,42 the Technical Guidance called for effective judicial remedies. Such remedies are crucial in reconceptualizing health issues as matters of injustice, whether in a supranational forum such as the CEDAW Committee or in a domestic court. Think for example of the reaction of the Peruvian government to forced sterilizations: treating them as lapses in care meant that the authority to monitor, review, and act on them lay within the Ministry of Health. The Technical Guidance called for the issue to be removed from the Ministry of Health and treated as a matter of basic democracy and justice. The CEDAW Committee itself had noted the lack of effective remedies as a violation of Alyne’s rights and called for the government to ensure adequate remedies and for training of judiciaries in reproductive rights.43

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Further, the Technical Guidance called for adequate funding and human capacity, together with authority and independence of mandates for judiciaries and other oversight institutions from the beginning of the policy and budgeting cycle, not as an afterthought.44 In our follow-up mission, we argued that compensation for Alyne’s mother and daughter should be coupled with systemic and transformative, not merely punitive, remedies for frontline health workers. Frontline health workers are rarely solely at fault for a maternal death, and scapegoating them fails to promote structural changes; indeed, it is often used to displace attention from the need for reforms in financing, organization, and oversight. Although we noted some positive developments from the Brazilian federal prosecutor’s office in this regard, there was also a notable gap in oversight and management in the complex health system. Finally, based on the UN Committee on ESC Rights’ General Comment 14, the Maastricht Principles on Extraterritorial Obligations of States in the Area of Economic, Social and Cultural Rights, issued in 2011, and other relevant sources of soft and hard law, the Technical Guidance stated that donor countries have an obligation to do no harm45 and to effectively regulate “private actors over which they exercise control. These include pharmaceutical companies, commodities and device manufacturers, and other companies that influence the delivery of sexual and reproductive health services abroad.”46 As we have seen throughout this book, realizing health rights requires curbing not just national abuses but also the power of transnational influences, whether through the Global Gag Rule or through transnational pharmaceutical companies and other commercial actors, on the ever-expanding medicalization of Brazil’s health system.

HRBAs Cannot Dictate How Rights Function in Practice Finally, HRBAs had to afford opportunities for vernacularization. Unlike the HIV/AIDS struggles in South Africa, where national actions had shaped global institutions, HRBAs were originally designed as policy guidance from global institutions. Scholars who favor advancing human rights through global governance emphasize human rights mainstreaming in international agencies such as the WHO. Global health governance institutions can then monitor national compliance47 with global standards and goals. Throughout these pages, I have questioned this bureaucratic approach as potentially blinding us to the structural drivers of injustice and as ill-suited to transformative praxis. On the contrary, transformative praxis requires appropriation and shaping of the meaning of rights by those affected, and placing human rights at the service of broader social and political struggles.

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Navigating the use of HRBAs reflects both the way we interpret international human rights law and how we believe rights effect social change. On the one hand, much of the appropriateness of measures to address maternal ­mortality—or any other issue of health-related rights under international law—can be determined by empirical evidence, as in the centrality of emergency obstetric care or the appropriate range for cesarean rates. Some of the appropriateness of state actions can be evaluated in accordance with normative premises about diverse women, girls, and pregnancy-capable people as entitled to substantive as well as formal equality, whose SRHRs free them from morbidity and misery to fully participate in society. Others can be judged by principles on gender-based violence (including obstetric violence) and intersectional discrimination (such as against poor Afro-descendant women like Alyne, as the CEDAW Committee had stated). Still others can be grounded in self-governance and dignity (such as full and prior informed consent). We have also noted that health rights should not be overridden by ordinary economic priorities unless they are adequately justified under law. Budget cuts (or transfers of budgets from public to private through convênios) should not disproportionately affect the disadvantaged; and all people should be given fair chances to enjoy health rights, rather than focusing purely on aggregate outcomes. Guidance relating to all of these principles, and others, that offers rationales for certain state policies is essential to advancing human rights in health. Further, as we have seen, these principles have effects on the formulation and outcomes of budgets and policies, as well as on implementation, monitoring, and oversight. However, it is a mistake to believe that an HRBA provides a magic formula for determining how much of a health budget to spend on one condition—or even on health compared with other aspects of a life of dignity. Nor can an HRBA specify what to spend on remote areas of the country with marginalized persons versus populous areas, even though it can establish that marginalized persons deserve fair chances at access and outcomes. There is not one percentage of a health budget governments must spend on health, although the majority spend far too little; there are no black-line rules to be drawn from extensive lists of core obligations as to how to weigh many competing priorities in resource allocation, although there are indeed some unacceptable trade-offs. Those are questions that require democratic deliberation and the balancing of important values and priorities in a specific sociocultural context. And that is the point. Human rights should function in the service of more inclusive, egalitarian and principled fair democratic politics, not as bureaucratic policy substitutes for it.

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As we have seen, health systems and health policy-making can be particularly insulated from democratization and meaningful participation by affected populations because of steep asymmetries of knowledge and power. Too often the rhetoric of “participation” masks an uglier reality. Just as differential treatment based on axes of identity—gender, class, race, caste—represents exercises of power, so too does the pretense that background differences do not exist in participatory spaces. As Nancy Fraser writes, for meaningful participation to occur, there should be, first, rough parity of wealth/class to allow equal voice and opportunity and, second, parity of recognition/social status/culture to allow equal respect in interaction.48 When this is not the case, other measures must be adopted. For example, in the accompaniment model in Peru discussed in Chapter 4, it was critical to success that the Defensoría del Pueblo acted as an interlocutor in discussions to balance the power of indigenous community members and representatives of the formal health system. If HRBAs to health are to be meaningful, we can accept neither closed-door decision-making by “expert” technocrats nor formalistic approaches to participation that do nothing to alter, and may whitewash, structural subordination. Transformative human rights praxis in health calls for careful attention to the conditions for participation, background structures that shape power dynamics, and creative strategies to balance voice among diverse groups.

Evolution of HRBA Initiatives Follow-up of the Alyne case is far from the only example of using the Technical Guidance. As of this writing, the OHCHR has filed three entire reports with the UN Human Rights Council on activities and applications related to the Technical Guidance. Organic applications sprang from members of IIMMHR and a constellation of other civil society organizations across the globe. For example, in Uganda the Center for Human Rights and Development (CEHURD) created a maternal health advocacy network, which has fostered budget advocacy (leading to significant increases), conducted community mobilization and popular education as well as legal mobilizations, including in 2020 the judicial construction of a right to maternal health in the Ugandan constitution. In Uganda, just as in Peru, efforts were made to equalize negotiating power with government representatives, this time through workshops on the epidemiology of maternal mortality as well as the state’s obligations under international law. In India, Sahayog used mobile technology to promote social accountability to communities and explored power dynamics among cadres within the health system that were affecting community health workers’ rights. These and many other efforts to

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address laws, policies, and implementation, as well as symbolic appropriation of rights, provided extremely useful information about barriers to making rights work in practice—which in turn feed into global norm development.49 On the other hand, in the 2010s HRBAs began to proliferate not just as intergovernmental documents but as guidelines from UN Special Procedures and even as programming guidance in service-delivery NGOs. Over the last ten years, many HRBAs have become disease-specific, setting out abstract lists of principles and actions to be ticked off by bureaucrats, neglecting the conditions necessary for bottom-up negotiation and equal participation and often omitting or underplaying the central role of judicial remedies in a democratic state. These so-called HRBAs, which too often “gloss over the inherently messy, controversial, and political—as well as contextual—issues that keep certain people systematically disempowered,”50 have little to do with shifting power or fundamentally democratizing health systems. By the time of our follow-up mission to Brazil, it seemed to many of us that “power and inequality had become irrelevant in the new world of [global health] governance.”51 And as conservative nationalism grew in the years preceding the pandemic, the bureaucratization of HRBAs played into populist rhetoric discrediting rights as elitist tools to manage growing inequality.52 We have seen in cases from Argentina to South Africa that passionate political energy is the key to transformative rights strategies. Looking forward, it is imperative that HRBAs serve emancipatory political struggles, not be isolated from them.

The Role of Courts in Bringing Justice to Health Judicialization in Brazil and Latin America: Issues and Controversies The frustration with blocked political channels that led to seeking redress in the Alyne case, and many others, in supranational forums also led people to turn to courts to champion their rights. The path for right-to-health litigation globally was undoubtedly shaped by early cases on access to antiretroviral therapy (ARVs) to treat HIV/AIDS. However, it quickly expanded. Maternal mortality cases were litigated in countries from India to Uganda.53 Litigation covered an ever-growing array of issues (mental health, food security, environmental health, climate change), populations (persons with disabilities, prisoners, indigenous communities, intravenous drug users), and, increasingly, issues of regulating private actors (rescission of insurance contracts, conditions for reimbursement) as well as public institutions.54 Health-related rights litigation, sometimes based on expansive interpretations of the right to life (as in India and Costa Rica) as well as others, had begun to affect political discourse as well as institutional policy.

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The right to health had reached maturity as a legal right in many countries with transformative constitutions and was being created in others through antiformalist readings of constitutions (for example, directive principles in Uganda’s constitution). In Latin America, since the late 1980s and early 1990s when Brazil, Argentina and Colombia had reformed their constitutions, there had been even more expansive incorporations of ESC rights in new constitutions, such as those of Ecuador and Bolivia, and additional structural reforms to enable ESC rights enforcement, such as in Mexico. Brazil was the first country in South America to enshrine a right to health in its 1988 Constitution. It was the first country in the global South to guarantee ARVS through the public health system, the SUS, which was achieved through a combination of social mobilization of the HIV/AIDS movement including litigation for health as a right and the administration of then-President Fernando Cardoso fighting intellectual property restrictions. However, the explosion of health rights litigation using protection writs in Brazil (and Latin America) since then—predominantly although not exclusively for individual entitlements—led to polarized views on whether health rights improved health equity or exacerbated inequalities in health systems and societies. In 2010, reacting to critics of the litigation boom, the Supreme Federal Tribunal held public hearings to establish parameters for enforcement of health rights claims after assessments by the Agência Nacional de Vigilância Sanitária (ANVISA; National Health Surveillance Agency). According to those guidelines, all Brazilians were to have access to treatments in the SUS; drugs and treatment not listed in the SUS but whose safety and efficacy had been formally recognized by ANVISA; and drugs and treatments for which a consensus existed among medical professionals. At the same time, courts were not to grant experimental treatments or those that were more expensive than reasonable alternatives included in the SUS. These hearings led to, among other things, the 2012 establishment of the Comissão Nacional de Incorporação de Tecnologias no Sistema Único de Saúde (CONITEC; National Commission for Health Technology Incorporation). The guidelines, however, have not reduced health rights litigation in Brazil. After labor, health is one of the most heavily judicialized rights in Brazil. According to Octavio Ferraz, estimates of the aggregate number of cases between 2014 and 2019 ranged between 702,739 and 1,293,625—averaging between 117,123 and 215,604 a year. From 2009 to 2016, the aggregate costs of health litigation against all levels of government (municipal, state, and federal) were estimated to have

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grown from around R$2 billion (USD 1.545 billion), approximately 0.4 percent of the total health budget, to R$3.5 billion (USD 3.5 billion), approximately 3 percent of the total.55 Some in the Brazilian government—just as in Colombia, which experienced a similar phenomenon—argue that, despite the large absolute number of claims, the relative number is not that high. That is, of Brazil’s 210 million people approximately 0.1 percent are litigating the right to health56 and some, no doubt, are repeat litigants. In the US by comparison, a far higher percentage of health entitlement disputes go through pharmacy benefits managers or through negotiations between insurance companies and providers. What, then, are we to make of the judicial enforcement of health rights when it becomes so widespread? Evaluating the drivers and distributional impacts of health rights litigation is far from straightforward for reasons related both to a lack of empirical data and to normative disagreement about what should matter in making an appraisal. Critics such as Octavio Ferraz and Daniel Wang argue that judicialization has undermined formal equality—the need to treat all similarly situated patients equally—by fostering queue jumping whereby those who have access to courts and care are not always treated the same as others who have a certain condition. Second, critics argue that expensive and clinically unproven treatments awarded by courts undermine substantive equality—the need to address unequal background conditions in the highly unequal societies that make up the region, including Brazil, which prevent people from equal enjoyment of health rights in practice.57 Some scholars such as Joao Biehl, Mariana Socal and Joseph Amon, argue that judicialization is merely a contextualized mode of achieving the right to health given a highly pharmaceuticalized health system with significant regulatory and compliance gaps.58 Others such as Danielle Borges argue that individualized litigation, precisely by creating unfairness and inefficiency, spurs action by the government to rationalize decision-making and make it more fair, such as through CONITEC in Brazil established in 2012.59 Mariana Mota Prado notes that debates over the equity impact of litigation obscure another important aspect of judicial enforcement: greater normative accountability and oversight in the complex Brazilian health system.60 My own view is that judicial enforcement of health rights in Brazil, and across Latin America, is complex and the picture changes over time. It is important to examine the many impacts—understood broadly as we have outlined in earlier chapters—looking at both legal and health systems and beyond. To date, even

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where there is extensive litigation, there is scant empirical evidence to suggest that judicial decisions are taking funding from other programs or that opaque and fragmented priority-setting in affected countries would be more “pro-poor” but for judicialization. Further, the majority of cases in Colombia and Argentina, if not Brazil, are more properly understood as clusters of compliance and regulatory gap litigation—where entitlements guaranteed in social insurance schemes either are not provided or are poorly defined (e.g., whether or not an angioplasty includes the stent)—that fuel judicial exasperation as much as judicial activism. In functioning governments, such cases should lead to improved regulation and definitions of benefits schemes, but that is often not the case. Everaldo Lamprea argues that the judicialization of health rights in Colombia and Brazil was largely driven by the gap between supply and demand, which was accentuated by health reforms that increased social insurance coverage for a large array of medications and treatments.61 If we focus less on health markets and consumer behavior, and more on the functioning of democracy, litigation can be understood as a resort to a favorable opportunity structure when, in Brazil and elsewhere, the political venues for fairly defining contours of health rights and regulating actors in the sector were chronically dysfunctional. Litigation in Latin America is inextricably bound to gaping social inequalities, as well as deeply fragmented and medicalized health systems, which are poorly regulated and in which priority-setting is too often conducted without coherent rationales or public justification. It would be misleading not to note the important collective cases that have been brought in Latin America, including those relating to the manufacture of orphan vaccines in Argentina and the public health conditions of a poor department in Colombia. Likewise, it would be misleading not to point out that courts have also shifted the burden of proof to mitigate bureaucratic burdens on disadvantaged plaintiffs (for example, showing indigence to receive benefits or allocating provincial budgets for maternal-child health needs). They have injected standards of reasonableness into decisions regarding sexual and reproductive health, including abortion in Argentina, Mexico, and Colombia; and they have imposed important standards of constitutional justification on private providers, insurers, and other actors in health systems,62 as well as standards of information and other aspects of health product marketing. Courts in the region have also spurred regulation of pharmaceutical pricing.63 Further, during COVID-19 high courts, including the Supreme Federal Tribunal in Brazil, enforced compulsory licenses and required transparency in agreements on vaccines signed between pharmaceutical monopolies and

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governments.64 In Brazil, the Supreme Federal Tribunal in particular used the right to health as a bulwark against misfeasance and malfeasance by the Bolsonaro regime, without which hundreds of thousands of additional people, disproportinately from marginalized groups, might have died. However, it would be equally misleading not to acknowledge that the majority of health rights litigation in the region involves curative treatments, overwhelmingly pharmaceuticals, rather than preconditions of health or social determinants, which would have greater pro-equity impacts. It is also true that there are significant transaction costs associated with this “routinization” of judicialization, for the judicial system as well as the health system.65 And, perhaps most important, to the extent judicialization of medicines is not coupled with challenges to intellectual property, it can reinforce structural inequalities even while serving as an escape valve in broken systems. According to Amy Kapcynski, “when courts fail to articulate the right to health as having any necessary implications for political economy, they construct a picture of the right to medicines that, both conceptually and legally, sides with the prevailing order. This human right abets not just neoliberal imaginaries but also neoliberal legalities.”66 The answer is not to prevent the vindication of rights through judicialization, which would be fundamentally anti-democratic. The multipronged response must be to challenge intellectual property regimes during ordinary times as well as pandemics, through national and international advocacy; to push health system reforms that place a far greater emphasis on public health measures and primary care; to incorporate legitimate priority-setting mechanisms into health systems; and to use political and social mobilization to address social determinants of health, from food systems to housing.

Reframing Remedies: Using Judgments to Catalyze Public Participation and Political Action A number of courts have experimented with more structural measures to catalyze action by and dialogue with the political branches of government. Because of the inherent “spider web-like”67 effects of decisions affecting more than a single entitlement to an intervention, and the need to balance public policies and multiple interests in ways that the legislature and executive tend to be better suited for, new remedies were especially appealing. A number of high courts engaged in what Mark Tushnet calls a “weak form” of judicial review68 or what Roberto Gargarella calls a “dialogical understanding” of the system of checks and balances.69 Health-related issues have been the subject of various dialogical remedies, including the TAC PMTCT case discussed in Chapter 5 and a case involving a

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right to food in India.70 In the region, courts have coupled this horizontal control with respect to other branches of government, with the innovation of public hearings to give voice to those affected in the solutions devised. High courts in both Argentina and Colombia have been hailed as pioneering judicial innovations in dialogical remedies in health-related cases. However, they also reveal challenges. In Argentina, environmental damage to the Matanza-Riachuelo River basin was having serious effects on the health of nearby residents, who live only a few minutes from elegant downtown Buenos Aires. The residents brought a class action suit, referred to as Mendoza for its lead plaintiff, Beatriz Mendoza. The suit involved multiple stages at the Supreme Court of Argentina. In 2008, the Court declared the area uninhabitable and called for relocation and cleanup of the basin. It found that the fragmented and overlapping responsibilities of government authorities and a lack of political will were at fault, and mandated national, provincial, and local governments to address both past and future harm by cleaning the basin, building a drainage and sanitation system, and adopting an emergency plan.71 The judgment has resulted in the removal of thousands of tons of waste from the riverbanks and the water, and greater oversight of these other branches of government. However, it achieved far less with respect to improved regulation of private actors, such as Shell Oil, and the waste management company Stericycle (and its Argentine subsidiary, Trieco). The cleanup strategy was not dictated by the Court. Rather, ongoing implementation required numerous public hearings (initially held every six months and then annually). In 2016 the Court established criteria to ensure that civil society’s participation was meaningful, not tokenistic. However, María Natalia Echegoyemberry of the Access to Justice Program of the Civil Association for Equality and Justice (Asociación Civil por la Igualdad y la Justicia, ACIJ), argues that mechanisms of participation were insufficient and too often rulings were inconsistent with or completely ignored grassroots demands.72 Martín Sigal, Julieta Rossi, and Diego Morales argue that dialogical orders extend compliance phases and reveal institutional deficiencies, which then produce responses.73 In Mendoza, the Autoridad de Cuenca Matanza Riachuelo (ACUMAR), an interjurisdictional river basin authority for Matanza-Riachuelo, was established to carry out an environmental management plan, and a new body was established to monitor compliance.74 Echegoyemberry is less optimistic and points to ACUMAR’s structural inefficiencies with respect to compliance monitoring.75 Indeed, on a June 2022 visit to Villa Inflamable—literally the “Inflammable Slum”—the reality I saw on the ground was bleak. People wore

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masks not because of the ongoing COVID-19 pandemic but because of the toxic particulates that blanket the area, causing widespread cancers, birth defects, and skin diseases. In the fifteen years since the original judgment, more people had moved into the neighborhood than had been relocated, and different municipalities’ capacities to use financial resources have generated inequalities among the poor communities where people had been relocated. In Colombia, the transformative constitution of 1991 quickly came into conflict with a 1993 two-tiered health system based on “managed regulation” of largely private providers and insurance companies. Given a lack of effective oversight and regulation, as well as problems built into the design of the system, the courts increasingly became an escape valve—with tens of thousands of tutelas (protection writs) for health rights violations brought every year. In 2008, after repeatedly reiterating constitutional criteria for policies to the executive (in terms of eligibility for subsidized regimes, reducing bureaucratic barriers, etc.) and the legislature (funding unification of the contributory and subsidized regimes, as the law had envisioned), the Constitutional Court issued a sweeping decision (T-760/08) that called for restructuring important elements of the health system in line with legislative and policy commitments and prior judgments. However, it did not tell the executive branch how to achieve these ends. Like a previous structural judgment (T-025/04), the 2008 ruling provided for follow-up by the review chamber and a special unit within the Court, which held a series of public hearings.76 Just like the Mendoza judgment in Argentina, the ruling has been lauded around the world for its dialogical remedies and “experimentalist regulation,” to use Charles Sabel and William Simon’s term77 Nevertheless, the framing is also worth noting for its lack of a political economy or gender perspective, which limited a vision of the health system as creating inclusion for all. The notion of health is the biomedical absence of disease or pathology, which is to be remedied by access to medical services and curative treatments, determined by the scientific expertise of the clinician.78 The Court consigned the question of financing to a footnote and made no mention of how the division between the two regimes for formal and nonformal workers or those making very low wages disproportionately harms women and others consigned to subsistence and informal work. As elsewhere, there are mixed opinions about how the public hearings held by the Colombian Constitutional Court functioned. Everaldo Lamprea characterizes the hearings that took place when he was working at the follow-up unit of the Court as spaces of authentic deliberation that created substantial pressure on the government.79 Others are less sanguine, noting that the hearings merely

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allowed statements of widely divergent political and power positions without meaningful deliberation. The T-760/08 decision produced a number of material and symbolic impacts. Most important was the Statutory Framework Law on Health, explicitly based on the right to health, which entered into force in 2015.80 Over time tutela claims have shifted from basic access to ancillary services and quality of care, although marginalized groups still face substantial barriers to health services.81 Processes were devised for periodic comprehensive updating of benefits with participation from civil society as well as professional associations.82 Other indirect changes were triggered. Greater regulation of pharmaceutical pricing was introduced by one minister of health in spite of significant threats from US lawmakers regarding underwriting of the Colombian peace process. Even so, pharmaceutical regulation has remained inconsistent among Colombian administrations. Generally, the highly medicalized, and largely privatized health system in Colombia remains poorly regulated, subject to extraordinarily powerful and well-organized corporate interests, endemic corruption and political cronyism, which reflect the steep social inequalities in Colombian society. The numbers of health-related tutelas had once again climbed to over 200,000 per year by the time the pandemic struck. Weak-form dialogical remedies in health and beyond are responses to democratic legitimacy questions concerning judicial review in democracies. As Keith Syrett argues, structural remedies potentially offer “an arena in which argumentation, reasoning and explanation for policies and decisions can be publicly advanced and scrutinized . . . and such decisions play an ‘educative’ role, enabling wider ‘political discussion to take a principled form so as to address the constitutional question in line with the political values of justice and public reason.’”83 This normative role is essential if we construe health protection as a fundamental obligation in a democratic state of law and health systems as social institutions. However, dialogical remedies share common challenges regarding institutional capacity to confront vested entrenched interests through their orders and through participatory hearings. Just as discussed in relation to HRBAs, stratification and systemic exclusion that lead to violations in the first place make authentic participation in judicially hosted dialogues exceedingly difficult. Further, the incapacity or indifference of political branches of government to the problems identified in litigation, and the lack of public trust in government, create obstacles to high courts withdrawing from these cases even after many years. In short, there is a complex political economy surrounding the judicialization of health-related issues. As a result of political and regulatory dysfunction, people

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have turned to the courts for remedies, which social constitutions in these Latin American countries created. Individual litigation for health entitlements have often failed to challenge rent-seeking interests of pharmaceutical monopolies and the profound commodification of the health sector. Dialogical remedies face challenges of their own due to precarious institutional capacities for both enforcement and implementation, as well as the outsized power of private vested interests, including transnational corporations. However, rather than reject judicialization as inherently flawed or attempt to impose limits on individual rights to health, we are better served by understanding under what conditions judicialization can play a role in progressive change. How can we modify differential access to courts as well as health systems? What mechanisms are most promising to enable judges to weigh different forms of evidence related to health? How should adjudication of health issues be framed by courts if we care about the drivers of structural inequality, such as intellectual property? How can we enhance meaningful participation of people whose lives are affected in dialogical processes? How can transnational corporations be held to account? Under what circumstances do newly formed institutions provide meaningful oversight of compliance? Learnings from these health-related cases, and others, offer insights into how to approach the increasing trend to use rights litigation to address climate justice questions, which are also technical, involve both marginalized communities and rent-seeking transnational actors, and have complex spiderweb-like effects. Perhaps the most important lesson in using rights for social change regarding health is that just as with TAC in South Africa and abortion rights in Argentina, litigation must be part of larger strategies. According to Colombian legal scholar Rodrigo Uprimny, “judicial intervention, especially when linked to certain kinds of rights struggles, can also operate as a mechanism of social and political mobilization to the extent that it empowers social groups and facilitates their social and political action.”84 In the end, transforming the conditions underlying health—whether in health systems or in the environment—depends on deploying rights strategies dynamically, incorporating litigation in courts and supranational mechanisms, in broader strategies involving media, political advocacy, and networked social movements.

On March 27, 2021, in the midst of both the pandemic and America’s racial reckoning after the brutal murder of George Floyd by police, a Haitian-American teenager was shot behind the condominium where I live. An array of races and ethnicities

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live in our Cambridge, Massachusetts, neighborhood, which has a mix of affordable housing, private condominiums, and one- and two-family homes. Xavier, or “X-Man,” as he was affectionately called by friends, had graduated from high school in 2020 and would have been headed to the University of Louisiana in the fall of 2021, where he hoped to study engineering.85 It is unclear what precipitated the shooting, and no one has been charged as of this writing. Still, the reason this nineteen-year-old died, as far too many young, particularly Black men, have died, must be understood in terms of the epidemic of gun violence in the United States and the federal government’s abject failure to regulate firearms. Faced with an unbearably senseless loss in a sea of senseless pandemic death and suffering, the community spontaneously erected its own memorial on the public basketball courts where Xavier and the youths in our neighborhood gather. The outpouring of grief did not fade with time. On the contrary, the basketball courts, which had become a place to escape lockdown as well as socialize, became a site of collective catharsis. The shrine to Xavier grew over weeks and months with a proliferation of candles, flowers, cards, and sneakers tied through the chain link fence surrounding the courts; people who knew Xavier well and people who knew him not at all gathered and allowed themselves to cry and scream, to actually feel, amidst the numbing toll of the pandemic and violence. We were all bereaved. In 2022, a permanent plaque for Xavier was erected as well as a mural that was painted by community members. Designed by Xavier’s mother and friends, the plaque reads in part, “You will always be missed by your family and friends. . . . Although we cannot see you, you’re always by our side.” Life has moved on, as is inevitable after one person’s death or the mass death we witnessed in the pandemic, but memory is our connection to the dead and to what their deaths—and lives—meant. The human rights movement has long recognized that remembering is an ethical imperative if we are to have any hope that never again will we see atrocities like those under the dictatorship in Argentina or the war crimes in Ukraine, Tigray, and elsewhere. Protecting our collective memory, and feeling our common pain, is essential to teaching us not to repeat the same mistakes. It is when we become numb to the endless mass shootings or the planeloads of women and girls who die in pregnancy or the mounting toll of COVID-19 that cynicism and apathy set in. As part of the symbolic reparations from the CEDAW Committee’s decision in the Alyne case, a plaque was erected in the Hospital Géral de Nova Igaçu. In contrast to the organic heart-felt tribute for Xavier, this plaque was small, had no personalization provided by Alyne’s family (who had not been consulted on

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its design), and was located in an interior corridor that neither the family nor the public could access. At lunch with Alyne’s mother and daughter in 2015, I asked Doña Lourdes da Silva and her granddaughter Alice how they felt about symbolic reparations. They were quickly dismissive; far from solace and healing, the symbolic reparation was a performative gesture, a box to tick off that, if anything, seemed to reinscribe the insignificance of Alyne’s death, and life. Perhaps the greatest irony in Alyne’s case is that she died not because she wanted a child, but because she did not want any more. The health center in Belford Roxo was known for lax compliance with government regulations on tubal ligations, which required a woman to be at least twenty-five years old and to have two living children. Alyne only had one child but did not want more after that pregnancy. She chose a private facility known for skirting Brazil’s ineffective regulation of family planning; she died because of ineffective oversight of obstetric care. In retrospect, it is fair to say that the follow up mission, together with extensive conversations with different actors and the report, enabled a re-initiation of local dialogues about the drivers of maternal health inequities—before politics again intervened. In 2011, when the CEDAW Committee issued its conclusions in Alyne, Brazil had been one of the fastest-growing economies in the world. Nevertheless, by 2015 commodity markets had fallen precipitously and there was high unemployment, austerity measures, and corruption scandals over government contracts. The same year that the Alyne decision was issued, the World Bank announced that its lending arm would be providing an “innovative” partial credit guarantee funding facility under which a large construction conglomerate, Construtora Norberto Odebrecht S.A., would obtain surety bonds to support billions of dollars’ worth of construction contracts in Brazil. From the beginning, collusion was foreseeable in this financing model. Lava Jato (Operation Car Wash), a sweeping criminal investigation launched in 2014 revealed corruption in the federal government, leading political parties, private contractors, and the state-controlled oil company, Petrobras.86 In August 2016, in a highly polarized atmosphere, Lula’s successor, Dilma Rousseff, was impeached by the Congress for corruption stemming from the Odebrecht contracts. And in December 2016, the conservative-controlled Congress that had ousted Rousseff approved a constitutional amendment to freeze public spending over the next two decades in violation of obligations under international law.87 The share of health spending in the federal budget dropped 17 percent in 2017 alone. The budget for women’s social and legal empowerment programs was cut by 52 percent that year, and the number of services involving

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violence against women was cut by 15 percent. In what was seen by many in a polarized context as political revenge, Lula himself was prosecuted and convicted, and spent 580 days in prison on corruption charges relating to Odebrecht before the supreme court eventually overturned the conviction. In 2018, the conservative hardliner Jair Bolsonaro was elected president, promising to root out corruption and impose order. A nationalist populist, he was openly misogynistic, racist, and homophobic.88 In the era of “sustainable development” and increased attention to climate change after the 2015 Paris Agreement to the UN Framework Convention on Climate Change, Bolsonaro was eager to open the Amazon—the “lungs of the world”—to further oil drilling and accelerate deforestation. During the pandemic, Bolsonaro, the “Trump of the Tropics,” came to personify COVID-19 denialism and was eventually accused of crimes against humanity for causing hundreds of thousands of excess COVID-19 deaths.89 The right to health became a rallying cry of ordinary Brazilians during this time. And, when Lula narrowly defeated Bolsonaro in 2022, it was a vote to save democracy itself understood as including the right to health, as much as to support Lula. In sum, in the years before the pandemic we had seen many of the initial aspirations of the health rights movement come to fruition, both in judicial enforcement of health rights as real and in articulation of how applying human rights to health can guide policy-making, program implementation, and oversight. Yet just as with Xavier’s and Alyne’s memorials, we also saw how they could be hollowed out without sufficient attention to how they are deployed. In short, far from an era of operationalization of human rights in health, the decade before the pandemic revealed the imperative of dynamic and contextualized experimentation in the use of rights strategies in courts and beyond. The rise of populism, ballooning inequality, and ever-accelerating climate change underscored the need for broader strategies to overcome the conjoined challenges we face in advancing health, the democratic rule of law, and social justice.

Chap te r S e ve n

Power, Politics, and Knowledge The old is dying but the new cannot be born; in this interregnum, a great variety of morbid symptoms appear. —Antonio Gramsci1 COVID-19 has been likened to an x-ray, revealing fractures in the fragile skeleton of the societies we have built. It is exposing fallacies and falsehoods everywhere: The lie that free markets can deliver healthcare for all; The fiction that unpaid care work is not work; The delusion that we live in a post-racist world; The myth that we are all in the same boat. While we are all floating on the same sea, it’s clear that some are in super yachts, while others are clinging to the drifting debris. —António Guterres, UN Secretary General2

the death count from COVID19 in the US had reached 733,564. By the time the country had surpassed the staggering toll of 1 million dead in May 2022, the US government and most of the population had decided that we had to learn to live with this virus and get back to life as usual. Of course, some people could not move on—those who were immune-compromised and at high risk despite access to vaccines and therapeutics; those whose lives had been shattered by the loss of loved ones; those grappling with the mysteriously sprawling effects of long-COVID or with conditions that had been aggravated by the pandemic, from anxiety, depression, and substance abuse to physical conditions undiagnosed or untreated because of the pandemic. Others had lost their jobs or homes; marriages had collapsed; college students had dropped out while younger students had been set back years in grade school attainment; retirement funds had been exhausted; healthcare workers and first responders were traumatized, and others were simply ON THE D AY I M ET JU A N IN OCTO B ER 2 0 2 1,

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overwhelmed with confusion, fear, and fatigue and trying to make sense of the brokenness of their world. Underneath the apparent ubiquity of loss, large and small, lay the reality that the toll of this pandemic had not been borne equally. As Juan and I sat in downtown Boston, suitably physically distanced and wearing COVID-19 masks, I reflected on how differently the two of us, living in the same metropolitan area, had experienced these plague years. My teaching and advocacy work had swiftly moved online with no risk of losing income. As a custodian, Juan was an “essential worker” in his organization, continuing to commute to his building on mass transit and perform maintenance throughout the pandemic when he was personally at high risk of complications or death. Even as we applauded them for their heroism, US society was also sending the message that essential workers, disproportionately people of color including immigrants, were expendable. Juan had friends, many also essential workers, who had not only died but whose entire families had been wiped out. There were no special health and social benefits for these families, no help with funeral expenses, no public accountability for unsafe working conditions. Listening to Juan, the hero rhetoric, which had been applied to health-care workers as well, seemed like a cynical sop to deflect attention from the lack of broader solidarity and systemic measures to enhance equity in the US response to COVID-19. Juan had been diagnosed with Parkinson’s disease five years before and was exhibiting obvious symptoms, including uncontrolled movements. Other symptoms of this awful disease are less visible, including depression and confusion. As a custodian in a large office, Juan no longer climbed on ladders or carried heavy objects; he walked stiffly and had marked palsy in his hands, but he worked extremely hard to “pass” in the land of the healthy. I had helped Latino immigrants navigate the bureaucratic labyrinths of the US medical system for years: a woman who needed complex neurological surgery; a child whose broken foot would not heal for seemingly inexplicable reasons; a single mother who delayed treating ovarian cysts for lack of childcare; and any number of women seeking abortions and treatment for the physical and emotional effects of domestic abuse. But Juan was inhabiting a different island in what Susan Sontag calls “the kingdom of the sick,” to which each of us holds a passport, grappling with a chronic degenerative disease for which there is no cure.3 Despite hesitancy, Juan had just been vaccinated against COVID-19 because of his employer’s requirement. His skepticism stemmed from a very bad reaction one of his daughters had experienced after receiving a vaccine years ago. Her Guillain-Barre−type reaction had eventually resolved; nonetheless, the



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indifference and denialism he and his daughter had faced from the health system left a residual mistrust. That lack of trust resurfaced when Juan perceived that public health authorities were dismissing reports of adverse vaccine effects, which friends were reporting on Facebook. The Parkinson’s diagnosis had been made in Boston, but Juan’s story had begun decades earlier, in Guatemala. Juan was born a few years after a US-backed military coup overthrew the democratic government of Jacobo Arbenz in 1954. Like many landless peasants, Juan’s father was forced to work brutally long hours for pitiful wages on large foreign-owned coffee and maize plantations. Starting at the age of five, Juan was working at his father’s side, sometimes as much as ten or even twelve hours a day. As a child, Juan was helping in any way he could: assisting with harvesting, carrying loads, and, above all, applying pesticides and herbicides day in and day out. What we now know about Parkinson’s is that although there may be a genetic vulnerability to it, exposure to pesticides and herbicides greatly increases the chances of gene expression and developing the condition.4 Glyphosate, the primary ingredient in Monsanto’s Roundup, has been widely used on coffee plantations since the early 1970s, replacing equally toxic but less “efficient” chemicals. Glyphosate and other chemicals used in conventional farming allow for the same fields to be planted continually, making them more profitable but degrading the land, creating toxic workplaces, and leaching into food chains. In the United States, billions in damages have been awarded to plaintiffs alleging cancer and other effects from Roundup. WHO lists glyphosate as a probable carcinogen.5 Yet it continues to be used in farming around the globe, and is sprayed aerially on coca crops across Colombia and South America as part of the chemical arsenal deployed to support US-exported suffering in our “War on Drugs.”6 Like many campesinos, Juan was caught between insurgents and the military dictatorship in power; Guatemala was embroiled in one of the most horrific proxy wars of the Cold War period, in which at least 200 thousand people died and over a million more were displaced. After years of threats and harassment, during which some of his friends were murdered, Juan received asylum in the United States in 1982. He learned some English, married, and started a family. Because he had legal status, he was entitled to certain federal benefits, and because he lived in the Commonwealth of Massachusetts, he was entitled to health care. The Parkinson’s diagnosis shattered the illusion that Juan had escaped the world of his youth, along with the sense that he might be entitled to the life plans that so many of his US coworkers seemed to take for granted. Juan mused

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that perhaps if they had had breaks on the coffee plantation or water to wash their hands or some kind of protective clothing, his Parkinson’s would not have happened. “But we weren’t treated like human beings,” he told me, with neither numbness nor indignation. When I asked if he was angry, he looked down and, after an extended pause, gazed directly at me and said matter-of-factly, “La vida es dura [Life is hard]. . . . You have to let go of regrets, regrets for the bad choices you make, and regrets about the choices you never got a chance to make too.” I nodded, reflecting on how any guidance I might offer to Juan about navigating the health system paled in comparison with the stoic wisdom he shared with me. With the overwhelming uncertainty of a novel coronavirus, many people came to contemplate their own death in a visceral, immediate way for the first time. But this dignified man—likely invisible to virtually everyone who worked in the same office building or passed him on the street because of his class, race, and “station in life”—had spent many years thinking about how and under what conditions he would die, from political violence to Parkinson’s to COVID-19. Juan started his own online support group for Latinos with Parkinson’s, who shared their history of working in the fields as children. Sometimes the information was clearly wrong and was influencing Juan’s misguided decisions about his medications. But in the pandemic, we learned that health information is not delivered in a vacuum; even in “normal” times, context determines how information is received and how people come to know what they claim to know. Any number of miracle cures for Parkinson’s can be found on Google, Facebook, and YouTube. The internet, which had promised democratization of information a decade earlier, had also enabled anyone to peddle misinformation and fake hope, as became brutally clear during the pandemic with COVID-19–related lies. A Lionel Messi fan, Juan filled silences by animatedly discussing Argentine soccer. Explaining his fervent conviction that Argentina would win the World Cup in 2022 allowed him to be a different person—or rather it allowed him to be a full human being and not merely the carrier of an incurable disease. At times, he seemed to recognize that the future was only going to get worse, that his wiry, formerly powerful body was going to become progressively weaker, and that his world was going to become progressively smaller. At times, he clearly resisted the despair embedded in that narrative of his fate, telling me that the youngest of his three daughters, who was currently in college, had promised him she was going to find a cure for Parkinson’s. “I told her she needs to do it quickly,” he said, lifting his hands from his lap for the first time during our hours-long conversation and clapping his fists on the table with some clumsiness, “for me.”



