Hope Amidst Despair : HIV/AIDS-Affected Children in Sub-Saharan Africa [1 ed.] 9781849646970, 9780745331546

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Hope Amidst Despair

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Hope Amidst Despair HIV/AIDS-Affected Children in Sub-Saharan Africa

Susanna W. Grannis

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First published 2011 by Pluto Press 345 Archway Road, London N6 5AA www.plutobooks.com Distributed in the United States of America exclusively by Palgrave Macmillan, a division of St. Martin’s Press LLC, 175 Fifth Avenue, New York, NY 10010 Copyright © Susanna W. Grannis 2011 The right of Susanna W. Grannis to be identified as the author of this work has been asserted by her in accordance with the Copyright, Designs and Patents Act 1988. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library ISBN ISBN

978 0 7453 3154 6 Hardback 978 0 7453 3153 9 Paperback

Library of Congress Cataloging in Publication Data applied for

This book is printed on paper suitable for recycling and made from fully managed and sustained forest sources. Logging, pulping and manufacturing processes are expected to conform to the environmental standards of the country of origin. 10 9 8 7 6 5 4 3 2 1 Designed and produced for Pluto Press by Chase Publishing Services Ltd Typeset from disk by Stanford DTP Services, Northampton, England Simultaneously printed digitally by CPI Antony Rowe, Chippenham, UK and Edwards Bros in the United States of America

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Contents

Tables and Figuresvi Acknowledgementsvii Acronyms and Abbreviationsix Introduction1   1 Framing the Issues 6   2 One Continent, Five Countries, and Five Different Epidemics21   3 Girls and Women: Special Vulnerabilities 37   4 Life Sustainer: ARV Treatment 51   5 Prevention: The Long-term Goal 67   6 Poverty and Children’s Wellbeing 82   7 Education: A Basic Human Right 96   8 I Feel It in My Heart 110   9 Supporting Children 125 10 A Matter of Money and Intention 143 11 Hope and/or Despair 157 Notes163 Index180

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Tables and Figures

TABLES 2.1 4.1 4.2 5.1

The five countries 34 Vertical transmission: the five focus countries, per cent 56 People needing and receiving ARV treatment, per cent 61 Knowledge of HIV/AIDS among 15–24-year-olds, per cent 69 6.1 Under-five mortality rate, number of under age five deaths per 1000 live births 87 7.1 Per pupil expenditure at primary and secondary levels in US$, 2007 107 9.1 Supporting children 126 FIGURES 2.1 4.1 8.1 9.1

Marianthe shows the virus leaving her body Jeanne’s picture Patrick’s picture A gathering

22 52 115 140

vi

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Acknowledgements

Far more than a process of gathering information and writing, this book happened because I have had the privilege of working with people in Africa and North America who have made a huge difference in many lives, including my own. There are so many – this is a poor attempt to acknowledge and thank. My heartfelt thanks go first to the children of the CHABHA projects, particularly those I have had the pleasure to know and talk with. Though living in difficult circumstances, so many display enormous bravery, honesty, welcome, and willingness to share. My thanks for their inspiration and to their leaders who have taught me so much about caring for others, the importance of listening, and determination. The staff of the CHABHA offices are few but accomplish so much – my thanks to them during the years we worked together: Martha Black, Cynthia Clough, Richard Kabalisa, David Loewenguth, Justine Musabyeyesu, Richard Mutabazi, Eric Rwabuhihi, Micheline Umulisa, and Alice Uwera. People working with children and project leaders who have given of their time as guides to schools and projects, my thanks: Lynne Coull, Ann Dean, Rachel Mash, and others. At the very beginning of our work for CHABHA, in 2003, we were introduced to Rwanda by Glenn Hawkes. Our great thanks to him and to project leaders we met during that first visit. The US-based CHABHA Board of Directors, past and present, has been helpful in ways that might surprise them: Carol Beatty, Jane Davis, Beth DeAngelis, Judith Flower, Joe Grannis, Terry and Billy Holliday, Eileen Kawola, Ken and Donna Moulton, Stephen Owen, Aida and Walter Pluss, Eric Rwabuhihi, Adelit Rukomangana, Jim and Beverly Scott, Nancy Segal, Jean Smith, Hilary Ware, and Belinda Whipple Worth. I learned a lot by hearing and seeing the projects through the eyes and talk of folks who traveled to the projects in Burundi, Rwanda, and South Africa: Thomas Brown, Jean Carr, Helen Crawshaw, Jane Davis, Dolly Glennon, Joe Grannis, Joel Hill, Shirley Hodgdon, Eileen Kawola, Lori Palmer, Joan Pinella, Hilary Ware, Alison Whitney, and Belinda Whipple Worth. Volunteers for a month or more in Rwanda who have so well served the children of the CHABHA projects well include Naomi Shafer, who led a number vii

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of the interviews included here, interviews ably translated by Eric Rwabuhihi and Justin Murabyeyesu. Naomi’s sister, Miriam Shafer, has been a long-term volunteer twice. Her photographs are truly inspirational, and include the photograph on the cover; Mim also taught the girls about making reusable feminine hygiene. Ira Curtis worked with young men and their construction teacher to build furniture for Iwacu. Mac Jackson devised a special English book for teaching Project Independence students preparing to be waiters. David Loewenguth volunteered for nine months and has become CHABHA’s Executive Director! All these visitors have contributed to CHABHA and the children in many ways; their insights have been really helpful. My thanks to them. There are some special people who read part or all of the manuscript and who made helpful suggestions. While errors and omissions are mine, the book is much improved by the comments of Carol Beninati, Cynthia Clough, Helen Cornman, Jim Crosson, Nancy Dyke, Joe Grannis, Aida Pluss, and William T. Whitney, Jr. My great thanks to them. And thanks as well to the people at Pluto Press, who have been very encouraging, responsive, and generally helpful. A special thanks to children and grandchildren, who remind me of home and hearth. Thanks, too, to neighbors who took over farm chores so I could travel. Finally, my husband Joe deserves my eternal thanks for his support, interest, criticisms, caring thoughtfulness, and devotion to CHABHA and its cause.

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Acronyms and Abbreviations

ABC AIDS AJESOV

Abstain, Be faithful, use a Condom Acquired immune deficiency syndrome Association des Jeunes Volontaires pour le Soutien aux Orphelins du VIH/SIDA (Association of Young Volunteers for the Support of Orphans of HIV/AIDS) ARV Antiretroviral ART Antiretroviral treatment CHABHA Children Affected by HIV/AIDS CD4 Cluster of differentiation 4; type of lymphocyte (white blood cell) CYCW Children and Youth Care Workers DFID Department for International Development - UK EFA Education for All FTI Fast Track Initiative G8 Group of 8 nations (Canada, France, Germany, Italy, Japan, Russia, UK, US) HIV Human immunodeficiency MAP Multi-country HIV/AIDS program (World Bank) MDG Millennium Development Goals NGO Non-governmental organization PEPFAR President’s Emergency Plan for AIDS Relief MTCT Mother-to-child transmission PIH Partners in Health RFP Rwandan Patriotic Front SANAC South African National AIDS Council U5CM Under-five Child Mortality UNAIDS United Nations AIDS UNESCO United Nations Educational, Scientific, and Cultural Organization UNICEF United Nations Children’s Fund USAID US overseas aid agency

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Attending to the well-being of children in Africa is a vital, pressing concern, and a group of African scholars states it best: There are many reasons why Africa should invest heavily in children. First and foremost, because it is the right thing to do. Because it pays. Because it is the only way Africa can catch up with the rest of the world. Because investment in children and youth contributes to democratic governance and social stability Finally, because without children, society will die. So it is about rights; about society; about economics; about good governance; and about our future place in the world. ACPF, Budgeting for Children in Africa: Rhetoric, Reality and the Scorecard, Addis Ababa: The African Child Policy Forum, 2011, p. 1.

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Introduction

For some years, I have been visiting and working with grassroots organizations in sub-Saharan Africa that support children orphaned and affected by HIV/AIDS. Through the children I’ve gotten to know, those I have interviewed, leaders of community-based organizations the children belong to, the tiny staff of a non-profit organization that supports these organizations, and lots of reading, I have learned about the despair that comes to children when their parents die and the hopes that emerge with appropriate care. HIV/AIDS is a terrible scourge. Because of HIV/AIDS and uneven economic and political development, much of sub-Saharan Africa seems stuck in continued, widespread poverty. The region is the epicenter of the continuing pandemic. Although the prevalence of the disease is somewhat smaller in 2011 than it was in 2005, still, people are dying on a large scale. Many are young, and as parents die, there are more orphans, and at the time of writing, in 2011, there are millions of children in sub-Saharan Africa who have lost one or both parents to AIDS. Most of these children lack the basics of food, healthcare, and education. Orphans to AIDS have the additional burden of grief. As they say, “It is a really, really bad thing to lose your parents.” They suffer further from the stigma attached to them as “AIDS orphans.” The extreme poverty of many affected children in sub-Saharan Africa is not a high priority in most country and international responses to HIV/AIDS, but it should be. When children do not have enough food, do not have enough schooling to make a difference, may be in poor health, are scared and lonely, and have little hope for a positive future, they are neglected. In large numbers, neglected children develop into dissatisfied, unproductive, unhealthy, and, possibly, angry young adults. In our global world, the problems of youth and children in sub-Saharan Africa growing up in difficult circumstances should concern us all. Safety and security is one reason. These youth can be the potential for greater productivity and development if educated. At present, though, millions of children are neglected by the outside world. Who is to blame for this neglect? Although no one segment of society, either 1

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in sub-Saharan African countries or in donor countries, is to be blamed, many bear responsibility. Government policy statements, foundation mission statements, and international reports might give readers the impression that large organizations are deeply invested in caring for children. Some are. There is, however, a huge gap between the written word and action. Two things are needed to bridge this gap: intention and money. Intention to help grows as people become aware of effective methods of helping children. Such methods are learned in the field, especially from community leaders. As neighbors of impoverished and affected children who are otherwise invisible to the outside world, neighbors need financial support so they can provide children with food and healthcare and to ensure that they go to school. This is where governments and international donors can enter and make a difference. As donors create partnerships with grassroots leaders and provide money, the local leaders draw on their cultural knowledge and experiences to provide care and sustain children emotionally. With such partnerships providing relatively small amounts of money to community service providers, positive change happens, and happens rapidly. Transformations happen. That is the perspective of this book – where and how positive change can occur. To make significant change requires full knowledge of the children and their contexts, their needs, their feelings, and their culture. Western aid must combine with local wisdom. Usually that means the providers are local nationals, preferably people known to the children. These local leaders can help invisible and excluded children become actors in the process of transformation. Children receive support for a range of their needs, but rather than increasing dependence, assistance must recognize and build on strong coping skills many of the children have developed. Heads of child households, children eager to go to school, and older children walking many miles for vocational training represent the positive face of the picture of children affected by HIV/AIDS. They need support to strengthen their ability to contend with difficult circumstances. It is possible to make a difference. I have participated in a program that has made a difference to thousands of children. Some years ago I founded and led, until 2010, a non-profit or NGO (nongovernmental organization), with my husband, friends, and others. The organization is CHABHA, Children Affected by HIV/AIDS. CHABHA provided some support to projects in South Africa and Namibia and since 2007 has focused on programs in Rwanda and

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introduction  3

Burundi. Through its office in Rwanda, CHABHA (home office in the USA) provides funds and brings capacity-building support to associations of children affected by HIV/AIDS. These associations are led by young adults, a number of whom were orphaned themselves by genocide and AIDS, who want to help children in their neighborhoods. CHABHA also has initiated a vocational training program in Rwanda for youth from the associations. These experiences and visits to other multifaceted programs to support children affected by HIV/AIDS have shown effective ways to make children’s situations better. It has been highly gratifying to learn about and be able to act to improve children’s lives, but I am sobered by the knowledge that there are millions of children living in very poor circumstances who are not being helped. It has been a challenge to capture in writing the essence of a disease that impacts on children in many different ways. Because data about the disease and responses to it are constantly changing, this project has been a little bit like trying to stay upright on a shifting floor. I have been following books, research articles, and reports on HIV/AIDS and children in sub-Saharan Africa for several years, have observed trends over time, and I draw on these sources. I have included the voices of children and youth to validate and make real the information from observation and reading. The result is a picture of affected children and their situations in early 2011. The book contains observations that began in 1996 and continued through 2009. While some ‘voices’ of children are quotes from other work, most are from interviews we conducted in visits over the years in Rwanda, from 2005 until 2009. The children we interviewed were comfortable and safe. There were always two children in the room, a translator, either Eric Rwabuhihi or Justine Musabyeyezu, both CHABHA staff at the time, and the interviewer. The children knew us all. While I led the interviews for many, Naomi Shafer, a CHABHA volunteer, led a number in spring 2006. She was a teenager at the time, like several of the people she interviewed, and hers were very helpful interviews. In spring 2008, I asked some children to draw pictures of a time of concern they talked about in their interviews and have included a few in the book. The first chapter describes who these children are – those affected by HIV/AIDS – their rights, and key concepts that frame the book. From the start, I try to make it clear that HIV/AIDS is far more than a matter of health. Chapter 2 establishes some of the data surrounding the disease and introduces five focus countries that

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represent different responses to HIV/AIDS. These differences are caused by internal choices and realities as well as by the level of external support. In some southern African countries, such as two of the focus countries, the infection rate of young women is several times that of young men. There are significant gender differences, and Chapter 3 explores the extent of the gender problems and considers the sources. The sexual behaviors that lead to this situation are embedded in cultural patterns that resist quick fixes. Many women become infected at young ages, and, unfortunately, infected birthing mothers often transmit the disease to their infants. Treatment to increase infant safety and general treatment trends, including treatment of older children, are addressed in Chapter 4. Although there have been impressive increases in the number of people treated, more people are becoming HIV+ all the time. Chapter 5 is about prevention and the reasons why prevention has not fulfilled the hopes of some years back; it also includes suggestions for improvement. Children who are poor, like so many HIV/AIDS-affected children, experience clusters of problems. Chapter 6 is about how poverty impacts and is impacted by HIV/AIDS. Poverty and its destructive corollaries – malnutrition, dirty water and inadequate sanitation, disease, and child death – are sadly common in sub-Saharan Africa. Education, the topic of Chapter 7, is key to children’s transformation. Universal access at the primary level remains elusive, and pre-primary and secondary education participation levels are low. If they are poor and under-educated, young people’s transitions to adulthood are hazardous. The difficulties go beyond material matters: young adults, teens, and children experience significant personal difficulties. Unfortunately, children’s psychosocial needs are largely ignored, even though some relatively simple, inexpensive programmatic processes can ease the stigma, loneliness, and fear children live with. Chapter 8 is concerned with children’s psychosocial lives. Multifaceted programs that deal with children make up the content of Chapter 9. Two are highlighted: Isibindi in South Africa and CHABHA, as I have known it up to 2011. If more children are to be served, more support systems and projects are needed, and these two programs are models for new programming. The problem of scaling up good programs and/or developing new ones is linked with the ‘elephant in the room’ – funding. New programs reaching many children require an infusion of money, and much of it must come to sub-Saharan African countries through development aid.

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The flow of foreign aid to and within developing countries is fraught with problems that impact negatively on community efforts to help children in need. Chapter 10 discusses aid, needed process changes, intention, and methods for involvement. Chapter 11 brings the discussion to a close. West Townshend, VT, USA March 21, 2011

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1 Framing the Issues

In Africa, we have a concept known as ubuntu, based on the recognition that we are only people because of other people. We are all human, and the HIV/AIDS epidemic affects us all in the end. If we discard the people who are dying from AIDS, then we can no longer call ourselves people. Nelson Mandela1

The experience of two girls illustrates what Mandela means by ubuntu.

About 300 young people were participating in circle games, singing and running, chasing one another, laughing. They had gathered with others from an association of children affected by HIV/AIDS in Kigali, Rwanda, for a two-day workshop on life skills. As soon as the games ended, they would be in a class learning about physical development, HIV prevention, and family and community. I saw several children I knew, including two sisters. The sisters were transformed from the last time I had seen them, wonderfully transformed. There they were with arms around other girls, their friends. After a few moments of circle games, these girls and their friends formed a small line and sang a song, a song about AIDS. It was a plea for a cessation of the stigma against children like themselves, orphans and people living with HIV. More and more of the hundreds of children gathered around to listen. As they sang, the girls seemed confident and strong. When they finished, everyone clapped with generous, knowing appreciation.