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In setting out to understand what the COVID-19 pandemic revealed about our societies, health systems, and global responses, Juan’s story provides insights into how structural and historical injustices invariably manifest in individual human beings in pandemics and ordinary times. Further, at a time when there are increasing calls to decolonize global health, and revisit the architecture of global governance, Juan’s life story reminds us of the embodied effects of structural violence in the global political economy. This chapter is a snapshot in time, a piece of the historical evolution we have traced throughout the book. The situations and issues described will inexorably evolve. But we need to be clear-eyed about the world SARS-CoV-2 struck and what the pandemic revealed about our health systems, democracies, and system of multilateral cooperation in order to draw lessons for transformative human rights praxis moving forward. In the first section, we review how deepening inequality and austerity imposed after 2008 led to a wave of populism and the elections of ethnonationalists who promised to take on the traditional political classes. The rule of law and human rights were already precarious when the global pandemic struck and allowed illiberal governments to consolidate movements toward autocracy. The second part of the chapter examines more specific lessons from the pandemic regarding health systems and the connections between population health, health systems, and democracy. Highlighting the lack of trust we saw in health advice as well as more broadly during the pandemic, the chapter deepens the theoretical exploration of the implications of treating health as a right for the social institutions centrally responsible for ensuring that right, from information on health that enables people to exercise agency over their well-being to fair processes for setting priorities to financing. Universal health coverage (UHC), a centerpiece of the Sutainable Development Goals (SDGs) launched in 2016, presents opportunities for health systems to be organized as core social institutions in synergy with the right to health; however, doing so calls not for mechanical pursuit of UHC indicators but for attention to the structural architecture of health systems, as well as the constraints imposed by our order. In the third section, the chapter considers what we have learned about global governance for health. Trends in global governance for health had set the stage for the debacles of cooperation that we witnessed during the pandemic. The influence of philanthro-capitalists and corporate “partnerships” with the UN we discussed in Chapter 5 had left the WHO and the UN profoundly de-democratized well before the pandemic. The power of transnational corporations (TNCs)

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had shaped the possibilities for global health equity both directly and indirectly. This larger context is critical to consider in the elaboration of a pandemic treaty and the revisions to the International Health Regulations of 2005. Preventing the ravages of future pandemics must be seen as inextricably related to threats posed to our shared humanity and the planet by gaping inequality, pathogenic food systems, and climate change. Finally, the last section of the chapter focuses on lessons from the pandemic regarding advancing global health justice through transformative praxis in human rights, which we began to discuss in Chapter 5.

The World COVID-19 Unmasked Populism, Public Health Emergencies, and Democracy Historically, asymmetry in economic recoveries leads to political populism, and populism produces polarization and backlash. In the decade and a half following the 2008 global financial crisis, that is exactly what happened. Anti-elite backlash could be seen across the globe, in the global North and South alike, from Occupy Wall Street in 2012 to the “Yellow Vest” movement in France in 2018 to the mass protests against neoliberal austerity in Chile in 2019. These protest movements, and countless others, had their contextual particularities, but the common denominator was that the long simmering discontent of those left out of globalization had become a full-scale crisis of political authority. Populists found fertile ground in this atmosphere, manipulated this discontent and took full advantage of these crises. As Marti Koskeinnini asserts, populist backlash rejected the vocabularies and systems of knowledge held by professional and scientific experts, which were now being perceived as part of the problem, part of the reproduction of social hierarchies in the neoliberal world.7 Many of the conservative populists who were elected to power, from Trump to Bolsonaro, deployed anti-technocratic and anti-liberal discourse that simultaneously appealed to deep-seated grievances and reinforced tribalism. As these populists held themselves out as knowing the will of the people, dissent was increasingly stigmatized and criminalized, civic space for protest and independent expression was closed, and targeted repression of journalists and opposition activists proliferated both in countries with long histories of political repression and in democracies that were sliding toward illiberalism. The UN High Commissioner for Human Rights at the time, Zeid Raad al-Hussein, said in 2018, “Today, oppression is fashionable again, the security state is back, and fundamental freedoms are in retreat in every region of the world.”8



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Populism feeds on fear and othering, on the idea of someone taking away your money and status, against a backdrop of scarcity. Before the pandemic, populists were already stoking fear and loathing of otherness because it was easier to scapegoat immigrants and minorities than to address structural facets of the political economy. Conservative nationalists, from Trump to Bolsonaro to Orbàn, overwhelmingly challenged ideas of human rights and democratic inclusion that had been hard fought over these years (such as the rights of immigrants, racial justice, gender equality, and SOGI rights); they appealed to xenophobia and sought to reestablish the “common sense” of traditional family and gender roles in opposition to what they called “gender ideology”. Weronika Grzebalska, Eszter Kováts, and Andrea Pető argue that gender ideology had come to “signify the failure of democratic representation, and opposition to this ideology [had] become a means of rejecting different facets of the current socioeconomic order, from the prioritization of identity politics over material issues, and the weakening of people’s social, cultural, and political security, to the detachment of social and political elites and the influence of transnational institutions and the global economy on nation states.”9 Disputes over sexuality and gender identity issues often became smoke and mirrors hiding displacement of social anxieties over economic precarity.

Pandemics, Human Rights, and the Rule of Law If the pandemic was a stress test for democracies, which many countries failed, it was already evident that our ever-thinning institutional bulwarks did not protect us as we might have liked against populist rollbacks of liberal guarantees. In the climate of polarization—encouraged by populists and abetted by chasms of social inequality and disinformation spread through social and traditional media— reasoned debate about social policy based on shared empirical premises could not be sustained. In the US and elsewhere in the years preceding the pandemic, we saw this repeatedly with respect to questions ranging from immigration to climate change. For example, before the “Big Lie” about the 2020 US election and misinformation about COVID-19, Trump’s administration had lied about or eliminated empirical truths and scientific evidence: studies on the link between human behavior and climate change were removed from government websites,10 nutrition requirements for school meals were scaled back, and on and on. Prior to the pandemic, politics in many countries seemed emptied of substance, reduced to a “game of idolatry and marketing.”11 A significant number of people had grown so cynical about politics and the broken promises of politicians that

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they came to “believe everything and nothing, think that everything was possible and that nothing was true.”12 When the pandemic struck, this polarization and erosion of trust proved lethal. A number of comparative studies found that one of the most important predictors of how different countries fared during the pandemic was precisely this trust in the capacity of the government to provide accurate information and serve the common good.13 We can debate individuals’ choices, and the fault for deliberate disinformation about COVID-19 and more, but Juan was far from alone in his profound skepticism of the US health system, even well before the pandemic broke out. Some governments quickly closed borders and implemented lockdowns; some adopted digital surveillance to track the virus, often regardless of privacy concerns. Others adopted more laissez-faire approaches whether in the name of “keeping economies open” or preserving individual choice. While failing to adopt measures to protect population health and deflecting responsibility onto individuals are unacceptable under international law, we need to acknowledge that both kinds of responses revealed and aggravated the endemic plague of social inequality in many countries. That is, allowing the virus to rage disproportionately affected diverse, poor, and marginalized people who have the least access to health systems. However, lockdowns also disproportionately hurt the poor who live in overcrowded conditions, workers in informal economies, children who could not study on-line, and persons living with disabilities, among others. In addition to domestic constitutional norms, international human rights law had set standards in treaties and case law relating to states of exception and emergency, with additional clarifications being made by treaty-monitoring bodies (TMBs) during the pandemic.14 Yet, as COVID-19 spread across the world, then-UN High Commissioner for Human Rights Michelle Bachelet lamented in 2020, “Governments appear to be using COVID-19 as a cover for human rights violations, further restricting fundamental freedoms and civic space, and undermining the rule of law.”15 Across the globe, what Sharifah Sekalala calls the “tyranny of the urgent” exponentially expanded the slide into illiberalism. The unquestionable goal of containing COVID-19, cloaked in objective “scientificity,” enabled sweeping restrictions on freedoms of information, movement, privacy, assembly, and due process, and promoted repressive police enforcement that led to further abuses, while appalling conditions faced by people in detention during “normal” times became cruel and inhuman treatment as the virus swept through prisons and other detention facilities.



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However, we also learned from the pandemic that the wider socio-legal context and political culture turned out to be stronger factors in gauging the likelihood of abusive and neglectful human rights practices than formal derogations notified to the UN or declarations of states of emergency or exception.16 For example, both Hungary and Poland were already moving toward autocracy under their respective populist presidents Viktor Orbàn and Andrzej Duda. Although Hungary declared a state of emergency and Poland did not, both exploited the pandemic to further consolidate executive and personal power. Hungary under Orbàn adopted emergency legislation empowering the executive to basically amend any law in a way that was all but immune from legislative scrutiny; Poland under Duda adopted sweeping restrictions on human rights through executive decrees rather than legislation as required by the constitution for such broad limitations on fundamental rights. In both Poland and Hungary, as well as many other countries, restrictions were accompanied by a temporary closure of courts, or restriction of access only to limited types of cases, and they compounded pre-pandemic attempts to undermine judicial independence. Around the world, the pandemic’s toll on civil rights and the rule of law was grim. We need to ensure that the measures adopted during a public health emergency do not remain permanent fixtures of autocratizing states; at the same time, we need to understand that the forces driving illiberalism began before the pandemic, including the growing sense that our democratic legal and political institutions had failed us.

The Right to Health and Health Systems: Lessons from the Pandemic and Beyond Health Systems as Social Institutions: Power, Trust, and Knowledge As we have discussed throughout the book, social determinants of health and disease, including COVID-19, extend far beyond the health system—and are responsible for a much larger share of disease, and well-being, than medical care. Take Juan’s case: preventing the underlying cause of his Parkinson’s disease requires regulating chemicals used in agriculture, improving labor conditions, and implementing social protection measures to eliminate the need for parents to turn to child labor. Likewise, in COVID-19 Juan had both greater risk factors for severe disease because of his childhood exposure to herbicides and pesticides and greater exposure because of his job and his transportation. As mentioned in the Introduction, combatting these “fundamental causes” of ill-health that lie in

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axes of exclusion and persist across diseases and over time call for social, legal, and political remedies. Nonetheless, when health is understood as a legal right, the central institution designed to respect, protect, and take measures to fulfil personal and population health is the health system. As discussed in earlier chapters the right to health includes an array of freedoms and entitlements under international and domestic law; containing COVID-19 is only one measure of protecting a right to health. Yet, it is revealing that in many countries around the world, it was the same disproportionately disadvantaged groups at greater risk of COVID-19 exposure and severe complications who tended to have the least access to quality medical care in general. The pandemic brought far greater public awareness to the connections between health systems and the quality of our democracies. In the US, just as the Black Lives Matter protests have underscored that too often policing and criminal justice systems exacerbate patterns of racial and other discrimination in the overall society, so too have racial disparities in COVID-19 mortality exposed how the US health system plays a similar role.17 People of color not only died at higher proportional rates by age group; they were more likely to access care later or with more severe symptoms.18 Seeking care late reflects a lack of access due to geography, time, and finances, as well as histories of mistreatment and neglect of underserved populations. In addition to his daughter’s vaccine experience, Juan had undergone botched hernia and orthodontic surgeries, and he felt that his concerns and preferences had been dismissed repeatedly in both situations. In turn, Juan felt that his doctors wanted him to go away and so sought to treat everything with “pain pills,” which he had seen destroy the lives of people he knew. Juan understood all too well what the US epidemic of addiction meant in his heavily Latino town just north of Boston. “No todo es color de rosa [not everything is rosy] in the way this country deals with people’s health,” he said in an understatement. It was not irrational for Juan to be skeptical of a health system that had treated him poorly before, as a thing to be fixed, as a poor immigrant whose knowledge of his own body was deemed irrelevant to healing. Juan had a reputable doctor at a well-known research hospital in Boston, yet he felt the physician had not communicate adequately with him, and he did not have all the information he needed to make decisions about his Parkinson’s care. During the pandemic, it became brutally apparent that mere access to information is not sufficient to allow diverse people to have actionable health knowledge that they trust; it is relevant that the information be presented in a culturally acceptable manner and that they understand and are able to act on specific pieces



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of constantly evolving scientific advice in the context of their own lives. What does “social distancing” mean in an overcrowded apartment or a slum dwelling? In ordinary times, this is also the case: What does “feeling fatigued” mean to a person like Juan, who has worked bone-breakingly hard since he was a child? What does “avoiding stress” mean to someone who has little control over the sources of his stress? What does “eating healthfully” mean to someone who lives in a food desert and depends upon soup kitchens or food assistance programs? If health information should be accessible to and actionable by diverse individuals in a democracy, policy decisions based on health information should be justified to people who live with those policies. We have discussed how the unchallengeable knowledge of clinicians and scientists makes that difficult in conventional medicine, as well as the narrow scope of what is considered a “medical issue.” The use of artificial intelligence (AI) may aggravate that divorce in knowledge and power between operators and users of a given health or social protection system. Digital technologies that rely on artificial intelligence (AI) can extend primary care and improve diagnostics in health and can potentially streamline accessing benefits. Yet we should be wary of using AI without understanding its ethical and legal implications. in health and beyond. There is already evidence of disproportionate harms to disadvantaged and marginalized populations when such technologies are deployed in social protection and health systems. In population health, algorithms for modeling also make decisions less challengeable. We saw during the pandemic that competing algorithmic modeling got things wrong as often as or more than it got them right. The resistance to scientific advice we saw during the pandemic as well as during normal times— whether based on politicized misinformation or personal experience—cannot be solved by refining mathematical models to minimize bias or include additional variables. A fundamental lesson from this pandemic, which had been noted in HIV/AIDS, Ebola, and other pandemics, is that health decision-making needs to be made more participatory and representative, not less. There is now a vast literature on the imperative of greater community participation in infectious disease outbreaks, as well as in public health decisionmaking in normal times.19 The need for evidence-informed deliberative processes in health priority-setting is rooted in the same fundamental idea that underpins all of human rights, namely that we are equal moral subjects with dignity, in all our diversity, and we are therefore entitled to have a say in decisions that have an impact on our lives. As discussed in Chapter 6, guidance from treaty-monitoring bodies and other groups plays a critically important role, for example, that every health system

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should provide available, accessible, acceptable and quality health facilities, goods and services has been critical in assessing policies. However, there is no such thing as a monolithic human rights–based approach that can dictate a universal answer to the infinite number of questions about health policies and priorities—during a pandemic or during ordinary times. Think of the complex ethical and political questions regarding priorities for vaccine, ventilator, or oxygen allocation in specific contexts, or weighing COVID-19 containment against other health priorities such as malaria, TB, and noncommunicable diseases. Or consider the broader policies determining school closures for widely varying populations as both the pandemic and available pharmaceutical interventions evolved. Likewise in ordinary times, health systems constantly manage competing priorities. How much funding should be allocated to severe conditions like Parkinson’s versus far more prevalent conditions that are cost-effective to treat but less debilitating? How do we make trade-offs between conditions or between areas, such as mental health and reproductive health? How much should we care about reducing absolute numbers of disease cases or the overall burden of disease more broadly versus ensuring equity for populations suffering historical discrimination? There is no wishing away these infinite choices by invoking a mantra that health is a right. Setting up fair choice situations based on diverse persons’ equal moral worth is the task of justice and a precondition for a meaningful right to health. Just as we witnessed people cutting queues for vaccines or care in many countries during the pandemic, failing to make trade-offs in practice invariably means capitulation to market forces and privileges conferred by social status and connections. Applying human rights in health calls for democratizing priority-setting and broader health policy-making whereby decisions that affect our lives are not left to the market nor taken behind closed doors by “experts.” To be clear, we are not talking about citizen participation in the appraisal of scientific data or in choices about individual cases; “evidence-informed deliberative processes” call for participation in selecting and ranking the criteria for decisions that can easily end up having life-or-death implications. These criteria include many of the human rights principles we have discussed throughout the book, such as transparency of both normative rationales and empirical uncertainties that permit people to understand and question specific decisions. Second, rationales should be justified based on acceptable reasons and objectives, such as formal and substantive equality—not ideological or discriminatory views that reinforce stigma or exclude populations (LBGTQ+, say) or services (e.g., abortion). Third, there should also be possibilities for revision based on changes in situations or negative experiences from specific individuals or groups. Fourth, for there to be



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accountability, rights-holders need to be able to claim their rights, which requires enforcement/regulation of decisions and the conditions for fair process.20 As discussed in Chapter 6, meaningful participation in priority-setting or in broader health decision-making processes calls for measures to promote equal voice and authority within those processes. Moreover, this is key: health ­decision-making cannot devolve into a technocratic process that elides the power asymmetries that exist in health systems and the overall society. Meaningful democratization requires making visible how the issues are framed in legal and policy analysis, including structural forms of subordination that invariably affect distributions of (ill-) health but would not be considered necessary for legitimacy in ordinary priority-setting. It is only when structural discrimination and other factors are identified that laws and policies can begin to dismantle them.

Human Rights Perspectives on Financing for Health Justice; Financing Health and Development in the SDGs The pandemic revealed starkly the eviscerating impacts on ESC rights of increasingly constraining macro-economic architectures that had hollowed out fiscal space, and subjected many areas of health to decades of neglect and underinvestment. Normative parameters for health and other ESC rights were widely ignored during COVID-19: limitations on ESC rights were imposed without legal sanction as is required under international law; retrogressive measures (backsliding) affected marginalized populations disproportionately; and the extensive list of “basic obligations” set out in General Comment 14 were frequently set aside. Learning from the pandemic calls for reconsidering the relationship between ostensibly “core obligations” and obligations subject to the progressive realization we discussed in Chapter 5. We also need to reimagine the state dialogues with supra-national bodies to better enhance external accountability for both ESC and CP rights protections during long-lasting and evolving emergencies. Above all, COVID-19 has shown that transformative praxis in human rights needs to pay keen attention to the financing of the infrastructure to deliver health rights, along with legal frameworks. In its 2021 report, the WHO Independent Panel on Pandemic Preparedness concluded: “There was much more freedom to act, and more choices were available in those places where a robust and resilient health system existed, where social and economic protections were solid, and where governments, scientists and citizens trusted each other to do their best.”21 Solidarity cannot merely be invoked during crises; it is built over time and evidenced through long-term financial investment. Progressive taxation is the

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fairest and most efficient means of achieving pooled public funding for universal health systems, or any other institution that is considered part of the social contract. Progressive taxation is fundamental to all human rights; it is through taxation that the state demonstrates equal consideration for every person’s moral value. When public health systems are starved for resources and reduced to poor care for the poor, the state is in effect disregarding diverse people’s equal dignity. In health, progressive taxation facilitates policy leverage, democratically legitimate priority-setting, and greater equity in access and outcomes. Private health insurance markets do not just deflect many costs onto individuals and create smaller, more fragmented resource pools. As we discussed in earlier chapters, privatization of responsibility to pay goes hand in hand with privatization of responsibility for staying healthy and the stigmatization of “preexisting conditions” such as obesity and associated chronic conditions. Private health-care debt was already the largest contributor to personal bankruptcy in the United States before the pandemic. As we have discussed throughout the book, basing access to care on people’s ability to pay is antithetical to a right to health. The pandemic underscored that, highly privatized systems entrench inequity and system-wide inefficiency and present barriers to equitable governance. Health financing schemes based on cross-subsidies from those formally employed to others also fragment pools and magnify underlying structural inequalities. Moreover, as flexibilization of labor and the gig economy have increased the so-called informal sector, such schemes have grown increasingly less viable. In Colombia the T-760/08 decision discussed in Chapter 6 called for equalization of contributory and subsidized health regimes as a matter of realizing a universal right to health. However, the fundamental issue of financing that relies on expectations of formal employment remains a major barrier to sustaining Colombia’s health system, which came close to collapse during the pandemic. In many sub-Saharan African countries, where formal employment is even thinner and national budgets are tighter, the lack of financing for newly rolled-out social insurance schemes has led to detentions of patients in facilities when they fail to pay bills. Depending on how they are structured, federalist systems can also create inequities in financing and in turn in the enjoyment of health rights in practice. If the way health is financed matters to promoting equality, so does what we pay for. Health systems are not just apparatuses for the delivery of individual services; they are social institutions that uphold the common good of population health and well-being. The WHO Council on the Economics of Health for All states: “Rather than invest in healthcare industries and regulate the market to



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realize important but marginal and often unequal gains for health, we must first set ourselves ambitious goals to achieve Health for All and then work towards the goals by designing financial architecture and an economic system that can deliver on this mission.”22 To achieve Health for All, robust investments in universal public health measures and primary care systems that allow for relationships with the communities they serve are essential. Referral networks and access to more complex care is critical, but health systems based on highly specialized medical care is both inefficient and inequitable. Primary care, with community input, should be the backbone of any health system in low- and high-income countries alike. Neither contact tracing in a pandemic nor long-term care for chronic conditions during ordinary times, including mental health issues, can be achieved without building trust between the providers and users of health systems. Likewise, from a human rights perspective health workers are not merely instrumental cogs in a technocratic apparatus. The advancement of health rights untethered to institutional arrangements that guarantee workers’ rights is misguided at best and deeply cynical at worst. Funding for staff salaries at every level of the system and collective bargaining for workers’ unions should be nonnegotiable in health systems organized around rights. Health-care workers’ salaries are perpetually underfunded in neoliberal economies that have promoted flexibilization of labor regimes, and we saw the effects of that systemic underfunding reflected in burn-out, staffing shortages, and lack of personal protective equipment during COVID-19. As we discussed in relation to the forced sterilizations in Peru, so-called performance- or results-based financing, which ties financing to specific outputs, can produce gross violations of labor rights as well as harming patients during ordinary times. Finally, a human rights perspective also shifts our understanding of the universe of people who are entitled to health, goods, and services. For example, under human rights law refugees and migrants are entitled to essential health care and emergency care regardless of immigration status. 23 During the pandemic, migrant workers in India had among the highest death tolls in the country. Refugees fleeing across borders faced even more dire situations. Closed borders, lack of funding, and unjustified changes to asylum policies produced “an unconscionable toll” of COVID-19 deaths at the US-Mexico border.24 These needs did not suddenly emerge during COVID-19; years before the pandemic and before Russia invaded Ukraine, inequality and instability—fueled or worsened by climate change in many countries—coupled with tyranny and conflict, had created the largest migration crisis since the Second World War. By 2016 there

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were almost 80 million refugees worldwide,25 a population larger than that of three-quarters of the countries on the planet. If the pandemic did not cause these intersecting crises, it has underscored the reckless myopia, as well as a denial of rights, of not providing care to migrants and refugees when infectious diseases do not respect borders. It is unquestionably true that governments failed to live up to these and other human rights standards related to health and other ESC rights during the pandemic.26 A major lesson from COVID-19 is that even when health and other ESC rights obligations were assumed under international law and enshrined in constitutional law, the reality is that in many LICs and LMICs there simply was not enough state capacity or fiscal space to mobilize the resources required to achieve anything like comprehensive public health or UHC. For thirty-four LICs alone, the annual external financing gap in health before the pandemic was estimated to be USD 50 billion and is now far more.27 If the right to health is to be more than a palliative sufficiency guarantee in countries across the global South, the pandemic left no doubt that we require increased cooperation, especially multilateral cooperation, for public health and health systems. The principle of international cooperation is set out in many human rights documents, including the UN Charter and, as discussed earlier, the UN Covenant on ESC Rights includes obligations of “international assistance and cooperation.” Yet it remains an unenforceable obligation, and aid is treated as politicized charity in practice. In 2017, only six countries met the paltry aspiration of 0.7 percent of GDP for official development assistance (ODA).28 After years of the pandemic, the transformational promise of the SDGs to “leave no one behind” came to seem like a cruel joke. Just as it had been in the UN conferences of the 1990s, the participation of civil society had been critical to the final outcome document of Agenda 2030, which set out a vision of “universal respect for human rights and human dignity.”29 Further, the agenda was explicitly “integrated and indivisible,” as the Vienna Declaration and Programme of Action in 1993 and other documents had reaffirmed with respect to human rights. “Sustainable development” explicitly encompassed economic sustainability, environmental sustainability, and social sustainability. However, the aspirational goals of the new development framework were severely limited by its financing structure, and the effects of that structure became all too apparent during COVID-19.30 So-called “blended finance”—which was sold by IFIs as a mechanism to incentivize private investment and open access to capital markets for low-income countries—was supposed to generate the trillions of dollars needed to implement the SDG agenda. But that proved illusory.



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In 2020, at the beginning of the pandemic, the International Monetary Fund (IMF) and the UN Conference on Trade and Development estimated that approximately USD 2.5 trillion would be needed to support health system and related economic recovery in developing countries over the next decade.31 That money was to come from debt cancellation, “special drawing rights” to supplemental reserves held by the IMF for member countries, and a “Marshall Plan” for emergency health services and related social relief programs. But faced with inflation and domestic needs, despite the devastation of the pandemic many northern governments quickly began trimming aspirations and slashing global aid budgets, setting the stage for further austerity and cycles of population misery and populist backlash.

Global Governance for Health: Frameworks, Actors, and Power Dynamics Just as national governments had lost legitimacy by the time the pandemic struck, so too had the institutions of global governance for health, including the WHO and the UN. A survey just before the pandemic found mistrust in the global order driven by “a growing sense of inequity and unfairness in the system.”32 And just as private actors with economic power had come to yield outsized influence in national politics, so too had they increasingly influenced global governance long before the pandemic. Because governments were increasingly unable or unwilling to invest in health as a global good, private philanthropies such as the Gates Foundation had taken on far more prominence in the governance of global health since the UN Compact was established in 2000, as discussed in Chapter 5. By the time the pandemic struck, only 16 percent of the WHO’s budget had been assessed as contributions from member states; the rest had been assigned to pet projects. By 2013, the Gates Foundation had become the second largest donor to the WHO, surpassed only by the US government.33 As Devi Sridhar and Chelsea Clinton write, “the role that the Gates Foundation plays in global health as ‘principal’— which has generally been reserved for governments that dictate to global institutions, who are the ‘agents’—shifts the goalposts around democratic governance that international organizations inevitably contain.”34 The outsized influence of the Gates Foundation played a determinative role in how the COVID-19 pandemic was addressed. Global public investment in the basic science of vaccines as well as in incentivizing private research and development through the Coalition for Epidemic Preparedness Innovations (CEPI) was a huge success as life-saving vaccines and therapeutics were

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developed in record time. Yet when it came to sharing the fruits of that scientific progress, the Gates Foundation early on tipped the scales away from the COVID-19 Technology Access Pool (C-TAP), a WHO-led initiative for the sharing of data, know-how, biological material, and intellectual property (IP) to support low-cost production and expand the supply of medicines, vaccines, and diagnostics.35 Instead, Bill Gates personally and the foundation supported the ACT-Accelerator (ACT-A), which merely pooled patented vaccines, diagnostics, and medications donated by wealthy countries.36 ACT-A and its vaccine arm, COVAX, were resounding failures, unable to achieve even paltry aspiration of 20 percent vaccine coverage for low-income counties (LICs) and low-middle-income countries (LMICs). Gates also weighed in against the need for a waiver of IP rules. The TRIPS waiver finally agreed to at the WTO Ministerial Conference in June 2022 was extremely limited and only addressed COVID-19 vaccines. Hardly resembling what India and South Africa had originally proposed, the temporary waiver essentially reinforced rights to issue compulsory licenses, allowed pricing to be set voluntarily by pharmaceutical companies, and called upon countries with manufacturing capacity not to avail themselves of the waiver—the exact countries most likely to create mRNA hubs. As of this writing, activists around the world, including Partners In Health and the People's Vaccine Alliance, continued to press for a more expansive and permanent waiver. These advocates adopted networked strategies and shared information intensively, and many engaged in creative acts of resistance in front of the homes of pharmaceutical magnates as well as government offices, drawing on previous advocacy experience by HIV/ AIDS activists. However, the debacle of COVAX, coupled with the opacity and perceived illegitimacy of the WTO negotiations underscored the imperative of revamping the global trade regime. If philanthro-capitalist and corporate investment had distorted global governance for health from the inside well before the pandemic erupted, it had become impossible to ignore the role of TNCs in shaping global governance rules for trade, tax policy, regulation, and global markets from the outside. The 2014 report from the Lancet–University of Oslo Commission on Global Governance for Health had coined the term political determinants of health for the “norms, policies, and practices that arise from transnational interaction.”37 Emphasizing that the capitalization of TNCs in industries that directly affect health “dwarfs most national economies,” the commission noted that TNCs’ power to capture the political processes of legislation and regulation overwhelmed many



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governments.38 Only 0.1 percent of the world’s firms are TNCs, but they account for 50 percent of global trade and 10 percent of the world’s GDP.39 Transnational pharmaceutical monopolies are not alone in profiting from pain.40 Think of the profits of Big Tech based on lethal plagues of disinformation. Or consider the global food system, which Raj Patel describes as “engineered to create a world of increasing hunger and obesity” and which had “been driven into overdrive” by the 2008 global financial crisis.41 World food supply had become dependent on agro-conglomerates and chemical companies, such as Monsanto, and on the vicissitudes of commodities speculation. The combination of the pandemic, Russia’s invasion of the world’s breadbasket, and increased oil prices for food transport, brought home the risks of mass famine and starvation in a food system created in a world where some are stuffed, others starve, and still others, like Juan, are poisoned. With widespread antimicrobial resistance stemming from misuse of antibiotics in animal farming, to an epidemic of chronic diseases of lifestyle, to epigenetic changes in DNA from “forever plastics” and chemicals such as glyphosate, we are inducing intergenerational impacts on health through our pathogenic global food system—impacts that we will not fully understand for decades. Commercial meat cultivation and other farming practices also drive deforestation, which accelerates climate change. Understanding these trends in the global economy as interrelated is critical to moving forward. Indeed, the pandemic raised serious questions about the narrowness of the global health law framework in place to govern public health emergencies. As we cannot prevent future pandemics and climate-related health emergencies without addressing the drivers of climate change, multiple institutions and scholars began calling for a “One Health” approach42 in a future pandemic treaty—to address human, animal, and planetary health. As discussed in Chapter 5, the International Health Regulations (IHR) that were in effect during the COVID-19 pandemic were adopted by the World Health Assembly (WHA) in 2005 in part because of failures of coordination and cooperation during the SARS pandemic. The IHR (2005) were intended to “prevent, protect against, control, and provide a public health response to the international spread of disease [while avoiding] unnecessary interference with international traffic and trade.”43 As discussed in Chapter 5, numerous scholars acknowledge that the IHR (2005) smack of colonialist selectivity regarding what “extraordinary” circumstances define a Public Health Emergency of International Concern (PHEIC), and that the focus on crises that affect the economic North obscures the need

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to strengthen health systems to address diseases that disproportionately ravage the global South, such as malaria and tuberculosis. Increasingly, there is also greater recognition that the one-size-fits-all approach adopted by the IHR (2005) for reporting of detected pathogens (which not all countries did), and notifying the WHO of any “additional measures” they adopt in response to pandemics, is problematic. During the pandemic, the science—transmission (aerosol versus droplets), incubation period, and effectiveness of nonpharmaceutical interventions (different masks)—evolved constantly.44 Moreover, the pandemic continually changed, affecting countries differently. Thus, it should not surprise us that the overwhelming majority of countries that notified the WHO of their adoption of “additional measures” under the IHR—mainly concerning travel bans and movement restrictions—justified their actions on the basis of precaution, rather than scientific evidence, as called for under the IHR. The principle of precaution has been used by courts to demand greater action to cut carbon emissions now because waiting could produce irreparable results. The same might be said about waiting to limit cross-border travel if we do not understand a certain disease and have no vaccine or therapeutics. Two high-profile reviews of the pandemic response led by independent experts were forceful in denouncing the IHR’s lack of provision for the urgency of pandemic response, including precautionary measures.45 Of course, precaution needs to be justified or it can easily end up cloaking autocracy, as occurred widely during COVID-19. However, the pandemic exposed the need to reimagine a global health regulatory framework that more accurately reflects the different situations faced by diverse countries. Further, it highlighted that under the conditions of radical uncertainty we witnessed during COVID-19, which are likely in future pandemics and climate-related emergencies, evidence-informed deliberative processes are especially critical to take decisions that are perceived as necessary, proportional, and democratically legitimate. And, as we’ve discussed, meaningfully participatory processes cannot be stood up during emergencies and expected to inspire public trust; they must be institutionalized, tested, and refined in ordinary times. In short, long before the pandemic it was clear that global governance for health—from global health law and trade regimes to the power of TNCs to financing for global institutions—was far from a set of neutral arrangements. Global governance arrangements developed in the post- World War II era had come to reify historically rooted patterns of power and privilege across states and increasingly nonstate actors—with life and death effects in ordinary times as well as during pandemics.



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Global Health Justice: Looking Ahead As noted in Chapter 5, well before the pandemic there was significant debate as to how to address global health (in)justice and the role of human rights in doing so. Everything we have learned from COVID-19 reaffirms that transformative human rights praxis in health must consider not just actions by national governments but also cooperation between countries and structural inequities embedded in the global order, as well as considering reparative justice for historical wrongs.

National Laws and Policies We cannot think about global health justice without considering national laws, policies, and politics that respect the human rights of people within territories. Full stop. Jair Bolsonaro bears significant responsibility for Brazil’s stunning death toll during the pandemic.46 The death tolls from China's abrupt about-face in 2022 from its “zero Covid” policy must also be laid at the feet of the Chinese government. Other governments, such as Myanmar’s, are guilty of blatant discrimination in their COVID-19 responses, for which they should also be held accountable.47 One, North Korea, failed to vaccinate its entire population before a major outbreak in 2022. At all times, not just in pandemics, discrimination and other abuses with respect to social determinants of health as well as care affect population health within countries and in turn inequalities between countries. As discussed throughout these chapters, such discrimination can be formal discrimination in laws and policies. However, it can also be substantive discrimination that results from laws that may appear neutral on their face but disadvantage certain populations in practice, or structural discrimination that arises from institutional arrangements, including budget formulations and allocations

Global Cooperation: Knowledge Sharing; Funding and Governance To advance global health justice, and begin to decolonize global health, we need to change the rules of the game for sharing knowledge during pandemics and ordinary times. Sub-Saharan Africa and the rest of the global South cannot be reliant on the capricious beneficence of wealthy governments. Manufacturing of vaccines and medical countermeasures need to be decentralized, but knowledge sharing is also key. The UN Committee on ESC Rights has called for different benefits derived from scientific progress to be shared, including not just the “the material results of the applications of scientific research” but also “scientific knowledge and information directly deriving from scientific activity.”48More concretely,

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James Love, founding director of Knowledge Ecology International, notes that governments should commit to terms in any future pandemic instruments and funding agreements “that would guarantee the ability to perform a technology transfer of all of the inputs needed to enable generic manufacture of any useful countermeasures.”49 Since COVID-19, we have already seen the need to share vaccines and countermeasures for Mpox (formerly known as monkeypox). There will always be new diseases. Second, as discussed earlier, LICs and LMICs require massively increased funding to sustain robust health systems, which are the best prevention against pandemics as well as fundamental institutions in democratic societies. Some scholars emphasize reinforcing obligations of “international assistance and cooperation” through a pandemic law-making exercise, with core obligations stemming from General Comment 14 relating to health.50 Others, acknowledging that that would reinforce the crisis -driven perspective of current global health law, have proposed a Framework Convention on Global Health (FCGH).51 There is as yet no draft of a FCGH, so it is impossible to say what social demands would be enshrined in such a legal instrument. But in both cases there is a risk with embedding obligations of international assistance in a treaty or in a FCGH of limiting the issue of global health justice to questions of inter-governmental financial transfers and neglecting the underlying and historically rooted structural determinants of health injustice. As Leigh Haynes and colleagues have written, “Such neglect would help to legitimize an unjust and unsustainable global economic regime.”52 Reliance on international assistance alone smacks of colonialist amnesia and reduces “health equity” to a palliative charitable measure rather than a tool for global justice.53 During the pandemic, the IMF lent over USD 165 billion to eighty-three countries in 2020 alone.54 Given what we have seen of the connections between austerity, inequality, and autocratic populism, it is unthinkable that the world seems poised to go down the road that we did after the 2008 financial crisis with further cuts and austerity measures. Moreover, recall that rising interest rates in the US affect governments across the world that have to repay debt in US dollars and are subject to stark restrictions on their monetary and fiscal policy options. In the short term, wealthy governments and IFIs have the power and tools to directly cancel debts and incentivize debt cancellation by private actors—and it is in their interest to do so. If the G20 had canceled all the debt payments of the most heavily indebted countries in 2020, it would have freed up USD 40 billion for pandemic response. Beyond the short term, we need a model of development financing that devolves power among countries. As Olusoji Adeyi argues, “endless cycles of



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strategically ineffectual foreign aid for basic health services and commodities are counterproductive for two reasons. First, they infantilize African leaders and absolve them of responsibilities to their citizens. Second, they prevent African countries from developing and using their own ‘muscles’ in the form of institutions, accountability, and voter-sensitive pacts with their citizenry.”55 Like Peru, Argentina and other countries discussed throughout the book, Africa is not alone in being trapped by structural dependency. It is past time for a new paradigm based on common goals and shared governance to address the intersecting health, social inequality, and climate challenges the world collectively faces.56 It will be challenging to change development cooperation models more broadly for a post–2030 Agenda. The Global Fund for AIDS, TB and Malaria, with its Country Coordinating Mechanisms discussed in Chapter 5, shows us how such a shared governance model might look. However, devising broader platforms to tackle climate finance; global health initiatives; and other needs we have discussed here, such as social protection floors, calls for experimentalist strategies. That is a good thing; pilot exercises should allow contextualization and continuous refinement of governance and accountability mechanisms. Just as the narrative of development was wrenched from the club of donor countries in the SDGs, so too can the framework for financing development begin to be shifted from an obsolete North-South charity paradigm to one based on global and regional public investment in the post 2030 agenda that will be the successor to the SDGs. Just as at the national level, in addition to changing the nature of financing for development, achieving global health justice calls for changing what is financed. The WHO Council on the Economics of Health for All concluded in a 2021 report that “at all levels, we need to invest in common platforms that can serve as the foundation for addressing and staving off current and emerging health threats. Reorienting global health efforts towards a system-building perspective requires a multisectoral approach to health that must involve representatives from across public sectors, as well as citizen and community engagement.”57 In these multisectoral efforts, the human rights community should play an important role in building “understanding of our common identities and interconnected fates.” 58

Addressing the Political Determinants of Health, Including Reining in TNCs It is critical but insufficient to change development cooperation if we seek to reduce structural dependency between countries. As we have seen in examples throughout the book, the political economy of global health today is deeply

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shaped by legal rules and informal practices for multinational taxation, intellectual property, and trade rules, among others, that have been constructed over decades. These legal regimes have privatized huge percentages of wealth and have extracted wealth from the global South to TNCs in the North. As Jason Hickel writes, the global South’s wages have been kept artificially low to facilitate wealth transfers from South to North: “Unequal exchange represents a loss for the South. But it is not a loss relative to exclusion from the worldeconomy; rather, it is a loss relative to an alternative world of fair-trade. . . . If the North’s monopoly power were dismantled, the South’s capacity to finance development would likely be even greater.”59 On top of suppressed wages, crossborder tax evasion is a form of “illicit financial flow” from South to North, which includes other forms of “transfer pricing.” For example, mispricing of US pharmaceutical patents using so-called intangible assets (e.g., patents) creates hundreds of billions of dollars in tax vacuums a year by transferring patents to subsidiaries in tax havens, where the parent company is then “charged” a high price to use its own asset.60 These rules can be changed, just as they were constructed through legislative and regulatory shifts beginning in the early 1980s. There is nothing natural about tax rates on corporate earnings or international financial transfers, for example. There is more money in the world today than ever before; but we need to reclaim it for public spending and common endowments. Human rights activists have begun to resist the power of nonstate actors that poses barriers to ESC rights in the global South, including the right to health. The 2011 Maastricht Principles on the Extraterritorial Obligations of States in the Area of Economic, Social and Cultural Rights (Maastricht III) illuminated the importance of state obligations with respect to transboundary effects on ESC rights, or extraterritorial obligations (ETOs)61 A current extension of the Maastricht Principles (Maastricht IV) being developed through consultation seeks to expand domestic and extraterritorial obligations of states regarding impacts on future generations’ rights as well. ETOs offer one method for extending causality and responsibility beyond the artificial boundaries of the nation-state in an inexorably globalized world. In addition to general obligations of international assistance, states have widely enshrined obligations under international law to do no harm through actions or inactions. Those obligations apply to direct actions or omissions; joint actions through multilateral institutions; and actions committed by private actors over which the state “exercises authority or effective control.” For example, states exercise effective control over TNCs headquartered in their territory despite the TNCs’ activities being carried out elsewhere. ETOs exist when “acts or omissions



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bring about foreseeable effects” on the enjoyment of ESC rights, whether within or beyond its territory and in which the state, through any of its branches, “is in a position to exercise decisive influence or to take measures to realize” health and other ESC rights.62 There have been effective legislative attempts to control TNCs, such as the US Foreign Corrupt Practices Act of 1977 and similar initiatives in other countries. There is no reason such legislation cannot be extended coherently to profiteering and harmful activities of TNCs that violate human rights norms. Recent litigation brought where TNCs are headquartered have involved failures to regulate extractive industries that destroy the health of vulnerable populations as well as the environment, and failure to prevent TNCs headquartered in their country from labor practices that are grossly abusive. A consensus statement from leading international legal scholars during the pandemic underscored the responsibilities of governments to incentivize different vaccine pricing and access schemes by the pharmaceutical companies headquartered in their countries to protect public health over profits.63 There is now intense activity around drafting treaties that would address the obligations of TNCS and other business entities and establish rules governing international taxation of TNCs and other entities. Further, the UN Committee on ESC Rights, the UN Committee on the Rights of the Child, the UN Committee on the Elimination of All Forms of Racial Discrimination (CERD), and the UN Human Rights Committee have all referenced extraterritorial obligations.64 Cases have also been brought in domestic courts, including those in Germany and Holland, where ETOs have been extended to greenhouse gas emissions. Curbing the asymmetrical power deployed by TNCs will also call for experimental, networked social mobilization and creative extralegal human rights strategies, as well as further legal frameworks and rulings from judicial and supra-national forums. Take for example the role of TNCs in the coffee industry that produced the unlivable wages, child labor, and dangerous use of herbicides and pesticides in Juan’s case. Bringing litigation against the government of Guatemala may not be as effective as campaigns, such as Oxfam’s, that target supply chains and consumer behavior in places where those TNCs operate.