A year earlier, we had seen these two sisters at their home under very different circumstances. The leaders of an association of children affected by HIV/AIDS (human immunodeficiency virus/ acquired immune deficiency syndrome) had discovered them and encouraged their participation in association activities such as the workshop described above. Genevieve (age 12) and Elise (age 13) (not their names; throughout, children’s names and identifying 6

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characteristics have been changed to protect their privacy) lived in a one-room mud and stick, wattle house, about 10 to 12 feet, on a hump of earth in a sea of other small wattle houses where they had lived alone for the two years since their mother had died of AIDS. The house held very few objects. There was no sign of food – only an empty cooker. Neither girl was in school because they didn’t have the equivalent of US$25 for school “contributions,” – uniforms, and materials such as pencil and notebook. Not only did the girls lack basics, there was something else – they were very shy, passive, and withdrawn. The leaders of the association drew them out a bit and learned that their neighbors shunned them for being AIDS-infected – they weren’t. As a result, though Genevieve’s and Elise’s house was close to those of many other families, they were essentially alone. Day after day, with no school, little or no interaction with neighbors, and no adults to look in on them, these girls had nothing to do. They had no links to other people, no place where they belonged other than with each other. Ostracized and alone, they were severely diminished. So you can imagine that seeing them singing with their friends from the association a year later was really wonderful. The girls felt they belonged. The association had been able to send them back to school and obtain health cards as well. Thinking in ubuntu terms we could say they now existed because they now had human links; they were part of a collective. As many children have said about being with others in their association, “It takes away the loneliness.” The ubuntu concept as Mandela describes it is tantalizingly simple: we are people because of other people linked to us. There are differences in what that means, though. Most of us in the West have an individualistic frame for understanding our place in the world so that if we are asked to tell who we are, our references are to our roles: I am a teacher, a mother, a grandmother, a wife, etc. Within the African context, the collectivist point of view would change how I reference myself. Following the ubuntu concept I would say, “I am the mother of Will and Melanie and the grandmother of Oliver, Emma, Lotta, and Leo. I am Joe’s wife.” Children of sub-Saharan Africa experience their world from a collectivist worldview, and that worldview shapes how they react. We need to pay heed to children’s worldview so that we may understand and respond to their situations. This is particularly the case when we contemplate the context experienced by orphans and other children affected by HIV/AIDS.

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As with Genevieve and Elise when we first learned about them, HIV/AIDS has had a huge, negative impact on orphaned children across sub-Saharan Africa. With nearly 15 million children orphaned because of AIDS, and 22.5 million living with HIV, sub-Saharan Africa continues to be the epicenter of the pandemic. Only 10 per cent of the world’s population live in sub-Saharan Africa, but 67 per cent of all the people living with the disease live there! Girls and women in the region are particularly vulnerable; they make up nearly 80 per cent of all the women in the world who live with HIV (ages 15 to 49).2 HIV/AIDS has affected nearly all aspects of life in the region. The International Red Cross/Red Crescent Report of 2008 had this to say about the impact of the disease: Reflecting on the lives of most people living in sub-Saharan Africa raises more alarm than hope. In the hardest hit nations, hard won gains in living standards have stagnated or even fallen. The virus is directly responsible for restraining and reducing human and resource capacities across societies because HIV infections and AIDS deaths are common among workers of all qualifications and expertise, and in all industries. Coupled with the high costs of caring for people living with HIV, those capacity constraints lead to withered health and education systems, declining food security, skilled labour shortages and an increasingly ramshackled infrastructure.3 “Ramshackled infrastructure” means deteriorating roads, inadequate water and sanitation, and, as the Red Cross stated, poor health and overcrowded and underfunded schools. The disease has reduced life expectancy, deepened poverty among vulnerable households and communities, and undermined government systems. Millions of children live in jeopardy. Until recent years there were no medications to prolong life for people living with HIV except for the rich, and death was inevitable. Even now, more than half of those infected in sub-Saharan Africa who need them do not have access to these medications. Sick parents who are unable to work withdraw family capital for palliative care and for basic essentials, and family capital is depleted. After their parents die, there is not much for the children left behind. Destitute and alone with siblings, children suffer tremendously. One girl, Beatrice, a 16-year-old orphaned head of her family, herself and two little brothers, put her experience into words:

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My life has been completely affected because I lost my parents. And I couldn’t do what I was doing before they died. My mother died a long time ago, maybe more than ten years and my dad died three years ago. I was about six when my mother died. My biggest need is to be able to continue my studies as well as getting something to eat. I can’t really tell how we manage to survive because it’s complicated. None of us is able to dig or farm but sometimes we have neighbors who provide food. It’s something I cannot describe. Many of the over 14.8 million children (ages 0 to 17) in sub-Saharan Africa have lost one or both parents to AIDS, and that is up from twelve million in 2007. Too many children are also HIV infected, 2.3 million.4 Other children, neither orphaned nor infected, are also affected by HIV/AIDS. These are children whose families have become poorer because they have taken in orphans. These are also children who don’t get enough food because of cost and because there are fewer farmers to produce food. Affected children may miss out in school because their teachers are sick a lot of the time. If severely at risk with multiple challenges, affected children face bleak futures if not supported. Traditionally, in Africa it wasn’t like this; families and even close friends would take in orphaned and vulnerable children and provide for them. With burgeoning numbers of orphaned children, however, families cannot just add more and more children, so the traditional ways of caring for children are weakened. In an ideal world, government services would step in, but things are far from ideal in sub-Saharan Africa. With limited budgets, most countries have few, or no, safety nets to replace the traditional ways. Poverty is the source of other risk factors. HIV/AIDS has worsened children’s wellbeing – their physical health, their housing, their safety and security, their education, and their psychological health. It starts with physical development. The extent of family poverty determines children’s access to nutritious food and wellbeing. For millions of children food security is limited, and they become malnourished and stunted, including many of those affected by HIV/ AIDS. Depending on their location in terms of class and of country, children may or may not receive healthcare, have access to school, or experience love and security. The situation vis-à-vis affected children is grim, but it is not totally grim. If they are provided with some basics, many children exhibit amazing strengths in spite of their circumstances. Young

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children turn to older siblings and other relatives. Older children show responsibility toward their younger siblings and work hard to keep their families together. They want to make something of themselves. Separating the needs they feel they can manage on their own from those they cannot, older children are clear. “I want to go back to school,” they say – knowing they need to find a way to come up with the money. They respond well to help and advice. They appreciate their neighbors when they admire them for their bravery. They turn to other young people in similar situations and share concerns and successes. When children such as these receive help that promotes their strengths, positive outcomes emerge. The potential for positive outcomes for children is higher than one might suppose as long as there is some help, and the available help meets their needs and builds on their strengths. Many children exhibit resilience and seem to overcome significant challenges with even a small amount of help. After all, childhood is the equivalent of dependency. When considering how children can be best helped, some factors to be considered include children’s age, for the younger they were when orphaned, the less time with parents and the greater the likelihood that they are at risk for malnutrition and poor health. Gender is an important factor, too. Girls are especially vulnerable to sexual exploitation in their communities and at school. The ability to get to school and stay there is critical for their future. The transition to adulthood is challenging for youth who have little education and no marketable skills. They are vulnerable to HIV and other sexually transmitted infections (STIs). Psychological issues may emerge even before parents die as children experience fear, leave school, and take on more obligations. The real question is, are children receiving help? The answer is both yes and no. A growing percentage of children at risk do receive help in one or more of the risk factors. It is still not nearly enough. Of those who reach at-risk children, most are local community people who see children regularly in their neighborhoods and know what they need.5 Large and small NGOs (non-governmental organizations or non-profits) also try to ameliorate the dreadful impact of the disease on children, but they reach only a small proportion of the children in need. In fact, the level of support is shockingly low: in 19 countries with infection rates of 5 per cent or higher (among adults), the median level of external support for orphans is about 12 per cent. There are variations from country to country – for example, from a terrible low of 1 per cent in Sierra Leone to the highest, 41 per cent, in Swaziland.6 In the words of UNICEF, “millions of

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children make their way through life impoverished, abandoned, uneducated, malnourished, discriminated against, neglected and vulnerable.”7 This appalling picture would change if more people knew what was happening, spoke up, and made the wellbeing of children a major goal. Children are a particularly marginalized group. They suffer special neglect because they have no voice of their own. … Given that 12 million children under 18 years of age have lost one or both parents to AIDS, this is an astonishingly forgotten group. … It is also a sad and unacceptable fact that children living with HIV are less likely to receive antiretroviral drugs than their adult counterparts, reflecting yet again the low value that society – and even the AIDS community – places on children.8 One of the reasons why so little attention, relatively speaking, has been addressed to orphans, infected children, children caring for sick adults, and children working as household help is that they are invisible. Just by driving around the countryside in much of sub-Saharan African countries or going to markets, one can’t tell who needs intervention. That’s where neighbors come in. So many children running about are essentially excluded from basic services, except services these neighbors know they need and can provide.

Jeannette, walking along the road at the end of the day, looks like the other children on their way home from school, but her situation is very different from what an outsider might imagine. She didn’t go to school that day; in fact, because she lacks the money for the school “contribution” and for paper and pencils, she only went to school for a few days at the beginning of the year and was sent away because of non-payment. She is walking home from a visit to a friend of her now deceased parents searching for food for herself and her younger brother.

Jeannette’s neighbors are poor, too, so they cannot get much material help from them. The children need to come to the attention of private and public organizations, so that their needs become known. In recent years, mostly from 2005 onward, the plight of children has been featured in reports, among policy-makers, and with program developers. Special groups and agencies began to draw attention to affected children. It was near the end of 2005 that

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UNICEF published Unite for Children: Unite against AIDS, with “Stocktaking Reports” containing updated information each year since then. UNICEF’s State of the World’s Children, published each year, examines a particular issue affecting children and youth and includes annual data on key childhood measures. Its 2011 version focuses on adolescence and makes a strong case for attending to older children. In 2008 Save the Children UK published The Child Development Index, which ranks countries in terms of children’s health, nutrition, and education. And the African Child Policy Forum published a major report in 2008 that asks, “How Child Friendly Are African Countries?” In 2009 the Joint Learning Initiative on Children and HIV/AIDS published a final summarizing report of several years of research on the plight of HIV-affected children.9 Major books on HIV/AIDS include children; a good example is the edited book entitled HIV/AIDS in South Africa 25 Years On.10 From these reports, books, and articles, interested readers can collect data on and descriptions of the wellbeing of children by nation and region. In my view, given the relatively small numbers of children actually being helped by external supports, there ought to be more attention paid to affected children in the general HIV literature so that there might be greater impetus to change. In the earlier years of the epidemic, the problems of HIV/AIDS-affected children who were in great need was presented as a minor addition to the discussions in many of the major reports on the progress of the disease. Even recently, for example, the authoritative 2010 UNAIDS Report on the Global AIDS Epidemic included only one half-page of 160 pages of text on orphans and very little more on children who are infected. A paper by leading figures in HIV/AIDS writing on the future of the pandemic did not seriously consider the impact on children and youth.11 Similarly, in other major reports on HIV/ AIDS, orphaned children are included but often only as a small piece of the story, along with reports on the transmission of the virus by sex workers, men who have sex with men, and injecting drug users. The vulnerability of these marginalized groups is important, of course, but the sheer numbers of affected children call for much greater national and international attention. In truth, I am biased, but it makes no sense to me that the full story is not widely aired. To me children are the major part of the story about HIV/AIDS in sub-Saharan Africa – if we care about children’s futures and their impact on their communities and societies, they must be at the center of the story.

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When decision-makers and officials in affected and in donor countries learn more about children’s needs, they can press for positive change. That is why it is important to continue to put children’s situations forward. Unfortunately, however, progress is slow – and where children are concerned, slow movement is no movement. For an 8-year-old, out of school, hungry, lonely, and sick, waiting for even several months is disastrous. When no change comes for a year or more, much has been lost. Children’s physical, cognitive, or social development cannot be easily made up. No wonder, then, that many are impatient with slow action. I have been asked if people in the West, their governments and foundations, ought to step in to help with funding. Should we attend to the problems of children who are far away, far away in every sense? Are they our concern? After all, there are lots of children right outside our own doorsteps who are in trouble and need. There are several answers to these questions. For one thing, the millions of orphaned, under-educated, unhealthy, and desperate children growing up in conflict situations and in sub-Saharan Africa, often in profound poverty, affect the future of us all. Where high numbers of adults have grown up in such disadvantaged circumstances, the chances are slim that they will be able to contribute to their country’s social and economic betterment. If, for example, only a tiny percentage of young people from elite groups are educated beyond primary school, their nations will have little human capital to build upon to maintain reliable governments, good agricultural systems, and creative enterprises. Many African nations struggle with conflict. Conflict may deepen if large numbers of children affected by HIV/AIDS are not helped. Children who are left behind after their parents die, who live in the streets, who are trying to find food for younger siblings, and who take on various risky behaviors, can become a threat. Children’s desperation can turn them to actions associated with early death or harm to others. It can turn youth to crime, war, or terrorism. So another reason to do something to help children is to enable them to grow up with alternatives to a life of preying on others. Then, of course, there are moral reasons for helping. A small change in the quote from Nelson Mandela at the start of the chapter, adding the words, “the children of,” moves the question of help for vulnerable children to a moral imperative. “If we discard [the children of] people who are dying from AIDS, then we can no longer call ourselves people.” Ubuntu thinking requires that we respond. Mandela’s words point us in that direction. People who

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believe that all children, no matter the context of their birth, are due basic rights, and who learn how it can be done, can make a huge difference to millions of children. Another important question is “who.” Who should take care of children in sub-Saharan Africa? After all, shouldn’t Africans help their own children? This one I have already answered – they do. Beyond the neighbors who step in with food and other help, many families make permanent homes for orphaned children in spite of significant financial difficulty. One such family we know consisted of teenage twin girls with two younger brothers who added four small cousins to make up a child family of eight. Given the high numbers of children in need, however, African governments and religious and civic groups cannot meet the challenge without outside help, and that help can come from international groups who step in. I believe that richer individuals, groups, and governments ought to step in to help in a manner that strengthens local governments and groups, and that they draw on legal structures to frame their responses. CHILDREN’S RIGHTS What rights do at-risk HIV/AIDS-affected children in poor sub-Saharan African countries have? Are their governments obligated to help them? Although foreign aid funding is a very complex arena, there is increasing global agreement that children’s wellbeing is important. The driving force has been the UN Convention on the Rights of the Child. All nations but two have ratified this central statement of care for children, a treaty established in 1989 to rectify what was seen as a disregard for children and their wellbeing.12 National leaders recognized that children are by definition dependent, and for the duration of their childhoods, they deserve reasonable shelter, safety, nourishment, education, access to healthcare, and psychological support. When parents have died or are unable to care for their children, governments become responsible. Having agreed to the principles of the Convention, nations have developed new policies and laws and have agreed to report on progress every five years. As a result, the elimination of threatening conditions that children experience is now more than morally right; nations are legally bound to ensure just that. The Convention on the Rights of the Child is a comprehensive statement that sets important goals to ameliorate harm and neglect of children. Using the words of UNICEF, the Convention

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sets out these rights in 54 articles and two Optional Protocols. It spells out the basic human rights that children everywhere have: the right to survival; to develop to the fullest; to protection from harmful influences, abuse and exploitation; and to participate fully in family, cultural and social life. The four core principles of the Convention are non-discrimination; devotion to the best interests of the child; the right to life, survival and development; and respect for the views of the child.13 Many of the great difficulties experienced by children affected by HIV/AIDS are addressed in the Convention’s articles, guiding principles, and requirements – survival and development rights such as food, clean water, education, and the like. Protection rights are important and impose requirements that governments protect children from exploitation, and other abuses. The Convention promotes a significant change in how children are viewed. In place of the view that children are property of their guardians, the Convention portrays a view of the child as an actor in his or her own life. I have extracted a few articles from the Convention that have bearing on at-risk children impoverished and affected by HIV/AIDS that go beyond basic material issues. If parents or guardians cannot provide their children with the basics, their governments should do so: • Article 3 – All actions concerning the child shall take full account of his or her best interests. The State shall provide the child with adequate care when parents, or others charged with that responsibility, fail to do so. The Convention makes it clear that children have the right to speak up and to organize: • Article 12 – The child has the right to express his or her opinion freely and to have that opinion taken into account in any matter or procedure affecting the child. • Article 15 – Children have a right to meet with others, and to join or form associations. Children’s health is a concern: • Article 24 – The child has a right to the highest standard of health and medical care attainable.