Reparative Justice Finally, looking ahead to a world of global health justice requires understanding the history that we have inherited, and from which some of us have systematically benefited. Reparative justice in this sense goes beyond remedies of restitution, satisfaction, and guarantees of nonrepetition. Take Juan’s case: his health and life

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were deeply shaped by centuries of colonialism in Guatemala, where the Spanish subjugated the majority Mayan population, as well as by US imperialism and Cold War politics. After Jacobo Arbenz’s administration began expropriating United Fruit’s unused lands—the quintessential example of neocolonial capitalism—to give it to landless peasants, a CIA-backed coup installed a probusiness military dictatorship and for close to forty years Guatemala was ravaged by a bloody civil war. If as Eduardo Galeano wrote, Guatemala was the clumsily masked face of US policy in Latin America, it was a face that created genocidal violence against the largely Mayan rural inhabitants. This imperialistic profiteering left the country and region bruised and battered in the wake of violence and ungovernability that is still affecting people across Central America—and creating an exodus of migrants today. If we took seriously the need for the US’s historical responsibility for what was done to Guatemalans like Juan and other Central Americans, we could no longer discuss immigration as a “crisis” or an “invasion” by foreigners. We would need to reframe it in terms of reparations for the ravages of imperialist extraction and violent conflicts underwritten by the US. As discussed throughout this book, that process of reframing misfortune as injustice is critical to advancing health and social equality. What if we go back further to centuries of colonial pillaging of the indigenous lands and wealth in Central America, Mexico, and elsewhere? For example, Olusoji Adeyi asserts that “many countries of the Global North built their wealth by plundering Africa. For those countries to atone for that plunder, they should pay straightforward reparations to the treasuries of the people whose flesh and wealth they stole.”65 Eugene Richardson and colleagues, and other scholars, suggest both monetary compensation and symbolic reparations as part of reparative justice to Blacks within the United States.66 As we have discussed throughout the book, causality is key to establishing legal responsibility. And no doubt these proposals raise complicated issues of causality, as well as both design and implementation. For example: How do we tease apart what merits reparations after decades or even centuries have passed? How do we identify the universe of people for whom compensation is owed? How do we assess the adequacy of compensation for a given action from a specific government or set of international actors? If compensation is paid to a specific government, how can we ensure that it contributes to the common good in that country instead of lining corrupt officials’ pockets? How can we make sure reparations, whether monetary or symbolic or both, lead to systemic change and are not merely one-off gestures?



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Notwithstanding its complexities, the aim of reparative justice is not unrelated to establishing a future with global justice. For example, high-income countries have produced 90 percent of the greenhouse gas emissions dating back to industrialization, which produced great wealth for them and for which other countries are now suffering immense loss and damage. Keeping a focus on historical debts underscores that development cooperation is a matter of justice, not charity. The compounding costs of inaction in health, economic, and environmental inequities link directly to the imperative for a right to development and reimagining a new global economic order that is suited for the 21st century. It is only by understanding the deeply historical roots of complex social problems that we can begin to devise the necessary policies and long-term actions needed to promote true global health justice.

In February 2019, I was in Costa Rica, a small middle-income country in Central America known for eliminating its armed forces in 1948. Costa Rica has set aside approximately a quarter of its territory under some level of protection for rain forest, undeveloped lands, marine reserves, and so forth; has abolished all extraction industry; and has become one of the first countries in the world to be carbon neutral. Of course, this tiny country’s admirable policies to mitigate the climate effects of its dependence on foreign tourism would not protect it from rising sea levels. Nor, in our interconnected world, would its commitment to biodiversity protect it from the ravaging effects of invasive frog and other species brought from abroad. I was in San José for the first-of-its kind transdisciplinary symposium on a rare disease, hereditary angioedema (HAE). HAE, estimated to affect approximately 1 in 50,000 to 1 in 250,000 people worldwide, is difficult to diagnose and therefore its reported prevalence is likely too low.67 Caused by several genetic mutations, it expresses itself in uncontrolled inflammation caused by physical pressure or stress or seemingly nothing at all. HAE patients are at risk of severe complications from COVID-19, as well as attacks triggered by COVID-19 infection. Wherever HAE manifests, physicians tend to treat it as an isolated inflammation—appendicitis, an anaphylactic reaction to food, an insect bite on the arm or leg. When it affects the larynx, people can asphyxiate. Patients lose days of work and school and are often subjected to unnecessary and damaging treatments (such as removal of parts of the intestine or appendectomies) as a result of inaccurate diagnoses. The latest treatments can prevent episodes and transform HAE patients’ lives; even with the older but standard treatment in Europe and the US, the disease can

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be managed. But in Costa Rica, per capita health spending is approximately USD 1,200 per year. At the time, a single dose of the standard medication cost more than USD 3,000, and patients may need five, ten, or even more doses per year. Costa Rica is a middle-income country with an enviable publicly funded universal health system emphasizing primary care and systematic priority-setting. International assistance would not help HAE patients in Costa Rica. However, adjusting intellectual property rules or incentivizing pharmaceutical pricing practices through the FDA’s regulatory approval of treatments for rare and neglected diseases could. I had met with the self-organized group of parents of HAE patients, and patients themselves, the day before the forum. Without access to treatment, these patients found themselves repeatedly in the emergency room, subjected to intrusive procedures, living in terror of each attack—dramatically limiting quality of life for themselves and their families. Leticia, a strikingly lovely young woman, showed me photos of herself experiencing an attack, with facial swelling that made her entirely unrecognizable. She told me through tears how hard it was for her to see herself that way. Recently married, she desperately wanted to have children but was unsure about the effects of hormones in pregnancy or whether she wanted to bring a child into the world who would suffer as she had. At the forum, health authorities displayed callous disregard for to the patients’ suffering; one technocrat imperiously recited cost calculations and told the patients that the collective good outweighed their needs. A human rights lawyer argued that the HAE patients should take their case to the Inter-American System to force the government to pay for the costly medications if domestic litigation did not work. I suggested a different way of thinking about what a just health system demanded. Arguing for the costly treatments to be included in the formulary as a matter of health rights would be inconsistent with formal equality and systemic equity because it could not be universalized and would benefit a very small number of people. However, at the time the Costa Rican health system was doing iatrogenic harm in clear violation of the patients’ right to health. Among other things, I noted an existing diagnostic screening test could be made available so that patients would not be continually subjected to harm from the system entrusted with protecting their health. Understanding the implications of their diagnosis would allow them to take control over their bodies and lives, through diet, stress management, and so forth. Having actionable information was their right. Further, there was a clear imperative for a horizontal dialogue between health system officials and HAE patients at every level, from the reasoning used by the health system to exclude treatments to the evidence



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for nonpharmaceutical strategies to the possibility of training for providers at selected facilities to prevent iatrogenic harm. Since this symposium there have been further discussions with patients and movement toward making the diagnostic test available in Costa Rica for the first time. Doing so would not resolve the structural injustice in pharmaceutical pricing and access between countries; it would not even ensure all the care HAE patients might need in an emergency. Nonetheless, as much as we need a comprehensive analysis of what health justice requires, that cannot paralyze us from taking immediate actions that will make meaningful differences to people’s well-being in practice. The message from this book is that meaningful progressive change in health rights requires iterative actions, which are neither utopian (as these often lead to fatalistic despair) nor trivial (as these ignore or reinforce structural constraints). In this case, including diagnostic tests in the health system would permit an accurate registry of patients, reduce enormous amounts of suffering due to medical error, and potentially save lives. That matters. And far from conceding anything about the status quo, increased involvement of HAE patients as their own “experts” and incorporation of more diagnostic tests can potentially trigger a Lorenzian “butterfly effect” that leads to greater awareness of the way the health-care system is meeting diverse populations’ needs, and the role of pharmaceutical pricing set by TNCs headquartered elsewhere in relation to “rare and neglected” diseases. My presence, together with that of regional experts in the disease, may have catalyzed the intersectoral meeting. However, the key was that the HAE patients were speaking for themselves, meeting with policy-makers, and making their voices heard not as pitiable victims but as citizens asserting rights. They were inspiring not just in their daily struggle to live with this debilitating disease; they were inspiring because they were seeking structural change. As we have seen in so many cases throughout the book, appropriating their dignity enabled these HAE patients to identify their personal struggles with others’ and in turn analyze their common problems and the need for specific interventions. It enabled them to learn more about how the health system functions, the role of pharmaceutical pricing and intellectual property, and about their own rights, and it allowed them to demand institutional, political, and legal reforms that would benefit their children and future generations. A key lesson from the HAE forum in Costa Rica—as well as from the pandemic and many other examples cited in these chapters—is that health, perhaps more dramatically than any other area of law and policy, involves what Jededihah

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Britton-Purdy and colleagues refer to as “the need for political judgments about the gravest questions: who should exercise power, of what sort, and over whom? What should count as a human need, and what claims should politically recognized needs give us against the state and thus against one another?”68 These judgments, and the processes through which they are made, lie at the center of democratic legitimacy within contemporary plural societies—and in our global governance institutions. The snapshot of today’s reality in this chapter will inevitably be replaced with another. COVID-19 will eventually fade from our daily conversations even while it has changed our world and our lives forever. But as much as the powers that be would urge us to unsee what these pandemic years have revealed, we must resist doing so. No doubt we live in hugely unsettling times, with outright conflict, diseases, climate crisis, and chaotic and disconcerting shifts wreaking havoc around the world in virtually every domain. Nonetheless, this period of massive transition has shattered the false inevitability of neoliberal tenets, which have exercised an ever-tighter grip on our collective imaginaries since the early 1980s and produced the cascade of effects on health rights and social justice recounted in these pages. In addition to everything else it has done, the pandemic has raised the curtain on the masquerade of “the way things need to be done.” The disruptions it has unleashed and exposed open the door to new possibilities for progressive transformation of our world—which we must seize.

Co n clu s i o n s

THE STRUGGLE FOR THE WORLD WE WANT Solidarity is not charity; in an interconnected world, it is common sense. It is the principle of working together, recognizing that we are bound to each other, and that no community or country can solve its challenges alone. It is about our shared responsibilities to and for each other, taking account of our common humanity and each person’s dignity, our diversity and our varying levels of capacity and need. —UN Secretary-General Antonio Guterres1 Our task as [human beings] is to . . . make justice imaginable again in a world so obviously unjust. . . . Naturally, it is a superhuman task. But superhuman is the term for tasks [we humans] take a long time to accomplish, that’s all. —Albert Camus2

on a steamy day in October of 2017, it was impossible not to marvel at the feat of engineering the Panama Canal represented. I was in Panama City to present expert testimony on behalf of the Inter-American Commission on Human Rights in a special session of the Inter-American Court the next day.3 The case was a potentially momentous one in which the court would definitively establish its willingness to enforce the right to health as an autonomous right under Article 26 of the Protocol of San Salvador to the American Convention on Human Rights.4 The Court had been taking steps toward such a move for a number of years, but there was internal contestation. Earlier in 2017, it signaled its willingness to go beyond previous jurisprudence and enforce economic, social, and cultural (ESC) rights directly in a labor rights case involving Fujimori’s Peru, Lagos del Campo v. Perú. It also Looking out from the Mir aflores locks

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handed down a consultative opinion requested by the government of Colombia in an environmental dispute with Nicaragua. However, this case, Poblete Vilches v. Chile,5 would be the most significant case to date because it was a contentious one about the right to health that was likely to be heavily litigated and had been excluded from direct enforcement multiple times in previous Inter-American Court of Human Rights jurisprudence. The protocol itself does not explicitly make the right to health justiciable, and the Court had earlier opted to interpret it in light of a nexus with other rights. Thus, as Judge Ferrer MacGregor noted in a concurrence, the Court’s approach had led “to interpreting overlapping contents and to not enabling the evaluation of the implications of obligations to respect, protect and fulfill each right for its effective implementation.”6 In the 2017 Lagos del Campo v. Perú decision, the Court established the independent enforceability of article 26 of the protocol in relation to a right to a stable labor regime, which challenged the “flexibilization” undertaken by Fujimori in the 1990s.7 As Oscar Parra writes, in keeping with Ronald Dworkin’s hermeneutic way of seeing jurisprudence as literature, the opinion was a fitting episode in a long story.8 The attempt to break with formalistic interpretations of the law and make ESC rights independently justiciable had been ongoing since the adoption of the Protocol of San Salvador in 1999, as discussed in Chapter 4, and was a long struggle played out not just in activism but in case footnotes as well as debates between scholars.9 Although not contentious, the Colombian environmental case was conceptually important because the court found that a comprehensive understanding of the right to a healthy environment—as could be argued about health—was too complex in its implications to be analyzed through a nexus with a plethora of other rights.10 Poblete Vilches, and the Panama Canal itself, speak to how we see progress in the struggle for health and social equality. The canal greatly reduced travel time because ships no longer had to sail around the tip of South America, and it revolutionized trade. In turn, it advanced the economic, military, and political interests of the United States as well as the financial interests of US corporations operating in the region, including United Fruit. In the process of building the canal, major public health advances were made in treating malaria, yellow fever, and other mosquito-borne plagues of the time.11 At the same time, those advances came at the expense of thousands of lives of poor laborers forced to work under inhuman conditions.12 Indeed, like the vaccines developed during the pandemic and many examples throughout these pages, the construction of the canal shows the extraordinary capacity of human beings to collectively innovate practical

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progress and overcome enormous obstacles to human flourishing, as well as the profoundly unequal cost of that scientific and economic progress and the unequal distribution of its benefits. The case concerned the 2001 death of Vinicio Poblete Vilches in the Hospital Sotero del Río on the outskirts of Santiago, Chile, who had been admitted for a respiratory emergency. After surgery, Vinicio was sent home, but complications made him return to the hospital. At that point, both the petitioners and the government of Chile agreed, he should have been placed in intensive care but was not; he died later of infections contracted at the hospital. The petitioners alleged a series of violations of informed consent and bodily integrity, rights to information and life, and the right to health, as well as a lack of adequate judicial remedies.13 The background of the case reflects many of the themes in this book. Under the brutal Pinochet dictatorship, Chile had been an early adopter of structural adjustment, with the health effects discussed in earlier chapters. By 2001, the health system in post-dictatorship Chile reflected the reforms pushed by international financial institutions (IFIs), divided between private health care and a residual, underfunded public health system for low-income populations. In addition to background social inequality, there had been minimal investment in preventive measures and health promotion, and the health care system had become highly medicalized.14 In the early 2000s, President Ricardo Lagos, member of a Center-Left coalition, and his minister of health, Dr. Hernán Sandoval, designed and implemented Acceso Universal a Garantías Explícitas (AUGE; Universal Access to Explicit Guarantees). Together with greater investment in the health system, the so-called AUGE reform was a very imperfect attempt at setting priorities transparently and explicitly, guaranteeing timely access (maximum wait times), implementing quality standards and financial risk coverage, and eventually incorporating a fund for costly diseases and promoting citizen participation in priority-setting and oversight (for example, dental coverage was decided through citizen consultation).15 The Constitutional Tribunal of Chile, hardly known for judicial activism had exercised a normative function in the health system when in 2010 it declared the private insurance system’s premium adjustments for health risk by age and gender to be unconstitutional discrimination.16 Despite the AUGE plan, however, Chile’s extreme wealth inequality and continuing embrace of neoliberalism in its political economy had led to significant effects on social determinants of health and increasing privatization in health as well as education, transportation, and other sectors over the years.

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By the time the pandemic struck, approximately 80 percent of the population had been consigned to a desperately underfunded public healthcare system, while the wealthy bought themselves private care. The morning after the hearing, the deceased man’s son, Vinicio Marco Poblete Tapia, and I were up early, and we chatted as I had coffee in the hotel lobby. Vinicio said he did not drink coffee anymore because of his blood pressure. At fifty-six, he was a heavyset man with dark leathery hands that revealed a life of little comfort and an expressive face with dark, sad eyes. Those eyes filled with tears when speaking of his father and his family. He had been pursuing this case for seventeen years and had given up steady employment to do so. His mother had died after his father’s death “of grief ”; his sister had attempted suicide and later died; his disabled brother had also died. He had faced his own struggles with cancer and heart disease, had lost one kidney, and walked with a cane. Vinicio had stated in the hearing: “My family was destroyed by injustice, we were discriminated against, humiliated for being poor. . . . The state never investigated. . . . For them, [my father] was just another poor man who died in a public hospital . . . we have suffered too much.”17 He repeated these sentiments to me the next morning with the same indignation that a victim of rights abuses by the military in Chile or Argentina might have shown decades earlier, and the same hope for vindication through the international human rights system. We talked for a while; Vinicio shared family memories and stories about his life in Chile, and we watched together as the dawn spread its rosy fingers across the horizon. Before I left to catch my flight, he said, “God bless you,” as we hugged tightly, and I held back tears, repeating “que dios le bendiga.” Contemplating the layers of sorrow this man had experienced in his life, I was struck yet again by the extraordinary capacity human beings have to create meaning out of profound suffering. In the face of seemingly unending setbacks, like the mythical Sisyphus,18 “ordinary” people such as Vinicio manage the most extraordinary feat of picking themselves up and pushing the metaphorical boulder up the hill over and over again. It is in that choice, to deny nihilism and continue to live and to love—and to struggle—that dignity lies. In these conclusions, we first review the broad arguments made throughout the book about what we have achieved in applying human rights in health and where we have fallen short. Next we examine some of the principal takeaways from each chapter. Finally, drawing on lessons from these takeaways, I share

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some reflections on engaging in transformative human rights praxis with respect to health.

Coexisting Truths: Achievements and Challenges for Applying Human Rights in Health In the Introduction, I argued that those of us who set out in the early 1990s to advocate for ESC rights, including health, faced three related but distinct challenges. First, we had to establish that health and other ESC rights were real, legal rights and not mere programmatic aspirations. This required drawing conceptual connections between health and human dignity, as well as changing legal norms to reflect state responsibility for meeting material conditions across public and private spheres. This evolution is incomplete, and contested, but is far more widely recognized at national and international levels, as the Poblete Vilches case and the many others cited in these pages show. More broadly, the question is no longer whether health rights are legal rights that can be judicially enforced. The most challenging questions now relate to how courts, in differing legal and health systems, can best enforce health-related rights to promote greater equity, open social and political opportunity structures, and improve diverse people’s lives. In turn, what changes are required in mandates, capacity, and authority to enable courts to function more consistently as guardians of health and other democratic rights as opposed to custodians of conservative legal orders? Second, we had to demonstrate what it would mean to apply human rights to health, not just in laws and policies but also in institutionalization in health systems and beyond. We now have far greater clarity on many aspects of human rights−based approaches (HRBAs) to health: budgeting, planning, and meaningful participation in health decision-making. Further, even as there continues to be contestation regarding what HRBAs require, we have diverse case studies involving reforming laws and implementing institutional practices, awakening social consciousness, and mobilizing diverse actors in the advancement of health and related rights. The challenge going forward is to ensure that HRBAs are placed in the service of emancipatory political struggles and do not devolve into hollow prescriptions that fail to catalyze real change. Finally, in the early 1990s we believed that the deployment of ESC rights could be used to promote norms of greater egalitarianism, as civil and political rights had promoted norms of democratic pluralism and protections of individual liberties. At the time, we hoped that highlighting issues of health, clean water, and the like as rights would not only influence national government policies but

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also diffuse norms of action across borders. In retrospect, perhaps we hoped for too much and settled for too little. Social inequalities have exponentially increased at the same time as we were articulating the normative demands of health rights, undermining the possibility of democratic governance and in turn the effective enjoyment of health as well as other rights. As Wendy Brown suggests, meaningful democracy is not possible “when the commitment to individual and collective self-rule and the institutions supporting it are overwhelmed and then displaced by the [quest] to enhance capital value, competitive positioning, and credit ratings.”19 Along with other scholars in the wider human rights field, I have suggested throughout these pages that facing the interlocking challenges that affect health in today’s world calls not for business as usual but for constructive disruption of some of our strategies.20 However, while some critics argue that it is the “endtimes of human rights,” or even that human rights have been complicit in the advance of neoliberalism,21 I have insisted that it is inaccurate to portray the human rights ecosystem as monolithic or unchanging. It is now common for human rights scholars and activists to focus on the contradictions between neoliberalism and human rights, and health rights in particular.22 Even more importantly, neither the official human rights system nor scholarship and advocacy from the global North should be taken to represent a very diverse set of human rights actors, perspectives, and practices. The unifying thread in a highly diverse tapestry of activism and scholarship is above all a narrative of what it means to be human. Throughout these pages, we have seen how a shared view of our common humanity and equal dignity has enabled diverse people to engage in collective actions that changed their world. While the linked challenges we face today are surely formidable, we must neither be daunted nor look away. The status quo relies on a mass neurosis of fatalism, and the powers that be desperately want us to unsee what became impossible to ignore in the pandemic. Throughout this history, we have repeatedly witnessed ordinary people collectively achieve extraordinary progress that seemed impossible—until it happened. Moreover, we need not be Pollyannas to believe that the crises of these past few years—from the wave of populists swept into power to the raving COVID19 pandemic to Russia’s invasion of Ukraine and the ensuing disruptions of the global economy—have changed opportunity structures with respect to the hegemonic acceptance of neoliberal tenets and created possibilities for reimagining the global order. Once we can envision alternatives to the institutionalized

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social order that we have come to accept as “the way things are,” we can begin to work toward the world we want. If trade regimes are not immutable, they can be modified not simply for domestic politicking but to allow greater pluralism in markets and more carve-outs for public health and human lives, the environment, and other public goods. If massive funding can be deployed for emergency pandemic response in wealthy countries, so too can investments in social protection and public health infrastructure be increased during ordinary times. If international cooperation can be rapidly deployed in the Ukraine war, it should become clear to a wider public that the failure to do the same for health and climate emergencies is a political choice, not an inevitability. If military conflict can simultaneously be financed by and threaten fuel supplies, the imperative of long-term investment and global efforts to address our collective addiction to extractivism take on greater urgency. If the need to fix broken supply chains, strengthen worker and social protections, and devolve manufacturing capacities for vaccines and therapeutics is recognized during a pandemic, permanent changes and investments can be proactively pushed during ordinary times. And when the extremes in wealth inequality and evasion of taxes by oligarchs, philanthro-capitalists, and some national leaders begin to generate wider public outrage, a door opens for reinforcing tax justice as a pillar of the social contract—and global governance. A key insight from this account is that the effective enjoyment of health and other rights must be continually conquered and reconquered; the powers-that-be do not voluntarily cede control over political economies or cultural ideologies. Advancing health and social equality in today’s world calls more than ever for articulating creative militancies at national and international levels. Above all, this book is a call to action and an invitation to take part in the struggles that will define the future of our societies, and the global order, for generations.

An Evolving (and Ongoing) Struggle As Philip Alston says about human rights in general, “dejection and despair are pointless and self-defeating. It’s assuredly not a lost cause, but we should not be fooled into thinking that it’s ever going to be a winning cause; it’s an ongoing struggle.”23 From the outset, constructing health rights has called for understanding that patterns of (ill-)health reflect power relations in our societies and our world as much as biological or behavioral factors. In turn, advancing human rights in health has required a visceral sense of indignation at the abuses, discrimination,

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and deprivations that diverse people suffer every day in private as well as public spaces, and has demonstrated how and when the state is responsible for the harms suffered. Chapter 1, “Indignation and Injustice,” situated the beginning of this story in Argentina under the brutal civic-military dictatorship in the 1970s. The turn toward human rights in the wake of reluctant decolonization, disenchantment with more radical and world-reordering politics, and evidence of the brutality of authoritarian regimes had three central implications. First, human rights offered a more confined approach to change through the rule of law as opposed to revolution. Second, at the time, human rights law focused on traditional civil and political rights violations in the public sphere. Third, human rights focused on the dyad of individuals and the state, while the aspirations of newly decolonized states for a NIEO between states were substantially displaced by questions of economic development. The confining of human rights issues to national governance meant that the paradigms of international development and human rights law would take very different paths. During the pandemic, we witnessed the residual effects of these three fault lines in human rights, from the exacerbation of domestic violence in the private sphere to the lack of institutionalization of health and other ESC rights, to the stark limitations of restricting human rights obligations within national borders amid a global public health emergency. At the same time, a major takeaway from this chapter, reflected in the decades-long struggle for abortion rights in Argentina culminating in legalization in 2020, is that reveals that rights strategies can and do evolve across legal as well as political and social domains. When rights are deployed dynamically, the meaning of equality, dignity and freedom from violence is continually reconstructed in ways that enable women and others excluded from the social contract to gain individual and collective agency. Chapter 2, “The Significances of Suffering,” described the shifts in global economic arrangements and the beginning of market fundamentalism in the 1980s, whereby the prevalent public discourse in many countries became one of the private sector being more efficient than the state in economic management. In the US, there was deregulation and privatization; in the global South, the IMF, in conjunction with many governments, undertook aggressive interventions in the face of unsustainable debt, which began shaping policy and legislative agendas. This chapter articulated the deep linkage between the biological individualism of conventional medicine and the increasing commodification of health care in the 1980s. We saw how the “significances of suffering” changed: whether an individual having a health or economic problem or a whole country’s economy

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stalling, failure ceased to be a social problem and came to be seen as the result of inept governance or individual defects or deviance. A central takeaway from this chapter, which has been underscored during the pandemic, is that our sense of what we owe to one another as equal members of a polity or as equal human beings on the planet is shaped by the institutional arrangements that we create and inhabit. But we also saw how HIV/AIDS activists created alternative allegories about their suffering, stood up for their rights and collectively transformed laws and policies as well as scientific funding and research practices. Chapter 3 examined two “Diverging Parables of Progress” propagated by the multilateral political institutions of the UN on the one hand and by the evolving roles played by the multilateral economic institutions of Bretton Woods on the other. The first narrative of progress was reflected at the global level in trans-sectoral conferences that reaffirmed the interdependence of CP and ESC rights, and advanced gendered interpretations of well-enshrined human rights, which would deeply affect not just women’s but everyone’s health. At the country level, transformative constitutionalism swept through many countries in the 1990s, enshrining a new social contract based on rights to material conditions necessary for dignity and offering the promise that courts would act as engines of democratization. The second narrative in the 1990s was one of intensifying economic integration. New legal norms for trade, including intellectual property norms, were being propagated at the newly created World Trade Organization (WTO), and there was increasing financialization of debt and deregulation, which did not align with the goals of social justice and human dignity. Issues central to the enjoyment of health rights were justified in technocratic terms as necessary for the “modernization” of economies and societies. Perhaps the central message of this chapter is that blindness to the structural paradigm in which we operate leads to prescriptions that fail to adequately attack underlying drivers of health and social inequality. That is, when we focus only on the cheery account of normative developments in relation to health and ESC rights—during this period and looking forward—we are destined to produce blinkered analyses of our achievements and incomplete strategies for the effective enjoyment of those rights. Chapter 4, “Dystopian Modernization,” continued to interrogate the impacts of the competing parables of progress. Drawing on experiences in Alberto Fujimori’s autocratic Peru, it explored how the utopian aspirations of reproductive rights in the UN development conferences became dystopian with the involuntary sterilization of hundreds of thousands of overwhelmingly indigenous women in the late 1990s. Yet those same aspirations and concepts helped to

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shape the response from Peruvian human rights advocates and grassroots social movements. In the Peruvian experience, we saw the role of the health system in reproductive governance, both in the sterilizations as well as in campaigns around maternal health during the time of the Millennium Development Goals (MDGs). Neoliberal reforms, patriarchal norms, and a long tradition of colonialism in the health system acted in synergy to police the bodies of indigenous women, such as Pabla from the Altiplano, and to exacerbate exclusion of sectors of society. At the same time, what Sally Engle Merry calls “vernacularization,” or sociolegal translation, of international concepts of reproductive autonomy, freedom from violence, and dignity was crucial to human rights strategies for political and legal mobilizations by indigenous women and allied activists in Peru. A central argument from this chapter is that in thinking about the impacts of rights strategies it is a mistake to focus only on direct, material changes in laws and policies; indirect effects on coalitions and power dynamics and symbolic impacts on how subaltern groups appropriate a sense of dignity and agency are critical to understanding how rights drive social change. In chapter 5, “Globalizing Crises, Pandemics, and Norms,” we turned to the story of Elva’s death in Malawi and the HIV/AIDS crisis in southern Africa. By the first decade of the 2000s it had become clear that infectious diseases such as HIV/AIDS could move across borders, creating a new era focused on global health security ; in 2005, in part because of renewed concerns over health security related to HIV/AIDS, revised International Health Regulations (IHR) entered into force. It had become equally clear that the rapid movement of capital had facilitated economic volatility and contagion around the world, culminating in the crash of 2008, which turned into a global economic crisis. South Africa, newly democratic and needing to participate in the global economy, was deeply affected by the economic strictures, including those involving access to medicines, imposed by international financial institutions (IFIs) and the United States, among others. Through collective political and legal struggle, HIV/AIDS activists in South Africa established affirmative health entitlements as legal rights and assets of citizenship and, with networks around the world, garnered far more funding through new institutions and initiatives during the MDGs. However, the MDGs embedded a top-down, technocratic approach to development that differed markedly from the trans-sectoral conferences of the 1990s. Financing for development became increasingly dominated by the World Bank and IFIs as well as private investors and philanthro-capitalists who were gaining influence in the UN system. The official human rights system also grew exponentially during the

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decade, expanding interpretations of what is required for diverse groups to enjoy health and other rights. At the same time, proliferating normative elaborations created fragmentation across regimes and rights, including aspects of health. A key message from this chapter is how intertwined the evolution of global norms in development and human rights is with local lived realities, and that understanding those dynamics is essential to transformative praxis moving forward. Chapter 6, “Inequality, Democracy, and Health Rights,” opened with a discussion of how the extremes of economic inequality reached by the second decade of the millennium were undermining not just health but the possibility of democratic governance. Focusing on Brazil and the groundbreaking Alyne da Silva Pimentel case from the Committee on the Elimination of All Forms of Discrimination against Women (CEDAW Committee) (2011), which established an affirmative right to maternal health care, the chapter noted both the tremendous advances in health rights and the ongoing challenges. Despite contestation, we had principles and tools regarding how an HRBA would differ from conventional models of health problems in terms of social determinants of health as well as throughout the health system. In Latin America, the question of judicial enforcement of health rights had become how to use adjudication not to grant privileges to those who happened to have access to justice but to promote equity across systems. By the early 2000s, some apex courts in the region had begun to address structural issues in health through dialogical remedies and experimentalist regulation, they attempted to spur the political organs of government to action. The chapter concluded that in growing advocacy on health as well as environmental justice, we have critical lessons to apply from what has worked and what has not in the design of both structural judicial remedies and HRBAs, including with respect to how steep societal stratification and private actors influence meaningful participation and social accountability. Finally, Chapter 7, “Power, Politics, and Knowledge,” began by setting out some of the intersecting challenges we faced in the years leading up to the outbreak and global spread of SARS-CoV-2 that the pandemic exposed and exacerbated. Decades of deepening socioeconomic inequalities and a loss of faith in the ability of democratic institutions to deliver on promises, including ESC rights, had produced a wave of conservative populism and ethnonationalism that fed on fearmongering and othering. Social media had been facilitating polarization and the spread of misinformation well before the pandemic, just as climate change had been exacerbating conflict and mass migration before Ukraine. Amid this

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new world disorder, Agenda 2030 for sustainable development offered a universal plan focused on inequality, not just poverty, including in universal health care (UHC). Nonetheless, financing and other conditions necessary for promoting health rights within countries, let alone health equity across countries, were constrained by the neoliberal architectures of development assistance and global governance. The chapter continued to explore the implications of human rights for organizing and financing health systems, and to insist on the importance of democratizing health systems for advancing human rights. As Lynn Freedman writes, “human rights activists have long understood the political arms of the state—prisons, judicial systems, and police forces—to have the power to exclude, abuse and silence. But rarely are . . . the social institutions on which [ESC rights, including health] depend approached with the same understanding.”24 In pandemics and ordinary times, advancing health rights depends on re-envisioning the way to make health systems function fairly in plural societies, when there are deep disagreements over what claims should be recognized and prioritized by the state. The chapter argued that democratizing health systems requires examining not just the end result of patient treatment but also, and more upstream, system financing treatment of health workers, and health policy decision-making. Given what we learned from the pandemic about the marginalization of human rights norms, Chapter 7 reviewed proposals for global health justice. Some of the inequity in health between countries can be attributed to the tyranny, abuse, and malfeasance of national governments. Nonetheless, global health justice also calls for designing a functional multilateralism. In this regard, reforming the IHR (2005) is a clear imperative, but global health security frameworks, with their emphasis on surveillance, detection, and reporting of diseases, offer corrective justice at best. Any revisions in global health law including a pandemic treaty, are unlikely to address fundamental issues of distributive justice. Chapter 7 suggests that global health justice calls for democratized and sustained global public investment in common goods and platforms across health, climate, and beyond. Second, a necessary but not sufficient part of addressing global health injustice stemming from political determinants of health is extending the accountability of wealthy states for their extraterritorial obligations (ETOs) regarding their own actions and those of transnational corporations over which they exercise effective control. The use of ETOs to re-regulate and create new incentives for TNCs with respect to taxation and transfer pricing, ecological extractivism, labor abuses and more recognizes that the problems posed by TNCs’ hypertrophied power affect not just health but social inequality and the

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quality of democracy, the climate crisis, and our digital information ecosystem. Reframing historical exploitation in terms of reparative justice is complex but is essential to building a just future, including health and social equality. Looking forward, we cannot separate our campaigns for health equity, public health systems, and global solidarity in health financing from campaigns for labor and land rights, gender equality and antiracism, and environmental justice. Creating the future we want depends on our learning to build new geographies of knowledge across borders and movements, to adopt coordinated actions, and to forge new transnational networks in our interconnected world.

Five Reflections for Transformative Human Rights Praxis for Health25 Start with Why Treating Health as a Right Matters Our understanding of the importance of treating health as a right invariably shapes what we do to advance global health justice. It also determines whether people care. I began this book by arguing that, across varied religious and philosophical traditions, health is understood as critical to human dignity, to our ability to pursue life plans—in Amartya Sen’s terms, to develop the capabilities and functionings that we value in life. Health, like all rights, also depends on the arrangement of institutions in society, which is why I have stressed the importance of democracy and democratic political economies. Patterns of health are not merely biologically or genetically determined. In turn, disease and suffering from conditions that we perceive as unfair and attributable to legal and institutional arrangements intuitively violate our fundamental sense of justice. Ultimately, why treating health as a right matters relates to why human rights matter and the stories we tell ourselves about who we are as human beings. What makes you you? Is it the color of your skin? The wealth you inherited or earned? Your intellectual or physical abilities? The genitalia with which you were born? The people you want to have sex with or the gender with which you identify? Is it a condition that you were born with or one that befell you through disease or accident? Is it the country of your citizenship or your religious or cultural traditions? Is it your family or tribal bonds? Is it the profession you practice or the place where you live? Is what makes you you simply a matter of your genes? The fundamental insight of human rights is that, across the many threads of identity, the common dignity we share calls for institutional arrangements that accord each of us equal moral consideration. The universality of human rights allows us to step outside of a particular context and see that the labels we reflexively use to categorize people, including ourselves—from caste to tribe to

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race to gender—are not inscribed with the same meanings and hierarchies across settings. Once we see the contingency of those labels, we can use human rights frameworks for collective action based not on sameness but on cooperation and shared commitments to equal dignity in all our diversity. Collective mobilizations for health rights as described in these pages—for HIV/AIDS, reproductive justice, even HAE patients and their families—has brought together people of different backgrounds, races, genders, and social classes around a common commitment to social change. At the same time, human rights offer a narrative of humanness that does justice to our complexity, in which our different values and starting points do matter. Denying competing ethical claims, erasing power asymmetries through “multi-stakeholderism,” marginalizing the well-being of certain societal groups for an economic or demographic aim—all are fundamentally inconsistent with human rights. So too is relinquishing to elites of whatever kind of power we have to make decisions about our lives, which is why I have stressed throughout the connections between robust democratic governance and health rights. On the contrary, advancing health rights calls for processes through which “ordinary” people can come together and deliberate how to manage differences fairly in our plural societies and, ultimately, in this complicated world. Throughout this account, we have seen that much of the progress in health rights has been achieved through political lawyering, creative militancies that go beyond the law, and antiformalist interpretations of both constitutional and international law that are based on this understanding of health's fundamental connection to living lives of dignity in all our diversity. However, the proliferation of human rights norms, institutions, and procedures in international human rights law over the last fifteen years, in relation to health and beyond, has exacerbated a tendency toward positivism in some scholarship and advocacy. This trend, which suggests that the existence and meaning of the right to health derives from treaties and soft-law risks ignoring the structural facets of political economies that create the conditions under which health rights can be effectively enjoyed—or not. Moreover, there is a danger that a disproportionate focus on decoding guidance from expert UN bodies encourages the idea that dignity and equality are depoliticized policy issues to be sorted out with a specific kind of technical knowledge and programming metrics. When divorced from people’s life worlds, human rights−based approaches can all too easily be reduced to the dead notes of sheet music rather than anthems that inspire action or balms for our deepest

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sorrows. We can never forget that dignity and equality in health and beyond are most fundamentally values worth fighting for, on the streets and at the ballot box, in courts and cultural spaces, and in supranational legal and development forums. We saw from examples across the world—abortion rights in Argentina, HIV/AIDS in South Africa, profound contestation over COVID-19 policies—that it is a strategic as well as a theoretical error to pretend that we can circumvent the moral arguments that lie at the center of why applying human rights in health matters.

Target All Forms of Inequality, Not Just Poverty Throughout the book, we have focused on why inequality, and not just poverty, matters from a human rights perspective concerned with transformative praxis. Focusing on alleviating extreme poverty alone is a capitulation to the narrative of scarcity that the masters of capital have created. Economic growth in the post–World War II era has been astounding; there is no lack of money in the world. Rather, since the early 1980s, decades of deregulation and altered tax and antitrust regimes, coupled with financialization, have fundamentally upset the balance of private and public wealth and have driven ever-deepening inequalities between the top of the wealth pyramid and the rest, especially the bottom half. We have seen how formal equality—treating similarly situated people the same—is critical for universalizing access to health entitlements and for equal protection. But it is not enough. Substantive equality, which accounts for differential starting points between groups, whether due to disability or gender or sexual orientation or something else, is equally critical for a functioning plural democracy in which diverse people have an equal say in the policies that govern them. But transformative human rights praxis most centrally needs to focus on addressing structural inequality—the institutionalized social order that drives patterns of wealth and well-being—across borders as well as within states. As leading voices within the human rights field have noted for some time, it is urgent that we move away from alleviating the extreme deprivation that results from the current institutional order to challenge the drivers of ever-deepening inequalities within and between countries.26 We have repeatedly seen that the structural inequalities in social determinants of health stem from transnational as much as national forces. Even when we focus on a particular context, the sources of health and other rights violations are to be found in transnational spaces. Moreover, it is not just the source of violations that is determined by global structures, but the shackling of the state’s ability to

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respond to them. Even before the pandemic, it was clear that intrusive neoliberal economic strictures limit the resources available to lower-income countries such as Malawi, where Elva lived, to respond to hurricanes—or pandemics. In this way, they prevent investment in resilient universal health systems that include both public health and care. Transformative human rights praxis concerned with structural inequality, and structural violence, calls for more than examining budget lines for health, although disaggregated budget lines are useful in illuminating sources of inequality within countries. We need to map the investment, debt, and other commercial agreements that limit budgetary resources and thus the state’s capacity for public investment in social determinants of health as well as care. Further, we have to understand not just the amount and form of development assistance that flows into countries but also the financial transfers that flow out of the global South as well as middle-income countries. Without this information, we too often merely denounce human rights abuses, which are all too easy to find, and naming what treaties they breach. In transformative praxis, a more complete picture of what factors are systematically harming groups of people is necessary to understand where and how to exercise leverage. It is clear that human rights advocacy focusing on global inequalities and political determinants of health will demand new coalitions and new forms of networked advocacy that link human rights organizations and scholars with other domains of law as well as economics and health sciences. And that is already beginning to happen. For example, some human rights groups, including the Global Initiative on ESC Rights and the Center for Economic and Social Rights (CESR) and many other human rights groups across the globe are part of coalitions that advocate for tax justice, and investment in public services, including health and education.

Focus on the Infrastructures for Effective Enjoyment of Health (and Other) Rights In the pandemic, it became obvious that we cannot rely on normative scaffoldings and remedies for violations after the fact. The material and social infrastructure of rights provision—meaning social protection regimes and housing, education, and health systems—should be at the center of human rights advocacy moving forward. During COVID-19, we saw how health systems in particular function to mitigate or exacerbate inequalities in the overall society. But this is nothing

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new. Throughout this account, we have seen how marginalized people experience much of their exclusion from society through their repeated contacts with health systems, and that women are especially affected because of their socially constructed caretaking roles and reproductive needs. In Mexico, the Ejército Zapatista de Liberación Nacional (EZLN; Zapatista Army for National Liberation) first rebelled in part because of lack of access to basic services, and then the government used the health system as part of the counterinsurgency to gather information about the Zapatistas. In Peru, the health system was oppressively colonialist and the punitive treatment of health workers on flexible contracts contributed to its structural abuse against indigenous women. In South Africa, the public health system that was supposed to be a post-apartheid site of reconciliation had to be legally forced to address the needs of the poor, who were overwhelmingly Black. In Brazil, the health system reflected the dehumanization of Afro-descendant women in its provision of obstetric care. In Costa Rica, people with rare diseases were all too often disregarded and even subjected to iatrogenic abuse. And in Chile, poor people were all too often degraded and denied dignity in health systems that allocate quality and content of care according to ability to pay rather than justice. If we understand that treating health as a right matters because of its close connection to dignity, we cannot think of health care, including medicines, as a mere commodity. It is essential to focus on how health systems (both public health and care) can be made to enhance social inclusion and reinforce normative commitments to equality and dignity under both constitutional and international law. We have discussed judicial, legislative, regulatory, and social movement actions to strengthen health equity, and underlined that without attention to financing and state capacity, health rights are reduced to hollow legal promises. And as emphasized throughout, the obligations of states to adequately fund and organize democratic health systems coexist with the need to change global rules that undercut fair provision of services and in turn the effective enjoyment of health rights in practice.

Democratize Knowledge and Authority Related to Health and Rights Advancing health rights calls for centering the knowledge of people with lived experience. As my late colleague Paul Farmer argued, the experience of human rights violations in relation to health, and why they matter, tends to be most “accurately and comprehensively grasped from the point of view of the poor.”28 We should be wary of technocratic knowledge production and policy-making

234 Conclusions

that exclude or diminish the lived realities of activists or abuse survivors, of health system users or community health workers, or of any other variant of ordinary human being.29 Enabling diversely situated people across different contexts to claim agency over their life plans requires that they possess adequate actionable information to protect themselves from deadly infectious diseases as well as endemic threats to health in a given setting. Democratizing health systems calls for ongoing institutionalized priority-setting, which takes account of differential impacts of social determinants but also affords meaningful participation of people who will be affected by policies, and in turn the knowledge they need to engage actively in deliberating about criteria for priorities. It also calls for justification of health policies and decisions to the public whose lives are affected. When criminal justice or electoral decisions are taken with the lack of transparency that characterizes most health decision-making—in the pandemic and in ordinary times—we decry them as violating basic democratic principles. The same should be true in health decision-making. As we have discussed, democratizing global health knowledge also requires lowering systemic legal barriers such as those in intellectual property regimes that wall off trade secrets and the know-how necessary for manufacturing vaccines, or other therapeutics, as well as for scientific research more generally. Copyright rules that erect paywalls also exclude researchers and clinicians in the global South, even when the research is conducted in their countries on diseases that most affect their populations. Knowledge and authority are closely linked. The corollary to understanding that those who have lived experience are best placed to understand their lives— and the meaning of health rights—is that that truth claims from (self-)anointed experts who do not share those lived realities often produce blinkered analyses. They also risk reproducing dynamics of colonialist exploitation. In Eduardo Galeano’s brief story, “The Visitor,”30 a foreigner stops by a chicken farm on the outskirts of Santo Domingo belonging to Doña María de las Mercedes Holmes, and asks her, “If I tell you exactly how many chickens you have, will you give me one?” After turning on his touchscreen tablet with a GPS connection, he says, “You have one hundred and thirty-two chickens,” and catches one. Doña Maria retorts: “If I tell you what your work is, will you give me back my chicken?” She says, You’re an international expert. I know because you came without anyone calling you, you entered my chicken farm without asking permission, you told

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me something I already knew and then you tried to charge me for it.” This anecdote is amusing precisely because it points to a painful truth about the hubris of “international experts” in global health—and sometimes human rights. In contrast to the hubris of “technical expertise,” a model of accompaniment, as discussed in the context of indigenous women in Peru and used widely by Partners In Health as well as other social justice organizations, calls for a horizontal, dialectical relationship that meets people where they are and assumes mutual learning and sharing of the struggle. As I suggested in describing the role for our international presence in the follow-up visit in Brazil, or in the HAE conference in Costa Rica, outsiders can offer comparative insights that show that the way things are being done, including unjust laws and practices, can be changed. Outside perspectives that offer a view from a distance are also crucial for accountability and can catalyze coalitions to take up issues. But whether as an outsider in another neighborhood of greater Boston or in another country, I have found that I invariably have as much to learn as to offer—not just in order to produce democratic social change but also about the meaning of (not) having health rights and dignity itself.31 Finally, advancing health rights calls for interrogating the epistemic models through which we think about health and claim to know what we know. The scientific method that produces truths abstracted from context tells us one story about health and disease, but, as we have seen, this is not the only story we can tell. For example, in Peru we saw that indigenous understanding of a reciprocal relationship with the natural world offers other ways of conceiving of well-being. So too do the thicker sociohistorically grounded narratives of social medicine, which tie together histories of structural violence, such as those Juan experienced, with the manifestations of illness in individual bodies. According to Farmer, an exemplary practitioner of social medicine, questions about who gets sick or dies, and under what conditions, are wrapped in layered histories of colonial extraction and exploitation, “where veiled alliances form a bridge between aggressors and victims.”32 When we allow ourselves to live with these questions, without reflexively resorting to stock answers, we can begin to develop new understandings of causality and new approaches to promoting health justice.

Continually Reflect on the Way We Do This Work As we navigate these struggles in the flawed world we inhabit, it is up to all of us to continually reflect on our own actions and motivations and the dynamics of

236 Conclusions

privilege and power within which we operate, and to ensure that we are indeed following the principles we espouse. If we are advocating for universal dignity, we must commit to treating others as we would like to be treated. If we claim to be speaking truth to power, those of us with multiple layers of privilege must continually lift up the voices of those whose lives are affected or who are in the trenches, day in and day out. If we believe in democratic deliberation, we must ensure spaces for horizontal dialogue among groups with varying perspectives, whether to negotiate agendas and strategies or to allocate resources for activities. And if we are serious about attacking the inequalities that permeate global health, we also must challenge the epistemic frames and institutional structures that privilege certain claims to authority over others within the fields of global health and rights. We all need to confront the control and uses of funding that are (mis)aligned with the progressive reshaping of the political economy of global health. There are undoubtedly cost-of-living questions that influence funding arrangements, but far too often institutions in the economic North offer pitiable fractions of a grant for “implementation,” or they exploit the labor of young scholars from the global South in exchange for a fellowship. After living and working alongside colleagues in many countries, I have come to believe that to do this work with integrity, funding, benefits, and salaries should be made entirely transparent and decision-making over grants involving different institutions should be shared. We cannot advocate for devolving power and governance in global health and development if we are not willing to do so ourselves. Throughout this account, I have stressed that transformative human rights praxis in relation to health is inescapably a collective struggle. As Kathryn Sikkink notes: “Where it has occurred, human rights progress has been the result of activism and struggle, and such progress is not at all inevitable, but rather contingent on continued commitment and effort.”33 Advancing justice in global health and beyond is not a Peloton challenge where progress can be tracked by decontextualized global development indicators or impact factors on academic publications. Social media and other tools can be enormously helpful in mobilizing groups for discrete events and actions, but sustaining this struggle calls for mapping the actual terrain to be covered with other human beings, constructing collective knowledge, facing obstacles and getting lost together, and supporting one another in our common struggle. The bonds we forge and the networks we create are equally critical, or more so, to producing transformative change than achieving any one specific goal. Choose your traveling companions on this journey carefully because those are the people who will wipe your tears and lick your wounds; those are the

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relationships that will get you through the dark times. And there will be dark times: when cases, organizing battles, and law reforms are lost; when patients die or suffer needlessly; when cherished friends and colleagues are murdered, detained, or forced into exile; or simply when the enormity of injustice and your impotence to mitigate it make you question everything. Over these decades, I have learned that the real antidote to feelings of burnout and futility in the Sisyphean struggle for social justice is not mindfulness apps or more self-care, although those can be helpful. The real antidote to feelings of burnout is caring more—and finding others who care as well with whom to share the exuberance of triumphs and lighten the despondency of losses.

In March 2018, the Inter-American Court of Human Rights handed down its opinion in Poblete Vilches, finding for the first time that the right to health is independently justiciable under Article 26 of the Protocol of San Salvador.34 The court noted that the case offered it the opportunity to analyze the right to health in light of the structural aspects of the health system, and the rights of nondiscrimination and the conditions of people in poverty. I sighed with relief for Vinicio and his family. We had been working toward this ruling for decades, which shows both how inexorably iterative progress is and how much work still lies ahead. In addition to the reparations Vinicio and his family would receive, the InterAmerican Court ordered structural remedies, including training of health providers and medical students on the rights of patients—in particular the elderly. It also called for Chile to refurbish the Hospital Sotero del Río and upgrade its capacity to address the health needs of elderly patients and report annually on progress.35 But, as noted in Chapter 6, singling out one place, such as the Hospital Sotero del Río, may undermine formal equality with respect to universalizing the same entitlements for all the similalry situated anonymous patients in other institutions in the health system. Further, calling for the government to spend more on specialized care for elderly persons in hospitals arguably undermines substantive equality as well, given the array of health needs in Chile. In the Inter-American Court hearing, both petitioners and the lawyers for Chile seemed to accept that the progressive realization of the right to health included making more intensive care units available, more gerontologists, more dialysis, and the like. I had argued the contrary: while it is true that emergency care is a fundamental aspect of a health system that was sorely missing in the Hospital Sotero del Río and for which the government of Chile should have been held responsible, progressive realization would require examining the entire

238 Conclusions

health system as well as political and social determinants that lead to chronic health conditions in old age.36 For example, Chile has the highest percentage of obesity in Latin America; 60 percent of its population are overweight or suffering from related health problems. A 2012 law requires warning signs on the front of packaged foods that are high in sugar, calories, sodium, or saturated fat and prohibits such products from being sold or advertised in schools.37 A subsequent law, passed in 2016, prohibits advertising such products to children under fourteen.38 Taxes on consumption are not substitutes for treatment, nor for a progressive taxation system more broadly. But, these laws aiming to rein in the power of transnational and other corporations are not only far more likely to prevent children from developing chronic diseases when they become adults and prevent much greater suffering than investments in curative care; they are also more equitable, as the poor are the most afflicted by the advertising and pricing of fast food. One source of inequities embedded in the health-care system was precisely the reliance on hospital-based care. It would be far more pro-equity to provide community-based care for the elderly and those with noncommunicable diseases—such as the ones Vinicio Poblete Vilches had suffered—rather than further medicalization, which would inevitably lead to greater inequities.39 Indeed, just a year earlier, in 2016, I spoke at a conference in Santiago on the contours of a right to health in the context of nascent proposals to draft a new constitution for Chile—a country that at that time had not reformed its constitution since the Pinochet dictatorship.40 Dr. Hernán Sandoval himself—the architect of AUGE— had made precisely this point about the Chilean health-care system. Dr. Sandoval struck me as a man who had “lived his life well”—with profound regard for the inextricable relationship between his dignity and the dignity of others.41 He had dedicated his life to advancing the health of the poor in Chile and around the world, not as charity but as a matter of entitlement.42 Sandoval had been a militant in the Movimiento de la Izquierda Revolucionaria (MIR; Revolutionary Leftist Movement), a revolutionary group in Chile in the late 1960s and early 1970s. But he joined with President Salvador Allende, a doctor himself and a famous proponent of social medicine, who argued for a “revolution in stages,” respectful of the constitution, the rule of law, and the institutions of the state. Allende was overthrown in a military coup in 1973, which ushered in a brutal dictatorship at around the time of the revolution in Argentina described in Chapter One. Not surprisingly, given ballooning economic inequality and the ravages of neoliberalism, there has been a recent surge in Marxist-inspired laments that

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an anemic human rights framework had replaced the grand hopes of socialism in Latin America and elsewhere. Despite acute awareness of national and global inequalities, Sandoval—and many other former combatants I have met over these years around the world—did not share that nostalgia. The inescapable truth is that the social and psychological structures needed to sustain armed conflict, revolution, and class warfare change a person’s humanity. The other necessarily becomes a less-than-entirely-human enemy in order to achieve larger objectives, and in turn you yourself necessarily become less than fully human. In human rights recognition of the dignity in ourselves—in all our diversity—is bound up with the equal dignity of others. We can and we must make that human rights story one that accords sufficient importance to addressing the grotesque inequalities and misery that stain our world. At the same time, to paraphrase former ANC militant and later South African Constitutional Court Justice Albie Sachs, we must promise not a hard vengeance but pluralism and justice.43 In the years since the Poblete Vilches case, the Inter-American Court has continued to define obligations stemming from health rights in a wide variety of situations, including regulating private actors in the health sector and addressing both mental health and the criminalization of obstetric emergencies.44 Some of these cases have had significant material as well as symbolic impacts in the region, as well as norm diffusion effects. Meanwhile, in Chile in 2019, just months before the pandemic, mass demonstrations broke out initially to protest transit fare hikes and then more broadly the neoliberal policies of the CenterRight Piñero government. Despite the pandemic, activists persisted and their demands led to the election of a leftist president, Gabriel Boric, and the drafting of a new social constitution that would replace the social contract put in place under the Pinochet regime. In 2021, almost fifty years after a bloody coup overthrew Allende, a Mapuche woman, Elisa Loncon, inaugurated the historic convention in Chile to draft a post-Pinochet constitution. Although the text of that draft was rejected in a referendum in 2022, as of this writing advocates continue working on constitutional reform proposals; the shackles of fatalistic acceptance of the way things had come to be had definitely been broken. Speaking through her COVID-19 mask in both Spanish and Mapudungun, and holding the Mapuche flag in her hands, Loncon said they were engaged in birthing a new pluri-national country as part of a new world in which multiple worlds might coexist.45 Changing the structural inequality in Chile will be a steep uphill battle. But the inspiring achievements of Chilean activists, together with allies around the world, are part of a global

240 Conclusions

awakening to the belief that we can collectively construct different ways of living together in this fractured world. Throughout this book, we have seen that the stories we tell ourselves about what we owe and how we relate to each other shape the social orders we end up inhabiting, and that when we decide to tell different stories we can change the world. I have argued that transformative human rights praxis in health and beyond is based on a story about the twin importance of robust democratic discourse to realize our collective humanity, and universal aspirations of equality and dignity in health and beyond. The importance of engaging in democratic deliberation based on political equality to shape the rules that govern our lives is an old story. Yet it is one which we are continually being tempted by elites to dismiss. Conservative elites claim that ordinary people lack the necessary depth of individuality and therefore can only attach themselves to a preformed religious/ nationalistic/class identity or their own narrow interests. “Revolutionary elites” often think they understand best the deep structures of history. Even technocrats who consider themselves progressive may zealously guard the privileges of their domains of expertise. The second narrative encoded in human rights rejects collective identity that is reduced to sameness and instead insists upon people’s equal dignity in all of our messy diversity. That is a newer narrative, which emerged in its current form after the cataclysm of World War II. Even as we continue to search for meaning in the global disruption and radical transformations we are now living through, the way forward calls neither for business as usual nor for abandoning the aspirations of the Universal Declaration of Human Rights for a “social and international order in which the rights and freedoms” therein can be realized.46 It is our task now to re-energize and transform human rights praxis in health and beyond so, as Camus said in the wake of the Holocaust, we can “make justice imaginable again in a world so obviously unjust.”47

Notes

Preface to Second Edition 1.  Lisa V. Adams, Dalee Sambo Dorough, Susan Chatwood, Willy Erasmus, Heidi Eriksen, Selma Ford, Ross A Virginia, and Siila Watt-Cloutier, “Accelerating Indigenous Health and Wellbeing: The Lancet Commission on Arctic and Northern Health” Lancet (British Edition) 399, no. 10325 (2022): 613–14. 2.  “Global Cooperation Must Adapt to Meet Biggest Threat since Second World War, Secretary-General Says on International Day, as COVID-19 Transcends Borders,”un.org, April 23, 2020, https://www.un.org/press/en/2020/sgsm20058.doc.htm. 3.  Pierre Bourdieu, Forms of Capital (Cambridge, UK: Polity Press, 2021). Introduction 1.  Quoted in Tracy Kidder, Mountains beyond Mountains (Random House, 2004), 294. 2.  Amartya Sen, Development as Freedom (Oxford, UK: Oxford University Press, 1999), 282. 3.  Manny Fernandez, Richard Pérez-Peña, and Jonah Engel Bromwich, “Five Dallas Officers Were Killed as Payback, Police Chief Says,” nytimes.com, July 8, 2016, https:// www.nytimes.com/2016/07/09/us/dallas-police-shooting.html. 4.  Katie Reilly, “Read President Obama’s Speech from the Dallas Memorial Service,” time.com, July 12, 2016, http://time.com/4403543/president-obama-dallas-shooting-me​ morial-service-speech​-transcript/. 5.  International Study Team on the Gulf Crisis, Health and Welfare in Iraq after the Gulf Crisis: An In-Depth Assessment, archive.cesr.org, 2019, http://archive.cesr.org/down​ loads/Health%20and%20Welfare%20in%20Iraq%20after%20the%20Gulf%20Crisis%20 1991.pdf. 6.  Philip Alston, UN special rapporteur on extreme poverty and human rights (2014−2020), sets out a similar framework in UN Human Rights Council, Report of the Special Rapporteur on Extreme Poverty and Human Rights, UN Doc. A/HRC/32/31, ¶12 (April 28, 2016). 7.  S. v. Baloyi and Others 1999 (1) BCLR 86 (CC) 29/99 ¶12 (Sachs, J.) (S. Afr.). 241

242 Notes to Introduction

8.  Kathryn Sikkink, Evidence for Hope: Making Human Rights Work in the 21st Century (Princeton, NJ: Princeton University Press, 2017); Samuel Moyn, Not Enough: Human Rights in an Unequal World (Cambridge, MA: Harvard University Press, 2018). 9.  Alicia Ely Yamin, Power, Suffering, and the Struggle for Dignity: Human Rights Frameworks for Health and Why They Matter (Philadelphia: University of Pennsylvania Press, 2016). 10.  Nancy Fraser, The Old Is Dying and the New Cannot Be Born: From Progressive Neoliberalism to Trump and Beyond (Brooklyn, NY: Verso Books, 2019), 37–38. 11.  Claire Coffey et al., “Time to Care: Unpaid and Underpaid Care Work and the Global Inequity Crisis,” briefing paper (Oxford, UK: Oxfam International, 2020). 12.  Boaventura de Sousa Santos, “La cruel pedagogía del virus” (Buenos Aires: CLACSO, 2020). 13.  Informed consent for all field research was obtained pursuant to ethical review board procedures both at US institutions and in countries, and names of people not already in public legal or other records have been changed to protect identities. 14.  Audre Lorde, “The Master’s Tools Will Never Dismantle the Master’s House,” in Sister Outsider: Essays and Speeches (Berkeley, CA: Crossing Press, 2007), 110–14. 15.  Seyla Benhabib, “Toward a Deliberative Model of Democratic Legitimacy,” in Democracy and Difference: Contesting the Boundaries of the Political, edited by Seyla Benhabib (Princeton, NJ: Princeton University Press, 1996), 68. 16.  Jürgen Habermas, Legitimation Crisis (Boston: Beacon Press, 1975). 17.  Roberto Mangabeira Unger, Democracy Realized: The Progressive Alternative (Brooklyn, NY: Verso, 1998), 5. 18.  Max Roser, “The Short History of Global Living Conditions and Why It Matters That We Know It,” ourworldindata.org, accessed September 27, 2020, https://ourworld​ indata.org/a-history-of-global-living-conditions-in-5-charts. 19.  Gregg Easterbook, It’s Better Than It Looks: Reasons for Optimism in an Age of Fear (New York: PublicAffairs, 2018). 20.  Stephen Pinker, Enlightenment Now: The Case for Reason, Science, Humanism, and Progress (New York: Viking, 2018). 21.  Linda Villarosa, “Why America’s Black Mothers and Babies Are in a Life-or-Death Crisis,” nytimes.com, April 11, 2018, https://www.nytimes.com/2018/04/11/magazine/black​ -mothers-babies-death-maternal-mortality.html. 22.  Dean T. Jamison et al., “Global Health 2035,” Lancet 382, no. 9908 (2013): 1898–955. 23.  World Bank, “Life Expectancy at Birth, Total (Years),” data.worldbank.org, accessed March 7, 2019, http://data.worldbank.org/indicator/SP.DYN.LE00​.IN?order=wbapi_data​ _value_2014+wbapi_data_value+wbapi_data_value-last&sort​=asc. 24.  United Nations Population Fund (UNFPA), “Working with Police in South Sudan to Assist Survivors of Gender-Based Violence,” unfpa.org, January 20, 2011, https://www​.unfpa.org/news/working-police-south-sudan-assist-survivors-gender-based -violence

Notes to Introduction and Chapter One 243

25.  Norman Daniels, Just Health (Cambridge, UK: Cambridge University Press, 2007); Amartya Sen, “Why Health Equity?” Health Economics 11, no. 8 (2002): 659–666. 26.  Jo C. Phelan, Bruce G. Link, and Parisa Tehranifar, “Social Conditions as Fundamental Causes of Health Inequalities: Theory, Evidence, and Policy Implications,” Journal of Health and Social Behavior 51, supplement (2010): S28–S40. 27.  Sen, Development as Freedom, 15. 28.  On this point, see Unger, Democracy Realized, 14. 29.  United Nations Children’s Fund (UNICEF), “Health Budget Brief 2018: Zanzibar,” unicef.org, 2018, https://www.unicef.org/tanzania/media/1321/file/UNICEF-Zanzibar​ -2018-Health-Budget-Brief.pdf. 30.  UNICEF, “Health Budget Brief 2019/2020: Zanzibar,” unicef.org, 2020, https:// www.unicef.org/esa/media/8441/file/UNICEF-Tanzania-Zanzibar-2020-Health-Budget​ -Brief-revised.pdf 31.  World Health Organization (WHO), Trends in Maternal Mortality: 1990–2015: Estimates from WHO, UNICEF, UNFPA, World Bank Group and the United Nations Population Division (Geneva: WHO, 2015). 32.  Mahmoud F. Fathalla, “Imagine a World Where No Woman Is Denied Her Right to Health—Seven Propositions,” Facts, Views and Vision in ObGyn 3, no. 4 (2011): 247–51. 33.  Paul Farmer, Pathologies of Power: Health, Human Rights, and the New War on the Poor (Berkeley, CA: University of California Press, 2003). Chapter One 1.  Rodolfo Walsh, “Open Letter to the Military Junta,” opendemocracy.net, March 24, 1977, https://www.opendemocracy.net/en/democraciaabierta/lesson-from-argentina-intimes-of-trump/. Walsh’s letter was written from a clandestine hideout on the one-year anniversary of the coup, and circulated as a pamphlet of resistance. Walsh was tracked down by military officials and died resisting them. 2.  Carlos Santiago Nino, Radical Evil on Trial (New Haven, CT: Yale University Press 1996), vii. 3.  Juan Carlos Simo, “Una fiesta de 15 y otros apuntes de la banalidad del mal y el terror en la ESMA,” Medium, March 24, 2016. 4.  National Commission on the Disappearance of Persons (Comisión Nacional sobre la Desaparición de Personas; CONADEP), “Nunca Más,”desaparecidos.org, 1984, http:// www.desaparecidos.org/nuncamas/web/english/library/nevagain/nevagain_001.htm. 5.  Abuelas de Plaza de Mayo, “Children Born in Captivity,”abuelas.org, n.d., https:// abuelas.org.ar/idiomas/english/cases/listado_cautiverio.htm. 6.  Lucía Luna, “Un actor de ‘la guerra sucia’ revela los crímenes de los militares,” proceso.com, January 14, 1984, https://www.proceso.com.mx/137811/un-actor-de-la-guerra​ -sucia-revela-los-crimenes-de-los​-militares. 7.  Tina Rosenberg, Children of Cain: Violence and the Violent in Latin America (New York: Penguin Books, 1991), 89. 8.  Tali Goldman, “La nena que jugaba en la esma,” revistaanfibia.com, May 11, 2016, https://www.revistaanfibia.com/la-nena-jugaba-la-esma/.

244 Notes to Chapter One

9.  Alejandra Dandan, “El otro lado del centro clandestino,” pagina12.com, April 30,2016, https://www.pagina12.com.ar/diario/elpais/1-298209-2016-04-30.html?​ mobile=1. 10.  “Lista de víctimas de desaparición forzada y ejecución sumaria por la secretaría de derechos humanos,” desaparecidos.org, n.d., http://www.desaparecidos.org/arg/ victimas/listas/. 11.  Simone de Beauvoir, The Second Sex, trans. H. M. Parshley (New York: Vintage Books, 1972 [1949]), xviii. 12.  Ngaire Woods, “Bretton Woods Institutions,” in Oxford Handbook on the United Nations, ed. Sam Daws and Thomas G. Weiss (Oxford, UK: Oxford University Press, 2008), 235. 13.  World Trade Organization (WTO), “Fiftieth Anniversary of the Multilateral Trading System,” press brief, wto.org, January 1, 1998, https://www.wto.org/english/thewto_e/ minist_e/min96_e/chrono.htm. 14.  Immanuel Kant, Grounding for the Metaphysics of Morals, trans. James W. Ellington (Cambridge, MA: Hackett Publishing, 1981), 434. 15.  Audre Lorde, “The Uses of Anger: Women Responding to Racism,” in Sister Outsider: Essays & Speeches by Audre Lorde (Trumansburg, NY: Crossing Press, 1984), 132–33. 16.  Carlos Santiago Nino, Derecho, moral y política: Una revisión de la teoría general del derecho (Barcelona: Editorial Ariel, 1994), 11. 17.  US Mission Geneva, Geneva Consensus Declaration. UN Doc. A/75/626 (December 7, 2020). 18.  Jacques Maritain, Man and the State (Chicago: University of Chicago Press, 1951), 77. 19.  Maritain, 77. 20.  John Rawls, Political Liberalism (New York: Columbia University Press, 1993), 134. 21.  Cass R. Sunstein, “Incompletely Theorized Agreements,” Harvard Law Review 108, no. 7 (1995): 1733–72. 22.  John Tobin, The Right to Health in International Law (Oxford, UK: Oxford University Press, 2012); Jennifer Prah Ruger, “Toward a Theory of a Right to Health: Capability and Incompletely Theorized Agreements,” Yale Journal of Law and the Humanities 18, no. 2 (2006): 273–327. 23.  Ruger, 309. 24.  Sally Engle Merry, “Transnational Rights and Local Activism: Mapping the Middle,” American Anthropologist 108 (2006), 39. 25.  UN General Assembly, Proclamation of Teheran, Final Act of the International Conference on Human Rights, Teheran, 22 April to 13 May 1968, UN Doc. A/CONF. 32/41 ¶13. 26.  Joseph L. Love, “Raúl Prebisch and the Origins of the Doctrine of Unequal Exchange,” Latin American Research Review 15, no. 3 (1980): 45–72. 27.  Raúl Prebisch and Economic Commission for Latin America, The Economic Development of Latin America and Its Principal Problems, UN Sales No. 50 II.G. 2 (Lake Success, NY: UN Department for Economic Affairs, 1950); Charles R. Beitz, “Justice and International Relations,” Philosophy and Public Affairs 4, no. 4 (1975): 360–89.

Notes to Chapter One 245

28.  UN General Assembly, Resolution 3201 (S-VI), Declaration of the Establishment of a New International Economic Order, A/RES/S-6/3201 (May 1, 1974); UN General Assembly, Resolution 3281 (XXIX), Charter on the Economic Rights and Duties of States, A/RES/29/3281 (December 12, 1974). For a more detailed discussion, see Samuel Moyn, Not Enough: Human Rights in an Unequal World (Cambridge, MA: Harvard/Belknap Press, 2018), 68–145. 29.  UN Commission on Human Rights, Further Promotion and Encouragement of Human Rights and Fundamental Freedoms, Including the Question of the Programme and Methods of Work of the Commission, UN Doc. E/CN.4/RES/4 (XXXIII) (Feb. 21, 1977). 30.  UN General Assembly, Resolution 41/128, Declaration on the Right to Development, A/RES/41/128 (Dec. 4, 1986). 31.  Antonio Cassese, Study of the Impact of Foreign Economic Aid and Assistance on Respect for Human Rights in Chile, UN Doc. E/CN.4/Sub.2/412, Vols. I−IV (1978). 32.  Samuel Moyn, The Last Utopia: Human Rights in History (Cambridge, MA: Belknap Press of Harvard University Press, 2010), 8. 33.  Dani Rodrik, The Globalization Paradox: Why Global Markets, States, and Democracy Can’t Coexist (Oxford, UK: Oxford University Press, 2011), 110. 34.  Bureau of the Census, “Characteristics of the Low-Income Population: 1973,” Series P-60, No. 98 (Washington DC: Government Printing Office, 1975). 35.  UN Human Rights Council, Report of the Special Rapporteur on Extreme Poverty and Human Rights, UN Doc. A/HRC/32/31 ¶12 (April 28, 2016). 36.  Commission on Social Determinants of Health, Closing the Gap in a Generation: Health Equity through Action on the Social Determinants of Health−Final Report of the Commission on Social Determinants of Health (Geneva: World Health Organization, 2008), 1. 37.  UN General Assembly, Resolution 2200A (XXI), International Covenant on Economic, Social and Cultural Rights [UN Covenant on ESC Rights], A/RES/21/2200A, art. 12 (December 16, 1966). 38.  World Health Organization (WHO), “Constitution of the World Health Organization,” Official Record (July 22, 1946), 2, 100. 39.  A/RES/21/2200A, art. 12. 40.  A/RES/21/2200A, art. 2. 41.  Aryeh Neier, “Social and Economic Rights: A Critique,” Human Rights Brief 13, no. 2 (2006): 2. 42.  de Beauvoir, Second Sex, 161. 43.  Susan Dunn, ed., The Social Contract and the First and Second Discourses: JeanJacques Rousseau (New Haven, CT: Yale University Press, 2002), 189. 44.  United Nations, Report of the UN World Populations Conference, 1974, undocs. org, https://undocs.org/en/E/CONF.60/19 (n.d.). 45.  UN General Assembly, Resolution 3520 (XXX), World Conference of the International Women’s Year, A/RES/30/3520 (December 15, 1975). 46.  UN General Assembly, Resolution 34/180, Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), A/RES/34/180, art. 5 (December 18, 1979).

246 Notes to Chapter One

47.  Holly J. McCammon et al., “Becoming Full Citizens: The U.S. Women’s Jury Rights Campaigns, the Pace of Reform, and Strategic Adaptation,” American Journal of Sociology 113, no. 4 (2008), 1104–47. 48.  A/RES/34/180, art. 12. 49.  UN Department of International Economic and Social Affairs, The World’s Women 1970–1990: Trends and Statistics, UN Sales No. E.90.XVII.3 (1991), 4. 50.  John Cleland, “Contraception in Historical and Global Perspective,” Best Practice and Research Clinical Obstetrics & Gynaecology 23, no. 2 (2009), 168. 51.  For example, see Judith Jarvis Thomson, “A Defense of Abortion,” in Biomedical Ethics and the Law, ed. James Humber and Robert Almeder (Boston: Springer, 1976), 39–54. 52.  Roe v. Wade, 410 U.S. 113 (1973). 53.  Griswold v. Connecticut, 381 US 479, 483 (1965). 54.  Robin West, foreword to “The Supreme Court 1989 Term,” Harvard Law Review 104, no. 1 (1989): 85. 55.  West, 85. 56.  Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 US 833, 874 (1992); Harris v. McRae, 448 US 297, 314 (1980). 57.  Bundesverfassungsgericht [BVerfG] [Federal Constitutional Court] Feb. 25, 1975, 39 Entscheidungen des Bundesverfassungsgerichts [BVerfGE] 1 (2–3), 1975 (Ger.). 58.  39 BVerfGE 1. 59.  Código Penal de la Nación Argentina [Federal Criminal Code], art. 86 (Boletín Oficial, Buenos Aires, 1985). The phrase “idiot or insane woman” was in the original 1921 code. 60.  See Paola Berrgallo, “The Struggle against Informal Rules on Abortion in Argentina,” chap. 7 in Abortion Law in Transnational Perspective: Cases and Controversies, ed. Rebecca J. Cook, Joanna N. Erdman, and Bernard M. Dickens (Philadelphia: University of Pennsylvania Press, 2015), 143–65. 61.  See Alicia Ely Yamin and Agustina Ramón Michel, “Engendering Democracy, Advancing Reproductive Justice: The Legalization of Abortion in Argentina,” in Research Handbook on International Abortion Law, ed. Mary Ziegler (Cheltenham, UK: Edward Elgar, 2023). 62.  This section draws on Alicia Ely Yamin, “Future Directions for Human Rights Praxis in Health: The Imperative of (Re)claiming the Public,” in Reviste de Juriste de Science Po June (2021), 27. 63.  Martha Nussbaum, “Is Privacy Bad for Women,” bostonreview.net, April 1, 2000, http://bostonreview.net/world/martha-c-nussbaum-privacy-bad-women. 64.  H. Charlesworth and C. Chinkin, The Boundaries of International Law: A Feminist Analysis, (Manchester, UK: Manchester University Press, 2000). 65.  Committee on the Elimination of Discrimination against Women (CEDAW), General Recommendation No. 35 on Gender-Based Violence against Women, Updating General Recommendation No. 19, CEDAW/G/GC/35 (July 14, 2017). 66.  Jeffery Kluger, “Domestic Violence Is a Pandemic within the COVID-19 Pandemic,” time.com, February 3, 2021, https://time.com/5928539/domestic-violence-covid-19/.