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Education is a basic right at the primary level, and an obligation at the secondary and higher levels: • Article 28 – The child has a right to education, and the State’s duty is to ensure that primary education is free and compulsory, to encourage different forms of secondary education accessible to every child, and to make higher education available to all on the basis of capacity. School discipline shall be consistent with the child’s rights and dignity. The State shall be consistent with the child’s rights and dignity. The State shall engage in international cooperation to implement this right.14 Signatory countries are required to report to UNICEF, a requirement intended to encourage progress toward compliance. Indeed, the key question is whether nations are able to live up to their commitments to the Convention and to their own complementary laws and policies. Among many comments about progress in the two decades since ratification, there are disturbingly large gaps between the words and the reality children experience. There has been progress, as noted in the following chapters. Poor sub-Saharan African countries do not, and in truth some cannot, adhere to all 54 articles they have signed on to. But they can do more than they currently do. If the pace of compliance with the Convention does not increase, however, two decades from now someone will be writing another book lamenting the lack of progress on behalf of the invisible and excluded children of sub-Saharan Africa. In UNICEF’s 2010 State of the World’s Children report about the Convention, one country highlighted was South Africa. The Convention was ratified just a few years before the end of the apartheid era, and the new constitution developed after majority rule in 1994 featured children’s rights in line with the Convention, including the 2005 Children’s Act and Amendment. The authors of the UNICEF report note that the country has established a “strong framework” but state the serious challenges to realization, challenges that will require increased vigor. They note the positive input from children and the efforts to help children and their parents learn their rights.15 Children can help move change forward. Article 12 asserts children’s rights to say what they think. Children’s voices are emerging, at least here and there. More children have opportunities to speak from their experience, and if powerful adults would listen, perhaps their words would attract more attention. More attention might in turn hasten change. The words of children often ring true. From a 13-year-old boy in Zambia come these words:

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Since the adoption and ratification of the Convention on the Rights of the Child, much has been accomplished for children – thanks to our grandfathers and grandmothers, fathers and mothers, who hatched this noble idea of recognizing our rights. Many evils that are done to children have been highlighted by governments, the media and civil society … Many children are still facing evils that threaten their very existence. Quality education appears to only be a right for children from well-to-do families … Likewise, quality health care is a pressing concern for children … Children need actions, not just policies and plans.16 One way of capturing the voices of children is through Child Parliaments. A paper from the Child Parliament in Mozambique includes the “voices” of young parliamentarians on their work – studying the needs of orphans and vulnerable children, talking with local government officials about their findings, and raising funds to provide food. In attempting to raise awareness, they presented child rights on national and local radio.17 These Parliamentarians are proud of their work, but they had some serious concerns about how they were received. For one thing, they noted that some adults tried to prevent them from reporting negative experiences. They got the idea that some adults did not appreciate seeing youth standing up and speaking with confidence on sensitive topics. Another disappointment, and a critical one, was that the official Mozambique Parliament “didn’t really seem to listen to us.”18 Getting officials to listen to children and youth presents a challenge that might be met were there more opportunities for children and officials to speak and hear one another. In Malawi, a program called Orphan Affairs Unit brings orphans together once a week for discussion of their life issues. Youth Members of Parliament listen to them very carefully and produce a resolution if appropriate which they then take to relevant bodies and leaders. This program has spread to Uganda and Zambia.19 Other mechanisms might improve the process of bringing children’s voices to officials. In Rwanda the biannual Children’s Summits are a case in point. Each year about 500 children (under 18) attend and deliver reports. In 2006, one delegate referenced the genocide and its impact on children generally. In 2009 the focus was on violence directed at children.20 In 2006, the delegates requested a national children’s commission; President Kagame proposed such a commission in 2009.21 It is hoped that efforts such as this represent

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real intention to listen to, learn from, and inform people who are in positions to make change. More of the real experiences of children and youth need to emerge. In many parts of the world, however, it appears that youth are not waiting for adult permission to speak up. In northern Africa and the Middle East young people are in the streets demanding freedom, employment, and lower food prices. Their demands are for serious structural changes. Instant communication fuels these uprisings. Young people in sub-Saharan African countries in large numbers also have cell phones and want to be heard. CHILDREN’S CONDITIONS If the young people of sub-Saharan Africa, especially those affected by HIV/AIDS, speak to their conditions and needs, perhaps decisionmakers would heed their messages and create more new programs. Programs that support children should aim high. Providing for life essentials is a necessity, of course, but it is not sufficient. When goals are clear and aim high, youth gain knowledge, skills, and leadership, and they can speak with authority about children’s circumstances. We have already discussed a number of basic essentials missing in the lives of many affected children. There are others, addressed in the chapters to follow. Below is a list important in planning support for children. Imagining children such as Genevieve and Elise, it is possible to see how these variables and combinations of these variables would affect the kinds of help they might need. • Age. As children mature, their needs change dramatically. To build capacity, supports for children must be developmentally appropriate. They need to include leadership ability. • Gender. Girls and boys grow up into roles that can be detrimental to their long-term wellbeing. • Orphan status. Whether children are double orphans, maternal orphans, paternal orphans, or are living with one or two infected parents determines response on many levels. When fathers are present, families are less apt to be poor, for example. • Physical health, HIV status, and treatment access. Many of the children in sub-Saharan Africa who are HIV+ do not receive treatment and die young. • Knowledge of HIV/AIDS. Knowing about the disease is necessary but not sufficient for preventing HIV. Even so, more

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than half of the young people of sub-Saharan Africa do not have comprehensive knowledge of transmission of the disease. • Sexual practices, if begun. Sexually active young people are not consistently using condoms, although there are areas where use has increased. • Psychological health. Because of the extent of basic essentials children need, too often their serious psychological issues are not attended to. • Household composition. Affected children are in very different households. Programs I know include children who live alone, who are household heads, whose “parent” is an older sibling, who are with elderly grandparents, who are with one parent and siblings, who live with friends, and so on. One child who had been sent to live with a new family said she lived with “some kind of relative.” • Housing adequacy. We have visited a relatively well-built house that had only four mats and a small cooker because all other objects had been sold. We have been in homes where the children have been able to keep artifacts from their parents. • Water and sanitation. Affected children often have no access to clean water or to safe, clean sanitation. • Education. Though a goal for over 75 years, universal, free primary education is not available to all children in sub-Saharan Africa. Even fewer older children are in secondary school. Pre-primary school and vocational training are not common. • Role in family. Responses to children’s needs must consider whether a child is the head of the household, a sibling who must obey their older brother or sister, a relative brought in after the death of parents willingly or not, and so on. • Safety and security. Many children are vulnerable to abuse, both physical and sexual. • Income level. Poverty underlies most other difficulties, especially nutrition. • Legal status. If children are to speak up and be heard, they need to be registered, to know their rights, and to learn about the mechanisms for participation. Help, though, requires considering more than the basic essentials contained in this list. Who the potential service providers are matters: Should they be the neighbors or professionals? What kinds of preparation are appropriate for these providers? Who

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provides support is important. Providers include family, neighbors, community groups, youth-led associations, older orphans who have experienced similar circumstances, staff of small and large NGOs, home visitors, orphanage workers, health providers, people in schools, religious figures, or the personnel of government agencies. Comprehensive programs assess children’s contexts and provide help according to assessments. Depending on who they are and the extent of their finances, providers may be able to help in limited ways. Or they may be limited by the mandates of specific grants. Alternatively, and these are obviously preferred, child workers may be able to provide help in all needed areas. How the providers interact with children and youth is important. When known to the children, family members or neighbors, children respond well. The providers might be from the children’s own communities, or they may be strangers hired by outside agencies. Trust and reliability are important, so strangers who have few contacts with children may be less effective than neighbors, but trust can be built through multiple contacts. Depending on the arena of support, training is an important factor, but immediate experiences with the children and their circumstances provides its own kind of training. Service providers may or may not consult with children and community members about needs and processes. They may promote leadership development and encourage children and youth to organize and speak up. Evaluation of program success is important, and very often neglected. One kind of evaluation occurs through annual reports and proposals to foundations and agencies so they are eligible for support. Alternatively, funders may become very involved in the workings of the projects and assess progress through close collaboration and observation. Support may continue for the years of child dependency or come through short-term grants. Knowledge of the disease, its effect on the body, its transmission, and the variations of its impact in different countries is a next step to put substance around the issues that impact children and youth affected by HIV/AIDS. Country context strongly affects the impact of the disease, and we have come to understand that HIV/AIDS in sub-Saharan Africa is far more than a contagious disease that infects individuals. It affects families, communities, and nations. When we focus on children and recall Mandela’s reminder of who we are through our relationships with one another, through ubuntu, we understand that responding to HIV/AIDS and children in need means strengthening human bonds.

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2 One Continent, Five Countries, and Five Different Epidemics

Marianthe, infected with HIV, aged 13, and a double orphan, created a chronicle of her life in drawing and words; Figure 2.1 is a detail of the whole. She said that since she had been taking antiretrovirals she is no longer sick everyday, and she shows the virus leaving her body in the figure above. They (HIVs) are the almost human-like markings around the sketched prone figure. You also see a friend who has come to visit and is dismayed by Marianthe’s sickness. Although her understanding of the virus is faulty, it portrays Marianthe’s belief that the virus is leaving her. In spite of her daunting challenges, Marienthe goes to school, is a good student, participates with the association she belongs to, and looks to a positive future. She is a brave youngster, like so many we have come to know. As the HIV/AIDS pandemic goes on, year after year, it is changing. Some change is very unfortunate, as the number of deaths of adults means more orphans. Some change is positive. The UNAIDS 2010 report points to fewer new infections in the second half of the 2000–2010 decade compared with the first half, fewer deaths, more people being treated, and here and there greater awareness of how to avoid infection. A recent analysis that measures change over several years of prevalence and sexual behaviors among young people 15 to 24 shows reductions, some statistically significant, reductions in some countries that were accompanied by behavior changes such as increased use of condoms.1 This good news does not mean that concern over the pandemic should cease – HIV/AIDS is still a huge problem. “Currently 22.5 million people in Africa have HIV, but this number will rise to more than 30 million by 2020 – far more than can be treated with current resources.”2 Many of those recently infected, and those who become infected in the near future, are still apt to be young adults, especially young women. This chapter includes an overview of the disease that is followed by brief introductions to five countries that serve as foci for the remainder of the book. These country differences and similarities 21

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Figure 2.1 Marianthe shows the virus leaving her body (courtesy of the author)

highlight important social aspects of the disease as they pertain to children. We start by clarifying HIV/AIDS and its effects on its victims: HIV stands for human immunodeficiency virus and is a retrovirus that attacks part of the human immune system called CD4 T cells, by either destroying or impairing them. The virus passes from person to person through contact with certain bodily fluids such as semen, vaginal fluids and blood … Once HIV enters the body, it starts multiplying in number (known as the viral load) simultaneously destroying CD4 cells. For several years, a person with HIV may display no symptoms whatsoever. However, at some point, their immune system begins weakening until it gets to a point when the body is so “immune deficient” that it can no longer fight off everyday infections (known as “opportunistic infections”).3 When a person’s viral load is high and protective CD4 T cells have dropped, infected people begin to become sicker, the HIV infection worsens, and AIDS symptoms emerge. In 2010 the World Health Organization revised its guidelines about when to start administering life-sustaining antiretroviral medications (ARVs). Instead of the earlier guidelines, which suggested that people start ARVs when their CD4 count had dropped to 200, the new advice

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is to begin ARVs much sooner, at 350 T cells. The payoff for the earlier start will be healthier people, and with lowered viral levels, who are therefore less likely to transmit infection to others.4 Because that means more people will be slated for start-up of ARVs, those with T cells between 350 and 200, access and cost become major challenges. Using the 2010 guidelines, the UNAIDS report states that only 37 per cent of infected Africans needing ARVs are currently receiving them. Given the anticipated future and concerns about international funding for HIV/AIDS to poor African countries, as new people contract HIV and eventually need drugs to sustain their lives, the question is whether there will be drugs available. A study by Hecht and colleagues that looked into the future indicates that “even under the best circumstances there will be a persisting epidemic in 2031, 50 years after the emergence of HIV/AIDS.”5 How did HIV/AIDS become such a huge problem in sub-Saharan Africa? AIDS was first named in the early 1980s. There had, however, been a mysterious disease of wasting, diarrhea, and inevitable, painful deaths that had puzzled doctors in the West and in Africa since the 1970s. According to John Iliffe’s work on the history of the disease, HIV/AIDS appeared in Kinshasa, Congo, in the 1970s and was widespread there by the early 1980s. It spread quickly east and more slowly south among heterosexuals in different ways in different nations. In Burundi and Rwanda, for example, countries with conservative sexual mores, the disease was transmitted through sex workers whose customers infected their wives. Then, during the ethnic strife leading up to and during the Rwandan genocide of 1994 and the Burundian long decades of strife that ended only in 2008, the disease spread quickly, transmitted by rape, coercion, and dislocation of people from families and their traditions.6 A fairly common factor, and a deadly one, is the susceptibility to infection among people involved in networks of sexual partners.7 Since each member of the network may also have more than one partner, either during overlapping periods or during the same period, these networks are quite varied and changeable. The virus spreads rather rapidly through these networks, and, because members do not know about the other people involved, they do not realize the extent of their susceptibility. A newly infected person is highly contagious, so when one such person becomes infected, the others in the network are also likely to become infected. President Museveni of Uganda warned against multiple sexual partners years ago, and encouraged government officials to speak openly about the disease. “Zero Grazing” was a common piece of

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advice: “Do not have a sexual contact here and another there. Don’t be like a bull in a field of cows.” The grazing metaphor suggests that the government was aware of the dangers of networks of sexual partners. These public statements may have helped reduce Uganda’s infection rate during the late 1980s and 1990s. Even though infection is more likely with repeated sexual contacts, it occurs in single contacts as well. Commercial sex fuels the disease, and even now in several African countries people involved in commercial sex have extremely high HIV rates. Early in the pandemic truck drivers purchased sex from sex workers who were infected, and they in turn infected others, including their wives when they returned home. Early mapping of the spread of the disease demonstrated high incidence along well-traveled roads. Another early condition for transmission occurred in the mining industry. Miners from South Africa and nearby countries working for long periods away from their families in the gold and diamond mines near Johannesburg became infected and brought the virus home on annual leaves. All is not the same across Africa. For one thing, inequality is a factor. The countries with the biggest gaps between rich and poor have the highest prevalence rates.8 History, politics, domestic economics, and foreign aid play a part in differentiating among the countries. The result? There are as many HIV/AIDS epidemics in sub-Saharan Africa and as many responses to the plight of impoverished, affected children as there are countries. This book focuses on five countries. Burundi and Rwanda in Central East Africa have older and falling HIV prevalence rates. Both have been severely damaged by civil conflict and genocide. While they are similar in many respects, the differences in external funding and governmental response to ethnic genocide/civil war present quite different pictures of response to HIV/AIDS and care for their children. The third country, Tanzania, is also an East African nation. As in the first two, the population in Tanzania is very poor. With a higher but stable prevalence rate, Tanzania is interesting for its attention to aspects of child wellbeing. And, from southern Africa, where the epidemic has been and continues to be catastrophic, I have included South Africa and Zambia. South Africa is a rich country by African standards, but a complex one with a continuing and critical epidemic. Zambia is poorer, and its civic world has deteriorated largely because of the extensive, unresolved impact of HIV/AIDS. Important differences from country to country in rates of access to education, child health, nutrition, sanitation, responses to HIV/

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AIDS, and amount and kind of foreign aid explain some of the different country data on child health, education, and wellbeing measures and also raise questions about priorities: Could it be that the extent to which nations care for children is a measure of their strength? Or, to put it another way: Could it be that national delay in attending to the wellbeing of children prevents long-term development while the alternative, a focus on children and their needs, suggests positive growth and development? The following brief introductions to the five countries are just that, introductions. There are more details in subsequent chapters. BURUNDI Someone said to me recently, “Burundi, the forgotten African country.” True. It is not on visitors’ treks, nor is it receiving foreign aid at the levels of many other African countries. Burundi’s decades of civil unrest ended only recently, and elections in 2010 were worrisome reminders of earlier turbulence. Opposition parties refused to participate in elections after what they felt had been electoral fraud in the first of several elections.9 Not surprisingly in such an environment, there are high levels of corruption and low human development, to say nothing of poverty. It is one of the poorest nations in the world. But Burundi is beautiful, with hills that appear to tumble down to the capital, Bujumbura on the shores of beautiful Lake Tanganyika. One writer described Burundians as quiet, stoic even, and very polite; on the flip side, he notes, they can be very fearful, attentive to rumors, responsive to authority, and, on occasion, willing to kill.10 A tiny, landlocked country in Central East Africa, Burundi was ceded to Germany when European nations chose African areas for themselves at the Berlin Conference, 1884–1885. Burundi was neither enslaved nor heavily colonized in the nineteenth century. Indeed, until late in that century, Burundi had not “benefited” from the attention of Europeans. After Germany lost the First World War, Burundi, like Rwanda, was assigned to Belgium, and the two small countries were joined in 1924 into Ruanda–Urundi. It became a Francophile country, although most people live their lives speaking Kirundi. Independence from Belgium came in 1962, and, by all accounts, Burundi was not prepared. Since then Burundians have suffered from decades of conflict between the majority Hutu and the minority but often dominating Tutsi groups. The Tutsi-manned army kept the minority group dictators in power. Over the several