Notes to Chapter One 247

67.  World Health Organization (WHO), “Devastatingly pervasive: 1 in 3 women globally experience violence,” who.int, March 9, 2021, https://www.who.int/news/ item/09-03-2021-devastatingly-pervasive-1-in-3-women-globally-experience-violence. 68.  Economic Commission for Latin America and the Caribbean (ECLAC), “The COVID-19 Pandemic Is Exacerbating the Care Crisis in Latin America and the Caribbean,” cepal.org, April 2020, https://www.cepal.org/en/publications/45352-covid-19-pandemic​ -exacerbating-care-crisis-latin-america-and​-caribbean. 69.  Soutik Biswas, “How India Calculates the Value of Women’s Housework,” bbc. com, January 24, 2021, https://www.bbc.com/news/world-asia-india-55762123. 70.  R. Balakrishnan, J. Heintz, and D. Elson, Rethinking Economic Policy for Social Justice: The Radical Potential of Human Rights (London: Routledge, 2016). 71.  Nancy Fraser, “Gender Equity and the Welfare State—A Postindustrial Thought Experiment,” in Democracy and Difference: Contesting the Boundaries of the Political, ed. Seyla Benhabib (Princeton, NJ: Princeton University Press, 1996), 235. 72.  Soutik Biswas, “How India Calculates.” 73.  UN Economic Commission for Latin America and the Caribbean (ECLAC) COVID-19 Observatory in Latin America and the Caribbean, “Follow-Up of the Evolution of COVID-19 Measures,” cepal.org, March 20, 2021, https://statistics.cepal.org/forms/ covid-countrysheet/index.html?country=ARG citing https://www.argentina.gob.ar/sites/ default/files/dneig-ingresofamiliardeemergencia-analisisydesafios.pdf. 74.  UN Human Rights Office of the High Commissioner (OHCHR), “Special Rapporteur on Extreme Poverty Calls for the Creation of a Global Fund for Social Protection during Interactive Dialogue with the Human Rights Council,” press release, OHCHR, June 30, 2021. Proposals for a global fund for social protection by the International Labour Organization and the special rapporteur suggested the outlines of a sustained funding mechanism that would enable such long-term investment in social protection and recognition of the social value of care work. 75.  Compromiso de Buenos Aires, XV Conferencia Regional Sobre la Mujer de América Latina y el Caribe (Nov. 2022) https:// www.cepal.org/es/publicaciones/48468​ -compromiso-buenos​-aires 76.  H. Verbitsky and J. Bohoslavsky, eds., “Past and Present of Economic Complicity,” Part I of The Economic Accomplices to the Argentine Dictatorship: Outstanding Debts (Cambridge, UK: Cambridge University Press, 2015), 17–44. 77.  Giorgina Lo Giudici, “Villa Constitución. La deuda de Acindar es con el pueblo trabajador,” laizquierdadiario.com, April 4, 2020, https://www.laizquierdadiario.com/ La-deuda-de-Acindar-es-con-el-pueblo-trabajador. 78. Alfajores are small pastries, in this case made with corn flour as well as dulce de leche. 79.  Gary Wynia, Argentina: Illusions and Realities (New York: Holmes and Meier, 1986):109. 80.  H. Verbitsky and J. Bohoslavsky eds., “Introduction: State Terrorism and the Economy: From Nuremberg to Buenos Aires,” in The Economic Accomplices to the ­Argentine Dictatorship: Outstanding Debts (Cambridge, UK: Cambridge University Press, 2015).

248 Notes to Chapter One and Two

81.  P. J. Williams, “Alchemical notes: Reconstructing Ideals from Deconstructed Rights” Harvard Civil Rights−Civil Liberties Law Review 22 (Spring 1987): 433. Chapter Two 1.  Eduardo Galeano, Upside Down: A Primer for the Looking-Glass World, trans. Mark Fried (New York: Picador, 1998), 34. 2.  Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors (New York: Macmillan Publishers, 2001), 133. 3.  Editorial Board, “A Woman’s Rights: Part 4: Slandering the Unborn,” nytimes. com, December 28, 2018, https://www.nytimes.com/interactive/2018/12/28/opinion/crack​ ­-babies-racism.html. 4.  Brown v. Board of Education of Topeka, 347 U.S. 483 (1954); Brown v. Board of Education of Topeka, 349 U.S. 294 (1955); Morgan v. Hennigan, 379 F. Supp. 410 (D. Mass., 1974). 5.  Center on Human Needs, “Social Capital and Health Outcomes in Boston,” vcu. edu, 2012, https://societyhealth.vcu.edu/media/society-health/pdf/PMReport_Boston.pdf. 6.  Mark Melnik and Abby Raisz, “Across Two Waves: COVID-19 Disparities in Massachusetts,” bostonindicators.org, 2020, https://www.bostonindicators.org/reports/ report-website-pages/covid_indicators-x2/2020/december/persisting-covid-disparities. 7.  Franklin Delano Roosevelt, Radio Address on Unemployment and Social Welfare, Albany, New York, October 13, 1932, presidency.ucsb.edu, https://www.presidency.ucsb.edu/ documents/radio-address-unemployment-and-social-welfare-from-albany-new-york. 8.  Personal Responsibility and Work Opportunity Reconciliation Act of 1996, Pub. L. No. 104–193, 110 Stat. 2105 (1996). 9.  For example, see Charles Murray and Richard Herrnstein, The Bell Curve: Intelligence and Class Structure in American Life (New York: Free Press Paperbacks, 1996), 186–201. 10.  John F. Pfaff, The War on Drugs and Prison Growth: Limited Importance and Limited Legislative Options, 52 Harv. J. Legis. 173, fordham.edu, 2015, https://ir.lawnet​ .fordham.edu/faculty_scholarship/651. 11.  Aziza Ahmed, “Scientific and Medical Expertise in the Prosecution of Pregnant Women,” Harvard Law and Policy Review blog, August 1, 2020. 12.  Niall McCarthy, “Taxing The Rich: The Evolution Of America’s Marginal Income Tax Rate,” forbes.com, April 26, 2021, https://www.forbes.com/sites/niallmccar​ thy/2021/04/26/taxing-the-rich-the-evolution-of-americas-marginal-income-tax-rate​ -infographic/​?sh=7e8666ba5fdc. 13.  John Williamson, “A Short History of the Washington Consensus,” Law and Business Review of the Americas 15 (2009): 7–23. 14.  Wendy Brown, Undoing the Demos: Neoliberalism’s Stealth Revolution (New York: Zone Books, 2015), 9–10. 15.  Joseph E. Stiglitz, Globalization and Its Discontents (New York: W. W. Norton, 2002). 16.  For example, see Audrey R. Chapman, Global Health, Human Rights and the Challenge of Neoliberal Policies (Cambridge, UK: Cambridge University Press, 2016).

Notes to Chapter Two 249

17.  Amartya Sen, Inequality Reexamined (Cambridge, MA: Harvard University Press, 1992). 18.  Amartya Sen, Development as Freedom (Oxford, UK: Oxford University Press, 2001), 87. 19.  United Nations Development Programme (UNDP), “Human Development Index (HDI),” undp.org, 2019, http://hdr.undp.org/en/content/human-development-index-hdi. 20.  In the 1970s, under the Nixon administration, the original Bretton Woods agreement that tied international currency exchange to the gold convertibility of the US dollar came apart. See “The End of the Golden Age, the Debt Crisis and Development Setbacks,” chap. 3 in World Economic and Social Survey, un.org, 2017, https://www.un.org/develop​ ment/desa/dpad/wp-content/uploads/sites/45/WESS_2017_ch3.pdf. 21.  John Peabody, “Economic Reform and Health Sector Policy: Lessons from Structural Adjustment Programs,” Social Science and Medicine 43, no. 5 (1996): 823–35. 22.  John Williamson, “The Washington Consensus as Policy Prescription for Development,” in Development Challenges in the 1990s: Leading Policymakers Speak from Experience, ed. Timothy Besley and Roberto Zagha (Washington, DC: World Bank Publications, 2005), 33–53. 23.  Brooke G. Schoepf, Claude Schoepf, and Joyce V. Millen, “Theoretical Therapies, Remote Remedies: SAPs and the Political Ecology of Poverty and Health in Africa,” in Dying for Growth: Global Inequality and the Health of the Poor, ed. Jim Yong Kim et al. (Monroe, ME: Common Courage Press, 2000), 109. 24.  Peabody, “Economic Reform and Health,” 823; also see Chapman, Global Health, Human Rights, 171–73. 25.  Schoepf, Schoepf, and Millen, “Theoretical Therapies,” 113. 26. UNICEF, Adjustment with a Human Face: Protecting the Vulnerable and Promoting Growth, ed. Giovanni Andrea Cornia et al. (New York: Clarendon Press, 1987). 27.  Schoepf, Schoepf, and Millen, “Theoretical Therapies,” 123. 28.  UN General Assembly, Resolution 41/128, Declaration on the Right to Development, A/RES/41/128, art. 1 (Dec. 4, 1986). 29.  Peter A. Hall and David W. Soskice, eds., Varieties of Capitalism: The Institutional Foundations of Comparative Advantage (Oxford, UK: Oxford University Press, 2001). 30.  Dani Rodrik, The Globalization Paradox: Why Global Markets, States, and Democracy Can’t Coexist (Oxford, UK: Oxford University Press, 2011), 75. 31.  Smoot-Hawley Tariff Act of 1930, Pub. L. No. 71–361, 46 Stat. 590 (1930). 32.  Ruggie, “Globalization,” 52. 33. Stiglitz, Globalization, 84. 34.  Douglas Black, Inequalities in Health: Report of a Research Working Group (Black Report) (London: UK: Department of Health and Social Security, 1980). 35.  World Health Organization (WHO), “Constitution of the World Health Organization” (Geneva: WHO, July 22), 1946. 36.  World Health Organization (WHO) and United Nations Children’s Fund (UNICEF), “Declaration of Alma-Ata,” in Primary Health Care: Report of the International Conference on Primary Health Care, Alma-Ata, USSR, Sept. 6–12, 1978 (Geneva: WHO,

250 Notes to Chapter Two

1978), 2–6; World Health Organization (WHO), Global Strategy for Health for All by the Year 2000 (Geneva: WHO, 1981). 37.  WHO and UNICEF, “Declaration of Alma-Ata,” art. 1. 38.  World Health Organization (WHO), The Ottawa Charter for Health Promotion (Geneva: World Health Organization, 1986). 39.  Benjamin G. Davis, “Could You Patent the Sun?” ACS Central Science 7, no. 4 (2021): 508–09. 40.  Edmund T. Pratt Jr., “Intellectual Property Rights and International Trade,” iatp. org, December 21, 1999, https://www.iatp.org/documents/intellectual-property-rights​ -and-international​-trade. 41.  Theodore M. Brown, and Elizabeth Fee, “Rudolf Carl Virchow: Medical Scientist, Social Reformer, Role Model.” American Journal of Public Health. 96, no. 12 (2006): 2104–05. 42. Sontag, Illness as Metaphor, 113. 43.  Jim Hubbard and Sarah Schulman. ACT UP Oral History Project Digital Collection (New York: ACT UP, 2002). 44.  Elizabeth Fee and Nancy Krieger, “Understanding AIDS: Historical Interpretations and the Limits of Biomedical Individualism,” American Journal of Public Health 83, no. 10 (1993): 1477–86. 45.  For example, see Jonathan Mann and Daniel Tarantola, “Responding to HIV/ AIDS: A Historical Perspective,” Health and Human Rights Journal 2, no. 4 (1998): 5–8. 46.  Nancy Krieger, Epidemiology and the People’s Health: Theory and Context (Oxford, UK: Oxford University Press, 2011). 47.  See Jonathan Mann, et al., Health and Human Rights, Health and Human Rights Journal 1, no. 1 (1994): 7–23. 48.  Eugene T. Richardson, Epidemic Illusions: On the Coloniality of Global Public Health (Cambridge, MA: MIT Press, 2020). 49.  George Orwell, “How the Poor Die,” in Shooting an Elephant and Other Essays (London: Secker and Warburg, 1950). 50.  Vicente Navarro, “Production and the Welfare State: The Political Context of Reforms,” International Journal of Health Services 21, no. 4 (1991): 585–614. 51.  Anne-Emanuelle Birn, Laura Nervi, and Eduardo Siqueira, “Neoliberalism Redux: The Global Health Policy Agenda and the Politics of Cooptation in Latin America and Beyond,” Development and Change 47, no. 4 (2016): 734–59. 52.  James Cockcroft and Jane Canning, eds., Salvador Allende Reader: Chile’s Voice of Democracy (Melbourne: Ocean Press, 2000), 36–42. 53.  Constituição Federal de 1988 [C.F.] [Constitution], artigo 1 (Braz.). 54.  Kenneth Arrow, “Uncertainty and the Welfare Economics of Medical Care,” American Economic Review 53, no. 5 (1963): 941–67. 55.  David U. Himmelstein, et al, “Medical Bankruptcy: Still Common Despite the Affordable Care Act,” American Journal of Public Health 109, no. 3 (2019): 431–33. 56.  United Nations Children’s Fund (UNICEF), State of the World’s Children Report 1982–1983 (New York: Oxford University Press, 1982), 25.

Notes to Chapter Two and Three

251

57.  Peter Adamson et al., Jim Grant—UNICEF Visionary, ed. Richard Jolly (Florence, Italy: UNICEF Innocenti Research Centre, 2001). 58.  UNICEF, State of the World’s Children, 4. 59.  Emi Suzuki and Haruna Kashiwase, “New Child and Youth Mortality Estimates Show Dramatic Reductions, but Progress Is Threatened by Impact of COVID-19,” blogs. worldbank.org, September 9, 2020, https://blogs.worldbank.org/opendata/new-child-and​ -youth-mortality-estimates-show-dramatic-reductions-progress​-threatened. 60.  The Convention on the Rights of the Child came into force on September 2, 1990. UN General Assembly, Resolution 44/25, Convention on the Rights of the Child, A/ RES/44/25 (Nov. 20, 1989). 61.  Felton Earls and Mary Carlson, “The Social Ecology of Child Health and WellBeing,” annurev.publhealth, 2001, https://doi.org/10.1146/annurev.publhealth.22.1.143. 62.  UN Committee on the Rights of the Child, General Comment No. 14 (2013) on the Right of the Child to Have His or Her Best Interests Taken as a Primary Consideration (Art. 3, Para. 1), UN Doc. CRC/C/GC/14 (May 29, 2013). 63.  A/RES/44/25, art. 12. 64.  Gloria Steinem, Speech to the National Women’s Political Caucus Conference, Albuquerque, NM, July 1981. 65.  Suruchi Thapar-Björkert, Lotta Samelius, and Gurchathen S. Sanghera, “Exploring Symbolic Violence in the Everyday: Misrecognition, Condescension, Consent and Complicity,” Feminist Review 112 (2016): 148. 66.  Susan Sontag, Regarding the Pain of Others (London: Penguin, 2004). 67. Galeano, Upside Down, 32. 68.  Nancy Fraser, The Old Is Dying and the New Cannot Be Born (Brooklyn, NY: Verso 2019). Chapter Three 1.  Jonathan Mann et al., “Health and Human Rights,” Health and Human Rights 1 (1994): 19. 2.  Subcomandante Marcos, “The Fourth World War Has Begun,” trans. Nathalie de Broglio, Nepantla: Views from the South 2, no. 3 (2001): 560–61. 3.  James Fredrick, “On The Hunt For Poppies In Mexico—America’s Biggest Heroin Supplier,” npr.org, January 14, 2018, https://www.npr.org/sections/parallels/2018/01/14/571184153/ on-the-hunt-for-poppies-in-mexico-americas-biggest-heroin-supplier. 4.  Catherine Nolan-Ferrell, “Agrarian Reform and Revolutionary Justice in Soconusco, Chiapas: Campesinos and the Mexican State, 1934–1940,” Journal of Latin American Studies 42, no. 3 (2010): 551–85. 5.  Gabriela Soto Laveaga, “Chapter 4: Mexico’s Historical Models for Providing Rural Healthcare,” ed. A. Medcalf, S. Bhattacharya, H. Momen et al., Health for All: The Journey of Universal Health Coverage (Hyderabad, India: Orient Blackswan, 2015). 6.  Ejército Zapatista de Liberación Nacional (EZLN) Command, “First Declaration from the Lacandón Jungle, Today We Say ‘Enough is Enough!’ (Ya Basta!)” Document #8, library.brown.edu, https://library.brown.edu/create/modernlatinamerica/chapters/

252 Notes to Chapter Three

chapter-3-mexico/primary-documents-with-accompanying-discussion-questions/doc​ ument-9-first-declaration-from-the-lacandon-jungle-today-we-say-enough-is-enough​ -ya-basta-ezln-command​-1993/. 7.  “Meet the World’s Newest Billionaires,” Forbes, July 5, 1993, 87. 8.  UN Conferences: Environmental and Sustainable Development, “United Nations Conference on Environment and Development, Rio de Janeiro, Brazil, 3–14 June 1992,” un.org, https://www.un.org/en/conferences/environment/rio1992. 9.  World Conference on Human Rights, Vienna Declaration and Programme of Action: Adopted by the World Conference on Human Rights in Vienna, A/CONF/157/23, ¶5 (June 25, 1993). 10.  Boutros Boutros-Ghali, “Opening Statement,” A/CONF.157/23. 11.  A/CONF/157/23, ¶25. 12.  A/CONF/157/23, ¶1. 13.  A/CONF/157/23, ¶1. 14.  UN Office of the High Commissioner on Human Rights (OHCHR), “About Us: World Conference on Human Rights, June 14–25, 1993, Vienna, Austria,” ohchr.org, https:// www.ohchr.org/en/aboutus/pages/viennawc.aspx. 15.  UN Population Information Network (POPIN), “Highlights of NGO Forum ’94,” ICPD 94 Newsletter 19, September 1994, https://www.unfpa.org/sites/default/files/ resource-pdf/ICPD_Newsletter_1994_No._19.pdf 16.  Phumzile Mlambo-Ngcuka, “The Beijing Platform for Action Turns 20,” unwomen. org, May 22, 2014, http://beijing20.unwomen.org/en/news-and-events/stories/2014/5/ phumzile-mlambo-ngcuka-un-women. 17.  Elisabeth Reichert, “‘Keep on Moving Forward’: NGO Forum on Women, Beijing, China,” Social Development Issues 18 (1996): 89–97. 18.  For example, see Philip Alston, The United Nations and Human Rights: A Critical Appraisal (Oxford, UK: Oxford University Press, 1995). 19.  UN General Assembly, Resolution 48/141, High Commissioner for the Promotion and Protection of All Human Rights, A/RES/48/141 (December 20, 1993). 20. A/CONF/157/23, ¶. 21.  Naila Kabeer, “Tracking the Gender Politics of the Millennium Development Goals: Struggles for Interpretive Power in the International Development Agenda,” Third World Quarterly 36, no. 2 (2015): 379. 22.  Charlotte Bunch and Niamh Reilly, Demanding Accountability: The Global Campaign and Vienna Tribunal for Women’s Human Rights (Newark, NJ: Rutger’s University Center for Women’s Global Leadership, United Nations Development Fund for Women, 1994), 15–16. 23.  UN General Assembly, Resolution 48/104, Declaration on the Elimination of Violence against Women, A/RES/48/104 (December 20, 1993). 24.  The Convention entered into force on March 5, 1995. Organization of American States (OAS), Inter-American Convention on the Prevention, Punishment and Eradication of Violence against Women (Convention of Belém do Pará), 33 ILM 1534 (June 9, 1994).

Notes to Chapter Three 253

25.  Amartya Sen, Development as Freedom (Oxford, UK: Oxford University Press, 2001), 213–16. 26. Sen, Development as Freedom, 213–16. 27.  Marie Jean Antoine Nicholas de Caritat, Marquis de Condorcet, Esquisse d’un Tableau Historique des Progrès de l’Esprit Humain, Xe Epoque (1795), cited in Sen, Development as Freedom, 214. 28.  Thomas Robert Malthus, Essay on the Principle of Population, as It Affects the Future Improvement of Society, with Remarks on the Speculation of Mr. Godwin, M. Condorcet, and Other Writers (London: J. Johnson, 1798), cited in Sen, Development as Freedom, 214. 29.  UN Population Fund (UNFPA), Report of the International Conference on Population and Development: Cairo, September 5–13, 1994, A/CONF.171113/Rev.1 ¶1.8 (1995). 30.  A/CONF.171/13/Rev.1, ¶7.2. 31.  Kabeer, “Tracking,” 377–95. 32.  A/CONF.171/13/Rev.1, ¶8.25. 33.  Mindy Roseman and Laura Reichenbach, “Global Reproductive Health and Rights: Reflecting on ICPD,” in Reproductive Health and Human Rights: The Way Forward (Philadelphia: University of Pennsylvania Press, 2011), 9. 34.  UN Entity for Gender Equality and the Empowerment of Women, Beijing Declaration and Platform of Action, A/CONF.177/20/Rev.1 ¶113 (1995). 35.  A/CONF.177/20, ¶90. 36.  Judith Butler, Gender Trouble: Feminism and the Subversion of Identity (New York: Routledge, 1990). 37.  Kabeer, “Tracking,” 380–81. 38.  Committee on Economic, Social and Cultural Rights (CESCR), General Comment No. 3: The Nature of States Parties’ Obligations, UN Doc. E/1991/23 ¶10, art. 2 (1990). 39.  UN Doc. E/1991/23, ¶10. 40.  Katherine Young, “The Minimum Core of Economics and Social Rights: A Concept in Search of Content,” Yale Journal of International Law 33 (2008), 113–75. 41.  UN Doc. E/1991/23, ¶9. 42.  Claudia Bittner, “Human Dignity as a Matter of Legislative Consistency in an Ideal World: The Fundamental Right to Guarantee a Subsistence Minimum in the German Federal Constitutional Court’s Judgment of 9 February 2010,” in “Special Section on The Hartz IV Case and the German Sozialstaat,” germanlawjournal, November 2011, http://www.germanlawjournal.com/volume-12-no-11/. 43.  Karl Klare, “Legal Culture and Transformative Constitutionalism,” South African Journal on Human Rights 14 (1998): 150. 44.  Judgment C-1064, Corte Constitucional [C.C.] [Constitutional Court], octubre 10, 2001, Sentencia C-1064/01 (Colom.). 45.  Judgement C-180, Corte Constitucional [C.C.] [Constitutional Court], abril 14, 1994, Sentencia C-180/94 (slip op.)(Colom.). 46.  Judgment T-406, Corte Constitucional [C.C.] [Constitutional Court], junio 5, 1992, Sentencia T-406 (Colom.).

254 Notes to Chapter Three

47.  Bruce Wilson, “Costa Rica: Health Rights Litigation: Causes and Consequences,” in Litigating Health Rights: Can Courts Bring More Justice to Health? ed. Alicia Ely Yamin and Siri Gloppen, Harvard Human Rights Series (Cambridge, MA: Harvard University Press, 2011). 48.  Daniel M. Brinks, Varun Gauri, and Kyle Shen, “Social Rights Constitutionalism: Negotiating the Tension between the Universal and the Particular,” Annual Review of Law and Social Science 11 (2015): 290–91. 49.  Jean Drèze, “Democracy and the Right to Food,” in Human Rights and Development: Towards Mutual Reinforcement, ed. Philip Alston and Mary Robinson (New York: Oxford University Press, 2005), 54. 50.  Norman Daniels, Just Health: Meeting Health Needs Fairly (New York: Cambridge University Press, 2008). 51.  For an example of this approach, see Benjamin Mason Meier, Margherita Cinha, and Lawrence Gostin, “Advancing Human Rights through Global Health Governance,” in Foundations of Global Health & Human Rights, ed. Lawrence Gostin and Benjamin Mason Meier (New York: Oxford University Press, 2020), 197, 214. 52.  Grainne da Búrca, Reframing Human Rights in a Turbulent Era (Oxford, UK: Oxford University Press, 2021), 3. 53.  Rachel Rebouché, “A Functionalist Approach to Comparative Abortion Law,” in Abortion Law in Transnational Perspective: Cases and Controversies, ed. Bernard M. Dickens, Joanna N. Erdman, and Rebecca J. Cook (Philadelphia: University of Pennsylvania Press, 2014), 98–118. 54.  Roberto Gargarella, Latin American Constitutionalism, 1810-2010: The Engine Room of the Constitution (New York: Oxford Academic, 2013), 139. 55.  Center for Justice and International Law (CEJIL), “About CEJIL,” cejil.org, n.d., https://cejil.org/en 56.  For example, S v. Jordan and Others (Sex Workers Education and Advocacy Task Force and Others as Amici Curiae), CCT31/01, [2002] ZACC 22, (6) SA 642 (CC). 57.  Martha Finnemore and Kathryn Sikkink, “International Norm Dynamics and Political Change,” International Organization 52, no. 4 (1998): 896. 58.  Luisa Cabal, Mónica Roa, and Lilian Sepúlveda-Oliva, “What Role Can International Litigation Play in the Promotion and Advancement of Reproductive Rights in Latin America?” Health and Human Rights 7 (2003): 52. 59.  UN Committee against Torture, Concluding Observations: Mexico, UN Doc. A/48/44(SUPP) ¶¶208–229 (Jan. 1, 1993). 60.  For example, see Karen Engle, Zinaida Miller, and D. M. Davis (eds.), Anti-­ Impunity and the Human Rights Agenda, (Cambridge, UK: Cambridge University Press, 2016). 61.  Asa Cristina Laurell, “La Política Social en el Proyecto Neoliberal. Necesidades Económicas y Realidades Sociopolíticas.” Cuadernos Médico Sociales 60 (1992): 3–8. 62.  Juan Manuel Barrrerra Aguirre, “Sindicato de Ford, Una Historia Conflictiva,” archivo.eluniversal.org, 2002, https://archivo.eluniversal.com.mx/nacion/76384.html.

Notes to Chapter Three 255

63.  Kira Dault, “What Is the Preferential Option for the Poor?” uscatholic.org, January 22, 2015, https://uscatholic.org/articles/201501/what-is-the-preferential-option-for-the-poor/. 64.  Red Nacional de Organismos Civiles de Derechos Humanos: Todos los Derechos Para Todas y Todos (Red TDT), “Acerca de la Red TDT,” redtdt.org, n.d., https://redtdt​ .org.mx/?page_id=13. 65.  Alexander E. Kentikelenis and Sarah Babb, “The Making of Neoliberal Globalization: Norm Substitution and the Politics of Clandestine Institutional Change,” American Journal of Sociology 124, no. 6 (2019): 1721. 66.  Federal Reserve, “The Smithsonian Agreement,” federalreservehistory.org, 2013, https://www.federalreservehistory.org/essays/smithsonian-agreement. 67.  Kentikelenis and Babb, “Neoliberal Globalization,” 1721. 68.  Kentikelenis and Babb, 1724. 69.  Morten Bøås and Desmond McNeill, eds., Global Institutions and Development: Framing the World? (London: Routledge, 2004), 220. 70.  Carlos Salinas de Gortari, “Discurso de Toma de Posesión de Carlos Salinas de Gortari como Presidente Constitucional de los Estados Unidos Mexicanos,” speech to Congress of the Union, Mexico City, December 1, 1988. 71.  Juan Arroyo, Salud: La reforma silenciosa (Lima: Universidad Peruana Cayetano Heredia, 2000). 72.  Thomas L. Friedman, The Lexus and the Olive Tree (New York: Farrar, Straus and Giroux, 1999); Dani Rodrik, The Globalization Paradox: Why Global Markets, States, and Democracy Can’t Coexist (Oxford, UK: Oxford University Press, 2011), 198. 73.  Wendy Brown, Undoing the Demos: Neoliberalism’s Stealth Revolution (New York: Zone Books, 2015). 74.  John Gershman and Alec Irwin, “Getting a Grip on the Global Economy,” in Dying for Growth: Global Inequality and the Health of the Poor, ed. Jim Yong Kim et al. (Monroe, ME: Common Courage Press, 2000), 23. 75.  Ross P. Buckley, “The Facilitation of the Brady Plan: Emerging Markets Debt Trading From 1989 to 1993,” Fordham International Law Journal 21, no. 5 (1998): 1802–89. 76.  Terence Halliday, “Legal Yardsticks: International Financial Institutions as Diagnosticians and Designers of the Laws of Nations,” Center on Law and Globalization research paper no. 11–08, September 17, 2011. 77.  Halliday, “Legal Yardsticks.” 78.  Halliday, 33. 79. Rodrik, Globalization Paradox, 189. 80.  Jenn Moore and Ellen Moore, “A Sea of Trouble: Seabed Mining and International Arbitration in Mexico,” inequality.org, February 24, 2022, https://inequality.org/research/ extractive-seabed-mining-mexico/. 81.  India and South Africa to TRIPS Council, World Trade Organization, “Waiver From Certain Provisions of The TRIPS Agreement for the Prevention, Containment and Treatment Of COVID-19,” October 2, 2020. 82.  “Global Jurists Call for Waiver of Global Intellectual Property Rights for COVID19 Vaccines and Therapeutics,” press reléase, icj.org, August 11, 2021, https://www.icj​.org/

256 Notes to Chapter Three and Four

global-jurists-call-for-waiver-of-global-intellectual-property-rights-for-COVID-19-vac​ cines-and-therapeutics/. 83.  Suerie Moon and Thirukumaran Balasubramaniam, “The World Trade Organization: Carving Out the Right to Health for Access to Medicines and Tobacco Control,” in Rights-Based Governance for a Globalizing World, ed. Benjamin Mason Meier and Lawrence O. Gostin (Oxford, UK: Oxford University Press, 2018), 375–96. 84.  Amy Kapczynski, “The Right to Medicines in an Age of Neoliberalism.” Humanity 10 no. 1 (2019): 79–107. 85.  “Partners In Health Joins Global Movement For Free, Accessible COVID-19 Vaccine,” pih.org., December 16, 2020, https://www.pih.org/article/partners-health-joins​ -global-movement-free-accessible-COVID-19​-vaccine. 86.  Olinka Valdez Morales, “Presentan 27 casos de Violencia Obstétrica ante Tribunal Simbólico,” milenio.com, May 9, 2016, http://www.milenio.com/df/Violencia_Obstet​ rica_GIRE_0_734326864.html; Grupo de Información en Reproducción Elegida (GIRE), “Childbirth: A Violent Experience for Women in Mexico,” gire.org.mx, May 11, 2016, https://gire.org.mx/en/childbirth-a-violent-experience-for-women-in-mexico/. 87.  World Bank, “GDP per capita (current US$)–Mexico,” data.worldbank.org, 2020, https://data.worldbank.org/indicator/NY.GDP.PCAP.CD?locations=MX. 88.  Kerry A. Dolan, “Mexico’s Richest Billionaires 2021,” forbes.com, April 6, 2021, https://www.forbes.com/sites/kerryadolan/2021/04/06/mexicos-richest-billionaires​ -2021/?sh=16fe16​2b5265. 89.  Oscar Lopez and Andrew Jacobs, “In Town with Little Water, Coca-Cola Is Everywhere. So Is Diabetes,” nyt.com, July 14, 2018, https://www.nytimes.com/2018/07/14/ world/americas/mexico-coca-cola-diabetes.html. 90.  Romaine Le Cour Grandmaison, et al, “The Last Harvest? From the US Fentanyl Boom to the Mexican Opium Crisis,” Journal of Illicit Economies and Development 1, no. 33 (2019): 312–29. 91.  Jessica Zarkin and Pepe Merino, “Si desapariciones auguran tragedias, aquí las 32 alarmas de México,” animalpolitico.com, October 16, 2014, https://www.animalpolitico.com/ salir-de-dudas/si-desapariciones-auguran-tragedias-aqui-las-32-alarmas-de-mexico/. 92.  UN Committee on Enforced Disappearances, “Mexico: Prevention Must Be Central to National Policy to Stop Enforced Disappearance, UN Committee Finds,” ohchr. org, April 12, 2022, https://www.ohchr.org/en/press-releases/2022/04/mexico-prevention​ -must-be-central-national-policy-stop​-enforced. 93.  Kapczynski. “Right to Medicines.” 82. Chapter Four 1.  Frantz Fanon, “Medicine and Colonialism,” in A Dying Colonialism (New York: Grove Press; 1965), 125. 2.  Giulia Tamayo, Bajo la piel: Derechos sexuales, derechos (Lima: Centro de la Mujer Peruana Flora Tristán, 2001), 15 (epigraph translated by the author). 3.  This narrative draws from Alicia Ely Yamin, “Deadly Delays—Maternal Mortality in Peru – A Rights-Based Approach to Safe Motherhood,” (Boston, MA: Physicians for Human Rights, 2007).

Notes to Chapter Four 257

4.  Luz Estrada, “Ritos andinos en el parto,” Retamas y orquídeas. Proyecto ReproSalud – Manuela Ramos (Lima: June 1996). 5.  Douglas Sharon, “Andean Mesas and Cosmologies,” Ethnobotany Research and Applications 21 (2021): 1–41. 6.  Juan Carlos Calla Apaza, interview, Azángaro, Peru, May 9, 2007. 7.  Juan Succar Rahme et al., “No. 5: Oficio SA-DM-Nº 0818/97, August 6, 1997, Dirigido por el ex-Ministro de Salud Marino Costa Bauer al Presidente de la República Alberto Fujimori” in Comisión especial sobre actividades de Anticoncepción Quirúrgica Voluntaria (AQV): Informe Final (Lima: Ministerio de Salud, 2002), 101. 8.  Mijke de Waardt and Annelou Ypeij, “Peruvian Grassroots Organizations in Times of Violence and Peace. Between Economic Solidarity, Participatory Democracy, and Feminism,” Voluntas 28 (2017): 1249–69. 9.  Karl Polanyi, The Great Transformation: The Political and Economic Origins of Our Time, 2nd ed. (Boston: Beacon Press, 2001), 3. 10.  Thomas L. Friedman, The Lexus and the Olive Tree (New York: Farrar, Straus and Giroux, 1999), 102–03. 11.  Stephanie McNulty, Voice and Vote: Decentralization and Participation in PostFujimori Peru (Stanford, CA: Stanford University Press, 2011), 20. 12.  Jim Yong Kim et al., “Sickness Amid Recovery: Public Debt and Private Suffering in Peru,” in Dying for Growth: Global Inequality and the Health of the Poor, ed. Jim Yong Kim et al. (Monroe, ME: Common Courage Press, 2002), 127–54. 13.  Political Database of the Americas, “Indigenous Peoples, Democracy and Political Participation,” Georgetown University Edmund A. Walsh School of Foreign Service, pdba.georgetown.edu, October 13, 2006, https://pdba.georgetown.edu/IndigenousPeoples/ demographics.html. 14.  Nelson Manrique, “The Two Faces of Fujimori’s Rural Policy” NACLA Report on the Americas (1993) 30, no. 1 (1996): 39–43. 15.  Centro de Culturas Indígenas, Mujeres indígenas del Perú: avances de la Plataforma de Acción de Beijing, 1995–2000 (Lima: CHIRAPAQ, 2000), 21–27. 16.  Alicia Ely Yamin, Castillos de arena en el camino hacia la modernidad: Una perspectiva desde los derechos humanos sobre el proceso de reforma del sector salud en el Perú (1990–2000) y sus implicancias en la muerte materna (Lima: Centro de la Mujer Peruana Flora Tristán, 2003), 93. 17.  Maruja Barrig, “La persistencia de la memoria: Feminismo y estado en el Perú de los 90,” in Sociedad civil, esfera pública y democratización en América Latina: Andes y Cono Sur, ed. Aldo Panfichi (Lima: Pontificia Universidad Católica del Perú, Fondo de Cultura Económica, 2002), 578–610. 18.  Cited in Giulia Tamayo, Nada personal: Reporte de derechos humanos sobre la aplicación de la anticoncepción quirúrgica en el Perú (Lima: CLADEM, 1999), 15. 19.  Código Penal, Decreto Legislativo No. 635 (1991), art. 170–178 (Perú). 20.  Bonnie Shepard, Delicia Ferrando, and Arlette Beltrán, Evaluación de medio término del Proyecto REPROSALUD (Lima: Project Monitoring, Evaluation and Design Support, 2002). 21.  Rahme et al., “No. 5,” 101.

258 Notes to Chapter Four

22.  Xavier Bosch, “Former Peruvian Government Censured over Sterilisations,” British Medical Journal 325, no. 7358 (2002): 236. 23.  Oracio Potestá, “Información para la verdad” in Verdad, memoria, justicia y reconciliación: Sociedad y comisiones de la verdad (Lima: Asociación Pro Derechos HumanosAprodeh, 2002), 53–56. 24.  Five Pensioners v. Perú, Inter-Am. Ct. H.R. (ser. C) No. 98 (Feb. 28, 2003); Lagos del Campos v. Perú, Inter-Am. Ct. H.R. (ser. C) No. 340 (Aug. 31, 2017), ¶¶142–145. 25.  Pascha Bueno-Hansen, Feminist and Human Rights Struggles in Peru: Decolonizing Transitional Justice (Champaign, IL: University of Illinois Press, 2015). 26.  Adriana Ortiz-Ortega, “Law and the Politics of Abortion,” in Decoding Gender: Law and Practice in Contemporary Mexico, ed. Helga Baitenmann, Victoria Chenaut, and Ann Varley (New Brunswick, NJ: Rutgers University Press, 2007), 206. 27.  María Mamérita Mestanza Chávez v. Perú, Inter-Am. Cmm’n. H.R., Report No. 71/03 (Oct. 22, 2003). 28.  María Mamérita Mestanza Chávez, ¶350. 29.  María Mamérita Mestanza Chávez, ¶668. 30.  M.M. v. Peru, Inter-Am. Ct. H.R., (ser. L) No. 69/14, OEA/Ser.L/V/II.151, doc. 34 (Jul 25, 2014). 31. Tamayo, Nada personal, 50–67. 32.  Mogollón was a fierce activist but later came to write and teach about sexual pleasure and sexual citizenship of diverse women with disabilities, as someone with a physiomotor disability. María Esther Mogollón, “Cuerpos diferentes: Sexualidad y reproducción en mujeres con discapacidad,” in Ciudadanía sexual en América Latina: Abriendo el debate, ed. Carlos F. Cáceres et al. (Lima: Universidad Peruana Cayetano Heredia, 2005), 153–64. 33. CHIRAPAQ, Mujeres Indigenas del Peru: Avances de la Plataforma de Accion de Beijing, 1995–2000, (Lima: CHIRAPAQ, 2000). 34.  Congreso de La República del Perú, “Hilaria Supa Huamán,” congreso.gob, 2006, http://www4.congreso.gob.pe/congresista/2006/hsupa/_hoja-vida.htm. 35.  Juan Pablo Pérez-León Acevedo, “Justice for Forced Sterilization Victims: Pending Points in Peru’s Transitional Justice Agenda,” justiceinfo.net, April 26, 2016, https://www​ .justiceinfo.net/en/27046-justice-and-redress-for-forced-sterilization-victims-pending​ -points-in-perus-transitional-justice-agenda.html. 36.  UN Human Rights Committee, Views of the Human Rights Committee Under Article 5, Paragraph 4, of the Optional Protocol to the International Covenant on Civil and Political Rights (Karen Noelia Llantoy Huamán v. Peru), UN Doc. CCPR/C/85/D/1153/2003 (November 22, 2005); UN Committee on the Elimination of Discrimination Against Women, Views Adopted by the Committee at its Fiftieth Session, 3 to 21 October 2011 (L.C. v. Peru), UN Doc. CEDAW/C/50/D/22/2009 (Nov. 25, 2011). 37.  Lynn P. Freedman, “Achieving the MDGs: Health Systems as Core Social Institutions,” Development 48 (2005): 21. 38.  International Labour Organization, Article 25 of the Indigenous and Tribal Peoples Convention, 1989, no. 169 (June 1989). 39.  María Emma Mannarelli, Limpias y Modernas: género, higiene y cultura en la Lima del novecientos (Lima, Peru: Centro de la Mujer Peruana “Flora Tristán”, 1999).