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decades of civil unrest, the unsettled civic climate has contributed to Burundi’s very limited economic development. The watershed year for Burundi was 1993. The first elected president, Melchior Ndadaye, a Hutu, had worked hard, and by some accounts, successfully, to find agreement between Hutu and Tutsi.11 But after only 102 days, on October 21, 1993, he and other leaders of the new government were assassinated. Hutus were enraged and went out to kill every Tutsi they could find. Another Hutu president was elected, but he was with the Rwandan president in 1994 when their airplane was shot down as it was landing in Kigali. In 2005 there were elections that were reasonably peaceful, and by 2008 much of the overt conflict seems to have died down. The economic environment is still very precarious. The World Bank and African Development Bank rated Burundi at 178 of 183 countries for the quality of its business environment.12 Such conditions often lead to problems in the political, civic arenas, and the 2010 elections were quite problematic. The security situation remains uncertain. The UN maintains a presence there, and there is hope for a stronger government and continued peace so that Burundi can attend to its grave social and economic problems. You might imagine that HIV rates are high in such a beleaguered country. They are not, relatively speaking. Burundi’s HIV prevalence rate is one of the lowest in Africa. It dropped 33 per cent between 2001 and 2009 to 3.3 per cent.13 Given its weak political context, widespread poverty, and relatively low level of foreign aid, it is hard to imagine that there were HIV prevention efforts during the years of conflict that caused the drop in prevalence. In Burundi HIV/AIDS is an “older” epidemic, and the decline in prevalence may be due to a natural leveling as a result. Burundi is not one of the original 15 countries funded by PEPFAR (the President’s Emergency Plan for AIDS Relief), the US effort begun in 2003 to help stem HIV/AIDS, although it does receive US funding as well as some other, international efforts. Only the equivalent of US$51 is spent per person for health there, compared with an average of US$819 for South Africa, or US$2992 in the UK.14 Using the newer guidelines for providing ARVs, only 19 per cent of Burundian adults needing ARVs get them, and only 11 per cent of children do.15 Children of poor families face tremendous odds, doubly so if affected by HIV/AIDS. The Child Development Index measures children’s wellbeing in terms of primary education, health, and nutrition. Out of 135 countries ranked, Burundi was 125.16

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RWANDA Rwanda’s complex story is one of contrasts. A beautiful, tiny country, Rwanda is famous for its hills and mountains, its mountain gorillas, and the 1994 genocide. Although it is still largely agricultural (in valleys and on terraces up mountainsides), urbanization and development are very much on the rise. Like Burundi, Rwanda is small, densely populated, landlocked, and poor. Both countries have majority Hutu and minority Tutsi populations; both were colonized by Germany and then Belgium; their languages are only slightly different; most of both populations are Catholic; both countries are poor. Rwandans are quiet, soft-spoken, and very polite; like Burundians, rural Rwandans can be susceptible and obedient to rumor. Belgian rulers, after the First World War, favored the ruling Tutsi minority (15 per cent) over the Hutu. The concept of two ethnic groups, one better educated and “more like us” fit with colonial thinking. The Belgian rulers deepened the divide by requiring identity cards that included one’s ethnicity. Hutu people resented Tutsi predominance in education, work status, financial situations, and links with the ruling Belgians. (There is a small group of Twa, pigmy people, in Rwanda as well.) As in Burundi, the Belgian colonial government had not prepared Rwandans for their independence in 1962. Hutus gained power shortly before elections and independence with some help from the Belgians. Members of the Hutu-led government begrudged the Tutsis’ earlier privilege and relative wealth, and extremists among them fomented sporadic ethnic killings that led up to the full-blown genocide of 1994. During those years many Tutsis left Rwanda for neighboring countries, many going to Uganda. Transplanted Rwandans in Uganda formed an army and invaded Rwanda in 1990 and demanded a role in the government. In response, the Rwandan government, aided by France, built up its army. In an effort to avert civil war, the UN established a peace-making process with meetings held in Arusha, Tanzania. On April 6, 1994, as the presidents of Rwanda and Burundi were returning to Kigali, their plane was shot down and all were killed. Genocidal attacks on Tutsis began that night. In 100 days nearly one million people were killed, Tutsis and a few moderate Hutus. General Paul Kagame led the Rwandan Patriotic Front (RPF) south toward the capital and after three months was able to push the killers west into Congo, along

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with former government officials who had planned and engineered the genocide and hundreds of thousands Hutus fearing retribution. Paul Kagame has been vice-president and president since the end of the genocide, and was re-elected for his final term in 2010 amid reports of government repression of opposition and press and increasing reports of human rights abuses.17 While there are such concerns under Kagame’s leadership, Rwanda has developed markedly. Despite the total breakdown of all physical and civil systems at the conclusion of the genocide, Rwanda today has become an example of focus, will, and leadership. Ostensibly at peace, some people hold deep anger – the apparent peace may be superficial. Three books by Jean Hatzfeld draw on the words and memories of killers, survivors, and people from both groups who now live side by side.18 Kigali has grown in recent years with people from rural areas drawn to the city in hopes of finding work, with business people invited to help develop a new Rwanda, and with many foreigners working with the numerous NGOs there. Beginning in 2008, the government offered more substantial housing to many of the poor in Kigali, people who had owned their makeshift, wattle houses. Other, even poorer, people who rented such houses were dispersed to rural areas, and all the sub-standard houses razed. Today visitors and the representatives of the many NGOs do not confront the extensive “slums” typical of African cities. But the dispersed persons lost their neighbors and neighborhoods and opportunities to work in the urban informal economy. Observing the dispersion of people within Rwanda’s welcoming business context has caused me to wonder about the nation’s commitment to equity. Rwanda has focused energetically and successfully on the HIV/ AIDS epidemic and its prevalence rate has dropped significantly, down to 2.9 per cent in 2009.19 Condom use is rising; there are fewer concurrent sexual partnerships; and expanded services to prevent mother-to-child-transmission of HIV have lowered the number of babies infected at birth.20 Unlike the situation in most of sub-Saharan Africa, there were fewer orphans to AIDS in 2009 compared with 2001. These figures are commendable, and demonstrate Rwanda’s use of its extensive foreign aid. Rwanda spends the equivalent to US$95 per capita on health annually, higher than 29 other African countries.21 Rwanda’s Child Development Index is 104 out of 137 nations.22

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THE UNITED REPUBLIC OF TANZANIA Nearly 44 million people live in Tanzania. Situated on the Indian Ocean, Tanzania borders Zambia, Malawi, and Mozambique to the south, Burundi and Rwanda on the west, and Uganda and Kenya to the north. Very early European and mid-Asian seafaring people used ports in Zanzibar and the coast of Tanzania as stepping points to European “exploration” and slave trading. There are roughly equal numbers of Christians and Muslims. The official languages are Swahili and English. Originally a colony of Germany, along with Rwanda and Burundi, after the first World War, Tanzania became a British Mandate and remained that way until 1961 when Tanganyika, as it was known, became independent. In 1964 the island of Zanzibar and Tanganyika joined to form Tanzania. Julius Nyerere organized the Tanganyikan African National Union in the early 1950s. As independence approached, the colonial government banned Nyerere from public speaking, but in the end, the British agreed to Nyerere’s objectives, and independence occurred in 1962 with Nyerere at the head. An intellectual and a socialist, Nyerere emphasized the strength of the collective. The ujamaa system of small communities would farm, market, and support its people and would, he proposed, prevent inequality, promote self-sufficiency, and provide reliable contexts for governmental supports. Some writers ascribe the economic hardships that Tanzania experienced soon after independence to Nyerere’s “forcing” people into communal villages.23 It is also true that the economy suffered from big increases in the cost of oil, a reduction in sales of the main export, sisal, and the heavy cost of ousting Idi Amin in Uganda. Amin had invaded Tanzania in 1978, and the cost of pushing Amin’s forces back and into Uganda and remaining there through a transition was heavy indeed. In addition, Nyerere’s official endorsement of agricultural growth meant industrial development was overshadowed, thereby reducing possible income growth. Whether due to factors beyond his control or to government policies or both, Nyerere’s village system failed to prosper. He resigned as president in 1985 but is still revered in Tanzania and throughout Africa. In the years since Nyerere’s departure, even though Tanzania has continued to be poor, there are positive growth figures in the areas of education and social services, some of which may have their roots in the Nyerere past.

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One of the earliest locations where AIDS cases were found in significant numbers was the Kagera region in the northwest corner of Tanzania. This was the starting place whence rapid spread engulfed the other regions of the country save Zanzibar. Moreover, soldiers returning from Uganda, the commercial sex industry, and traders added to the swift increase. By 2009 the HIV prevalence rate was 5.6 per cent, less than the 7.1 per cent of 2001, but significant still.24 Reports for the last few years show that only 30 per cent of people with advanced disease are receiving ARVs, still quite low, and below the average of sub-Saharan Africa.25 HIV/AIDS remains a serious impediment to Tanzania’s progress. Tanzania’s Child Development Index rank is 91 (of 135), 26 relatively high given its poverty level. The gap between rich and poor is smaller in Tanzania than all other countries of sub-Saharan Africa except for one.27 Together these measures may reflect enduring effects of Nyerere’s legacy. As in other highly impacted nations, the issue for Tanzania is how to scale up to meet the needs of 1.3 million orphans and the millions of other affected children. SOUTH AFRICA South Africa is big, big in size, in its economy compared with the rest of Africa, and in its human variety. The land itself is quite varied, from lush farmland to near desert, from plains to mountains, from expensive seaside resorts to vast areas of shantytowns. It is peopled by many different ethnic groups who speak many different languages, eleven of them official. And, in contrast to all other sub-Saharan nations, partly because of its natural resources, South Africa is rich. South Africa’s history has been brutal. A huge area with many different ethnic groups, creating unification has been challenging, especially given the long years of racial injustice. As early as 1652 the Dutch East Indian Company established a small settlement in what is now Cape Town to provide goods for ships traveling around the Cape of Good Hope. Very isolated from their European origins, the white settlers formed their own language, Afrikaans, and an adapted religion, the Dutch Reformed Church. As pressure for more land and for independence from the British who were competing for land, the Afrikaners, as they came to be known, began to move east beyond the southwestern corner. Through the nineteenth century European settlers wrested good land from black farmers for their own use. Extensive diamonds and gold were found and mined, and

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by using blacks for very cheap labor, they created elites. Even now, years after the beginning of democracy, there is still a sizeable gap between rich and poor. Its neighbor, Namibia, is the only nation in the world with greater inequity.28 Friction between the Afrikaners and British led to the 1902 “Boer War,” won by the British. During those years, whites continued to take land from blacks and provide them with few and inferior services. The British held sway until 1948, when Afrikaners won in the whites-only elections, and the ensuing apartheid period became increasingly repressive. Over the years until its end apartheid led to violence as regulations tightened and people used increasingly aggressive means to demand basic rights. During those years, apartheid laws restricted freedom of movement, education, health services, economic opportunity, access to legal services, etc. The laws were hardest on South African blacks but both “coloreds” and Asians were also restricted. The elite white groups continued to prosper throughout the apartheid period; they depended on the cheap and sometimes forced labor of black people. Change began when, bowing to international pressure, the government began negotiating with Nelson Mandela for his release from jail, after 26 years. Democratic elections were held in 1994, and for the first time all adult citizens could vote. A new democratic era began with Mandela’s presidency. Decades of repression, however, left considerable damage behind. Knowing that the apartheid past would continue to haunt the present unless strong measures were taken, the new government established the Truth and Reconciliation Commission (TRC) to face the country’s past. The TRC was a process to stimulate healing, to move beyond the hatred and violence of the apartheid years. During the exciting early days of the new, majority government, leaders did not focus on the HIV/AIDS scourge that was spreading through the country with incredible speed. “More than rising crime, persistent racism, or deepening in equality, the HIV/AIDS epidemic has been the feature of life after apartheid that has most threatened to unravel the “miracle” of South Africa’s democratic rebirth.”29 Using data from prenatal clinics, it is possible to trace this growth. In 1993, 4.3 per cent of pregnant women across South Africa were infected. By 2001, 24.8 per cent of women were, and by 2005 30.2 per cent were.30 At the beginning of the emergence of the disease, there was lethal silence about HIV/AIDS. People didn’t tell the truth about their loved one’s deaths. In 1996 I heard such comments as: “He died of malaria.” “She is in hospital, but we don’t know what

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is wrong.” One friend said, “My friend, Dafina, is in hospital and no one is talking about what is wrong. I think it is AIDS.” The continued silence around HIV/AIDS had grown into denial because of the fear of stigma. Thabo Mbeki, president between 1999 and 2008, questioned in 2000 whether HIV led to AIDS. Instead, he said that Western leaders had fostered the fiction that HIV led to AIDS because of their biases that Africans participated in reckless sexual behavior. Mbeki blamed poverty for the pandemic disease. His health minister, Dr. Manto Tshabalala-Msimang, resisted ARVs, saying they were toxic and their long-term impact unknown. For years she continued to recommend beetroot, garlic, lemons, and African potatoes as an alternative to ARVs, and in the process became a laughing stock at home and abroad. There are those who say that untold numbers of deaths resulted from the inaction of South Africa’s leaders. A report in the New York Times claimed that Mbeki and his government were responsible for 365,000 needless deaths that occurred while the government resisted inaugurating a roll-out of ARVs.31 Some believe that number is higher. In the meantime, AIDS activists (the Treatment Action Campaign) had brought attention to all AIDS matters; they challenged and sued the government. Free ARVs began to be made available. Mbeki resigned in 2008, and the new government announced policies and intentions to put 80 per cent of those in need on ARVs by 2011. They have put considerable effort and domestic resources into HIV/ AIDS prevention, treatment, and care. Still, South Africa has the highest number of infected people of any nation in the world with 5.6 million living with HIV.32 Following the departure of Mbeki and the start of new HIV policies, South Africa is now implementing the largest antiretroviral treatment program in the world. The number of new infections is decreasing according to some reports, and people are living who would have died without treatment. Moreover, there are suggestions of behavior change among young people.33 Still, HIV prevalence and death rates remain high. Life expectancy has dropped twelve years. There are 1,900,000 orphans to AIDS there. Young women continue to be at grave risk because most new infections occur among young women. Several new programs for children have emerged that are discussed in Chapter 9, but, given the size of the orphan situation, the question is whether there can be sufficient scaling up to prevent future chaos. Several important measures of child wellbeing have

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been dropping as the AIDS epidemic has grown; yet of the five focus countries, South Africa’s Child Development Index rank of 79 is the highest.34 ZAMBIA One writer said that Zambia is “one of the continent’s most peaceful countries,” but it is certainly not without problems.35 As in the rest of southern Africa, the San people were the first residents of Zambia. The San suffered at the hands of the Bantu people, who entered southern Africa in the 1500 and 1600s from further north. White colonists followed Cecil Rhodes’ annexation of Zambia in 1888, or, as it was named, Northern Rhodesia. Rhodes favored white colonists, but when white rule ended with independence in 1964, it was hoped that Zambia’s copper mines and its rich farmland would bring prosperity. That did not happen. Independence followed some civil unrest, and one of the activist leaders, Kenneth Kaunda, became Zambia’s first president. Like Nyerere, a socialist, Kaunda worked to nationalize previously white-owned businesses and banks. Though benefiting from its copper industry, by the mid-1970s, when copper prices plunged, Zambia experienced years of economic difficulty that continue today. Struggles over power continued through to elections in 1991, when Kaunda lost. His successor, Frederick Chiluba, attempted to mount economic reforms. These failed partly because of another collapse in copper prices in 1999. In Zambia, and countries such as Zambia, where 20 per cent of all children are orphans, and where the prevalence is high, at 13.5 per cent, there are serious issues related to the fact that only 15 per cent of Zambia’s orphans get external help.36 How healthy can this situation be if these figures do not change in a positive direction? Furthermore, in Zambia stigma is still preventing people from disclosing their status, thus keeping their partners from testing and treatment. On the plus side, there are signs of reductions in infections among young pregnant women. Young urban men are reporting fewer sex partners. According to UNAIDS 2010, using 2010 WHO guidelines, 64 per cent of the HIV+ people needing them were receiving ARVs in 2009, of whom 7 per cent were children.37 Zambia’s children do not receive the protection they need, and Zambia was ranked 112 in the Children Development Index.38 In a review of three decades of human development around the world,

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Zambia was one of only three nations with a lower rating for human development in 2010 than in 1970.39 IN BRIEF The number of children who have lost one or two parents to AIDS is high; in just these five countries, it is 4,220,000. Each country has a very different history and quite different responses to the HIV/ AIDS epidemic. In the short sketches are questions, problems, and issues to be examined in subsequent chapters. The five represent the range of the HIV/AIDS pandemic in sub-Saharan Africa from the poorest, almost, to the richest of countries, from the lowest to one of the highest prevalence rates, from relatively low to high percentages of people on ARVs, and from low to middle rankings on support for children. These differences represent the complexity of the pandemic in Africa, and in Table 2.1 we see some of the pandemic’s impact. There are large differences in prevalence; four of the countries had reduced prevalence (and percentages) in 2009 than in 2001. In three Eastern African countries, Burundi, Rwanda, and Tanzania, the reductions are substantial. South Africa, by contrast, has seen an increase in prevalence. Why? There the disease grew extensively during the first half of the decade when other countries were trying to control the spread. The differences across the countries in how many people are on ARVs, range from the 19 per cent of Burundi to a robust 88 per cent in Rwanda. The number of orphans speaks clearly. Table 2.1 The five countries Countries Prevalence, Change ARV coverage, adults and from 2001 adults and children, prevalence, children, 2009, per cent per centb 2009a Burundi Rwanda Tanzania South Africa Zambia

180,000 –33 170,000 –22 1,400,000 –21 5,600,000 4 980,000 –6

Orphansc

19 200,000 88 130,000 30 1,300,000 37 1,900,000 64 690,000

Source: UNAIDS, Report on the Global AIDS Epidemic, New York: UN, 2010, a pp. 180–1; b pp. 248–9, 252–3; c p. 186.

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The short sketches highlight several specific issues to keep in mind. For example, beginning with Burundi: Burundi is extremely poor and the Child Development Index suggests that their children are at grave risk. Its turmoil, corruption, and slow pace toward reform have kept donor countries at bay. Without the foreign aid funds to make up for its own lack of money, fewer adults and children receive ARV treatment than the other countries. It lacks policies and actions to protect its children. Yet its reported prevalence rate is relatively low. In Rwanda remarkable progress has been achieved in a relatively short time since its genocide of 1994. Its growth and forward development demonstrates the power of strong leadership. Despite lingering questions about human rights, equity, and continued peace, the administration seems determined to shine, and does. In regard to the HIV/AIDS epidemic in Rwanda, very impressive strides forward have meant most people who need ARVs get them, even children. There is tremendous effort at prevention activities, and prevention themes are in the air. Rwanda is very dependent on foreign aid for its response to HIV/AIDS; if that changes, one wonders if achievement can continue. While improvements in economic growth have been impressive, of interest is the fact that the ranking of children’s wellbeing as reported in the Child Development Index is relatively low for several reasons, explored below. Tanzania has had a fascinating history but suffers from continued high levels of poverty. The notable question has to do with Tanzania’s response to children given their stable, but relatively high, HIV prevalence rates. Here we note that Tanzania has not been able to provide anywhere near the levels of ARV treatment as Rwanda – for adults and for children. Yet its Child Development Index level of 91 is higher than those of the other focus countries save the much richer South Africa. Tanzania’s response to its children is due to successful efforts in education. Then, of course, there is South Africa. Its initial response to a huge HIV/AIDS epidemic was outrageous, but since 2008, it has rallied and is now moving toward being one of the most responsive of governments, and South Africa is able to do that, as we shall see in subsequent chapters, with some foreign aid plus considerable domestic funding. History will tell whether South Africa is able to overcome the magnitude of its HIV/AIDS pandemic and provide care for its 1.9 million AIDS orphans and the millions more affected children. There is momentum in South Africa. But is it enough?

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Finally, Zambia, one of the three countries in the entire world that did not grow during the 40 years of the Human Development Index.40 Zambia had a positive future at the time of independence, but internal problems and loss of markets depleted its economic potential. And, through lack of political will, human development has not been a priority for the government. Then came the HIV/ AIDS epidemic. While the prevalence has dropped somewhat, there are programs and projects to support people and care for children, and they seem to be increasing. Nevertheless, the scale of the continuing epidemic has come close to overcoming social structures.

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3 Girls and Women: Special Vulnerabilities

Back in 2003 at a workshop for Rwandan teachers and students, my husband and I talked with adolescents and adults about the dangers of HIV/AIDS. In sub-Saharan Africa there is serious gender inequality in the HIV/AIDS numbers, with many more girls and women infected than boys and men. As I write, in late 2010, there is increasing attention to the problem. Since the pandemic has grown so large, this inequity means continued vulnerability and, ultimately, many deaths of mothers. Gender issues, particularly differences in sexual behavior, are profound and can easily be misunderstood. They are difficult to talk about, particularly in sub-Saharan Africa, where traditionally learning about sex happened outside families, for some in tribal rites. Gender issues need to be addressed, however. In sub-Saharan Africa attitudes toward gender are integral to the vulnerability of girls and women. Dominance among men and boys and the high value put on peer pressure exists on the one hand, and on the other, there is passivity among girls and women that contributes to infection imbalance. The differences in HIV status are highly significant. Sixty per cent of those living with HIV in sub-Saharan Africa are girls and women, ages 15 to 49.1 This imbalance is consistent across the five focus countries, where 57 to 60 per cent of those who are infected are women.2 Think of it this way: “Thirteen women become infected for every ten men infected.”3 And these differences are particularly alarming when you look at young women. In country after country, two to three times as many young women are HIV+, as are young men. Nowhere else in the world are girls and young women so compromised by HIV infection. In South Africa, an extreme example, while 4.5 per cent of young men between ages 15 and 24 are HIV+, among the equivalent age group of young women the rate is 13.8 per cent.4 Imagine being a teacher of 45 secondary students who represented the proportions of infected youth across South Africa. Three of the girls and one boy would be infected with this 37

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We knew the gender issue needed a safe space and time, so we divided the women and girls from the men and boys for separate talk. It turned out that our being older, married, foreign, and not otherwise connected with their lives made it safe for the participants to address taboo matters. I led the women’s group and handed out crayons and papers and asked the participants to draw a time that was for them a good family time or to draw a picture of a time of stress and difficulty. Their picture had to include one or more men. I remember one teacher’s peaceful family scene of a rural house with three children and two adults in front. It depicted a time before the Rwandan genocide. Another picture, by a girl of about 13, showed her up in a tree with a very large man below. She explained that this man, someone she knew, accosted her as she was going home from school. She understood his intent was to rape her so she raced to a tree and just managed to climb up into it to safety where she stayed until he went away. Her aunt and uncle, with whom she lived, notified the police. The police arrested the man. When the girls and women in the room heard that outcome, they applauded. The reason for applause? Not only had the aunt and uncle reported it to the police, the police had responded. I asked the women if they wanted to say something to the men when they joined them. “Yes,” they said, and together stood in a row, shoulder to shoulder. Here my translator could not keep up, so I was not prepared for what happened when the men entered the room. The men did join us, looking apprehensively at the women lined up. Then the women shouted, “Stop infecting the women! Leave the children alone and keep them safe.” The men were deeply offended, as they made clear in their evaluations. To be blamed by the women in that way was shaming and offensive, and indeed, probably none of them had harmed children. For the teachers among them especially, in their group discussion without the women, they said it was better not to talk about HIV/AIDS because students should not hear about it. The huge gap between the anguish of the women and girls and the temptation to be silent on the part of the men is where work was needed.

serious, lifelong disease that requires medications to sustain life – if indeed they could get the medicines. The infection rate inequity is a serious obstacle to overturning the peril that HIV/AIDS presents. Why are women so vulnerable to infection? Some of the inequity is due to physiological differences, especially for young women

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whose genital systems are still growing. There are also important social reasons for this imbalance. Believing in the value of direct talk over complex issues, I asked 18 young (ages 18 to 28) leaders of Rwandan associations partnering with CHABHA to consider the gender imbalance. They thought it would be good to begin the discussion in groups separated by gender. At first, when talking amongst themselves, the women talked about how women are economically dependent on their husbands and therefore unwilling and unable to confront the possibility of becoming infected by them – for what it would mean about their marriage relationship. Even working married women are expected to hand their wages to their husbands, they said. This was surprising as Rwanda has the highest proportion of women in its parliament of any country in the world. Perhaps with time, the presence of women leaders will affect family relations. Meanwhile, in unequal power relationships, wives feel they must obey their husbands. Later when the women’s and the men’s groups came together to share their explanations, the young men confirmed economic dependence as a contributor to women’s vulnerability. Other explanations? Alice used the same bovine metaphor, “Zero Grazing,” as used in Uganda. She said, “The men in our country are like bulls in fields of herds of cows. They think they have access to all of the cows.” When she repeated it to the larger group, the men giggled but did not deny it. Something the young men reported was astonishing because it contradicted what many say and write. The men said that men were willing to use condoms; it was women who did not like condoms. The women did not disagree. Condom use is complicated. It is neither common practice within marriage nor in other regular partnerships. To use condoms suggests doubt about a partner’s faithfulness. There is an air of promiscuity connected with condoms. Moreover, a woman’s highest goal is to have children, not just one, but several, children. Dependent women within marriage would not want condoms. But men also prefer sex without condoms. The Rwandan men at the meeting were a bit misleading on that score as the actual rate of condom use is low there. In a study of Zambian men, moreover, Simpson showed that men did not want to use condoms; they preferred to have sex “live.”5 When talking alone with Honorine, a young married woman, I heard that married women have very limited means to protect themselves. Honorine said husbands who go to bars and drink too much may engage with sex workers and become infected. Even so she said she and other women could not ask their husbands to use

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condoms because the husbands would accuse them of engaging in extra-marital sex. Anyway, the husbands would refuse. Honorine did not trust her husband, and she feared her husband did not trust her. There was a similar lack of trust in the Zambian marriages, along with its companion, silence.6 As Honorine said, alcohol fuels infection. Alcohol leads to a whole range of risky behaviors: inconsistent condom use, multiple partners, and transactional or commercial sex.7 This is what a young South African man reported: I have observed that most people who become HIV positive are those who drink. When you are drunk everything is easy. You don’t reason and only realize the following day that you have made a blunder. And especially if you both drink, no one will take heed of the dangers of their actions. Some people are just not afraid of it. They will tell you: “AIDS will never do anything to me. I will rise above it with treatment in any case.” They see no need to use condoms because there is nothing to be afraid of (male, age 27, Eastern Cape, South Africa).8 What kinds of subtle rules underlie sexual practices that harm both men and women, but especially women? In one study of youth in South Africa, we find that the rules are set by the men, and girls feel they must follow. “Mostly, the men make the decisions in a relationship. The girls most of the time let them do so and often you don’t do nothing about it. They say that if you love him, you will obey his rules. Guys believe it is supposed to be that way”.9 A young man in the same study said about his girlfriend, “It’s important that she listens to me when I’m saying something. If we disagree, I have the last word. I wouldn’t accept my girlfriend to do what she wants.”10 For both girls and boys, the norms they acquire during childhood and youth are embedded in historical, social, and economic contexts and are not susceptible to easy change. A glimpse into how boys and girls construct their understanding of gendered roles shows that the multiple sources, including family, peer community, religious leaders, and media combine to provide children with background information from which to form their ideas about themselves and sex. Hilda Rolls found that in the peer community many games children played had sexual meaning. In playing these games boys were aggressive and did a lot of name calling, behaviors that the girls tolerated as they learned to be compliant. Children were very

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clear about family work and gender, which chores are for girls and which for boys. They were also very aware of the power of TV: “TV can show you things you are not supposed to do and it can change you,” said one girl.11 Compliance in childhood games is followed by compliance as adults. Large proportions of men and women, 47 and 40 per cent respectively, in Lesotho agree that women have no right to refuse sex with their partners, according to the 2009 AIDS Epidemic Update.12 According to the 2011 State of the World’s Children, 58 per cent of women agree it is permissible for women to be hit by their husband/ partner for one or more of these actions: burnt food; going out without telling the spouse; neglect of children; and refusal to have sex.13 Women who are economically dependent on their partners or fear violence from them are safer if they do not refuse sex. Such passivity may reinforce the undervaluing of women by men and loss of autonomy in women. Moreover, the absence of negotiation around sex fuels the gender imbalance. Women do not feel it is safe to talk about sex with their partners. As one South African woman said in a group context with other women, “I can speak out here, but who will defend me when I am alone with my husband in the bedroom?”14 Implicit is fear of violence. Early sexual activity is another explanation for the uneven infection rate between young women and men. It is risky for both boys and girls, but when girls have sex, it is often with older men and therefore dangerous because older men are more likely to be infected. Moreover, girls’ immature reproductive systems are easily torn and create portals for the virus. The younger girls are when they first experience sex, the greater the likelihood that that first sexual encounter was involuntary.15 Indeed, between 15 and 38 per cent of girls reported that their first sex was coerced.16 Adolescent premarital sex activity is increasing everywhere. In sub-Saharan Africa more and earlier sex leads to increased HIV and sexual transmitted diseases(STIs).17 The presence of STIs favors HIV transmission. These concerns are greater in some countries than in others, as there are considerable differences in age of onset. For example, in Zambia nearly half of boys and about 30 per cent of girls had their first sex between the ages of 13 and 15. By contrast, in Tanzania, only 14.9 per cent of 13- to 15-year-old boys and 3.8 per cent of girls had very early sex.18 The extent of adolescent fertility measures represent early sexual activity, and in the five focus countries births to adolescents range from a low of 11 per 1000 in Rwanda to a high of 146 in Zambia.19 Adolescence is a hazardous

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time of life, and sexual behaviors are more dangerous in the face of HIV. Adolescents are not likely to fear risks and are less likely to use condoms. It is a time for asserting autonomy and turning to the peer group. There is less talk with family and other adults.20 As adolescents turn toward their same sex peer group and form identity through those lenses, a gendered gulf emerges, one that threatens communication with older people as well. At a workshop about HIV transmission my husband and I asked participants to answer whether or not each situation could result in transmission from a set we presented. Everyone agreed that one could not be infected through hugging, for example. The place came apart, however, over one situation. The men and the women ended up shouting at each other about this one: “A man goes away to another country for two months on a special assignment. When he gets home, he has unprotected sex with his wife. Could she become infected?” The women said, “Yes, of course she could.” The men, “No, she couldn’t become infected.” These men and women had very different understandings of the meaning of the disease and their gendered role. Talk across these misunderstandings is crucial. The opposite, silence about sexual activities, is a serious problem in the context of HIV/AIDS. Understanding the high HIV prevalence among women compared with men requires that we move beyond our own thoughts and feelings about sex. Let’s begin with blame. Should men in sub-Saharan Africa be blamed for domineering sexual behaviors such as believing themselves the bull in a herd of cows, denial of responsibility, and women’s dependence? Some say “yes.” But, again, it is complicated. Men’s assertion of power in relationships is the inverse of women’s passivity. It is not possible to have one without the other. Boys aspire to conventional norms of masculinity that emphasize being in control and thereby demonstrating to peers (and themselves) their sexual prowess. It is very important to growing boys that they appear to their peers as “real men” through sexual conquests and potency. During their school years, the Zambian boys Simpson once taught and followed for years participated in many sexual exploits. These boys, now men, seemed to think of their sexual exploits as a bit naughty, perhaps, but mostly as a lot of fun. One-third of his respondents fathered children during their school years.21 When they finished school and, for some, university, they continued to have active sex lives with several sexual partners. Yet on contemplating marriage, which several felt would save them from the dangers of

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AIDS then emerging in Zambia, they desired obedient, respectful, and pleasant wives in the African tradition – quite a disconnect from their own sexual experiences. They married, and most continued seeing other women after marriage. One of Simpson’s former students, Malama, talked about sex after marriage: “In Malama’s estimation, during his marriage he had not had that many sexual partners, 30 at the most.”22 Even knowing the peril from AIDS, the need to present themselves to others and to themselves as “real men” overcame caution. When we contemplate the competing elements facing young men – knowledge of the disease, peer group norms, desire, availability, and in the context of alcohol, and few social inhibitions – we cannot be surprised by the extent of their risk taking, particularly the strength of the peer group, as this young man demonstrates: Interviewer: Can you tell us more about this idea of wanting to be popular. Do your peers expect you to have many girlfriends? Interviewee: Like when you don’t have many girlfriends it is like you are a moshemane (boy). Things like that. They will say you are gay or something. They can mock you. Interviewer: And if they see you with a whole lot of different girls? Interviewee: They will say “hayiuyinjawena” (you are a top dog)! You are the man. (Male, 18, Gauteng).23 Peer pressure is one important reason why young adults engage in multiple, concurrent, and overlapping partnerships. One would think people would know that sex with more than one partner is risky, but Parker and his colleagues found that only around one-half of the people they interviewed said it was safer to have fewer partners.24 Some girls and women are involved in risky sexual behaviors, too. Sexual networks involve women as well as men, perhaps not as many, but still in substantial numbers for the networks to flourish. A report from Botswana showed much higher numbers of men having multiple and/or overlapping partners than women.25 For their part, women who participated in multiple partnerships during their school years and afterward did so for several reasons: keeping their boyfriend; to prove their fertility; for pleasure; and for small presents.26 (Women from the somewhat more conservative sexual climates of Rwanda and Burundi do not admit to their own pleasure from sex, according to informants.) Girls from poor families in southern Africa learned from their mothers

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and other women the importance of keeping a man to help with finances. Concurrent sexual partnerships continue to fuel the HIV/ AIDS epidemic.