Notes to Chapter Four 259

40.  See Yamin, “Deadly Delays,” 74–75. This continued even after the ministry issued a decree on intercultural competence regarding delivery care. 41.  Lynn Morgan and Elizabeth F. S. Roberts, “Reproductive Governance in Latin America,” Anthropology & Medicine 19, no 2 (2012): 241–54. 42.  Ministerio de Salud del Perú, Un sector salud con equidad, eficiencia y calidad: Lineamientos de políticas en salud 1995–2000, trans. Alicia Ely Yamin, Lima, 1998. 43.  La Oficina del Primer Ministro, “Lineamientos básicos de la política social,” trans. Alicia Ely Yamin, Lima, 1993. 44. Tamayo, Nada personal, 50–67. 45.  Kimberly Theidon, “First Do No Harm: Enforced Sterilizations and Gender Justice In Peru,” opendemocracy.com, April 29, 2015, https://www.opendemocracy.net/ en/opensecurity/first-do-no-harm-enforced-sterilizations-and-gender-justice-in-peru/. 46.  Yamin, “Deadly Delays,” 72–74. 47.  Yaneth Araujo Chan, interview, May 11, 2007. 48.  Yamin, “Deadly Delays,” 72–74. 49.  World Health Organization (WHO) The World Health Report 2000: Health Systems: Improving Performance (Geneva: WHO, 2000). 50.  David Hulme, “Reproductive Health and the Millennium Development Goals: Politics, Ethics, Evidence and an ‘Unholy Alliance,’” working paper, Brooks World Poverty Institute, Manchester, UK, 2009, 26. 51.  Sally Engle Merry and Peggy Levitt, “The Vernacularization of Women’s Human Rights,” In Human Rights Futures, ed. J. Snyder, L. Hopgood, and L. Vinjamuri (Cambridge, UK: Cambridge University Press, 2017), 213–36. 52.  UN General Assembly, Resolution 55/2, United Nations Millennium Declaration, UN Doc. A/RES/55/2 (2000). 53.  Sakiko Fukuda-Parr and Joshua Greenstein, “Monitoring MDGs: A Human Rights Critique and Alternative,” in The Millennium Development Goals and Human Rights: Past, Present, and Future, ed. Malcolm Langford, Andy Sumner, and Alicia Ely Yamin (New York: Cambridge University Press, 2013), 450. 54.  Barbara Crossette, “Reproductive Health and the Millennium Development Goals: The Missing Link,” Studies in Family Planning 36 (2005): 71–79. 55.  Defensoría del Pueblo, Informe defensorial no. 69: La aplicación de la anticoncepción quirúrgica y los derechos reproductivos III (Lima: Defensoría del Pueblo, 2002). 56. Yamin, Castillos de arena en el camino hacia la modernidad,153. 57.  Rachel Rebouché, “A Functionalist Approach to Comparative Abortion Law,” in Abortion Law in Transnational Perspective: Cases and Controversies, ed. Bernard M. Dickens, Joanna N. Erdman, and Rebecca J. Cook (Philadelphia: University of Pennsylvania Press, 2014), 101. 58.  UN General Assembly, Report of the Inter-Agency and Expert Group on Sustainable Development Goal Indicators, E/CN.3/2016/2/Rev.1, Annex IV (March 2016). 59.  AnnJanette Rosga and Margaret L Satterthwaite, “The Trust in Indicators: Measuring Human Rights,” Berkeley Journal of International Law 27, no. 2 (2009): 253. 60.  Alice M. Miller, “Sexual Orientation as a Human Rights Issue,” in Learning to Dance: Case Studies on Advancing Women’s Reproductive Health and Well-Being from

260 Notes to Chapter Four

the Perspectives of Public Health and Human Rights, ed. Alicia Ely Yamin, (Cambridge, MA: François-Xavier Bagnoud Center for Health and Human Rights Series of Harvard University Press, 2005), 159. 61.  Cesar Rodríguez Garavito and Diana Rodríguez Franco, Cortes y cambio social: Cómo la Corte Constitucional transformó el desplazamiento forzado en Colombia (Bogotá: DeJusticia, 2010); Cesar Rodríguez Garavito, “Beyond the Courtroom: The Impact of Judicial Activism on Socioeconomic Rights in Latin America,” Texas Law Review 89, no. 7 (2011): 1669–98. 62.  CEJIL, “Caso Mamérita Mestanza Chávez,” https://cejil.org/caso/caso-mamerita​ -mestanza​-chavez/. 63.  Tiahrt Amendment, Public Law 112-55, 125 Stat. 609-610 September 17, 1998. 64.  I. V. v. Bolivia, Inter-Am. Ct. H. R., (ser. C) No. 336 (Nov. 30, 2016). 65.  I. V. v. Bolivia. 66.  I. V. v. Bolivia, Report No. 72/14, Merits, Inter-American Commission on Human Rights Case 12.655 (2014), ¶122. 67.  See generally Rodríguez-Garavito and Rodríguez Franco, Cortes y cambio social (Bogotá: Dejusticia, 2010). 68.  Sally E. Merry, Human Rights and Gender Violence: Translating International Law into Local Justice (Chicago: University of Chicago Press, 2006), 180. 69.  Rebecca J. Cook, “Gender, Health and Human Rights,” Health and Human Rights 1 no. 4 (1995): 362. 70.  Health Services User’s Rights, Law No. 29414 (2009) (Peru), trans. Alicia Ely Yamin. 71.  Giulia Tamayo, “Presentación,” in Alicia Ely Yamin, Castillos de arena en el camino hacia la modernidad: una perspectiva desde los derechos humanos sobre el proceso de reforma del sector salud en el Perú, 1990–2000 y sus implicancias en la muerte materna, (Lima: Centro de la Mujer Peruana Flora Tristán, 2003), 18. 72.  Organización de las Naciones Unidas, Hacia el cumplimiento de los objetivos de desarrollo del milenio en el Perú: Un compromise para acabar con la probreza, la desigualdad y la exclusion (Lima: Organización de las Naciones Unidas, 2004). 73.  Judith Butler and Nelly Kambouri, “Judith Butler—Ungrievable Lives,” mronline. org, May 21, 2009, https://mronline.org/2009/05/21/judith-butler-ungrievable-lives/. 74.  Lynn P. Freedman, “Achieving the MDGs,” 16. 75.  Thomas Graham, “Misinformation and distrust: behind Bolivia’s low COVID vaccination rates,” theguardian.com, February 6, 2022, https://www.the​guardian.com/ global-development/2022/feb/06/misinformation-and-distrust​-behind-bolivias-low​ -COVID-vaccination-rates?emci=efed5236-f488-ec11-a507-​ 281878b83d8a&emdi=f104aec6​ -f488-ec11-a507-281878b83d8a&ceid​=4626590. 76.  Ariel Frisancho and J. Goulden, “Rights-Based Approaches To Improve People’s health in Peru,” Lancet 372, no. 9655 (2008): 2007–08. 77.  Alicia Ely Yamin, “Dignity Matters: Applying Human Rights Frameworks to Health,” TEDxUConn, https://www.youtube.com/watch?v=ezeA2UfCHTw. 78.  Nancy Fraser, “Rethinking the Public Sphere; A Contribution to the Critique of Actually Existing Democracy,” in Habermas and the Public Sphere, ed. Craig Calhoun (Cambridge, MA: MIT Press, 1992).

Notes to Chapter Four and Five

261

79.  Néstor David Pastor, “Remembering María Elena Moyano: 30 Years Later,” nacla. org, February 15, 2022, https://nacla.org/remembering-maria-elena-moyano-30-years​ -later?emci=f0d35b12-418f-ec11-a507-281878b83d8a&emdi=bff446c2-418f-ec11-a507​ -281878b83d8a&ceid=​4626590. Chapter Five 1.  World Health Organization (WHO) Commission on Macroeconomics and Health, Macroeconomics and Health: Investing in Health for Economic Development (Geneva: WHO, 2001), 1. 2.  Kofi A. Annan, We the Peoples: The Role of the United Nations in the 21st Century, Sales. No. E. 00.I.16 (New York: UN Department of Public Information), 11. 3.  This story is drawn from multicountry research: Alicia Ely Yamin, Junior Bazile, Lucia Knight, Mitike Molla, Emily Maistrellis, and Jennifer Leaning, “Tracing Shadows: How Gendered Power Relations Shape the Impacts of Maternal Death on Living Children in Sub-Saharan Africa,” Social Science & Medicine, 135 (2015): 143–50. See also Junior Bazile et al., “Intergenerational Impacts of Maternal Mortality: Qualitative Findings from Rural Malawi,” Reproductive Health 12, Suppl. 1 (2015): S1. 4.  World Bank, “Life expectancy at birth, total (years)—South Africa, Malawi, United Kingdom,” data.worldbank.org, n.d., https://data.worldbank.org/indicator/SP.DYN.LE00​ .IN?locations=ZA-MW-GB. 5.  Debt Justice, “Malawi: Debt Statistics,”jubileedebt.org, 2022, https://jubileedebt​ .org.uk/countries/malawi. 6.  Øyvind Eggen, “Chiefs and Everyday Governance: Parallel State Organisations in Malawi.” Journal of Southern African Studies 37, no. 2 (2011): 313–31. 7.  João Guilherme Biehl, “Pharmaceuticalization: AIDS Treatment and Global Health Politics,” Anthropological Quarterly 80, no. 4 (2007): 1083–126. 8.  Thomas L. Friedman, The World Is Flat (New York: Farrar, Straus and Giroux, 2005), 176. 9.  Jim Yong Kim, Joyce V. Millen, and Alex Irwin, “Introduction: What Is Growing? Who Is Dying?” in Dying for Growth: Global Inequality and the Health of the Poor, ed. Jim Yong Kim et al. (Monroe, ME: Common Courage Press, 2000), 7. 10.  Lucas Chancel, Thomas Piketty, Emmanuel Saez, and Gabriel Zucman, World Inequality Report 2022 (Cambridge, MA: Belknap Press, 2022). 11. Oxfam, Making Debt Relief Work: A Test of Political Will (Oxford UK,: Oxfam International, 1998), 1. 12.  William Easterly, “How Did Heavily Indebted Poor Countries Become Heavily Indebted? Reviewing Two Decades of Debt Relief,” World Development 30, no.10 (2002): 1677. 13.  Debt Justice, “Malawi: Debt Statistics,” jubileedebt.org, 2022, https://debtjustice​ .org.uk/countries/malawi. 14.  Clare Nullis Kapp, “Macroeconomics and Health Commission Findings Become Reality,” Bulletin of the World Health Organization 82, no. 12 (2004): 957. 15.  Joseph E. Stiglitz, Globalization and Its Discontents (New York: W. W. Norton, 2002).

262 Notes to Chapter Five

16.  Alex Tizon, “Monday, Nov. 29,” seattletimes.nwsource.com, Dec. 5, 1999, http:// community.seattletimes.nwsource.com/archive/?date=19991205&slug=2999667. 17.  David Kennedy, “Law and the Political Economy of the world,” Leiden Journal of International Law 26, no. 1: 7–48. 18.  Mark Heywood, “Preventing Mother-to-Child HIV Transmission in South Africa: Background, Strategies and Outcomes of the Treatment Action Campaign Case against the Minister of Health,” South African Journal on Human Rights 19, no. 2 (2003): 280. 19.  Lisa Forman, “Trade Rules, Intellectual Property, and the Right to Health,” Ethics & International Affairs 21, no. 3 (2007): 337–57. 20.  UNESCO Institute for Statistics, “How Much Does Your Country Invest in R&D?” uis.unesco.org, n.d., http://uis.unesco.org/apps/visualisations/research-and-development​ -spending/. 21.  Ellen F. M. ’t Hoen, The Global Politics of Pharmaceutical Monopoly Power: Drug Patents, Access, Innovation and the Application of the WTO Doha Declaration on TRIPS and Public Health (Moka, Mauritius: AMB, 2009), 20; Linsey McGoey, No Such Thing as a Free Gift: The Gates Foundation and the Price of Philanthropy (Brooklyn, NY: Verso, 2016), 188–89. 22.  William Forbath et al., “Cultural Transformation, Deep Institutional Reform, and ESR Practice: South Africa’s Treatment Action Campaign,” in Stones of Hope: How African Activists Reclaim Human Rights to Challenge Global Poverty, ed. Lucie White and Jeremy Perelman (Stanford, CA: Stanford University Press, 2010), 56. 23.  Presidency of the Republic of South Africa, “Annual Report 2008: Accelerated and Shared Growth Initiative for South Africa,” 2009, 4. 24.  Dani Rodrik, The Globalization Paradox: Why Global Markets, States, and Democracy Can’t Coexist (Oxford, UK: Oxford University Press, 2011), 180. 25.  Forbath, “Cultural Transformation,” 56. 26.  Mark Heywood, Get up! Stand Up (Cape Town: Tafelberg, 2017), 112. 27.  Pali Lehohla, personal communication, February 10, 2018. 28.  Minister of Health v. Treatment Action Campaign (TAC) 2002 (5) SA 721 (CC) (S.Afr.). 29.  Ole Frithjof Norheim and Siri Gloppen, “Litigating for Medicines: How Can We Assess Impact on Health Outcomes?” in Litigating Health Rights: Can Courts Bring More Justice to Health? ed. Alicia Ely Yamin and Siri Gloppen, Harvard Human Rights Series (Cambridge, MA: Harvard University Press, 2011), 320. 30.  N and Others v. Government of South Africa and Others (No. 1) 2006 (6) SA 543 (D); N and Others v. Government of South Africa and Others (No. 2) 2006 (6) SA 568 (D); N and Others v. Government of South Africa and Others (No. 3) 2006 (6) 575 (D) (S. Afr.). 31.  Common Cause v. Union of India, W.P. (C) No. 61/2003 (2003) (India). 32.  Patricia Asero Ochieng & Others. v. Attorney General, Petition No. 409 of 2009 (2012) High Court of Kenya (H.C.K.). 33.  Pharmaceutical Manufacturers Association of South Africa and Another: In re Ex Parte President of the Republic of South Africa and Others 2000 (2) SA 674 (CC) (S. Afr.). 34.  Mark Heywood, Get up, 116.

Notes to Chapter Five 263

35.  “Glaxo Responds to Aids Drugs Call,” news.bbc.co.uk, December 10, 2003, http:// news.bbc.co.uk/2/hi/business/3306079.stm; Mark Heywood, “South Africa’s Treatment Action Campaign: Combining Law and Social Mobilization to Realize the Right to Health,” Journal of Human Rights Practice 1, no. 1 (2009), 14–36. 36.  Mark Heywood, “Preventing Mother-to-Child,” 15. 37.  Forbath, “Cultural Transformation,” 52. 38.  World Trade Organization (WTO) Declaration on the TRIPS Agreement and Public Health (Doha Declaration), WT/MIN(01)/DEC/1, 41 ILM 746 (November 20, 2001). 39.  James Love, “TRIPS Waiver, Circa (Feb 7) 2022,” jamie-love.medium.com, February 7, 2022, https://jamie-love.medium.com/trips-waiver-circa-2020-450df671a24c. 40.  James Love; “TRIPS: Agreement on Trade-Related Aspects of Intellectual Property Rights,” Agreement Establishing the World Trade Organization, Annex 1C, 1869 U.N.T.S. 299, 33 I.L.M. 1197 (April 15, 1994). 41.  “The United States’ War on Aids: Hearing Before the Committee on International Relations,” US House of Representatives, 107th Congress, 1st session, serial no. 107-17, commdocs.huse.gov, June 7, 2001, http://commdocs.house.gov/committees/intlrel/ hfa72978.000/hfa72978_0.HTM. 42.  Nicoli Nattrass, The AIDS Conspiracy: Science Fights Back (New York: Columbia University Press, 2012). 43.  Selena Schocken, “About the Global Fund,” 2022, https://www​.theglobalfund.org/ en/about-the-global-fund/. 44.  Office of the US Global AIDS Coordinator and Health Diplomacy, “United States President’s Emergency Plan for AIDS Relief (PEPFAR),” pepfar.gov, 2016, https://www​ .pepfar.gov/documents/organization/252516.pdf. 45.  UN Entity for Gender Equality and the Empowerment of Women, Beijing Declaration and Platform for Action, A/CONF.177/20/Rev.1 ¶107 (1995). 46.  Marge Berer, “Repoliticising Sexual and Reproductive Health and Rights,” Reproductive Health Matters 19, no. 38 (2011): 8. 47.  Gita Sen, “Gender Equality and Women’s Empowerment: Feminist Mobilization for the SDGs,” Global Policy 10 (2019): 30. 48.  Sakiko Fukuda-Parr, Millennium Development Goals: Ideas, Interests and Influence (New York: Routledge, 2017). 49.  For example, see Rafael Lozano et al., “Progress towards Millennium Development Goals 4 and 5 on Maternal and Child Mortality: An Updated Systematic Analysis,” Lancet 378, no. 9797 (2011): 1139–65. 50.  Anne-Emanuelle Birn, “Philanthrocapitalism, Past and Present: The Rockefeller Foundation, the Gates Foundation, and the Setting(s) of the International/Global Health Agenda,” Hypothesis 12, no. 1 (2014), 15. 51.  Linsey McGoey, No Such Thing as a Free Gift: The Gates Foundation and the Price of Philanthropy (Brooklyn, NY: Verso Books, 2015), 9. 52.  McGoey, 197. 53. S.ẹ`yẹ Abímbọ´lá, “On the Meaning of Global Health and the Role of Global Health Journals,” International Health 10, no. 2 (2018): 63–65.

264 Notes to Chapter Five

54.  Barack Obama and Richard Lugar, “Grounding a Pandemic,” nytimes.com, June 6, 2005, https://www.nytimes.com/2005/06/06/opinion/grounding-a-pandemic.html. 55.  World Health Organization (WHO), International Health Regulations (2005), 2nd ed. (Geneva: WHO, 2005), art. 2. 56.  World Health Organization (WHO), International Health, art. 12: “[pursuant to art. 1:] ‘Public health emergency of international concern’ means an extraordinary event which is determined, as provided in these Regulations: (i) to constitute a public health risk to other States through the international spread of disease and (ii) to potentially require a coordinated international response.” 57.  Aeyal Gross, “The Past, Present, and Future of Global Health Law beyond Crisis,” American Journal of International Law 115, no. 4 (2021): 765. 58.  World Health Organization (WHO), “Global Tuberculosis Report,” who.int/ publications, October 14, 2021, https://www.who.int/publications/i/item/9789240037021. 59.  World Health Organization (WHO), “More Malaria Cases and Deaths In 2020 Linked to COVID-19 Disruptions,” who.int/news, December 6, 2021, https://www.who​ .int/news/item/06-12-2021-more-malaria-cases-and-deaths-in-2020-linked-to-COVID​ -19-disruptions. 60.  For example, see Lawrence Gostin, Global Health Security (Cambridge, MA: Harvard University Press, 2021) 61.  For example, see Gonzalo Basile and Antonio Hernandez Reyes, Refundacion sistemas de salud en Latinoamerica y Caribe: Descolonizar las teorías y las políticas (Buenos Aires: CLACSO, 2021). 62.  UN Sustainable Development Group (UNSDG), “The Human Rights Based Approach to Development Cooperation: Towards a Common Understanding Among UN Agencies,” undg.org, 2003, https://undg.org/wp-content/uploads/2016/09/6959​-The​ _Human_Rights_Based_Approach_to_Development_Cooperation_Towards_a_Com​ mon_Understanding_among​_UN.pdf. 63.  Task Force on Child Health and Maternal Health, Who’s Got the Power? Transforming Health Systems for Women and Children (London: UN Millennium Project and Earthscan, 2005), 29. 64.  For example, see Charles Chikodili Chima and Nuria Homedes, “Impact of Global Health Governance on Country Health Systems: The Case of HIV Initiatives in Nigeria,” Journal of Global Health 5, no. 1 (2015): 1–13. 65.  UN International Children’s Emergency Fund (UNICEF), World Health Organization (WHO), and United Nations Population Fund (UNFPA), Guidelines on Monitoring the Availability and Use of Obstetric Services (New York: UNICEF, 1997). 66.  Sereen Thaddeus and Deborah Maine, “Too Far to Walk: Maternal Mortality in Context,” Social Science and Medicine 38, no. 8 (1994): 1091–110. 67.  UN General Assembly, Report of the Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health, Paul Hunt, UN Doc. E/CN.4/2006/48 ¶4 (2006); UN General Assembly, Report of the Special Rapporteur on the Right of Everyone to Enjoy the Highest Attainable Standard of Physical and Mental Health, UN Doc. A/61/338 ¶34 (September 13, 2006).

Notes to Chapter Five 265

68.  UN General Assembly, Resolution 61/106, Convention on the Rights of Persons with Disabilities (CRPD), A/RES/61/106 (December 13, 2006). 69.  UN General Assembly, Resolution 61/106, A/RES/61/106, preamble. 70.  Michael Stein and Michael Waterstone, Finding the Gaps (Washington, DC: National Council on Disability, 2008). 71.  World Intellectual Property Organization (WIPO), Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled, MVT/A/5/INT/1 (June 27, 2013). 72.  Sudhir Anand, Fabienne Peter, and Amartya Sen, eds., Public Health, Ethics, and Equity (Oxford, UK: Oxford University Press, 2006). 73.  Conference of International Legal Scholars, Yogyakarta Principles: Principles on the Application of Human Rights Law in Relation to Sexual Orientation and Gender Identity (Yogyakarta, Indonesia: Conference of International Legal Scholars, 2007). 74.  Abby Ohlheiser, “Uganda’s New Anti-Homosexuality Law Was Inspired by American Activists,” theatlantic.com, December 20, 2013, https://www.theatlantic.com/interna​ tional/archive/2013/12/uganda-passes-law-punishes-homosexuality-life-imprisonment/ 356365/. 75.  Cynthia Rothschild, Written Out: How Sexuality Is Used to Attack Women’s Organizing (New York: International Gay and Lesbian Human Rights Commission and the Center for Women’s Global Leadership, 2005), 118–19. 76.  Office of the High Commissioner for Human Rights (OHCHR), United Nations Special Procedures: Facts and Figures 2010, ohchr.org, April 2011, http://www.ohchr.org/ Documents/HRBodies/SP/Facts_Figures2010.pdf. 77.  OHCHR, Facts and Figures 2010, 5–8, 26. 78.  UN General Assembly, Fragmentation of International Law: Difficulties Arising from the Diversification and Expansion of International Law: Report of the International Law Commission, A/CN.4/L.702, 400–23 (July 18, 2006). 79.  UN Committee on the Elimination of Racial Discrimination, General Recommendation 20, the Guarantee of Human Rights Free from Racial Discrimination, UN Doc. A/51/18, annex VIII (March 14, 1996). 80.  UN Committee on the Rights of the Child, General Comment No. 15 (2013) on the Right of the Child to the Enjoyment of the Highest Attainable Standard of Health, UN Doc. CRC/C/GC/15, art. 12 (Apr. 17, 2013); UN Committee on the Rights of the Child, General Comment No. 3 (2003): HIV/AIDS and the Rights of the Child, UN Doc. CRC/GC/2003/3 (March 17, 2003); UN Committee on the Rights of the Child, General Comment No. 4 (2003): Adolescent Health and Development in the Context of the Convention on the Rights of the Child, UN Doc. CRC/GC/2003/4 (July 1, 2003). 81.  UN Committee on the Elimination of All Forms of Discrimination Against Women (CEDAW), General Recommendation No. 24: Article 12 of the Convention (Women and Health), UN Doc. A/54/38/Rev.1 ¶3 (1999). 82.  UN Doc. E/C.12/2000/4, ¶12. 83.  UN Doc. A/54/38/Rev.1, ¶22. 84.  UN Doc. E/C.12/2000/4, ¶11.

266 Notes to Chapter Five and Six

85.  John Tobin, The Right to Health in International Law (Oxford, UK: Oxford University Press, 2012), 56. 86.  UN Doc. E/C.12/2000/4, ¶44(a–e). 87.  John Tobin, Right to Health, 240. 88.  UN Doc. E/C.12/2000/4, ¶31. 89.  Norman Daniels, Just Health: Meeting Health Needs Fairly (Cambridge, UK: Cambridge University Press, 2008), 15. 90.  UN Doc. E/C.12/GC/22. 91.  This section draws from Alicia Ely Yamin, “Can a Pandemic Law-Making Exercise Promote Global Health Justice?” Verfassungsblog.de, November 4, 2021, https://verfas​ sungs​blog.de/editorial-can-a-pandemic-law-making-exercise-promote-global-health -justice/. 92.  Ole Petter Ottersen, et al. “The Political Origins of Health Inequity: Prospects for Change,” Lancet 383, no. 9917 (2014): 630–67. 93.  For examples of this approach, see for example Eric Friedman, Lawrence O. Gostin, and Kent Buse, “Advancing the Right to Health through Global Organizations: The Potential Role of a Framework Convention on Global Health,” Health and Human Rights 15, no. 1 (2013): 71–86; see also Benjamin Meier, Judith Bueno de Mesquita, and Caitlin Williams, Yearbook of International Disasters and Health (Leiden, Netherlands: Brill, 2022). 94.  Lynsey Chutel, “How a Consulting Company Went from Power Player to Pariah in South Africa,” New York Times, April 24, 2022. 95.  Paul Farmer, Pathologies of Power: Health, Human Rights, and the New War on the Poor (Oakland, CA: University of California Press, 2004). Chapter Six 1.  Rebecca J. Cook, “Human Rights and Maternal Health: Exploring the Effectiveness of the Alyne Decision,” Journal of Law, Medicine and Ethics 41 (2013): 109. 2.  WHO Commission on the Social Determinants of Health, Closing the Gap in a Generation: Health Equity through Action on the Social Determinants of Health: Executive Summary (Geneva: World Health Organization, 2008), 3. 3.  FIGO Safe Motherhood and Newborn Health (SMNH) Committee, “FIGO Guidelines: Management of the Second Stage of Labor,” International Journal of Gynecology and Obstetrics 119, no. 3 (2012): 111–16; SMNH Committee, “Prevention and Treatment of Postpartum Hemorrhage in Low-Resource Settings,” International Journal of Gynecology and Obstetrics 117, no. 2 (2012): 108–18. 4.  Rosa Domingues et al., “Process of Decision-Making Regarding the Mode of Birth in Brazil: From the Initial Preference of Women to the Final Mode of Birth,” Reports in Public Health 30, supplement (2014): S101–16. 5.  For example, see Law no. 26.485, article 6(e), 11 de marzo, 2009 [31.632] B.O. 1 (Arg.). 6.  UN Committee on the Elimination of All Forms of Discrimination against Women (CEDAW), Views of the Committee on the Elimination of Discrimination against Women Concerning Communication No. 17/2008 (Alyne da Silva Pimentel v. Brazil), UN Doc CEDAW/C/49/D/17/2008 (2011).

Notes to Chapter Six 267

7.  UN Committee on Economic, Social and Cultural Rights, Working Methods Concerning the Committee’s Follow-Up to Views under the Optional Protocol to the International Covenant on Economic, Social and Cultural Rights, UN Doc. E/C.12/62/4 (2017). 8.  Victor Abramovich, “From Massive Violations to Structural Patterns: New Approaches and Classic Tensions in the Inter-American Human Rights System,” Sur: International Journal on Human Rights 6, no. 11 (2009): 6–39. 9.  UN Doc CEDAW/C/49/D/17/2008. 10.  Cook, “Human Rights and Maternal Health,” 106. 11.  Lawrence Mishel and Jessica Schieder, “As Union Membership Has Fallen, the Top 10 Percent Have Been Getting a Larger Share of the Income,” economic snapshot, epi.org, May 24, 2016, https://www.epi.org/publication/as-union-membership​-has-fallenthe-top-10-percent-have-been-getting-a-larger-share-of​-income/ 12.  Alyssa Davis and Lawrence Mishel, “CEO Pay Continues to Rise as Typical Workers are Paid Less,” issue brief #380, epi.org, June 12, 2014, https://www.epi​.org/publication/ ceo-pay-continues-to-rise/. 13.  Joseph Stiglitz, Freefall: America, Free Markets, and the Sinking of the World Economy (New York: W. W. Norton, 2010). 14.  Center for Economic and Social Rights (CESR), Assessing Austerity: Monitoring The Human Rights Impacts of Fiscal Consolidation (New York: CESR, 2018). 15.  “Brazil—Poverty Headcount Ratio at National Poverty Line,” knoema.com, n.d., https://knoema.com/atlas/Brazil/Poverty-rate-at-national-poverty-line. 16.  Moore, “Lula da Silva.” 17.  “Leia íntegra da carta de Lula para calmar o mercado financeiro,” folha.uol.com, June 24, 2002, https://www1.folha.uol.com.br/folha/brasil/ult96u33908.shtml. 18.  WHO Commission on Social Determinants of Health, Closing the Gap in a Generation: Health Equity through Action on the Social Determinants of Health (Geneva: World Health Organization, 2008), 26. 19. CESR, Assessing Austerity. 20.  Norman Daniels, Bruce Kennedy, and Ichirō Kawachi, Is Inequality Bad for Our Health? (Boston: Beacon Press, 2000). 21.  Richard Wilkinson and Kate Pickett, The Spirit Level: Why More Equal Societies Almost Always Do Better (London: Allen Lane, 2009). 22.  Michael Doyle and Joseph Stiglitz, “Eliminating Extreme Inequality: A Sustainable Development Goal, 2015–2030,” Ethics & International Affairs 28 (2014): 5–13. 23.  UN Development Programme (UNDP), “Sustainable Development Goal 10: Reduce Inequality within and among Countries,” sustainabledevelopment.un.org, https:// sustainabledevelopment.un.org/sdg10. 24.  Sakiko Fukuda-Parr, “Keeping out Extreme Inequality from the SDG Agenda— The Politics of Indicators,” special issue, Global Policy 10 (2019): 61–69. 25.  See David Kennedy, A world of Struggle: How Power, Law, and Expertise Shape Global Political Economy (Princeton, NJ: Princeton University Press, 2018). 26.  Organisation for Economic Cooperation and Development (OECD), Blended Finance: Mobilising Resources for Sustainable Development and Climate Action in Developing Countries (Paris: OECD, 2017), 3.

268 Notes to Chapter Six

27.  Oxfam International, “Brazil: Extreme Inequality in Numbers,” oxfam.org, 2022, https://www.oxfam.org/en/even-it-brazil/brazil-extreme-inequality-numbers. 28.  Benjamin Barber, Strong Democracy: Participatory Politics for a New Age, 20th Anniversary Edition (Oakland, CA: University of California Press, 2003). 29.  Center for Reproductive Rights (CRR), “Unheard Voices: Women’s Experiences with Zika: Brazil,” reproductiverights.org, 2018, https://www.reproductiverights.org/sites/ crr.civicactions.net/files/documents/CRR-Zika-Brazil.pdf. 30.  Office of the United Nations High Commissioner for Human Rights (OHCHR), “Scenario and Talking Points for High Commissioner on Human Rights Event to Launch the Technical Guidance on the Application of a Human Rights Based Approach to the Implementation of Policies,” ohchr.org, September 14, 2012, https://www.ohchr.org/en/ statements/2012/09/scenario-and-talking-points-high-commissioner-human-rights​-event​ -launch (Geneva: OHCHR, 2012); Navanethem Pillay, Human Rights in the Post-2015 Agenda, open letter ohchr.org, June 6, 2013, http://www.ohchr.org/Documents/Issues/ MDGs/HCOpenLetterPost2015.pdf. 31.  Center for Reproductive Rights (CRR), “Maternal Mortality Initiative,” reproductiverights.org, October 29, 2019, http://www.reproductiverights.org/initiatives. 32.  UN Human Rights Council, Technical Guidance on the Application of a HumanRights Based Approach to the Implementation of Policies and Programmes to Reduce Preventable Maternal Morbidity and Mortality, UN Doc. A/HRC/21/22 ¶1 (2012). 33.  For example, Partnership for Maternal, Newborn and Child Health (PMNCH), A Global Review of the Key Interventions Related to Reproductive, Maternal, Newborn and Child Health (RMNCH) (Geneva: PMNCH, 2011). 34.  Sônia Lansky et al., “Birth in Brazil Survey: Neonatal Mortality, Pregnancy and Childbirth Quality of Care,” Reports in Public Health 30, supplement (2014): S1–15. 35.  UN Doc. A/HRC/21/22, ¶12. 36.  UN Doc. A/HRC/21/22, ¶13. 37.  UN Doc. A/HRC/21/22, ¶16. 38.  Michele Gragnolati, Magnus Lindelow, and Bernard Couttolenc, Twenty Years of Health System Reform in Brazil: An Assessment of the Sistema Único de Saúde (Washington DC: World Bank Publications, 2013). 39.  Maria Inês Souza Bravo et al., A mercantilizaçao da saúde em debate: As organizações sociais no Río de Janeiro (Río de Janeiro: Cadernos de Saúde Pública, FAPERJ, 2015). 40.  UN Doc. CEDAW/C/49/D/17/2008, ¶7.5, 8. 41.  Lynn P. Freedman, “Human Rights, Constructive Accountability and Maternal Mortality in the Dominican Republic: A Commentary,” International Journal of Gynecology and Obstetrics 82 (2003): 111. 42.  Commission on Information and Accountability for Women’s and Children’s Health, Keeping Promises, Measuring Results: Final Report of the Commission (Geneva: World Health Organization, 2011), 8, 19. 43.  For a discussion of the need for remedies, see UN Secretary General’s International Accountability Panel on Women’s, Children’s and Adolescents’ Health (IAP), “2016 Inaugural Report,” iapewec.org, 2016, https://iapewec.org/reports/annual-reports/2016report/. 44.  UN Doc. A/HRC/21/22, ¶74–98.

Notes to Chapter Six 269

45.  UN Doc. A/HRC/21/22, ¶85. 46.  UN Doc. A/HRC/21/22, ¶87; International Commission of Jurists (ICJ), Maastricht Principles on Extraterritorial Obligations of States in the Area of Economic, Social and Cultural Rights (Geneva: ICJ, 2011). 47.  Paul Hunt, “Configuring the UN Human Rights System in the Era of Implementation: Mainland and Archipelago,” Human Rights Quarterly 39, no. 489 (2017): 490–93. 48.  Nancy Fraser, “From Redistribution to Recognition? Dilemmas of Justice in a ‘Post-Socialist’ Age,” New Left Review 0, no. 212 (1995): 68–93; Nancy Fraser and Axel Honneth, Redistribution or Recognition? A Political-Philosophical Exchange (New York: Verso, 2003), 117. 49.  Brigit Toebes, Rhonda Ferguson, Milan Markovic, and Obiajulu Nnamuchi, eds., The Rights to Health: A Multi-Country Study of Law, Policy and Practice (The Hague: Springer, 2014). 50.  Alicia Ely Yamin and Rebecca Cantor, “Between Insurrectional Discourse and Operational Guidance: Challenges and Dilemmas in Implementing Human Rights−Based Approaches to Health,” Journal of Human Rights Practice 6, no. 3 (2014): 479. 51.  Martti Antero Koskenniemi, “Conclusion: After Globalisation—Engaging the Backlash,” in Globalisation and Governance: International Problems, European Solutions, ed. R. Schütze (Cambridge, UK: Cambridge University Press, 2018), 459. 52.  Stephen Hopgood, The Endtimes of Human Rights (Ithaca, NY: Cornell University Press, 2015). 53.  Laxmi Mandal v. Deen Dayal Harinagar Hospital and Others, W.P. (C) Nos. 8853 of 2008 High Court of Delhi (2010) (India); Centre for Health, Human Rights and Development (CEHURD) and 3 Others v. Attorney General, Constitutional Petition No. 16 of 2011 [2012] UGCC 4 (Uganda); Centre for Health, Human Rights and Development (CEHURD) and 3 Others v. Attorney General, UGSC Constitutional Appeal No. 1 of 2013 [2015] (Uganda); Center for Health, Human Rights and Development (CEHURD) and 3 Others v. Attorney General, Constitutional Petition 16 of 2011 [2020] UGCC 12 (Uganda). 54.  For discussions of some prominent cases, see Colleen Flood and Aeyal Gross, eds., The Right to Health at the Public/Private Divide: Global Comparative Study (New York: Cambridge University Press, 2016); Alicia Ely Yamin and Siri Gloppen, eds., Litigating Health Rights: Can Courts Bring More Justice to Health? Harvard Human Rights Series (Cambridge, MA: Harvard University Press, 2011). 55.  Octávio Luiz Motta Ferraz, Health as a Human Right: the Politics and Judicialisation of Health in Brazil (Cambridge, UK: Cambridge University Press, 2021). 56. Ferraz, Health as a Human Right. 57.  Wang and Ferraz, “Reaching Out,” 158–79; Ferraz, Health as a Human Right. 58.  João Biehl, Mariana P. Socal, and Joseph J. Amon, “The Judicialization of Health and the Quest for State Accountability: Evidence from 1,262 Lawsuits for Access to Medicines in Southern Brazil,” Health and Human Rights Journal 18 (2016): 209–20. 59.  Danielle Borges, “Individual Health Care Litigation in Brazil through a Different Lens: Strengthening Health Technology Assessment and New Models of Health Care Governance,” Health and Human Rights 20 (2018): 147–62.