In 2005, a pastor in South Africa told me of a visit he had made two years earlier to the home of a dying parishioner. Only two months earlier the sick woman had learned her dying husband had AIDS. She had to face his faithlessness, but worse, she now knew why she had felt sick herself so often. An HIV test confirmed her fears, and now she was dying, too, and she needed help to plan for her children for after she died. The pastor said this was the first of many such visits to widows who were facing their own deaths. At the conclusion of our talk, he said, “It’s not a good time to be a man in South Africa.”

Like the woman the pastor visited, married women who have been faithful are susceptible to infection from husbands involved in sexual networks. Barnett and Whiteside reported a study that had found that 60 to 80 per cent of infected married women reported that they had had only one sexual partner.27 More recent study in Zambia found that 60 per cent of new infections occur in marriage or cohabitation.28 Increasingly, there are many “discordant” couples, where one member is infected and the other not. They need special counseling. A woman in Zambia who is working with discordant couples said this: How I wish women could say to their husbands, “Condom or no sex!” I remember a couple who came for an AIDS test. The woman came out negative but the man proved positive. When I asked the woman what she thought about using condoms, she said, “It’s up to my husband.” It just shows how submissive we are.29 These words also show how difficult it would be to negotiate the ground between the passivity of girls and women like the woman above with the sexual goals of many conquests touted among young men, such as the man who says that maybe he had 30 sexual partners outside his marriage, “not that many.” If there is to be significant change for the better, in terms of new infections, culturally embedded beliefs will have to be challenged.

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Poverty interacts with gender inequity. As girls become impoverished in the context of HIV/AIDS, many, unknown numbers, turn to transactional sex for their survival.

We met a teenaged girl, Aimee, who was 16 at the time and the head of a family of four, as both parents had died of AIDS. The only objects in their home were the four thin floormats they used for sleeping. Aimee had sold every other item in their house for money for food. She told us that a friend of her family had asked the children to come live at his house. She said that his wife became “uncomfortable,” so they had to return to their now empty home. The friend was still coming by with food. As explained by the leader who took us to this home, the man was exchanging food for sex, her sugar daddy. As the leaders were trying to figure out how to change the situation and get the children back in school, the family disappeared. Was the man at fault? Should he be blamed?

With such power imbalance, sexual violence can often follow. Rape occurs everywhere, of course, but where there are high numbers of HIV-infected rapists, as in South Africa, the chances for HIV transmission from rape rise alarmingly. With rape there is often tearing of the victim’s tissues, and the virus enters easily. In a recent study in South Africa one in four of 1738 men interviewed admitted to having raped. Few of these rapes were reported, however, and only 7 per cent of the reported rapes led to convictions. Rachel Jewkes, the researcher, was quoted in the Guardian: “We have a very, very high prevalence of rape in South Africa. I think it is down to ideas about masculinity based on gender hierarchy and the sexual entitlement of men.” A subsequent study in another part of South Africa showed that one in three men admitted to having raped.30 One in three! Violence is widespread in South Africa. A high incidence of rape occurs in other countries as well. About 50 per cent of women in Tanzania and 71 per cent in rural Ethiopia reported that they had been raped and beaten by husbands and partners.31 Girls are clearly at risk. Many stories exist of teachers coercing girls into transactional sex and rape. A particularly horrific myth about HIV/AIDS has fueled sexual violence against girls, even very young girls. Here it is: If an HIV+ man has sex with a virgin, he will be healed. This story has persisted despite efforts to teach the facts about the disease. In reaction to these stories and numbers,

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school leaders, parents, local government officials are working to make schools safer. And, overall, schools are becoming safer, and girls who stay in school are less likely to become HIV positive.32 Back to the question: Should men be blamed? I was definitely in the “yes” group until I thought further about how boys and girls learn about sex. By trying to live up to peer pressure, boys block out their emotional responses to events and increasingly treat sex in a limited way that obstructs intimacy.33 Boys need a way out from the peer pressure that builds their aggression. They need support, meaningful, local support they can trust, and to avoid dangerous situations, such as bars and having several partners, girls who have learned from the start to comply and to let boys dominate contribute to the situation. Change requires strengthening their sense of self and teaching ways to be safe – for example, safer ways of traveling. Peer support can promote feelings of self-worth and independence. Both girls and boys need new ways to shine. About violence, though, I have less sympathy for boys and young men who commit violent acts or for older men acting as sugar daddies to vulnerable girls. There the line must be drawn so that all, boys and girls, perpetrators and victims, can feel safe. The issue of gender and HIV/AIDS and the vulnerability of girls and young women must become an open topic for all. One would think gender differences would have been addressed early in the history of the epidemic. Ida Susser reported that only after the application of considerable pressure has this inequality been represented in writing, at conferences, and even in participation in research and clinical trials. In the early years of the epidemic, really until the middle of the 2000–2010 decade, women were not present to speak of their special experience.34 Over the years lives have been lost that were directly the result of gender imbalance. In spite of more recent acknowledgement of the problem, there is still little action and less change. A paper by Ashburn and others from the Center for Global Development showed that in the three countries they studied, Mozambique, Uganda, and Zambia, there was “high-level rhetoric with few objectives or actions and little follow through” about gender and HIV/AIDS.35 Moreover, the three biggest external donors, PEPFAR, the Global Fund to Fight AIDS, Tuberculosis, and Malaria, and the World Bank’s Multi-Country HIV/AIDS Program (MAP) had not successfully and systematically focused on or evaluated efforts to reduce gender imbalance or sexual violence. Reporting in 2009, a “Fact Sheet” from UNAIDS stated: “levels of violence against women remain unchanged.”36

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A US government report stated in May, 2010 that 30 million US PEPFAR dollars would be targeted to reduce gender violence in Tanzania, Mozambique, and the Congo.37 That is good news. Embedding girls’ and women’s vulnerability to HIV in prevention programs will work, however, only if those programs are attuned to the values and behaviors of the country and locality. Programs focusing on gender and gender roles in sexual activities need to be frank, ongoing, and engaging.

I recently talked with two Rwandan teenagers, a girl and a boy, who had just been in a workshop on HIV prevention, a workshop led by a young adult leader of their association. It had been a serious discussion of sexual development, behaviors, and methods for protection. I asked them their views on the experience. They both said it was really good to have considered prevention in the company of their friends and with the leaders of their association, older youths they knew and trusted. They were both strong advocates of what they had learned: when considering sex, both partners are responsible for safety, they said. Both young people had condoms in their pockets and agreed it was up to the female as well as the male to decide to have intercourse and whether a condom would be used. They had talked in their workshop about other ways to show affection and to assuage sexual urge, but if intercourse was to happen, they felt prepared. Would that all young folks, in sub-Saharan Africa and worldwide could be equally responsible, knowledgeable, and so free to share important information.

There are a few programs directed at men. For example, Sonke is a network that aims to promote gender equality and reduce violence. Sonke sets out to encourage men and boys to understand the dangers and vulnerabilities girls and women experience by having them think about their own loved female relatives and friends. The program leaders draw on the concept of ubuntu to increase their sense of relationship. Programs such as “Brothers for Life” and “One Man Can” provide materials and private counseling services to help reduce violence. Video materials are provided.38 Such efforts are essential if things are to change. Those programs that target boys and girls at early ages, before sexual activity begins and during the formation of peer groups that urge sex, will promote greater equity and safety for both sexes.

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Some fundamental, straightforward concepts about youth and sex in addressing gender issues are: 1. Vulnerabilities: • imbalance of power in relationships; • girls’ and women’s personal beliefs that they are powerless; • boys’ and men’s beliefs that the number of liaisons marks their value; • participation in sexual networks; • lack of knowledge of risk behaviors; • inconsistent use of condoms; • cross-generational sex; • physical and economic coercion; and • peer group influence on boys and young men. 2. Learnings: • girls’ strengthened sense of self; • avoidance of risky places and modes of travel; • boys valuing and experiencing intimacy; • avoiding dangerous behaviors; • access to condoms; • practice and use of negotiation skills; and • direct talk about HIV and prevention. OTHER GENDER ISSUES Girls and women have many other burdens that have intensified because of HIV/AIDS. In high-impact areas where hospitals are overburdened, sick patients are sent home, and, in most homes, women are the caregivers. Older girls often take over when there are no adult women left, and they leave school to care for sick family members and younger children. If the household head is a girl, like Aimee, she is prey to abuse, has little power or protection, and is often impoverished. Women volunteers do informal home visits in their neighborhoods. In South Africa many churches and other organizations have mobilized home visitors to help sick and dying persons. Typically they bring medicines (if available) and food. During the visit, they wash the patient, talk with them about their disease and needs, and, often, spend time with the children. Most are not paid but do report being proud of the volunteer work.39 Grandmothers are heroes. In some sub-Saharan African countries, more than half of orphans are in the care of their grandparents,

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especially their grandmothers. Elderly people who had settled into a quieter life are having to be parents again when their own children die. Most of these elders face an immense struggle to provide basics for sometimes more than ten children.40 In addition to poverty and struggle, the grandparents fear that death will take them before the children are grown.

In a church service in a township outside Johannesburg, we watched a little boy, about four years, with his very aged grandmother – perhaps it was his great-grandmother. She was urging him to walk to the other side of the huge room to join a group of other children and teacher. It would mean he had to walk in front of a whole crowd of people, and he was scared. She kept trying to urge him to go, but he was determined to stay in safety with her. Finally, leaning heavily on a cane, she took his hand and slowly walked him to the class. We wondered how long that little boy would have this elderly woman to care for him and make him feel safe.

There are legal issues that affect women and girls. In many areas of Africa, when a woman is widowed, by tradition, her dead husband’s relatives take over the property and household goods. In the past, the expectation was that the relatives would also care for the elderly widow. But now, with AIDS, when many women are widowed at an early age and often with young children, and when people fear the disease, many women and their children are abandoned by the family and are left totally bereft. Orphans are also prey to relatives who take their family capital. Marie José was 13 when she told me: “My life changed a lot when my parents died. Auntie couldn’t pay for school. I have had a hard time. My Mom died in 2004. After my Mom died, an uncle took the pension. He spent all the money and took the house.” When she spoke of this horrific event, Marie José was quite matter-of-fact, as if this was a fairly common occurrence. Unfortunately, it is. Many African nations have initiated laws to protect widows and orphans. However, as in Marie José’s case, the law did not help. For her, even if she had known about it, which she did not, to report on this family theft against powerful relatives was beyond her. Children like her need a protective voice as well as economic opportunity, safety, and school. They need agents or local governments between

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their vulnerability and legal structures that reflect the Convention on the Rights of the Child. When, or if, gender inequities are addressed in action, and risk factors reduced, we can have hope that the HIV/AIDS pandemic will be brought under control in sub-Saharan Africa. These inequities have existed for some time and are not due to HIV/AIDS. Instead, HIV/AIDS has revealed inequities and harmful attitudes about power and sex. The people who matter most, the girls, women, boys, and men who are susceptible to the risks involved, are the ones who must reflect on the matter of gender. Since changing sexual behaviors requires changing basic ideas about one’s gendered role in society, this is a challenging proposition. Unfortunately, because of silence about gender and HIV/AIDS, about sexual practices, and about violence it is difficult to begin the conversations necessary for change. In countries where the imbalance by gender is the highest – southern African countries, particularly, but elsewhere as well – adults must become comfortable talking about risky sexual practices with the young. Mothers, fathers, guardians, project leaders, and teachers will have to engage children and youth in talk about sex. Starting with young boys and girls in play, adults point out and engage children in recognizing and naming aggressive and passive behaviors. Adults will need to stimulate talk among older children and let them carry the discussion into the issues surrounding sex. Play and direct talk may lead to more equitable sexual behaviors between young women and men when they do become active.

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4 Life Sustainer: ARV Treatment

HIV/AIDS is experienced within the context of family, community, and culture. When an HIV+ person begins their regimen of lifesustaining antiretroviral drugs, there is usually a strong, positive effect as he or she gains strength, goes back to work or school, and is functioning as a family member. Children have their mother or father again. Thirteen-year-old Jeanne shows us the family dimension in her picture and story in Figure 4.1. Jeanne has presented a vivid representation of HIV in the family – the devastation of the diagnosis, the rejection by a neighbor, probably because of stigma, a child taking responsibility, a local organization helping, and a family coming together. Without the hope of drugs to keep her mother alive, the situation would be quite different. As with all matters concerning HIV/AIDS and children, the issues surrounding ARV treatment for adults and children who need treatment are complicated. I try to unravel some of the complexity in this chapter. I do need to add that there has been greater challenge in writing about treatment compared with other topics because the data, the guidelines for application events, the funding questions, and people’s responses are constantly changing. This chapter tells the story as it appeared at the end of 2010 and reflects patterns up to that point. After explaining antiretrovirals (ARVs) and what they do in the body to halt the spread of the HIV virus, the chapter focuses on the concerns of infected birthing mothers for their babies. ARVs play an important role in blocking infection from mother to baby at birth, a process called prevention of mother-to-child-transmission (PMTCT) or vertical transmission. The next section of the chapter considers treatment coverage and equity in drug accessibility, particularly with regard to children. Then, too, is the question of the costs of responding to the current and future HIV/AIDS epidemic. A fine film about the effects of treatment and many of the issues surrounding ARVs is the appropriately titled The Lazarus Effect. Antiretrovirals (ARVs) are keeping more than five million people in the world alive. Adults are often asymptomatic for several years 51

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Figure 4.1  Jeanne’s picture (courtesy of the author)

Jeanne is one of nine children. Her mother is HIV+ and was receiving free drugs at the time I talked with her. Jeanne’s picture is about an earlier time. In the picture her mother sits with her back to us. She has just come from the hospital where she learned of her HIV status. Jeanne said her mother cried for days. She had asked for help from a neighbor, the elegantly dressed woman on the left, who refused to help. After several days, Jeanne went to her association and consulted one of the leaders, who told her more about the disease. At the bottom left is the young leader. At the bottom are the small figures of Jeanne and three siblings listening to him. After learning about HIV/AIDS from Emile, Jeanne came home and told her mother how drugs would keep her alive and how all the children would help. Jeanne is very proud that she took on the responsibility of finding out about HIV and helping her mother. Her mother would live, and she, Jeanne, could help resolve serious family problems.