270 Notes to Chapter Six

60.  Mariana Mota Prado, “The Debatable Role of Courts in Brazil’s Health-Care System: Does Litigation Harm or Help?” Journal of Law, Medicine, and Ethics 41 (2013): 124–37. 61.  Everaldo Lamprea Alegre, Local Maladies, Global Remedies: Reclaiming the Right to Health in Latin America (Cheltenham, UK: Edward Elgar, 2022): 81–138. 62.  Laura Pautassi and Victor Abramovich, “El derecho a la salud en los tribunales: Algunos efectos del activismo judicial sobre el sistema de salud en Argentina,” Salud colectiva 4, no. 3 (2008): 261–82. 63.  See e.g.: amendment to Brazilian Patent Statute (Law #9,279/96). International Institute of Anticorruption Studies v. The National Unit for Disaster Risk Management, Administrative Tribunal of Cundinamarca, 2021-05-081 R1 (Recurso de insistencia), May 11, 2021. 64.  Paola Bergallo, “Courts and the Right to Health: Achieving Fairness Despite ‘Routinization’ in Individual Coverage Cases?” in Litigating Health Rights: Can Courts Bring More Justice to Health? ed. Alicia Ely Yamin and Siri Gloppen, Harvard Human Rights Series (Cambridge, MA: Harvard University Press, 2011), 43–75. 65.  Amy Kapczynski, “The Right to Medicines in an Age of Neoliberalism,” Humanity 10, no. 1 (2019): 79–107. 66.  Lon L. Fuller and Kenneth I. Winston, “The Forms and Limits of Adjudication,” Harvard Law Review 92, no. 2 (1978): 395. 67.  Mark Tushnet, Weak Courts, Strong Rights: Judicial Review and Social Welfare Rights in Comparative Constitutional Law (Princeton, NJ: Princeton University Press, 2008). 68.  Roberto Gargarella, Latin American Constitutionalism, 1810–2010: The Engine Room of the Constitution (Oxford, UK: Oxford University Press, 2013), 199–200. 69.  People’s Union for Civil Liberties v. Union of India and Others, Writ Petition (Civil) No. 196 of 2001, Supreme Court (2001) (India). 70.  Corte Suprema de Justicia de la Nación [CSJN], 07/08/2008, “Mendoza Beatriz Silvia y otros c/estado nacional y otros s/daños y perjuicios,” ¶20.V, Fallos (2008-3311622) (Arg.). 71.  María Natalia Echegoyemberry, personal communication. 72.  Martín Sigal, Julieta Rossi, and Diego Morales, “Argentina: Implementation of Collective Cases,” in Compliance with Social Rights Judgments and the Politics of Compliance: Making It Stick, ed. Malcolm Langford, César Rodríguez-Garavito, and Julieta Rossi (Cambridge, UK: Cambridge University Press, 2017), 140–76. 73.  Website for ACUMUR, http://www.acumar.gob.ar/, accessed February 23, 2019. 74.  Echegoyemberry, personal communication. 75. Lamprea, Derechos en la práctica. 76.  Charles F. Sabel and William H. Simon, “Destabilization Rights: How Public Law Litigation Succeeds,” Harvard Law Review 117, no. 4 (2004): 1019. 77.  Sentencia T-760/08, ¶3.2.2. 78. Lamprea, Derechos en la práctica, 121–22.

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271

79.  L. 1751/2015, febrero 16, 2015, Diario Oficial [D.O.] (Colom.). 80.  For example, Rodrigo Uprimny Yepes and Juanita Durán, Equidad y protección judicial del derecho a la salud en Colombi, CEPAL-Serie Políticas (Santiago: Naciones Unidas, 2014), 22–23. 81.  Oscar Parra Vera, “La protección del derecho a la salud: Algunas notas sobre retos y lecciones de la T-760 de 2008 a sus ocho años de implementacioón,” in Los desafíos del litigio en materia de derechos económicos, sociales y culturales (Buenos Aires: Ministerio Público de la Defensa Argentina, 2017), 51–70. 82.  Keith Syrett, “Evolving the Right to Health: Rethinking the Normative Response to Problems of Judicialization,” Health and Human Rights 20 (2018): 129. 83.  See Rodrigo Uprimny, “La judicialización de la política en Colombia: Casos, potencialidades y riesgos,” Sur: Revista Internacional de Derechos Humanos 4, no. 6 (2007): 52–69. 84.  John R. Ellement and Christine Mui, “Slain Cambridge Man, 19, Remembered for ‘Touching the Lives of So Many People,’” bostonglobe.com, March 30, 2021, https://www​ .bostonglobe.com/2021/03/30/metro/slain-cambridge-man-19-remembered-touching​ -lives-so-many​-people/. 85.  Joel Pinheiro Da Fonseca, “Show Me a Hero: Political Disillusionment Elevates a Strongman before Brazil’s Election,” World Policy Journal 35, no. 2 (2018): 77–82. 86.  “Brazil 20-Year Public Expenditure Cap Will Breach Human Rights, UN Expert Warns,” ohchr.org, December 9, 2016, https://www.ohchr.org/EN/NewsEvents/Pages/ DisplayNews.aspx?NewsID=21006. 87.  Travis Waldron, “Brazil Is About to Show the World How a Modern Democracy Collapses,” huffingtonpost.com, January 1, 2019, https://www.huffingtonpost.com/entry/ brazil-jair-bolsonaro-democracy-threat_us_5c2a30c5e4b08aaf7a929cbb. 88.  Jack Nicas, “Brazilian Leader Accused of Crimes against Humanity in Pandemic Response,” nytimes.com, October 19, 2021, https://www.nytimes.com/2021/10/19/world/ americas/bolsonaro- COVID-19-brazil.html. Chapter Seven 1.  Quintin Hoare and Geoffrey Nowell-Smith, eds., Selections from the Prison Notebooks of Antonio Gramsci (New York: International Publishers, 1971), 359. 2.  António Guterres, “Tackling the Inequality Pandemic: A New Social Contract for a New Era,” transcript of virtual speech, un.org, July 18, 2020, https://www.un.org/en/ coronavirus/tackling-inequality-new-social-contract-new-era. 3.  Susan Sontag, Illness as Metaphor (New York: Vintage Books, 1979), 3. 4.  Efthimios Dardiotis, Georgia Xiromerisiou, Christos Hadjichristodoulou, Aristidis M. Tsatsakis, Martin F. Wilks, and Georgios M. Hadjigeorgiou, “The interplay between environmental and genetic factors in Parkinson’s disease susceptibility: the evidence for pesticides,” Toxicology 307 (2013): 17–23. 5.  Carey Gillam, “Bayer settles U.S. Roundup, Dicamba and PCB Litigation for More Than $10 billion,” usrtk.org, June 24, 2020, https://usrtk.org/uncategorized/

272 Notes to Chapter Seven

bayer-settles-u-s-roundup-dicamba​-and-pcb-litigation-for-more-than-10-billion/; International Agency for Research on Cancer (IARC), “IARC Monograph on Glyphosate,” (2015). 6.  Jaya Nayer, “Aerial Fumigation in Colombia: The Bad and The Ugly,” hir.harvard. edu, December 9, 2020, https://hir.harvard.edu/aerial-fumigation-in-colombia-the-bad​ -and-the​-ugly/. 7.  Marti Kosekenniemi, “Conclusion: After Globalisation—Engaging the Backlash,” in Globalisation and Governance: International Problems, European Solutions, ed. R. Schütze (Cambridge, UK: Cambridge University Press, 2018), 459. 8.  Zeid Raad al-Hussein, “Opening Statement by UN High Commissioner for Human Rights for the 37th Session of the Human Rights Council,” February 26, 2018. 9.  Weronika Grzebalska, Eszter Kováts, and Andrea Pető, “Gender as Symbolic Glue: How ‘Gender’ Became an Umbrella Term for the Rejection of the (Neo)Liberal Order,” Political Critique, January 17, 2017. 10.  See for example, “A Running List of How Trump Is Changing the Environment,” nationalgeographic.com, May 2, 2019, https://news.nationalgeographic.com/2017/03/ how-trump-is-changing-science-environment/. 11.  Jean Baudrillard, The Agony of Power (Cambridge, MA: MIT Press, 2010), 63. 12. Hannah Arendt, The Origins of Totalitarianism (New York: Harcourt, 1973), 382. 13.  Thomas J Bollyky, et al., “Pandemic Preparedness and COVID-19: An Exploratory Analysis of Infection and Fatality Rates, and Contextual Factors Associated with Preparedness in 177 Countries, from Jan 1, 2020, to Sept 30, 2021,” Lancet 399, no. 10334, 1489–512; “Chapter 3: Trust in and Perceived Value of Science Amid COVID-19,” wellcome.org, September 18, 2020, https://wellcome.org/reports/wellcome-global-monitor-COVID-19/2020/ chapter-3-trust-in-perceived-value-of-science-amid-COVID-19. 14.  Office of the High Commissioner for Human Rights (OHCHR), “Compilation of Statements by Human Rights Treaty Bodies in the Context of COVID-19,” ohchr. org, September 2020, https://www.ohchr.org/Documents/HRBodies/TB/COVID19/ Exter​nal_TB_statements_COVID19.pdf; UN Human Rights Council, Resolution 46/4, Human Rights, Democracy and the Rule of Law, A/HRC/RES/46/4 (March 23, 2021). 15.  Michelle Bachelet,“COVID-19: Exceptional Measures Should Not Be Cover for Human Rights Abuses and Violations,” ohchr.org, April 27, 2020, https://www.ohchr.org/ en/statements/2020/04/COVID-19-exceptional-measures-should-not-be-cover-human​ -rights-abuses-and?LangID=E&NewsID=25828. 16.  See Joelle Grogan and Alicia Ely Yamin, “A Functionalist Approach to Analyzing Legal Responses across Countries: Comparative Insights from Two Global Symposia,” in COVID-19 and the Law: Disruption, Impact and Legacy, ed. I. Glenn Cohen, Abbe Gluck, Katherine Kraschel, and Carmel Shachar (Cambridge, UK: Cambridge University Press, 2023). 17.  Kenyon Farrow, “4 Things We Must Do to Fight Medical Mistrust after the COVID19 Pandemic Ends”, thebodypro.com, December 10, 2020, https://www.thebodypro.com/ article/fight-medical-mistrust-after-COVID-19-pandemic.

Notes to Chapter Seven 273

18.  Ami R. Buikema, Paul Buzinec, Misti L Paudel, Katherine Andrade, Jonathan C Johnson, Yvette M Edmonds, Sumit K Jhamb, et al., “Racial and Ethnic Disparity in Clinical Outcomes among Patients with Confirmed COVID-19 Infection in a Large US Electronic Health Record Database,” eClinicalMedicine 39 (September 2021) 101075. 19.  See for example Trygve Ottersen and Ole F Norheim, “Making Fair Choices on the Path to Universal Health Coverage.” Bulletin of the World Health Organization 92, no. 6 (2014): 389; Norman Daniels, Just Health: Meeting Health Needs Fairly (Cambridge, UK: Cambridge University Press, 2007); World Health Organization (WHO), “Communicating Risk In Public Health Emergencies,” who.int., January 10, 2018, https://www.who.int/ activities/communicating-risk-in-public-health-emergencies. 20.  See for example, Maarten Jansen, Rob Balthussen, and Kristine Bæroe et al., “Stakeholder Participation for Legitimate Priority Setting: A Checklist,” International Journal of Health Policy Management 7 (2018): 973–76; Ole F. Norheim, “Ethical Priority Setting for Universal Health Coverage: Challenges in Deciding upon Fair Distribution of Health Services,” BMC Medicine 14, no. 75 (2016); and WHO Consultative Group On Equity And Universal Health Coverage, “Making Fair Choices on the Path to Universal Health Coverage,” who.int, 2014, https://www​.who.int/publications/i/item/9789241507158. See also Daniels, Just Health; and Alicia Ely Yamin and Tara Boghosian, “Democracy and Health: Situating Health Rights within a Republic of Reasons,” Yale Journal on Health Policy, Law And Ethics 19 (2020): 87–123. 21.  The Independent Panel, “Make It the Last Pandemic,” theindependentpanel. org, May 2005, https://theindependentpanel.org/wp-content/uploads/2021/05/COVID​ -19-Make-it-the-Last-Pandemic_final.pdf. 22.  Council on the Economics of Health for All, 5. 23.  UN Committee on Economic, Social and Cultural Rights (CESCR), Concluding Observations of the Committee on Economic, Social and Cultural Rights: Spain, UN Doc. E/C.12/ESP/CO/5 (June 6, 2012); UN Committee on the Elimination of All Forms of Discrimination Against Women (CEDAW), Concluding Observations on the Combined Seventh and Eighth Periodic Reports of Spain, UN Doc. CEDAW/C/ESP/CO/7–8 (July 29, 2015); Corte Constitucional [C.C.] [Constitutional Court], 1 de junio, 2018, Sentencia T-210/18 (Colom.). 24.  Réné Kladzyk, Phil Galewitz, and Elizabeth Lucas, “In Texas-Mexico Border Towns, COVID-19 Has Had an Unconscionably High Death Toll,” time.com, June 22, 2021, https://time.com/6074581/COVID-19-deaths-texas-mexico-border/. 25.  See Alicia Ely Yamin, S. Negri, and R. Habibi, “On Sea Monsters and Sandcastles,” Yearbook of International Disaster Law Online, 3, no. 1 (2022): 180–209. 26.  UN High Commissioner for Refugees (UNHCR), Global Trends: Forced Displacement in 2019 (Geneva: UNHCR, 2020). 27.  Jeffery D. Sachs, “Financing Universal Health Coverage in Low-Income Countries,” globalgovernanceproject.org, 2022, https://www.globalgovernanceproject.org/ financing-universal-health-coverage-in-low-income-countries/. 28.  Inter-Agency Task Force on Financing for Development, “Official Development Assistance,” issues brief, un.org., August 2016, https://www.un.org/esa/ffd/wp-content/ uploads/2016/01/ODA_OECD-FfDO_IATF-Issue-Brief.pdf.

274 Notes to Chapter Seven

29.  UN General Assembly, Resolution 70/1, Transforming Our World: The 2030 Agenda for Sustainable Development, A/RES/70/1 ¶8 (Oct. 21, 2015). 30.  Nancy Birdsall, “The Donors’ Dilemma—The Future of Aid: 2030 ODA No More,” globalpolicyjournal.com, November 8, 2013, http://www.globalpolicyjournal.com/ blog/08/11/2013/donors%E2%80%99-dilemma-future-aid-2030-oda-no-more. 31.  “UN Calls for $2.5 trillion Coronavirus Crisis Package for Developing Countries,” unctad.org, March 30, 2020, https://unctad.org/news/un-calls-25-trillion-coronavirus​ -crisis-package-developing​-countries. 32.  “2020 Edelman Trust Barometer,” edelman.com, January 19, 2020, https://www​ .edelman.com/trust/2020-trust-barometer. 33.  Charles Gift, What’s the World Health Organization For? Final Report from the Centre on Global Health Security Working Group on Health Governance, (London: Royal Institute of International Affairs, 2014), 4. 34.  Chelsea Clinton and Devi Sridhar, Governing Global Health: Who Runs the World and Why? (Oxford, UK: Oxford University Press, 2017), 203. 35.  “WHO COVID-19 Technology Access Pool,” who.int, May 2022, https://www​ .who.int/initiatives/COVID-19-technology-access-pool. 36.  Mark Suzman, “One year in: Extraordinary Achievement, Powerful Momentum, and Still a Shortfall for the ACT-Accelerator,” gatesfoundation.org, April 22, 2021, https:// www.gatesfoundation.org/ideas/articles/act-accelerator-who-vaccine. 37.  Ole Petter Ottersen et al., “The Political Origins of Health Inequity: Prospects for Change,” Lancet 383, no. 9917 (2014): 630–67. 38.  Øystein Bakke and Dag Endal, “Vested Interests in Addiction Research and Policy: Alcohol Policies out of Context: Drinks Industry Supplanting Government Role in Alcohol Policies in sub-Saharan Africa,” Addiction 105, no. 1 (2010): 26. 39.  Pankaj Ghemawat, “Globalization in the Age of Trump: Protectionism Will Change How Companies Do Business—But Not in the Ways You Think,” Harvard Business Review 95, no. 4 (2017): 119. 40.  “Profiting from pain,”oxfam.org, May 23, 2022, https://www.oxfam.org/en/ research/profiting-pain. 41.  Raj Patel, Stuffed and Starved: The Hidden Battle for the World Food System (Brooklyn, NY: Melville House, 2007). 42.  “One Health,” who.int, September 21, 2017, https://www.who.int/news-room/ questions-and-answers/item/one-health. 43.  “Annex 2 of the International Health Regulations (2005): Overview,” who.int, 2005, https://www.who.int/publications/m/item/annex-2-of-the-international-health​ -regulations​-(2005). 44.  J. W. Tang, “COVID-19: Interpreting Scientific Evidence—Uncertainty, Confusion and Delays,” BMC Infectious Diseases 20 (2020): 653. 45.  The Independent Panel, “COVID-19: Make It the Last Pandemic,” final report, theindependentpanel.org, May 12, 2021, https://theindependentpanel.org/mainreport/; “Report of the Review Committee on the Functioning of the International Health Regulations (2005) during the COVID-19 response,” who.int, April 30, 2021, https://www.who​ .int/publications/m/item/a74-9-who-s-work-in-health-emergencies.

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46.  Philip Reeves, “Brazil Senate Recommends Bolsonaro Be Charged with Crimes against Humanity,” npr.org, October 27, 2021, https://www.npr.org/2021/10/27/1049797081/ brazil-senate-recommends-bolsonaro-be-charged-with-crimes-against-humanity/. 47.  “NCI Study Highlights Pandemic’s Disproportionate Impact on Black, American Indian/Alaska Native, and Latino Adults,” nih.org, October 4, 2021, https://www​ .nih​.gov/news-events/news-releases/nci-study-highlights-pandemics-disproportionate​ -impact-black-american-indian-alaska-native-latino-adults; “While the World Focuses on COVID-19, Indigenous Peoples in Myanmar Are Being Killed,”iwgia.org, April 17, 2020, https://www.iwgia.org/en/myanmar/3570-while-the-world-focuses-on-COVID-19,indigenous-peoples-in-myanmar-are-being-killed.html. 48.  Committee on Economic, Social and Cultural Rights, General Comment No. 25 on Science and Economic, Social and Cultural Rights, E/C.12/GC/25, ¶8 (April 30, 2020). 49.  James Packard Love, Additional Comments for the Public Hearing on the Proposed WHO Treaty on Pandemic Preparedness and Response,” keionline.org, April 13, 2022, https://www.keionline.org/37661. 50.  Meier, et al., “Global Obligations,” 1, 28. 51.  Lawrence O. Gostin, Global Health Law (Cambridge, MA: Harvard University Press, 2014); Lawrence O. Gostin, Eric A. Friedman, et al., “Towards a Framework Convention on Global Health,” World Health Organization Bulletin 91 (2013): 790–93. 52.  Leigh Haynes et al., “Will the Struggle for Health Equity and Social Justice Be Best Served by a Framework Convention on Global Health?” Harvard Health and Human Rights 15, no. 1 (2013): 111. 53.  Kathomi Gatwiri, J. Amboko, and D. Okolla, “The implications of Neoliberalism on African Economies, Health Outcomes and Wellbeing: A Conceptual Argument,” Social Theory and Health 18, no. 1 (2020): 86–101. 54.  “$165 Billion to 83 Countries, Including $16.1 Billion to 49 Low-Income Countries,”imf.org, September 15, 2020, https://www.imf.org/external/pubs/ft/ar/2020/ eng/what-we-do/lending/. 55.  Olusoji Adeyi, “Global health, Narcissistic Charity, and Neo-Dependency,” developmenttoday.com, December 31, 2021, https://www.development-today.com/archive/ dt-2021/dt-9--2021/global-health-narcissistic-charity-and-neo-dependency. 56.  Website of the Global Public Investment Network, https://globalpublicinvestment. net. Last accessed November 15, 2022. 57.  Council on the Economics of Health for All, 25. 58.  Council on the Economics of Health for All, 25. 59.  Jason Hickel, Dylan Sullivan, and Huzaifa Zoomkawala, “Plunder in the Post-Colonial Era: Quantifying Drain from the Global South through Unequal Exchange,1960–2018,” New Political Economy 26, no. 1 (2021): 1−18. 60.  Khadija Sharife, “Big Pharma’s Taxing Situation,” World Policy Journal 33 (2016): 88–95. 61.  ETO Consortium, “Maastricht Principles on the Extraterritorial Obligations of States in the Area of Economic, Social and Cultural Rights,” ¶8, etoconsortium.org, September, 28, 2011. https://www.etoconsortium.org/nc/en/main-navigation/library/ maastricht-principles/?tx_drblob_pi1%5BdownloadUid%5D=23.

276 Notes to Chapter Seven and Conclusions

62.  ETO Consortium, ¶9. 63.  “Global Jurists Call for Waiver of Global Intellectual Property Rights for COVID19 Vaccines and Therapeutics,” icj.org, November 8, 2021, https://www.icj.org/global​ -jurists-call-for-waiver-of-global-intellectual-property-rights-for-COVID-19-vaccines​ -and-therapeutics/. 64.  UN Covenant on Economic, Social and Cultural Rights (CESR) “General Comment No. 20: Non-Discrimination in Economic, Social and Cultural Rights, (art. 2, para. 2, of the International Covenant on Economic, Social and Cultural Rights, E/C.12/GC/20 (2009); General Comment No. 24 on State Obligations under the International Covenant on Economic, Social and Cultural Rights in the Context of Business Activities, E/C.12/GC/24 (2017); UN Committee on the Elimination of Racial Discrimination (CERD) Concluding Observations: Norway, CERD/C/NOR/CO/19-20 (2011); UN Committee on the Rights of the Child (CRC), General Comment No. 16 on State Obligations Regarding the Impact of the Business Sector on Children’s Rights, CRC/C/GC/16 (2013); UN Human Rights Committee, Concluding Observations: Germany, CCPR/C/DEU/CO/6 (2012). 65.  Adeyi, “Global Health.”. 66.  Eugene T. Richardson, et al., “Reparations for American Descendants of Persons Enslaved in the U.S. and Their Potential Impact on SARS-CoV-2 Transmission,” Social Science & Medicine 276 (May 2021): 113741. 67.  Timothy Craig et al., “WAO Guideline for the Management of Hereditary Angioedema,” World Allergy Organization Journal 5, no. 12 (2012): 182–99. 68.  Jededihah Britton-Purdy et al., “Building a Law-and-Political-Economy Framework: Beyond the Twentieth-Century Synthesis,” Yale Law Journal 129, no. 6 (2020): 1827. Conclusions 1.  António Guterres, “Our Common Agenda—Report of the Secretary-General” (New York: United Nations, 2021), 15. 2.  Albert Camus, “The Almond Trees” in Lyrical and Critical Essays (New York: Vintage Books, 1970), 135. 3.  Inter-American Court of Human Rights, Annual Report 2017 (Washington DC: Organization of American States, 2017), 37, 42. 4.  “Additional Protocol to the American Convention on Human Rights in the Area of Economic, Social and Cultural Rights” (“Protocol of San Salvador”), ohchr.org, November 16, 1999, https://www.ohchr.org/en/resources/educators/human-rights-education​ -training/4-additional-protocol-american-convention-human-rights-area-economic​ -social-and-cultural-rights. 5.  Poblete Vilches y Otros v. Chile, Inter-Am. Ct. H.R. (ser. C) No. 349 (March 8, 2018). 6.  Suárez Peralta v. Ecuador, Inter-Am. Ct. H.R. (ser. C) No. 261 (May 21, 2013). 7.  Lagos del Campo v. Perú, Inter-Am. Ct. H.R. (ser. C) No. 340 ¶¶142–145 (August 31, 2017). 8.  Oscar Parra Vera “La justiciabilidad de los derechos econónomicos, sociales y culturales en el Sistema Interamericano a la luz del artículo 26 de la Convención Americana: El sentido y la promes del caso Lagos del Campo,” in Inclusión, Ius Commune y

Notes to Conclusions 277

justiciabilidad de los DESCA en la jurisprudencia interamericana. El caso Lagos del Campo y los nuevos desafíos. Colección Constitución y Derechos, ed. Eduardo Ferrer MacGregor, Mariela Morales Antoniazzi, and Rogelio Flores Pantoja (Mexico City: Instituto de Estudios Constitucionales, 2018). 9.  For example, Tara J. Melish, “Rethinking the ‘Less as More’ Thesis: Supranational Litigation of Economic, Social, and Cultural Rights in the Americas,” New York University Journal of International Law and Policy 39 (2006): 171–343; James L. Cavallaro and Emily J. Schaffer, “Less as More: Rethinking Supernational Litigation of Economic and Social Rights in the Americas,” Hastings Law Journal 56, no. 2 (2004): 217–82. 10.  Medio ambiente y derechos humanos, Inter-Am. Ct. H.R., Opinión Consultiva Oc-23/17, Solicitada Por La República De Colombia (Nov. 15, 2017). 11.  Logan Marshall, The Story of the Panama Canal (Philadelphia: John C. Winston, 1913). 12.  Caroline Lieffers, “How the Panama Canal Took a Huge Toll On the Contract Workers Who Built It,” smithsonianmag.com, April 18, 2018, https://www.smithsonian​ mag.com/history/how-panama-canal-took-huge-toll-on-contract-workers-who-built-it​ -180968822/#:~:text=But%20the%20project%2C%20which%20employed,toll%20was%20 several%20times%20higher. 13.  Poblete Vilches, ¶¶14–24; Vinicio Antonio Poblete Tapia and Family v. Chile, InterAm. Cmm’n. H.R., Report No. 1/16 CASE 12,695, OEA/Ser.L/V/II.157 Doc. 5 (April 13, 2016). 14.  Gabriel Bastías et al., “Health Care Reform in Chile,” Canadian Medical Association Journal 179, no. 12 (2008): 1289–92. 15.  Thomas J. Bossert and Thomas Leisewitz, “Innovation and Change in the Chilean Health System,” New England Journal of Medicine, 374 (2016): 1–5. 16.  Tribunal Constitutional [T.C.] [Constitutional Court], 6 agosto 2010, Rol de la causa: 1710–2010 (Chile). 17.  Poblete Vilches, ¶209. 18.  Albert Camus, The Myth of Sisyphus, trans. Justin O’Brien (New York: Vintage Books, 2018). 19.  Wendy Brown, Undoing the Demos: Neoliberalism’s Stealth Revolution (New York: Zone Books, 2015), 10. 20.  For example, see César Rodríguez-Garavito, “Human Rights 2030,” in The Struggle for Human Rights ed. Nehal Bhuta et al. (Oxford, UK: Oxford University Press, 2021); contrast Benjamin Meier and William Onzivu, “The Evolution of Human Rights in World Health Organization Policy and the Future of Human Rights through Global Health Governance,” Public Health 128, no. 2 (2014): 179–87. 21.  For an example of these claims, see Naomi Klein, The Shock Doctrine: The Rise of Disaster Capitalism (Toronto: Knopf Canada, 2007); Klein, No Logo, 10th Anniversary Edition, (Toronto: Vintage Canada, 2009). 22.  For example, see Margaret R. Somers, Genealogies of Citizenship: Markets, Statelessness and the Right to Have Rights (Cambridge, UK: Cambridge University Press, 2008); Paul O’Connell, “On Reconciling Irreconcilables: Neo-Liberal Globalisation and Human Rights,” Human Rights Law Review 7, no. 3 (2007): 483–509; Audrey R. Chapman, Global

278 Notes to Conclusions

Health, Human Rights and the Challenge of Neoliberal Policies (Cambridge, UK: Cambridge University Press, 2016). 23.  Philip Alston, “The Populist Challenge to Human Rights,” Journal of Human Rights Practice 9 (2017): 15. 24.  Lynn P. Freedman, “Achieving the MDGs: Health Systems as Core Social Institutions,” Development 48 (2005): 20. 25.  A column in Open Global Rights drew heavily from these ideas in paying tribute to Dr. Paul Farmer. Alicia Ely Yamin, “Reflections on Paul Farmer’s Legacy: A Clarion Call for Transformative Human Rights Praxis in Global Health,” openglobalrights.org, March 4, 2022, https://www.openglobalrights.org/reflections-on-paul-farmers-legacy​ -a-clarion-call-for-transformative-human-rights-praxis-in-global​-health/. 26.  Philip Alston, “The Populist Challenge to Human Rights,” Journal of Human Rights Practice, 9, no. 1 (2017): 1–15. 27.  “Social Determinants of Health,” who.int, 2022, https://www.who.int/health-topics/ social-determinants-of-health#tab=tab_1. 28.  Paul Farmer, Pathologies of Power: Health, Human Rights, and the New War on the Poor (Oakland, CA: University of California Press, 2003). 29.  See Alicia Ely Yamin, “A Letter to Young and Future Leaders in Struggles for Health Rights and Social Justice,” Health and Human Rights 22, no. 1 (2020): 347–50. 30.  Eduardo Galeano, “El visitante,” Los hijos de los días (Montevideo: Ediciones del Chanchito, 2012). 31.  See Alicia Ely Yamin, “Silencing the Drama—Do the SDG Indicators Expose the Injustices That Limit Women’s Sexual and Reproductive Lives?” openglobalrights.org, March 27, 2019, https://www.openglobalrights.org/silencing-the-drama-do-the-SDGindicators​-expose-the-injustices-that-limit-womens-sexual-and-reproductive-lives/. 32. Farmer, Pathologies of Power. 17. 33.  Katheryn Sikkink, “Rethinking the Notion of a Human Rights Crisis,” openglobalrights.org, July 31, 2018, https://www.openglobalrights.org/rethinking-the-notion-of​ -a-human-rights​-crisis/. 34.  Poblete Vilches y Otros v. Chile. 35.  Poblete Vilches, ¶238–239. 36.  Alicia Ely Yamin, “Documento complementario a prueba pericial, 24 octubre, 2017, incorporado a expediente de fondo, Poblete Vilches y Otros v. Chile,” Inter-Am. Ct. H.R. (ser. C) No. 349 (March 8, 2018). 37.  Law No. 20.606, Junio 6, 2012, DIARIO OFICIAL [D.O.] (Chile). 38.  Law No. 20.869, Junio 11, 2015, DIARIO OFICIAL [D.O.] (Chile). 39.  Alicia Ely Yamin, “Documento complementario.” 40.  Hernán Sandoval, “Derecho a la salud, ¿Derecho garantizado?” lecture, Universidad de las Américas, Santiago de Chile, November 22, 2016. 41.  Ronald Dworkin, Justice for Hedgehogs (Cambridge, MA: Harvard University Press, 2011), 418–20. 42.  “Entrevista a Dr. Hernán Sandoval,” Foro Universitario, Radio U de Santiago 94.5, November 10, 2018, https://www.youtube.com/watch?v=bSRFYFgqwZ8.

Notes to Conclusions 279

43.  Albie Sachs, The Soft Vengeance of a Freedom Fighter (Oakland, CA: University of California Press, 2014). 44.  Cuscul v. Pivaral; Vras Rojas v. Chile; Gonzalex Lluy v. Ecuador; Vero Lleras v. Chile; Manuela v. El Salvador. Also Mariela Morales Antoniazzi, Liliana Ronconi, y Laura Clerico, eds., La Interamericanizacion de los DESCA, (Mexico) (Queretaro, Mexico: Max Planck Institute for Comparative and International Law/Instituto de Estados Constitucionales de Queretaro/ Instituto de Investigaciones Juridicas de la UNAM, 2020). 45.  “Emotivo discurso de Elisa Loncon elegida presidenta de la Convención Constitucional,” https://www.youtube.com/watch?v=Oobt9rppKe4. 46.  UN General Assembly, Resolution 217 A (III), Universal Declaration of Human Rights, A/RES/217A(III), art. 28 (Dec. 10, 1948). 47.  Camus, “Almond Trees,” 135.

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INDEX

AAAQ (availability, accessibility, acceptability, and quality) framework, 152 Abímbólá, Sèye, 145, 149 abortion: access to, 26–27, 34, 92; Argentina and, 50–51, 93, 183, 224, 231; Brazil and, 167; CEDAW and, 41; as constitutional right, 90; deaths from unsafe abortions, 18; ESC rights and, 92; health rights and, 178; human rights and, 198; ICPD and, 86; Malawi and, 131; Mexico and, 113; Peru and, 116, 121, 123; SRHR and, 150; Universal Declaration and, 31; women’s rights and, 41–44, 116 Abramovich, Victor, 159 Acceso Universal a Garantías Explícitas (AUGE) reforms, 219, 238. See also Chile Access to Justice Program of the Civil Association for Equality and Justice (ACIJ), 180 Achmat, Zackie, 137 Acindar, 49–50. See also Argentina Acosta, Jorge, 24 ACT-Accelerator (ACT-A), 204 ACUMAR. See Autoridad de Cuenca Matanza Riachuelo Adeyi, Olusoji, 212 Adjustment with a Human Face (UNICEF), 61

Advocacia Cidadã Pelos Direitos Humanos, 159 advocacy networks, 157, 174 AFDC. See Aid to Families with Dependent Children Africa, sub-Saharan; Brazil and, 163; CHWs in, 47–48; colonialism and, 212; COVID-19 pandemic and, 146–47; debt and, 134–35; exports, 32; global health justice and, 154, 207–9; global political economy and, 135–37; health financing schemes in, 200; health systems in, 68; HIV/AIDS in, 67, 130–33, 141–42, 144, 226, 231; IMF and, 60; LGBTQ+ rights in, 150; maternal health in, 17; right to health in, 9; Universal Declaration of Human Rights and, 30. See also Malawi; South Africa; Tanzania; Uganda African National Congress (ANC), 137, 239. See also South Africa Agência Nacional de Vigilância Sanitária (ANVISA), 176. See also Brazil Agenda 2030, 163, 227 Ahmed, Aziza, 55 Aid to Families with Dependent Children (AFDC), 53–54 AIDS. See HIV/AIDS AIDS Coalition to Unleash Power (ACT UP), 67, 138

281

282 Index

al-Hussein, Zeid Raad, 192 Allende, Salvador, 69, 238–39. See also Chile Alma-Ata. See Declaration of Alma-Ata Alston, Philip, 2, 34, 223 Alyne da Silva Pimentel case, 9, 159–61, 163–64, 169–75, 184–86, 227. See also Brazil; CEDAW Committee Amazon rainforest, Bolsonaro government policies on, 186 American Convention on Human Rights, 115, 217 Amnesty International, 167 Anand, Sudhir, 149 Angarita, Ciro, 90 Annan, Kofi, 130 antiretroviral medication (ARV), 14, 67, 131, 139–42, 175–76. See also HIV/ AIDS ANVISA. See Agência Nacional de Vigilância Sanitária APRODEH. See Asociación Pro Derechos Humanos Arab slave trade, 19 Argentina: civic-military dictatorship, 22–25, 33–34, 59, 166, 184; constitutional reforms, 89, 91–92, 176; debt, 60, 98; environmental pollution, 161; Green Wave, 44, 50, 67, 73; health justice and, 178–81; HRBAs and, 175; human rights and, 28–29, 32, 38, 92, 220; post-dictatorship era, 48–51; reproductive justice in, 26, 85; women’s rights in, 38–41, 43–44, 48, 67, 93, 183, 231; worker’s rights in, 95 Arrow, Kenneth, 69 Arroyo, Juan, 97 Asociación Pro Derechos Humanos (APRODEH), 113–14. See also Peru AUGE reforms. See Acceso Universal a Garantías Explícitas austerity, 7, 46, 75, 132, 155, 161–64, 185, 191–92, 203, 208, 233

Autoridad de Cuenca Matanza Riachuelo (ACUMAR), 180 AZT (azidothymidine), 67. See also HIV/ AIDS   Babb, Sarah, 97 Bain & Co., 156 Baker, James, 98 Balakrishnan, Radhika, 47 bankruptcy, 70, 98, 138, 200 Barrientos, Pabla Arizanca, 105–9, 111, 114, 117, 119–22, 126–29, 168, 226 Basile, Gonzalo, 147 Beijing Conference and Platform of Action, 111 See also Fourth World Conference on Women Benhabib, Seyla, 13 Berer, Marge, 143 Biehl, Joao, 177 bilateral tubal ligation (BTL), 105, 112–16, 118–19 Bill and Melinda Gates Foundation. See Gates Foundation biomedical paradigm, 64–65, 169 Birn, Anne-Emanuelle, 144 birth control. See contraception Black Lives Matter movement, 2, 196 Black Report, 63–64 Bøås, Morten, 97 Boeringer Ingelheim, 140 Bolsonaro, Jair, 160, 186, 192–93, 207. See also Brazil; populism Borges, Danielle, 177 Borges, Jorge Luis, xv Boric, Gabriel, 239 Bourdieu, Pierre, xxi Boutrous-Ghali, Boutros, 83 Brady Plan, 98 Brazil: Bolsa Familia, 163; CEDAW Committee and, 159, 169–71, 173, 184–85, 227; cesarean births in, 158–59; COVID-19 pandemic and, 207; HIV/

Index 283

AIDS and, 133; inequality in, 165–67, 233; judicialization and, 175–79; postdictatorship constitution, 69; populism and, 160, 186 ; right to health and, 160, 169–72. See also Alyne da Silva Pimentel case; Bolsonaro, Jair; da Silva; da Silva, Luis Inácio “Lula” Bretton Woods institutions, 27–28, 56, 60, 62, 96, 225 BRICS countries, 163 Brinks, Daniel, 92 Brown v. Board of Education (1954), 53 Bulger, Billy, 54 Burle Marx, Roberto, 166 Bush, George W., 142 busing, court-ordered, 53 Butler, Judith, 86, 127 BVerfGE 39,1—Abortion I case (1975), 42   Cabal, Luisa, 94 Cairo Conference, 85. See also International Conference on Population and Development Camus, Albert, 217, 240 capabilities theory (Sen), 59, 82. See also Sen, Amartya Cárdenas, Lázaro, 78, 80 Cardoso, Fernando, 176 care work: COVID-19 pandemic and, 187–88, 201; gender and, 47–48 Carlson, Mary, 72 Cassese, Antonio, 33, 49 CAT. See United Nations, Committee against Torture Catholic Church, 96, 108, 111, 113 CEDAL. See Centro de Derechos y Desarrollo CEDAW. See Convention on the Elimination of All Forms of Discrimination against Women CEDAW Committee: 2017 ruling on gender-based violence, 45; AAAQ framework and, 152; Alyne da Silva Pimentel

case and, 159–61, 170–71,173, 184–85; human rights and, 169–70, 227. See also Convention on the Elimination of All Forms of Discrimination against Women CEHURD. See Center for Human Rights and Development CEJIL. See Center for Justice and International Law Center for Economic and Social Rights (CESR), xii, 4, 232 Center for Human Rights and Development (CEHURD), 174 Center for Justice and International Law (CEJIL), 94, 114 Center for Reproductive Rights (CRR), 94, 114, 116, 159 Centro de Culturas Indigenas del Perú (Center for Indigenous Cultures of Peru, CHIRAPAQ), 110 Centro de Derechos y Desarrollo (CEDAL), 113. See also Peru CEPI. See Coalition for Epidemic Preparedness Innovations CERD. See United Nations, Convention on the Elimination of All Forms of Racial Discrimination CESR. See Center for Economic and Social Rights Chamorro, Berenice, 22–25 Chamorro, Rubén Jacinto, 22–24 child mortality, 14, 71, 143 child rights, 71–72 child survival revolution, 57, 71. See also UNICEF Chile: health system, 233, 237; human rights and, 33, 49; inequality in, 239; public health and, 69, 237–38. See also Allende, Salvador; Pinochet, Augusto; Poblete Vilches v. Chile CHIRAPAQ. See Centro de Culturas Indigenas del Perú CHWs. See community health workers

284 Index

civil and political (CP) rights, 4, 26, 34–37, 82–85, 88–89, 113, 167, 199 civil society actors, 31, 83, 100, 126, 140, 142, 157, 159, 174, 180, 182, 202 CLADEM. See Comité de América Latina y el Caribe para la Defensa de los Derechos de las Mujeres climate change: Bolsonaro and, 186; failure of institutions to address, 7; Framework Convention on Climate Change, 82, 186; global justice and, 156; health emergencies and, 205; human rights and, 38, 201; inequality and, 192; litigation and, 175; migration and, 145; populism and, 186, 193 Clinton, Bill, 54 Clinton, Chelsea, 203 Coalition for Epidemic Preparedness Innovations (CEPI), 204 Cold War, 9, 26, 34, 81–83, 189, 212 Colectivo Sociedad Civil (Civil Society Collective), 116 Colombia: abortion rights in, 51; constitutional rights in, 89–92, 176; economy, 58; glyphosate use in, 189; health rights litigation, 176–83; health system, 161, 200; Inter-American Court and, 217–18 colonialism: economy and, 59; environment and, 107; global health security and, 146; health systems and, 68, 108, 116–18, 133, 136, 142, 208, 226, 234; human rights and, 20–21, 30; IHR and, 205; inequality and, 28; intellectual property and, 100; international trade and, 155; LGBTQ+ rights and, 150; NIEO and, 32–33, 37; Peru and, 116–18, 126, 128, 233; reparations and, 211–12; women’s rights and, 41, 118, 156. See also neocolonialism coloniality, 21, 155 Comissão Nacional de Incorporação de Tecnologias no Sistema Único de Saúde (CONITEC), 176–77

Comité de América Latina y el Caribe para la Defensa de los Derechos de las Mujeres (CLADEM), 114, 116 commercial actors, healthcare and, 64, 172 Commission on Global Governance for Health, 154, 204 community-based health care, 238 community health workers (CHWs), 47–48 Condorcet, Nicolas de, 85 Confederación de Trabajadores de México (Confederation of Mexican Workers, CTM), 95, 107 Conferences on Principles (COPs), 82 CONITEC. See Comissão Nacional de Incorporação de Tecnologias no Sistema Único de Saúde constitutional blocs, 92 Construtora Norberto Odebrecht S.A., 185 contraception: choice and, 21, 74; healthcare improvements and, 14; international law and, 39–41; Peru and, 112, 122; poverty and, 167; reproductive justice and, 41–42; SAPs and, 61; SRHR and, 148; women’s rights and, 26, 34, 44, 122 Convention on the Elimination of All Forms of Discrimination against Women (CEDAW): adoption of, 26, 39; Brazil and, 159, 161, 169–71, 173, 184–85, 227; children and, 71; data collection for, 40–41; goals of, 39–40; health care and, 40; international human rights law and, 94; violence against women and, 45. See also Alyne da Silva Pimentel case; CEDAW Committee Cook, Rebecca, 125, 158, 161 Coordinación General del Plan Nacional de Zonas Deprimidas y Grupos Marginados de la Presidencia de la

Index 285

República (COPLAMAR), 78. See also Mexico COPLAMAR. See Coordinación General del Plan Nacional de Zonas Deprimidas y Grupos Marginados de la Presidencia de la República Costa Rica, 90–91, 122, 175, 213–15, 233, 235 counterpublics, 129 court rulings: Dobbs v. Mississippi (2022), 42; Griswold v. Connecticut (1965), 42; I.V. v. Bolivia (2016), 124; Lagos del Campo v. Perú (2017), 217–19; Poblete Vilches v. Chile, 218–19, 221, 237–39; Roe v. Wade (1973), 42–43, 51; Brown v. Board of Education (1954), 53 COVID-19 pandemic: children and, 71, 74; domestic violence and, 27; global governance for health, 203–6; healthcare costs and, 70; health justice and, 12, 154–55, 186, 199–203, 207–13; health systems and, 195–99, 220; human rights and, 6, 186, 191, 193–95, 224–25; IHR and, 134; immune-compromised individuals and, 187–88; inequality and, 13–16, 18, 20, 53, 68, 102, 232; international law and, 5, 230; international trade and, 100–2, 191–92; misinformation and, 190; populism and, 193, 222–23; poverty and, 130; public health emergencies and, 192–93; race and, 183–84; social order and, 7–8; trust and, 165; women’s health and, 44–48. See also vaccines COVID-19 Technology Access Pool (CTAP), 204 CP rights. See civil and political (CP) rights CRC. See United Nations, Convention on the Rights of the Child crisis in care economy, 47–48 critical praxis, need for, 8, 17 CRR. See Center for Reproductive Rights

C-sections, 105, 158 CTM. See Confederación de Trabajadores de México   DALYs. See disability-adjusted life years Daniels, Norman, 15, 92, 153 da Silva, Luis Inácio “Lula,” 160, 162–63, 185–86. See also Brazil da Silva Pimentel, Alyne. See Alyne da Silva Pimentel case de Beauvoir, Simone, 26, 38 debt: Argentina and, 50; Brazil and, 163; cancellation of, 203, 208; global South and, 56, 60, 162, 233; health care and, 200; human rights and, 32; IMF and, 203, 224; Malawi and, 132, 134–35; Mexico and, 78, 80–81, 98; neoliberalism and, 56, 75, 97; Peru and, 109, 127; WTO and, 225; See also Brady Plan debt burdens, 56, 98 Declaration of Alma-Ata (WHO), 63–64, 71, 78 Declaration of the Rights of Man and Citizen (France, 1789), 29 democratic deliberation, 13, 166, 168, 173, 181–82, 236, 240 democratic institutions; growing cynicism about, 157, 227; legitimation crisis in, 13; in Peru, 109, 112 democratized decision-making, in health care, 197–99, 221, 234 DEMUS. See Estudio para la Defensa de los Derechos de la Mujer depoliticization of law, 29 deregulation: Argentina and, 50; global impact of, 55–56, 133, 144, 224–25; impact on health systems, 7; inequality and, 231; Peru and, 110, 119, 127 “structural adjustment” and, 60, 97 development, conceptions of: ends and means of, 57–60; multilateralism and, 61–63; overview, 57; Washington Consensus and, 60–61

286 Index

developmental psychology, 72 disability-adjusted life years (DALYs), 144, 149 disability rights, 148–49 discrimination formal, 40, 207 substantive, 40, 207 structural, 116–18, 126, 199, 207 Dobbs v. Jackson Women’s Health Organization (2022), 42 domestic violence: ; CEDAW and, 40, 152; COVID-19 pandemic and, 27, 224; inequality and, 46–47; legal systems and, 45–46, 142; women’s rights and, 44. See also violence; violence against women Doyle, Michael, 165 Dreze, Jean, 92 Duda, Andrzej, 195 Dworkin, Ronald, 218   Earls, Felton, 71 Easterbrook, Gregg, 14 Echegoyemberry, María Natalia, 180 economic, social, and cultural (ESC) rights. See ESC rights education: accessibility and, 148; Condorcet on, 85; cutbacks to public funding of, 166, 220; debt and, 134; ESC rights and, 80–81, 87–88; gender and, 87; HRBA initiatives and, 174; human rights and, 58–60, 153, 164, 232; inequality and, 2, 6, 74–75, 164, 169; race and, 16, 53; sex education, 148; women and, 40; World Conference on Education for All, 82 Elson, Diane, 47 Environment, Social, and Governance goals (ESGs), 143 equality: formal, 40, 85, 173, 177, 214, 231, 237; structural equality, 46, 231; substantive equality, 40, 46, 177, 198, 231, 237. See also inequality ESC rights: challenges in advancing, 4; constitutionalization of, 90–94, 140,

176; CP rights and, 34–35, 82–85, 90; enforcement of, 138; evolution of, 6, 10, 17; health justice and, 199, 202; IACHR and, 217–18; inequality and, 165; international law and, 26; NGOs and, 167; nonstate actors and, 210–11; norms and, 221; post-Cold War era and, 81; right to health and, 35–37; social contracts and, 87–88; social/ transformative constitutionalism and, 89–91; United Nations and, 88, 152, 154, 159, 172, 207 Estudio para la Defensa de los Derechos de la Mujer (DEMUS), 114, 116. See also Peru ethnonationalism, 20, 227 ETOs. See extraterritorial obligations extraterritorial obligations (ETOs), 210–111, 228 EZLN. See Zapatista Army for National Liberation   Facebook, 166, 189–90 Fanon, Frantz, 104, 107 Farmer, Paul, 1, 19, 157, 232, 234–35 farming, 106, 108, 111, 135, 141–42; ; indigenous communities and, 9, 111; Malawi and, 135; NAFTA and, 102, 212; neoliberalism and, 110; pollution and, 58, 189, 205; subsistence farming, 77, 80–81, 106, 108, 130 Fathalla, Mahmoud, 19 FCGH. See Framework Convention on Global Health Federación de Mujeres de Anta, 115 federalist systems, 92–93, 200 feminists. Argentinian laws and, 43, 50–51; human rights and, 84, 94, 129, 167; influence on our understanding of power, 39; Mexican laws and, 101; Peruvian laws and, 112, 115–16; reproductive rights and, 42, 85–86. See also Green Wave Ferraz, Octavio, 176–77

Index 287

financial sector, increased influence under neoliberalism, 162 financialization, 57, 81, 160–62, 165, 225, 231 First Gulf War, 3–4 First International Conference on Health Promotion (Ottawa, 1986), 64 “flexibilization” of labor, 7, 96, 108–9, 119, 123, 200–1, 218 Floyd, George, 183 Food and Drug Administration (FDA), 67, 214 Foreign Corrupt Practices Act (1977, US), 211 formal equality, 40, 85, 173, 177, 214, 231, 237 Foro Ciudadano en Salud (FOROSALUD), 126. See also Peru FOROSALUD. See Foro Ciudadano en Salud Foucault, Michel, 65 Fourth World Conference on Women (Beijing, 1995), 82–83, 96, 108 UN Framework Convention on Climate Change (1992), 82, 186 Framework Convention on Global Health (FCGH), 208 framing of issues, neoliberal success in, 97–98 Francois-Xaver Bagnoud Center for Health and Human Rights, 68 Fraser, Nancy, 47, 129, 174 Freedman, Lynn, 116, 128, 147, 170, 228 Friedman, Thomas, 97, 109, 111 Fujimori, Alberto, 108–14, 116, 118–20, 123, 127, 166, 217–18, 225. See also Peru Fukuda-Parr, Sakiko 165   Galeano, Eduardo, 52, 75, 212, 234 Gargarella, Roberto, 93, 179 Gates, Bill, 18 Gates Foundation, 142, 144, 203–4 GATT. See General Agreement on Tariffs and Trade

Gauri, Varun, 92 gender: care economies and, 47; democracy and, 13; discrimination and, 151, 158, 150; gender-based violence, 45, 173; gender bias, 86; gender ideology, 193; health care and, 7, 31, 108, 153, 219; human rights and, 84, 94, 164, 169, 225, 229–30; identity and, 149–51, 174, 193; inequality and, 26–27, 31, 47–48, 85, 126, 231; informed consent and, 124; MDGs and, 155–56; norms and, 112; otherness and, 2; Peruvian health system and, 126, 128; power and, 39, 115, 142; reproductive rights and, 26, 41–44, 115–16, 121; SAPs and, 61; vs. sex, 86–87; as social construct, 40; stereotypes and, 54, 86, 119, 124 General Agreement on Tariffs and Trade (GATT), 27, 62, 64, 99 Germany, 42–43, 62, 211 girls, identity construction in, 72 Glaxo SmithKline, 140 global financial crisis of 2008, 9, 133, 160, 162, 192, 205, 208, 226 global South: economic integration and, 81; ESC rights and, 210; gender and, 85; health security and, 146–47, 207; HIV/AIDS and, 133, 141; human rights and, 4, 32–33, 37, 232; IFIs and, 109, 162; intellectual property and, 100, 136, 234; NIEO and, 32–33, 37, 132; PHEIC and, 205; public health and, 233, 236; right to health and, 176, 202; SAPs and, 56–57, 60–61, 63 globalization: debt, inequality, and instability, 134–35; disability rights and, 148–49; global health and development, 141–47; global health justice, 154–55; global health security, 145–47; governance, accountability and, 143– 45; health systems and, 147–48; HIV/ AIDS and, 134–42; overview, 130–34; right to health and, 151–54; sexuality and, 149–51; South Africa and, 135–37

288 Index

glyphosate, 189, 205 Gore, Al, 136 Gramsci, António, 187 Grant, James, 71. See also child survival revolution; UNICEF Green Wave, 44, 51, 73. See also Argentina Griswold v. Connecticut (1965), 42 Gross, Aeyal, 146 gross domestic product (GDP), 48, 6, 120, 127, 202, 205 Grzebalska, Weronika, 193 Guterres, António, xix, 187, 217   Habermas, Jürgen, 13 Hall, Peter, 62 Haq, Mahbub ul, 59 Harvard T. H. Chan School of Public Health, 73 Haynes, Leigh, 208 Hazel Tau case, 140. See also intellectual property; South Africa health systems: charity, marketplaces, and citizenship, 68–70; COVID-19 and, 195–99, 220; financing for, 47–48, 56, 70, 108, 153, 155, 170, 181, 199–203; human rights framework and, 122–24; migrants and, 68, 188, 201–2; prioritysetting and, 178–79, 197–200, 214, 234 heavily indebted poor country (HIPC), 134–35 Helú, Carlos Slim, 102 hereditary angiodema (HAE), 213–15, 230, 235 Heywood, Mark, 138–40, 157 Hickel, Jason, 210 HIV/AIDS: 1980s epidemic, 65–67; access to medication and, 93; global health architecture and, 141–42; global health justice and, 154–55; US government response to, 137–41; health security and, 9, 146, 226; health systems and, 68, 70, 147; human rights and, 6, 68, 90; inequality and, 56, 73–74, 225;

judicial enforcement and, 160–61, 175; LGBTQ+ community and, 65–67, 76, 150; MDGs and, 142–43; medicalization of, 67–68; privatization and, 56; right to health and, 175–76; southern Africa and, 130–33, 136, 157, 172, 231; United Nations and, 149. See also prevention of mother to child transmission Human Development Index (HDI), 59 human rights: civil and political rights vs. ESC rights, 34–35; conceptualization of international norms and, 32–38; COVID pandemic and, 44–48; development and, 32–33; dignity and, 28–29; evolution in international law and practice, 39–41; multilateralism and, 27–28; public vs. private, 38–39; recognition and class, 33–34; reproductive rights, 41–44; right to health, 35–38; universality and legitimacy in international law, 29–32; women’s rights and, 38–48 human rights-based approach to health (HRBA), 160–61, 167–75, 182, 186, 221, 227 human rights nongovernmental organizations (NGOs): acceptance of distinction between CP and ESC rights, 37; growth of in 1990s, 83; international vs. local, 94–95; Mexico and, 96; Peru and, 111–13, 116 Human Rights Watch, 37, 95 Hunt, Paul, 148, 150–51, 167–68   immune-compromised individuals, 187 inequality: courts and health justice, 175–83; global financial crisis and, 161– 64; health, democracy, and, 164–67; human rights and, 167–75; structural inequalities, 8, 32, 46, 73, 101, 125, 136, 160, 179, 200, 231; substantive inequalities, 90. See also equality informed consent, 112, 124–25, 152, 173, 219

Index 289

Institute for Health Metrics and Evaluation (IHME), 144, 149 intellectual property: access to medicines and, 133, 204, 215, 234; arbitration and, 100; Brazil and, 176; globalization and, 62, 225; IFIs and, 99; inequality and, 136, 179, 183, 210, 214, 233; Intellectual Property Committee, 64; international law and, 11; Sub-Saharan Africa and, 133, 136, 139. See also Trade-Related Aspects of Intellectual Property Inter-American Commission on Human Rights (IACHR), 113–14, 124 Inter-American Court of Human Rights (IACtHR), 114, 124 Inter-American Development Bank (IDB), 110, 118 International Centre for the Settlement of Investment Disputes (ICSID), 99–100 International Conference on Population and Development (ICPD), 83, 85–87, 108, 111, 115, 121, 149, 168. See also Cairo Conference international financial institutions (IFIs), 8, 56, 60, 71, 98–99, 109–11, 118, 135, 143, 147, 162–63, 203, 208, 219, 226 International Health Regulations (IHR, 2005), 134, 146–47, 205–6, 226, 228 International Initiative on Maternal Mortality and Human Rights (IIMMHR), 167–68, 174 International Labour Organization (ILO), 47, 117 International Monetary Fund (IMF), 27, 49, 60, 96–98, 109, 134–35, 138, 203, 208, 224 intimate partner violence (IPV), 45. See also domestic violence I.V. v. Bolivia (2016), 124   Joint United Nations Programme on HIV/AIDS (UNAIDS), 142

Jomtien Conference on Education, and people-centered development, 82 judicial review, 179, 182   Kagan, Elena, 1 Kant, Immanuel, 22, 28 Kapczynski, Amy, 100, 103 Kennedy, David, 135 Kennedy, Duncan, 165 Kentikelenis, Alexander, 96 Kim, Jim Yong, 134 Knowledge Ecology International, 141, 208 Koskeinnini, Marti, 192 KPMG, 157 Kurasini Children’s Home, 73–75   Lagos del Campo v. Perú (2017), 217–19 Lagos, Ricardo, 219 Lamprea, Everaldo, 178, 181 Latin American and Caribbean Committee for the Defense of Women’s Rights (CLADEM), 114, 118 Laurell, Asa, 95 Lehohla, Pali, 138 LGBTQ+ rights, 34, 39, 45, 76, 86, 134, 149–50 liberal philosophical traditions, 12, 28–29 life expectancy, 12, 14, 53, 60, 65, 132 Link, Bruce, 16 Loncon, Elisa, 239 Lorde, Audre, 11, 29 Love, James, 141, 208 low-income countries (LICs), 75, 202, 204, 208 low- middle-income countries (LMICs), 75, 202, 204, 208 Lugar, Richard, 146 Lula. See da Silva, Luis Inácio “Lula”   Maastricht Principles on Extraterritorial Obligations of States, 172, 210 Mahler, Halfdan, 71

290 Index

Malawi: colonialism and; economic issues facing, 134–35, 232; HIV/AIDS in, 130–31, 226; inequality in, 132, 155–57; maternal mortality in, 143; neo-patrimonial system, 132; paramount chiefs and, 132, 155 Malvinas/Falklands war, 24, 50 Mamérita Mestanza Chávez v Peru case, 113–14, 118, 124–25, 159; See also Peru; violence against women Mandela, Nelson, 3, 136, 139 Mann, Jonathan, 67–68, 77 Maritain, Jacques, 30 Marrakesh Treaty, 149 Martínez de Hoz, José Alfredo, 49–50, 119 Marxism, 108, 238 maternal mortality: global, 18; health inequalities and, 18–19; HRBAs and, 173–74; human rights and, 6, 147–48; indigenous populations and, 126; intergenerational impacts of, 73; International Initiative on Maternal Mortality and Human Rights, 167–68; investigations into, 105; litigation regarding, 175; MDGs and, 108, 169; plans to reduce, 108, 122, 143, 172; unsafe abortions and, 18 Mbeki, Thabo, 137–38 McGoey, Linsey, 144–45 McNeill, Desmond, 97 Merry, Sally Engle, 31, 92, 121, 226 Mestanza, María Mamérita, 113–14, 124– 25, 159. See also Mamérita Mestanza Chávez v Peru case Mexico: abortion and, 51, 113; COVID19 pandemic and, 201; debt and, 60, 98–101; democracy in, 166; ESC rights and, 176; health rights and, 101–3; human rights and, 84, 233; IMF and, 96–98; indigenous communities and, 9, 88, 117, 212; modernization and, 77–81; neoliberalism and, 96–103; social constitutionalism and, 89; state re-

sponsibility, 95–96; Symbolic Tribunal on Maternal Mortality and Obstetric Violence, 101; women’s rights and, 51, 113, 178. See also Zapatista Army for National Liberation Millennium Development Goals (MDGs), xii, 108, 121–22, 133, 142–45, 147–48, 150, 155, 161, 163, 167–69, 202, 226 Morgan, Lynn, 118 Movimiento Revolucionario Túpac Amaru, 108. See also Peru Moyano, Maria Elena, 129 M pox (monkeypox), 208 multilateralism, 7–8, 13, 26–28, 50, 59, 61–63, 99, 134, 191, 202, 212, 225, 228 Mulveen, Jacky, 46 Museveni, Yoweri, 150   National Human Rights Institutions (NHRIs), 84 National Institutes of Health (NIH), 67 Neier, Aryeh, 37 neocolonialism, 3, 132, 142, 212 neoliberalism: Chile and, 33, 219; constitutional rights and, 140; COVID-19 pandemic and, 8, 157, 192, 216; debt, trade and, 98–101; discourse and governance, 96–98; financialization and, 57, 162, 225, 231; globalization and, 56, 75, 134; health rights and, 6, 228; health security and, 145, 201; human rights and, 58, 112–13, 179, 222; inequality and, 110, 232, 238–39; Mexico and, 95–98, 101–3; multilateralism and, 62–63; Peru and, 108, 110–13, 121, 127; Reagan and, 55; reforms and, 57, 226; SAPs and, 60–61; Subcomandante Marcos on, 77; Thatcher and, 55 New Deal, 54 New International Economic Order (NIEO), 32–33, 37, 56, 62, 64, 82, 132, 224 Nino, Carlos, 22, 29

Index 291

North American Free Trade Agreement (NAFTA), 80–81, 89, 96–97, 99, 102, 212   Obama, Barack, 2, 21, 146 official development assistance (ODA), 202 OHCHR. See United Nations, Office of the High Commissioner for Human Rights Open Society Foundation, 37 Open Society Initiatives, 144 Optional Protocol to CEDAW, 159 Orbàn, Viktor, 193, 195 Organisation for Economic Cooperation and Development (OECD), 102, 109 otherness, 2, 193 Ottawa Charter on Health Promotion, 64 Oxfam, 7, 211   Palma Index, 165 Partners In Health (PIH), xv, xxi, 141–42 Partnership for Maternal, Newborn, and Child Health (PMNCH), 168 People’s Vaccine Alliance, 157 Peru: abortion and, 116, 121, 123; colonialism and structural discrimination, 116–18; family planning program, 111–12; “Golden Straightjacket” and, 109–11; health system, 116–22; human rights community in, 112–16; indigenous communities in, 7, 9, 105–9; involuntary sterilizations and, 112–16, 121–22, 152; Mamérita Mestanza and, 124–26; mass abuses, 118–21; MDGs and, 150; women’s health in, 106–9, 124–29; women’s rights community in, 111, 114–16. See also Fujimori, Alberto; Mamérita Mestanza case; sterilization Peter, Fabienne, 149 Pfizer, xi, 64 Pharmaceutical Manufacturing Association (PMA) case, 139–40 PHEIC (public health emergency of international concern), 146, 205

Piñero, Sebastián, 239 Pinker, Stephen, 14 Pinochet, Augusto, 33, 49, 69, 219, 238–39. See also Chile Poblete Vilches v. Chile, 218–19, 221, 237–39. See also Chile Polanyi, Karl, 109 polio, 64 political determinants of health, 154, 204, 209–11 political participation, 35 political polarization, 192–94, 227 population debates at UN, 85 populism: fear and, 193; HRBAs and, 176; inequality and, 192, 208, 227; pandemics and, 193, 203, 222; rise of, 186, 191, 195. See also Bolsonaro, Jair; Trump, Donald positivism, 230 poverty as political issue, UN acceptance of, 82–83 Power, Suffering, and the Struggle for Dignity (Yamin), 5 practical progress, 13–14, 16, 62, 73, 219 Prado, Mariana Mota, 177 Pratt, Edmund, 64. See also intellectual property; Pfizer Prebisch, Raúl, 32. See also dependency theory President’s Emergency Plan for AIDS Relief (PEPFAR), 142, 149 prevention of mother to child transmission (HIV), 131, 137–40, 154, 161. See also HIV privatization: Brazil and, 166; Chile and, 219; financialization and, 162; Gates Foundation and, 144; globalization and, xi, 210, 224; of health systems, 7, 48, 56, 70, 182, 200; Malawi and, 135; Mexico and, 97–98, 102; Peru and, 109–10; reforms and, 56; SAPs and, 60; South Africa and, 137, 157; TNCs and, 210 privilege, 3, 20, 26, 156, 198, 206, 227, 236

292 Index

precautionary principle, 206 PROMSEX, 116. See also Peru Protocol of San Salvador (see also Additional Protocol on Economic, Social and Cultural Rights to the American Convention of Human Rights), 217–18, 237 public spaces, privatization of, 166   quality-adjusted life years (QALYs), 149 Quechua community, 105–8, 110, 115, 128 queer theory, 150   race: health inequalities and, 16, 160, 164, 174; segregation and, 53, 166 rape: abortion rights and, 43–44, 92; marital, 39, 111, 131 Rawls, John, 15, 30 Reagan, Ronald, 55 Rebouché, Rachel, 123 redistribution of wealth, 94, 137 reparations, 124, 184–85, 212, 237 reproductive governance, 118, 226 reproductive, maternal, newborn, and child health (RMNCH) approach, 168–69 reproductive rights: international human rights law and, 94, 123; MDGs and, 121–22, 169; population policies and, 85–87; reproductive justice and, 42; vernacularization and, 92. See also Alyne da Silva Pimentel case; sterilization ReproSalud, 112. See also Peru Richardson, Eugene, 212 right to health: Brazil and, 69, 170, 175–77, 186; Costa Rica and, 214; COVID19 pandemic and, 195–98, 200, 202; dignity and, 29; enforcement of, 9, 160; ESC rights and, 160, 165, 210; explained, 4; health systems and, 63–68; human rights and, 26, 88, 217–19, 230; IACtHR and, 217–19, 237–38; inequality and, 165; instability of, 12; international law and, 31, 35–38, 92–93, 169, 175; liti-

gation and, 175–79. See also sexual and reproductive health and rights Río+20 Conference (2012), 163. See also United Nations Ríos, Mario, 113 Roberts, Elizabeth, 118 Rodríguez Franco, Diana, 125 Rodríguez Garavito, Cesar, 125 Roe v. Wade (1973), 42–43, 51 Roosevelt, Eleanor, 30 Roosevelt, Franklin D. (FDR), 54 Rosenberg, Tina, 23 Roser, Max, 14–15 Rosga, AnnJannette, 123 Rossi, Julieta, 180 Rousseau, Jean Jacques, 38 Rousseff, Dilma, 163, 185 Ruger, Jennifer Prah, 31 Ruggie, John, 62 Ruiz, Samuel, 113 Rule of Law, 90, 142, 147, 191, 193–95, 224, 238   Sabel, Charles, 181 Sachs, Albie, 239 “Safe motherhood,” 122 Sahayog (India), 174 Salinas de Gortari, Carlos, 80–81, 97–98, 102, 111. See also Mexico Salk, Jonas, 64 Sandoval, Hernán, 219, 238–39 SAPs. See structural adjustment programs SARS: CoV-1, 146; CoV-2, xix, 46, 128, 191, 227; IHR and, 205 self-determination, 31, 33, 62, 132 Sen, Amartya, 1, 15–16, 59–60, 85, 149 Sen, Gita, 143 Sendero Luminoso (Shining Path), 108. See also Peru sexual orientation and gender identity (SOGI), 149–50, 193 sexual and reproductive health and rights (SRHR): Fourth World Conference

Index 293

on Women in Beijing and, 86; HIV/ AIDS and, 67; human rights and, 6, 29, 148, 167; international law and, 150–51; Peruvian health system and, 108, 113, 126; RMNCH and, 168–69 Shared Prosperity indicator, 165 Shen, Kyle, 92 Sigal, Martín, 180 Simon, William, 181 Sistema Único de Saúde (Unified Health System, SUS), 170, 176. See also Brazil SOBI. See sexual orientation and gender identity social determinants of health; ESC rights and, 4; international arbitration and, 99; MDGs and, 142, 144, 167; race and, 16; right to health and, 35, 179, 195; WHO Commission on, 164–65 social rights and social contracts: constitutional reform and, 81, 225, 239; CP rights and, 37; at international level, 91–94; at national level, 88–91; overview, 87–88; social protection and, 55; state responsibility and, 94–96; taxation and, 37, 199, 223 Sontag, Susan, 52, 66, 73, 188 Soros, George, 144 Soskice, David, 62 South Africa: constitutional reforms, 89–91; COVID-19 pandemic and, 130; ESC rights and, 92; global economic governance vs. national politics, 135–37, 156–57; global health justice and, 154; HIV/AIDS epidemic and, 131–33, 138–41, 161, 226, 231; HRBAs and, 172, 175; inequality and, 166, 233; right to health and, 154, 160; Treatment Action Campaign (TAC), 133, 137–40, 157, 161, 179, 183; TRIPS and, 100, 141, 204. See also Africa, sub-Saharan; African National Congress Special Procedures, development of, 151 Special Rapporteur on the Right to Health, 148, 150–51, 167

Special Rapporteur on Violence against Women, 84 Spinaci, Sergio, 135 SRHR. See sexual and reproductive health and rights stagflation, 55 Statutory Framework Law on Health: United Nations and, 148, 150–54, 167; women’s health and, 5–6. See also Columbia Steinem, Gloria, 72 sterilization: BTLs and, 112; CEDAW Committee findings on, 152, 161, 170; human rights advocacy regarding, 112–16; of indigenous women, 7, 108; Mamérita Mestanza case and, 124; numerical targets for, 118–19; public discourse around, 125–27; reproductive rights and, 121, 225–26; viewed as “crimes against humanity,” 122. See also Peru Stiglitz, Joseph, 58, 63, 165 Structural Adjustment Programs (SAPs), 56–57, 60–61, 66, 69, 75, 78, 98 structural dependency, 32, 209 Subcomandante Marcos, 77, 80. See also Mexico Sunstein, Cass, 30 Supa, Hilaria, 115 supply chains, 17, 162, 211, 223 SUS. See Sistema Único de Saúde Sustainable Development Goals (SDGs), xii, 163, 165, 191, 199–203, 209 Symbolic Tribunal on Maternal Mortality and Obstetric Violence (Mexico), 101–3, 158 Syrett, Keith, 182   TAC. See Treatment Action Campaign Tamayo, Giulia, 104, 114–15, 126 Tanzania, 17–19, 73, 88 tax evasion, 210, 223 TBAs. See traditional birth attendants Tehranifar, Parisa, 16

294 Index

Thatcher, Margaret, 55 Theidon, Kimberly, 119 Tiahrt Amendment (US, 1998), 124 Tipp, Tipps, 19 TMBs. See treaty-monitoring bodies TNCs. See transnational corporations Tobin, John, 31, 153 Toledo, Alejandro, 122 Trade-Related Aspects of Intellectual Property (TRIPS), 81, 99–100, 136, 140–41, 155, 157, 204. See also intellectual property traditional birth attendants (TBAs), 102 transfer pricing, 210 transformative constitutionalism, 88–91 transnational corporations (TNCs), 191, 204–6, 209–11, 215, 228, 232 Treatment Action Campaign (TAC, South Africa), 133, 137–40, 157, 161, 179, 183 TRIPS. See Trade-Related Aspects of Intellectual Property Trump, Donald J., 2, 20, 186, 192–93 Truth and Reconciliation Commission (Peru), 116, 122 Tshabalala-Msimang, Manto, 138 tuberculosis, 18, 142, 146–47, 206 Túpac Amaru. See Movimiento Revolucionario Túpac Amaru tutelas, 91, 181–82   Ubuntu, 28 Uganda, 19, 150, 174–76 UN Committee on Economic, Social and Cultural Rights General Comment 3, 87, 153. See also United Nations UN Committee on Economic, Social and Cultural Rights General Comment 14, 152–54, 172, 199, 208. See also United Nations UN Committee on Economic, Social and Cultural Rights General Comment 22, 154. See also United Nations UN Technical Guidance, 168–72, 174. See also United Nations

UN treaty-monitoring bodies (TMBs), 151–52, 159, 194. See also CEDAW Committee; United Nations UNICEF: Adjustment with a Human Face, 61; “child survival revolution” and, 57, 71. See also Grant, James; United Nations United Nations (UN): Committee on ESC Rights, 81, 87–88, 154, 172, 207, 211; Convention against Torture (CAT), 95; Convention on the Elimination of Racial Discrimination (CERD), 152, 211; Convention on the Rights of Persons with Disabilities (CRPD), 148–49; Convention on the Rights of the Child (CRC), 71–72; ESC and CP rights, 82–85; global civil society and, 82; Human Rights Committee (CCPR), 211;Human Rights Council, 151, 168, 174; International Covenant on Civil and Political Rights (ICCPR), 88; International Covenant on ESC Rights, 34–37, 92, 152, 202; Joint UN Programme on HIV/AIDS (UNAIDS), 142, 149; Office of the High Commissioner for Human Rights, 84, 168, 174; Population Fund (UNFPA), 41; Special Procedures, 151, 175; special rapporteur to examine foreign assistance to Pinochet, 33; World Intellectual Property Organization (WIPO), 100; See also UNICEF universal health coverage (UHC), 191, 202, 228 Uprimny, Rodrigo, 183 Uruguay Round, 62, 64. See also General Agreement on Tariffs and Trade US Agency for International Development (USAID), 108, 112, 14, 124   vaccines: access to, 7, 14, 18, 157; democratization of knowledge and, 234; development of, 13, 32; Gates Foundation

Index 295

and, 204; global cooperation and, 207–8; hesitancy toward, 128; human rights and, 32, 198; neocolonialism and, 3; orphan vaccines, 178; pharmaceutical companies and, 64, 178, 211; polio, 64; precaution and, 206; public health and, 69; race and, 25; right to health and, 64, 94; TRIPS waiver and, 100, 141; WTO and, 100. See also COVID-19 pandemic Valongueiro, Sandra, 159 Vaso de leche (Cup of Milk) committees, 129 Velasco, Germán Larrea Mota, 102 Velasco, Juan, 110 vernacularization of international human rights, 31, 91–92, 94, 172, 226. See also Merry, Sally Engle Vienna Conference, 84, 87 Vilches, Vinicio Poblete, 219. See also Poblete Vilches v. Chile violence: against LGBTQ+ community, 66, 149; colonialism and, 212; domestic violence, 27, 38, 40, 142, 224; drugrelated, 102–3; gun violence, 184; human rights and, 84–86, 95; obstetric violence, 101–2, 158, 173; racially motivated, 2; sexual, 38, 104; structural violence, 31, 50, 79, 115, 127, 191, 232, 235. See also domestic violence; violence against women violence against women: IACHR and, 114–16; Mamérita Mestanza case and, 114, 125; SRHR and, 148; struggles for legal protection from, 43–46, 186; as violation of human rights, 84–86. See also Committee on the Elimination of Discrimination Against Women; domestic violence; violence   Walsh, Rodolfo, 22 Wang, Daniel, 177 War on Drugs, 55, 189 Washington Consensus, 56, 60–62

WE:ARE. See Women’s Empowerment and Recovery Educators welfare programs: constitutional reforms and, 89; decreased support for, 53–54; economic growth and, 58; GATT and, 62, 99 Welfare to Work Act: The Personal Responsibility and Work Opportunity Reconciliation Act (1996, US), 54 WEP. See Women’s Employment Project West, Robin, 42 Whitehall Study, 63 Williams, Patricia, 51 Women’s Employment Project (WEP), 53–54. See also welfare programs Women’s Empowerment and Recovery Educators (WE:ARE), 46 women’s movements, 26, 39, 41–43, 85–86, 115–16, 129, 143 women’s rights: COVID pandemic and, 44–48; evolution in international law and practice, 39–41; public vs. private, 38–39; reproductive rights, 41–44 World Bank, 27, 49, 60–61, 97, 109–10, 118, 121, 131, 134–35, 137–38, 143, 165, 185, 226 World Conference on Education for All (Thailand), 82 World Conference on Human Rights (Vienna, 1993), 32, 82 World Development Report (World Bank), 60 World Food Summit (Rome), 82 World Health Assembly (WHA), 205 World Health Organization (WHO): ; on caesarian surgeries, 158; Commission on Social Determinants of Health, 164; Constitution, 63; on debt, 135; definition of health, 64; Gates Foundation and, 144; global health governance and, 191, 203–4, 209; on globalization, 130; glyphosate and, 189; health financing and, 199–200; HIV/AIDS and, 142; HRBAs and, 172; IHR and, 146,

296 Index

World Health Organization (continued) 206; right to health and, 35, 63; SARS virus and, xix; on social justice, 158; UNICEF and, 71. See also Declaration of Alma-Ata World Intellectual Property Organization (WIPO), 100, 149 World Trade Organization (WTO): COVID-19 pandemic and, 100; creation of, 62; disability rights and, 149; globalization and, 81; HIV/AIDS epidemic and, 137–41; “tear-gas ministerial meeting” and, 135; TRIPS and, 81, 99–100, 204, 225

World War II, 13, 26–27, 29, 64, 134, 201, 206, 231, 240   xenophobia, populism and, 193   Yellow Vest movement (France), 192 Yogyakarta Principles, 149–50   Zapatista Army for National Liberation (EZLN), 80–81, 83, 96, 99, 102, 113, 117, 233. See also Mexico Zika, 167 Zuma, Jacob, 156, 166

Stanford Studies in Human Rights Mark Goodale, editor Editorial Board Alison Brysk

Virginia Mantouvalou

Gráinne de Búrca

Ronald Niezen

Louise Chappell

Laurence Ralph

Rosemary Coombe

Sridhar Venkatapuram

Amal Hassan Fadlalla

Richard A. Wilson

Audrey Macklin

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The Politics of Love in Myanmar: LGBT Mobilization and Human Rights as a Way of Life Lynette J. Chua 2018 Branding Humanity: Competing Narratives of Rights, Violence, and Global Citizenship Amal Hassan Fadlalla 2018 Remote Freedoms: Politics, Personhood and Human Rights in Aboriginal Central Australia Sarah E. Holcombe 2018 Letters to the Contrary: A Curated History of the UNESCO Human Rights Survey Edited and Introduced by Mark Goodale 2018 Just Violence: Torture and Human Rights in the Eyes of the Police Rachel Wahl 2017 Bodies of Truth: Law, Memory, and Emancipation in Post-Apartheid South Africa Rita Kesselring 2016 Rights After Wrongs: Local Knowledge and Human Rights in Zimbabwe Shannon Morreira 2016 If God Were a Human Rights Activist Boaventura de Sousa Santos 2015 Digging for the Disappeared: Forensic Science after Atrocity Adam Rosenblatt 2015 For a full list of series titles, please visit the Stanford University Press website.