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after initial infection; and typically, during those years, ARVs are not prescribed. Children, especially those who are five or younger, demonstrate symptoms more quickly than adults do. Weight loss, shortness of breath, swollen lymph nodes, coughing, fever, and thrush (lesions in the mouth) are among the symptoms that appear in children and adults as CD4 cells are destroyed, and HIV leads to AIDS. Tests measure CD4 levels, the extent of the body’s remaining immunity. As people’s immune systems become more compromised they become susceptible to other diseases. In sub-Saharan Africa, AIDS patients are vulnerable to TB and malaria, for example. As the HIV virus multiplies and destroys people’s CD4 cells, without treatment the immune system is progressively obliterated. ARVs suppress or prevent replication of HIV. Today, patients are given a combination of three different ARV drugs that work in different ways. One drug stops the replication process;. another binds to the cell and prevents conversion; a third prevents the virus from assembling for release from infected cells. Once a person begins a regimen of ARVs, it is important that they do not stop, ever. If people do stop taking ARVs and start again, they are very apt to develop drug resistance. Even when they take their drugs regularly, many people experience drug resistance, and they then need different, and often more expensive, combination drugs, second- and third-tier drugs. These more complicated combination regimens are not available in many situations in sub-Saharan Africa, so resistance is a serious concern. From the beginning when ARVs first became broadly available in the West, in 1996, and changed people’s death sentences to chronic conditions, there were serious international concerns. Even as people in North America and Europe were alive due to their ARVs, it was apparent that hundreds of thousands, and then, as the disease spread, millions of infected Africans had no hope of getting the drugs – they were simply far too expensive. Everyone but the rich would die – and did. Pharmaceutical companies in the US and Europe, often referred to as “big pharma,” held patented ARVs, and lobbied in favor of trade restrictions against countries if they produced or purchased generic versions of the drugs. In 2000, President Bill Clinton issued an executive order that prohibited trade restrictions in the US. Later, the Clinton Foundation pushed against big pharma attempts to limit the production of cheap ARVs for the poor people of sub-Saharan Africa. Thanks to these efforts and those of many activists and advocates, this state of affairs began to change, and multinational

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and national donors provided money for the purchase of generic ARVs and other related expenses. The major multinational group is the Global Fund to Fight AIDS, Tuberculosis, and Malaria. Other international donors include the World Bank, the European Union, and UNITAID. Bilateral funders are PEPFAR and United Kingdom’s Department for International Development (DFID), and many others. The Bill and Melinda Gates Foundation is the largest private donor; there are thousands of small to large private foundations as well. Because of these global funds, free or inexpensive ARVs have become available to increasing numbers of poor people. Indeed, the increase from 2003 to 2010 is impressive, as we see below. A special effort has been and continues to provide ARVs to HIV+ pregnant women to ensure the safety of their unborn children. PREVENTION OF MOTHER-TO-CHILD TRANSMISSION (PMTCT) As we read in the last chapter, women and girls are vulnerable to serious HIV threat. Transmission of the disease occurs between mothers and infants before, during, and after childbirth. Without treatment to prevent transmission, between 15 and 30 per cent of babies born to HIV+ mothers become infected. From 5 to 10 per cent more infections occur during breastfeeding.1 But if pregnant women are treated with ARVs as a preventive measure, the drugs are very likely to prevent transmission to the baby. PMTCT is a program that aims to prevent mothers from transmitting HIV to their babies in utero, at birth, or during breastfeeding. The process is also called “vertical transmission,” a less judgmental expression. As more mother–child dyads are treated, the program brings great hope. To learn you have infected your baby with a lethal disease is appalling. To know the baby is safe is wonderful. Two stories give a glimpse of the human side of vertical transmission. One afternoon in Kigali, a Rwandan mother of five and her three youngest children welcomed visitors who came from a project supporting the family. The mother was HIV+ and was on an ARV regimen. The young leaders of our project talked with her about family health and other matters. The youngest child, a girl of six, had been tested and found to be positive, and the leaders wanted to know whether she showed any signs of deteriorating health and might need to begin the available, free ARV regimen. Then the

„

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leaders gently asked about the next older girl, who had been sick and probably needed to be tested. Understandably, the mother was reluctant. She had already learned that because of her own infection, one daughter had been infected for life, and the thought that she had infected two was too much to bear.

The other story shows the power of ARVs as prevention as well as treatment.

A 32-year-old Burundian mother of two children, aged seven and ten, said she was happy that her baby, expected the very week after our visit, would not be HIV-infected because she had been getting free medicines (ARVs), and her baby would, too, at birth and again at six weeks. She was not without problems, of course, including no money for rent (that our project covered), and no visible means of support. But she still had hope because her baby would be healthy and she had free drugs. She was lucky because in Burundi, although 40 per cent of pregnant, infected mothers are tested, only 9 per cent receive ARVs.2

There has been significant increase in the provision of ARV drugs for PMTCT, especially in the 2005–09 period. Data from 2008 show that 45 per cent of sub-Saharan African HIV+ mothers were provided with drugs, compared with only 35 per cent in 2007.3 By 2009 that had risen to 54 per cent.4 Testing for the presence of the virus is a necessary first step in responding to the potential for vertical transmission, and testing has increased. Table 4.1 presents relevant data for the five focus countries. The first column shows the percentage of women tested, while the second shows the percentage of babies born to women who were found to be HIV+ and who also received ARVs to prevent vertical transmission. As far as testing for the existence of HIV, South Africa and Zambia have reached “universal” levels, and Rwanda and Tanzania are not far behind. Testing is obviously much more widespread than follow-through with preventive ARVs. Jimmy Kolker, HIV/AIDS chief of UNICEF, pointed out that although several countries will achieve “universal” access in testing by 2011, there was a worrisome pattern. The increase in testing “has not translated into a steep decline in babies born HIV-positive.” Part of the problem is due to the fact that

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mothers have babies at home without access to medications needed by the infant immediately after birth.5 Table 4.1  Vertical transmission: the five focus countries, per cent Countries

Pregnant women tested for HIV

Infants born to HIV+ mothers who were on ARVs

Burundi 40 9 Rwanda 71 62 Tanzania 66 51 South Africa >95 56 Zambia >95 39 Source: UNAIDS, Report on the Global AIDS Epidemic, New York: UN, 2010, pp. 225–7.

An important factor is that testing to find whether HIV is present does not indicate the level of CD4 cells, which is needed in order to decide appropriate treatment responses. Further testing to determine CD4 levels entails the additional costs of equipment and trained personnel. UNICEF’s 2010 Stocktaking Report states that there will, in future, be more facilities offering testing for viral load. It is hoped that when HIV+ mothers are tested for the specifics of their virus infection and are treated, a significant change for the better will occur.6 Even where full testing is available, pregnant women may not agree to it. They may not want to know they have a life-threatening condition; they may not understand or believe in testing; and many women fear the possible reaction of partners and others to the news of HIV infection. Many people believe that the first person who learns she is HIV+ is the one who brought the disease to her partner. Health workers at prenatal clinics urge pregnant women to be tested, for obvious reasons, but stories of pregnant women beaten and ostracized after telling their husbands of their status have made women reluctant to be tested. Testing and counseling for couples are increasing, and can help couples understand their situation better. When the drug treatment begins, the kind of ARVs prescribed is important. In the late 1990s researchers found that single-dose nevirapine halved transmission to their babies. Since then, because some mothers experienced drug resistance from single-dose nevirapine, treatments have combined drugs with the result of fewer cases of resistance and improved levels of transmission. Single-dose nevirapine, however, continues to be widely used in sub-Saharan Africa, even as more improved regimens appear. It is notable that

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although only 9 per cent of Burundian mothers received ARVs to prevent vertical transmission, those who did received the better drug combinations. Similarly, Rwandan and South African mothers are more apt to get these more effective drugs. Zambia and Tanzania, unfortunately, are still using single-dose nevirapine for 30 to 45 per cent of mothers treated.7 Many infants who are born with HIV and who receive no treatment die by age two. With follow-up testing and treatment that includes ARVs and antibiotics, the picture is very different. The inexpensive antibiotic co-trimoxazole reduces diarrhea, pneumonia, and other treatable diseases and keeps babies and toddlers alive even if they have compromised immune systems. Unfortunately, still, in 2009, after considerable effort to make the antibiotic available, Burundi and Tanzania provided co-trimoxazole treatment to only 9 and 10 per cent of their infected infants, respectively. And South Africa, only 20 per cent. By contrast, infected infants in Rwanda (62 per cent) and Zambia (39 per cent) were much more likely to be supplied with the medicine.8 Infants need to be tested after birth and then again at two months to reliably determine their HIV status. To be tested and prescribed drugs requires they be brought to clinics. A sobering note comes from studies reported in the UNICEF Fourth Stocktaking Report about lack of follow-up.9 More than half of infants who initially tested positive were not brought back for follow-up diagnosis and treatment. Only “between one quarter and one third of infants who tested positive were initiated on ART.”10 Follow-up depends on mothers understanding the need to bring their infants to clinics. For rural mothers, particularly, it is difficult to persuade their husbands/ partners that it is important to leave older children and work, and, importantly, to pay for the travel. Stigma and fear of stigma may also inhibit these critical moves. If the services for infants are available only in HIV clinics rather than in general medical facilities, mothers concerned about revealing their own HIV status may be less willing to get help for their infants. Efforts to meet these challenges include training lay persons to counsel and test so that more people can be reached.11 Another new approach, mother–baby packs, may also improve the follow-up problem. These packs include ARVs for mothers, drugs in syrup for babies, and co-trimoxazole for both, sufficient for six weeks. They were tried out in 2010 in four sub-Saharan African countries, including Zambia, and there are hopes that coverage will be increased considerably.12

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What about breastfeeding? For mothers and their public health advisors, this is a difficult problem given the incidence of HIV transmission. On the one hand, breastfeeding, including breastfeeding by HIV+ mothers, increases infant resistance to diseases and reduces early malnutrition. Moreover, bottle-feeding is rare and attracts attention. If HIV+ mothers do bottle-feed, their neighbors and others will realize their HIV status, so some mothers breastfeed to hide their status. Breastfeeding is the safer process, anyway, especially if the mother is on ARVs, because transmission will be reduced. If infants are also medicated with preventive ARVs, the transmission drops to 1 to 3 per cent.13 The World Health Organization recommended that “HIV-exposed infants be breastfed for at least twelve months with appropriate ARV prophylaxis.”14 If mothers are fully informed and have access to ARVs, breastfeeding may be their best choice. It is important to emphasize “fully informed” and “access”, since too many mothers, more than half, do not have access and medical infrastructure is limited; moreover, though there is more counseling, often it is not available. Despite the simple, rather straightforward application of prescribed medications during pregnancy, at birth, and during neonatal care, there continue to be socially embedded difficulties such as inadequate health infrastructure, distance and cost to families, continued stigma, and family stressors. Often the technical solutions are much easier to manage than the social ones, especially when culture, poverty, and infrastructure limits are present, as in sub-Saharan Africa. Even so, with regard to vertical transmission, the process to date has meant that fewer infants are born with the disease, and fewer die early. In 2010 donor countries and international organizations commited themselves to improving maternal and child health. If effort and money follow intentions, some of the obstacles to prevention of vertical transmission will be overcome. TREATMENT, NOW AND IN THE FUTURE When parents are on ARVs, they are again available to their children. Many children return to school once family finances improve, and they get more nutritious food and are less involved in child labor. Communities are revitalized.15 A group of doctors at a gathering in KwaZulu Natal in South Africa in 2005 talked about patients rising from their deathbeds to farm and care for their children. Their small hospital had had access

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to ARVs for only a short time, but rather than lament the thousands of patients lost, they rejoiced in those being saved. On the walls of a Partners-in-Health facility in Rwanda are amazing “Before” and “After” pictures of patients. The emaciated old man becomes a vigorous much younger-looking man. The wizened child is plump, smiling, beautiful.

Nazareth House in Cape Town is a Catholic home that finds families for orphans and cares for many infected orphans. Quoting from their website: “Alice and Ndumiso arrived at Nazareth House over 8 years ago. No antiretroviral treatment was then available. So when it came time to run in their first school races, they both, predictably, came last. But this year, when athletics day arrived, Alice and Ndumiso were the triumphant stars of the day, coming first in their races!” Nothing could better illustrate the remarkable effectiveness of ARV treatment than this true story.16

It requires a huge effort to build the processes and infrastructure to get these medicines into hard-to-reach and impoverished areas of sub-Saharan Africa. Too often, bureaucratic regulations stand in the way of treatment. A young physician started a program to help children and adults affected and infected by HIV/AIDS in KwaZulu Natal, a highly impacted region of South Africa. She told me about the process of accessing ARVs then, in 2005, when ARVs were first being made available there. In order to access the drugs, she explained, people had to be registered and have proper identification. Then they had to be tested several times at a local clinic. Finally they were required to get to the regional hospital for more testing. For the very poor, these appointments required transportation money. Those who didn’t have transportation money died. Some who lacked proper identification couldn’t even get started. The doctor told me of a visit she had recently made to three women. Two had begun the ARVs and were doing well, able to care for their children, and gardening again. A third woman had no identification, and she was dying. In Ida Susser’s book Sibongile Mkhise wrote of the same problem with regard to free clinics. “Since the waiting list is very long (for ARVs), there are many patients who die before their turn comes to access free drugs … The health centers that have free drugs are mostly in towns and far away from the poor needy people.”17

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Some of the impediments noted for pregnant women to testing exist in the general population as well. Fear is one impediment to testing, and there are others. It is much easier to go for testing if you know there are free ARVs available – in such instances, learning about one’s positive status is no longer a death sentence. Also, if people do not believe that HIV is a disease transmitted through bodily fluids, having a blood test does not make sense. Jonny Steinberg’s book about people in the Eastern Cape, South Africa, facing the HIV/AIDS epidemic demonstrates this disbelief. One man said in connection with his decision not to be tested that the virus was “put in one’s body by witches and their demons, and antiretrovirals were useless in the face of witchcraft.”18 Illness is thought by some to come from spirits and supernatural forces. Such thinking enhances stigmatization.19 It needs challenge, respectful challenge. In some areas health workers collaborate with local traditional healers as they share experiences and knowledge and work together. Steinberg also wrote of an instance when an error reduced the number willing to be tested. People in one community watched as their neighbors, mostly women, went into a building for testing and counseling. The people watching could tell who was positive and who was not by how long they were in the testing place; if not infected they reappeared quickly because they did not require counseling. Those who were in for a long time were receiving counseling; they were positive.20 As a result of the inadvertent airing of private information and fear of stigma, more people stayed outside to watch than went in to be tested. Talk about unintended consequences! There are many infected older children and adolescents who may be falling through the cracks.21 They may have become infected at birth. Although many babies and toddlers infected at birth die within a short time, with good care and slow emergence of symptoms, some live into their early teens. These children and adolescents are beginning to attract attention and be identified. Youth-friendly services need to reach out to them so that they are tested and, if positive, treated. More young people would be tested if they did not need their guardians’ permission.22 Looking at the numbers treated, overall in sub-Saharan Africa, the proportion of people needing treatment with ARVs, based on the older, 2006 WHO guidelines, grew from 9 per cent in 2005 to 35 per cent in 2009. In the eastern and southern regions of the continent the 2009 figure is a high 50 per cent.23 Although five million people

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are on ARVs, worldwide, ten million are still without, and that’s with the old guidelines. With the new guidelines the number in need has grown to 15 million. Getting ARV treatment to millions is an enormous challenge, one that international agencies, especially the UN and donor and developing countries, are tracking through progress toward the Millennium Development Goals (MDGs). These goals are United Nations-sponsored efforts to reduce poverty and improve health and wellbeing – with targets to be achieved by 2015. Most of these goals are addressed in more detail in Chapter 6, but here the relevant aspect concerns the world-approved two goals that reference HIV/ AIDS, malaria, and tuberculosis. The pertinent targets for HIV/ AIDS are (1) that by 2015 countries should have halted and begun to reverse the spread of HIV/AIDS, and (2) that they were to have achieved universal access to treatment for HIV/AIDS for all those who need it by 2010. As to the first target, halting the spread of HIV/AIDS, there is hope that new infections will continue to level off – although at high levels. Still, leveling off new infections is nowhere near to “halting” the spread. The concept of universal access to treatment is challenging, too, especially with new guidelines about when treatment is to begin. Universal access is considered achieved when 80 per cent of those in need receive ARVs, a rather questionable interpretation of the concept “universal.” There is evidence that this target will be reached, at least in some countries. Table 4.2 presents the figures from the 2010 UNAIDS report on the country percentages receiving ARVs using the 2006 and 2010 guidelines. Table 4.2 People needing and receiving ARV treatment, per cent Countries

According to 2010 guidelines

Burundi Rwanda Tanzania South Africa Zambia

According to 2006 guidelines

19 27 88 95 30 44 37 56 64 85

Source: UNAIDS, Report on the Global AIDS Epidemic, New York: UN, pp. 249, 252–3.

Rwanda, poor as it is, stands out with coverage far beyond the continent average and the other focus countries. Its coverage percentage shows it has met the MDG target. Zambia has scaled up

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as well. In 2004, only two clinics in Zambia offered free ARVs; by late 2010 the number was 420.24 South Africa’s coverage is at the continent’s average and lower than one might expect of a relatively rich country, but as we have seen, its late start in rolling out ARVs put the country behind others. Tanzania’s progress is modest. As is true with so many measures, Burundi’s coverage is depressingly low. Clearly, one’s chances of receiving treatment and continuing to live depends to a considerable extent on one’s country of origin. In addition to this evident inequity across countries, there are other forms of unequal access to ARV treatment. Given the imbalance of infection rates among men and women, it would not be surprising to find inequity in treatment by gender as well. However, throughout sub-Saharan Africa and in the focus countries, women are receiving ARVs in equal or higher proportions to men. The difference in part reflects the greater number of women infected; if three times as many women as men are infected, and the proportion of both women and men who are treated receive ARVs at the same level, there will be many more women. Moreover, the effort to reach infected pregnant women to prevent mother-to-child transmission has influenced these figures. What about children who are infected? Sadly, here there is inequity. Overall, “children continued to have less access to antiretroviral therapy than adults with 28% coverage of children compared with 37% coverage for adults across sub-Saharan Africa.”25 Recent data show that in four of the focus countries, proportionally fewer children than adults are treated with ARVs: In Burundi, 11 per cent of children, 0 to age 15, in need are treated; Rwanda, 60 per cent; Tanzania, 17 per cent; and Zambia, 36 per cent. When we put these numbers beside the overall treatment rates in Table 4.2 the inequity is quite evident. In Zambia, for instance, the difference between 36 and 64 per cent on ARVs is significant. Or Rwanda, where 88 per cent overall receive ARVs, but only 60 per cent of children do. Unlike the continent as a whole, and unlike these four countries, in South Africa more children, proportionally, than adults are treated, and 54 per cent of children in need receive ARVs.26 These figures represent increases in the treatment of infected children, but it is nevertheless evident that more children need to be reached. Those children who do receive the drugs respond well, especially when administered early after symptoms first appear.27 They also live longer if the adult who is administering the medicines is HIV+, suggesting that empathy and understanding are important to child responses to treatment.28 Children, indeed everyone who is treated

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with ARVs, need to have nutritious diets, and that is an enormous challenge. There are other considerations. For example, little is known of the long-term effects for children on ARVs. Pediatric treatment research on dosage and resistance is affected by the fact that there are few HIV+ children in the US and Europe, where much of the research takes place. In response to the continued and growing need for treatment for adults and children, the UNAIDS proposes a new, simplified, less costly treatment process, called Treatment 2.0.29 Treatment 2.0 looks to develop better dosages, down to one or two pills a day, and pills with fewer side effects. These changes would improve adherence, although adherence levels in sub-Saharan Africa tend to be generally good. Included in Treatment 2.0 are simpler diagnostics for HIV status and CD4 counts. Most people in sub-Saharan Africa on ARVs are on first-line regimens; and if they need to be moved to second-line medications, the cost goes up. Treatment 2.0 recommends fewer visits to doctors, earlier starts on ARVs so people do not become sick, less expensive testing, fewer people on expensive second and third tier drugs, careful procurement measures, and use of trained community persons. Finally, Treatment 2.0 stresses something very important: treatment efforts become prevention, prevention of infection in the first place, prevention of movement into serious illness, prevention of death. Treatment 2.0 combines efforts and responses to the challenges that we hope will one day be realized. The present is difficult enough for children, and the future is not encouraging without massive efforts such as Treatment 2. The trouble? Money and priorities. It is very costly to maintain the millions on ARVs – to say nothing of those already infected who will need them in the future and the millions likely to become infected. The differences from country to country reflect extent of donor aid, among other matters. An exploration into HIV/AIDS financing in Burundi and Rwanda is a case in point. The two countries have fairly similar populations: Burundi, 8,988,091; Rwanda 10,473,282, with similar ethnic compositions. They also both have relatively low HIV prevalence rates: 3.3 and 2.9 per cent respectively. By contrast, as noted above, their ARV coverage rates are very different: 19 and 88 per cent. A good deal of the difference in treatment can be explained by the size of international support they receive. Data from The World Bank on the total external money donated for HIV/AIDS to the two countries by the largest international and bilateral donors, PEPFAR, the Global Fund to Fight AIDS, Malaria and TB, and

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the World Bank demonstrate this point. Between 2003 and 2007 Burundi received US$57,700,000 and Rwanda US$428,900,000 from these organizations.30 Drawing on data from UNAIDS 2010 on the number of people infected, Burundi spent the equivalent of US $144.78 per HIV+ person while Rwanda spent much more, US$651.83. Of its money for HIV/AIDS, Burundi uses 22.5 per cent from its domestic sources, of which there is little, a contrast with Rwanda, which allocates only 5.5 per cent from domestic moneys, with the rest in foreign aid from bilateral and multilateral sources. If poor countries like Burundi do not receive more external money, they will continue their limited response to the disease. If heavily dependent countries (in terms of funding for HIV/AIDS) such as Rwanda do not continue to receive large amounts of external funding and if they cannot allocate considerably more internal domestic support for treatment, their comprehensive response to HIV/AIDS will falter. The continuing ability of sub-Saharan countries to maintain and increase their responses to HIV/AIDS depends on international support. At the end of 2009 and early in 2010, however, there were increasing reports that donors were level funding or even decreasing their aid for HIV/AIDS. In May 2010, Médecins Sans Frontières (MSF) (Doctors Without Borders) reported a downturn in donor grants for HIV/AIDS. According to MSF, changes in aid have meant that people who need ARVs are being turned away, “because the health facilities they consulted did not have ART available or patients could not afford the 15 USD for a CD4 test that would allow them to start ART.”31 According to the report, even though treatment with ARVs has reduced deaths, transmission, and co-infection with TB, the future is uncertain. How serious is the situation? PEPFAR reduced its treatment budget in 2009, with a 17 per cent decrease for medicines.32 In mid-2010, some PEPFAR sites in South Africa were already limiting the number of new people who could begin ARVs. Similar rationing of treatment is occurring elsewhere. World Bank programs for treatment will be ending in the near future, with “no plans for any HIV/AIDS-specific continuation programme.”33 Similarly, other sources for ARV treatment, including the European Union, are slowing their contributions. The Global Fund is supposed to pick up some of the slack, but the Fund is also experiencing reductions.34 The Fund and other donors are urging sub-Saharan African countries to shift domestic funding to treatment. Given the levels of poverty, however, one wonders whether even the current

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numbers of treated people can be maintained. Meanwhile, many of the country and larger NGO donors, such as the Bill and Melinda Gates Foundation, are strengthening their support for maternal health and for the prevention of child mortality. With regard to this shift, and with concern that efforts to improve health and reduce poverty through the Millennium Development Goals (MDG) will falter, MSF states that “targeting the MDGs cannot possibly be done without properly tackling HIV/AIDS.”35 The MSF report came out prior to an international 2010 review of progress toward meeting the MDG and caused a stir. Statements from donor countries deny that there has been a downturn in funding for HIV/AIDS. For example, the Obama administration in the US has responded about their request for more money for FY 2011 than the year before, but the Republican Congress in 2011 wants to slash foreign aid, so it is difficult to predict the future of US aid. The request asked for very little more and for the money to be used more broadly. To many, this change signaled flat funding when more, not less, is needed. A report showed that the rich countries provided US$7.6 billion in 2009 compared with US$7.7 in 2008.36 A recently published report that considers different scenarios points to some donor fatigue and belief among some people that AIDS has received enough funding. The report shows these attitudes to be harmful by pointing to the devastating impact of reductions or even leveling of financial support.37 We can only imagine the hardships health workers and patients face if in the future fewer people can access ARVs. Health workers will increasingly say “no” to parents and children and thereby consign them to death. In desperation people may be traveling from site to site hoping to obtain the drugs for themselves and for their children. MSF suggests people will be sharing drugs. With less funding, there is little chance that ARV treatment programs will be able to move to earlier starts of drug regimens as the World Health Organization has advised. When we recall Jeanne’s story from the beginning of this chapter, about her mother, we can imagine what a very different story it would be for her family if Rwanda were to face a shortage of ARVs and her mother denied treatment. Her mother would not be able to lead the family; she would get sicker and sicker, and one or more of the children would have to nurse her through the ups and downs of illness to her death. At that moment there would be nine new orphans. Yes, it is expensive to support people for their lifetimes, but the alternative is also a problem. More orphans not being helped

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will disrupt hopes for development and security. In large part, the solution to the problem of treatment access lies in there being fewer new infections. A shift in priorities is also needed, not only in the affected countries, but also among international agencies and donor countries. Responses to HIV/AIDS must reflect the great impact of the disease on children, families, and communities. To meet the challenges, treatment efforts must continue, but even more essential is prevention of new infections.

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5 Prevention: The Long-term Goal

“Everyday more than 7,000 individuals become newly infected with HIV – more than twice as many as the number of people who start on antiretroviral therapy each day.”1 It stands to reason that treatment alone cannot solve the long-term problem of HIV/AIDS in sub-Saharan Africa as long as this trend continues. Moreover, with the leveling or reduction in donor money for ARVs that appeared in 2010, the only positive way forward is to significantly reduce new infections. Even though there were fewer new infections in sub-Saharan Africa in 2009 compared with 2001, 1.8 million compared with 2.2 million, we are still looking at massive numbers of new infections.2 Yet HIV infection can be prevented, so what is the story? With sex as the source of most HIV infections and with our attention on young people at the peak of their sexual energy, we enter a particularly difficult terrain. Not only are many young people engaging in sex, they often change partners as they experiment and seek life partners, clearly risky behaviors.3 Getting people, especially the young, to change their sexual behaviors is not a simple matter. Sexual behaviors are personal and private, far beyond most human discourse, exciting, prone to shame, susceptible to peer influence, and embedded in familial, religious, and cultural norms. How to reach young people in ways that persuade them to protect themselves is a major challenge. Every two years the international conference on HIV/AIDS brings stakeholders together. In 2008 the Mexico City conference was a somber affair.4 Althhough many more people were on ARVs than ever before, the numbers of new infections had only slowed a little. Hopes for a vaccine had dropped. Donors were becoming tired of the huge cost of keeping people alive. Widespread agreement existed that what was needed was much more effective prevention. At that time Richard Horton and Pam Das wrote, “The truth is that this pandemic will never be defeated without effective prevention.”5 The 2010 conference was more positive – largely because of two announcements bringing hope where there had been little, both the 67

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result of years of scientific effort. One showed positive direction toward a vaccine; the other a gel for women to use as a barrier to the virus, both described below. These announcements were greeted with optimism. Still, there is the reality of today and awareness that both efforts will require further research and the challenges of implementation. For the foreseeable future and beyond, prevention efforts that rely on multiple approaches need to continue, indeed increase, and they must become more effective. Efforts to help people make positive decisions regarding their bodies and their sexual behaviors require understanding and sensitivity. We know that telling people to change is not enough; there has been a lot of telling but to little effect. Using techniques from the West that made a difference among very different populations, as happened in the early days of the pandemic in Africa, hasn’t worked. Compared with treatment, it is difficult to evaluate prevention effects. With treatment, one can count numbers on ARVs and can measure people’s CD4 levels over time. Moreover, countries are under pressure from donors to show results. So they respond. With prevention, it is difficult to determine cause of any behavioral change, and it is difficult to know when to assess effects. One way has been to test young people’s knowledge of the disease across several years. In their annual State of the World’s Children report, UNICEF shows country and regional data with two key measures about prevention as they pertain to young people, ages 15 to 24. Table 5.1 presents data on young people’s level of knowledge about the disease from the five focus countries and the sub-Saharan African region as a whole. To be considered as having comprehensive knowledge, respondents must name two major ways of preventing transmission (using condoms regularly and avoiding multiple partners, for example). They must also identify two common misconceptions about the disease (sex with a virgin rids a man of HIV; one can get the virus from kissing). Finally, they must know that one cannot tell if someone has AIDS by looking. Table 5.1 presents these data as reported in 2006 and again in 2009 to reveal change over a period of extensive efforts for change. Here we are, nearly three decades into the pandemic, and still relatively few young people have comprehensive knowledge of the disease in sub-Saharan Africa, and in 2010 fewer young women with comprehensive knowledge than reported in 2006! There have been reductions in Tanzania as well. In four focus countries there have been either small increases in knowledge or no change. Young

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women have lower knowledge levels than young men. In Rwanda, there has been a notable increase in young women’s knowledge to nearly at the level of men’s. But even there, only slightly more than half of young people have comprehensive knowledge of the disease and its transmission. Despite policy statements, program initiatives, and school-based responses, there does not seem to be substantial change in young people’s knowledge. In my view, this constitutes a sizeable failure and raises these questions: Do youth actually hear about and listen to lessons on HIV transmission? And, if hearing about it, do they believe what they are hearing? Table 5.1  Knowledge of HIV/AIDS among 15–24-year-olds, per cent Countries Burundi Rwanda Tanzania South Africa Zambia Sub-Saharan Africa

Comprehensive Comprehensive knowledge, 2006a knowledge, 2010b Male Female Male Female – 24 20 23 49 44 – 20 33 31 31 33

– 30 54 51 42 39 30c 29c 41 38 34 23

a UNICEF, Children and AIDS: Stocktaking Report, Geneva: UNICEF, 2006, pp. 110–13. b UNICEF, Fifth Stocktaking Report, 2010, pp. 43–5. c UNICEF, Fourth Stocktaking Report, 2009, p. 133.

We explored the knowledge level of some children and youth in CHABHA projects in Rwanda and Burundi, using the same questions. The projects have worked to increase knowledge and to encourage change of behavior through Life Skills workshops. Of 19 children aged 11 through 15, 89.5 per cent had comprehensive knowledge. Interestingly, among 20 older youth, ages 16 through 20, fewer, 65 per cent, had comprehensive knowledge. It is gratifying to see the younger children learning about HIV, and, while the older youth are less aware, their knowledge level is higher than that of other young Rwandans. We asked the respondents how they learned about HIV, and every respondent named at least two sources; many named three and four. Most named school and the Life Skills workshops offered in their association. Naming relatives or neighbors who were infected and who had died was also a common response, unsurprisingly, given the membership in the associations of orphaned and affected children and youth.

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Multiple sources for learning about transmission contributed to the relatively high level of comprehensive knowledge. While knowledge is thought to be a prerequisite for change, behavior change is the goal, and regular condom use is an important indicator of behavior. The UNAIDS 2010 report includes measures of condom use among 15- to 24-year-olds with their last sex during the past year with a non-marital, non-cohabiting partner. Males used condoms more than females. Young men in four focus countries used a condom about half the time at their last risky sex (no data for Burundi). Half use is really risky, especially in countries where 13.6 per cent of young women of the same age are infected, as in South Africa. The rate of condom use for females is even lower. Many of these young women may have been having sex with older men who insisted on condom-less sex. The percentages for women ranged from a low of 23 in Rwanda to 52 in South Africa, where it is quite dangerous to have unprotected sex.6 Even though the percentages of young people using condoms at last sex has significantly improved over several years for both females and males in Tanzania and for young women in Zambia, still the percentage of use at last date, 2008, remain low.7 In short, fewer than half of young people have comprehensive knowledge, and fewer than half of sexually active young people use safe sex practices. Methods to try to protect people from infection are either biomedical/technical (for example, male circumcision), behavioral, or include various structured behavioral approaches, described below. 8 There is increasing recognition that there is no one way to approach prevention, and combination approaches are recommended. Biomedical procedures have attracted a lot of recent attention. Researchers have worked for decades to find a vaccine, but, because the HIV virus alters itself and changes over time, a single vaccination has been elusive.9 After years of disappointments, there was some very heartening news in summer, 2010. Researchers from the National Institutes of Health, USA, found two antibodies that can stop HIV strains from infecting human cells. With a third antibody, more than 90 per cent of the virus’s ability to latch on to white blood cells is curtailed. According to the scientists, these antibodies could be used to design improved HIV vaccines, or could be further developed to prevent or treat HIV infection.10 Much work remains as scientists figure out how to stimulate humans to produce the antibodies, and that effort has begun. The day when babies are vaccinated against HIV is a long way off,

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though. Even once there is a viable vaccine, it takes decades to build the infrastructure to inoculate everyone and rid the world of disease. Another component in the arsenal of prevention measures is the creation of barriers to the virus. An example is microbicides, gels applied in the vagina to protect against the virus. There are high hopes for microbicides because women would be in control and could apply the gel well before any sexual activity. Although hopes disappeared in early clinical failures, the effort continued. In July at the 2010 conference, the South African Centre for the AIDS Programme of Research released a study showing a significant reduction in infection from vaginal gel rings that released tenofovir, an ARV. When applied twelve hours before and after sex, the gel lowered the risk of infection by 39 per cent, and by 54 per cent among women who used it frequently. When it is broadly available, women will be able to reduce their vulnerability by applying the gel consistently and in private. Further testing is needed, first, a replication study to confirm the results, and next, studies to determine the best methods for use. Production and access issues are critical challenges, although it seems the gel costs very little and the applicator can be produced very cheaply.11 A third biomedical approach is male circumcision. Several studies show that circumcision lowers transmission between 48 to 60 per cent.12 Moreover, prevalence is far lower in societies that commonly circumcise infant boys, northern Africa for example. There has been considerable discussion and planning to prepare for widespread circumcision; for example, Rwanda plans to circumcise two million men. There continue to be questions about such plans, however, despite the recommendations of the World Health Organization and the Global Fund. For example, male circumcision is only partially effective for men and only indirectly beneficial for their partners. Since some men equate circumcision to a vaccine, they may not use condoms after being circumcised, thereby marginalizing women. Careful counseling is needed. Whether or not men must be tested for HIV prior to circumcision is not resolved, and, of course, if a man is HIV+, it will only mask his potential to transmit the virus.13 Finally, countries in the midst of setting up male circumcision programs must also consider programs for baby boys, but with full awareness of cultural practices, such as coming-of-age rituals involving circumcision. What about the male condom? By contrast with circumcision, using condoms is safe and is nearly 100 per cent reliable when they are consistently and properly used. To use condoms consistently

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requires decisions that must be made over and over. Whether to use or not use condoms is influenced by the attitudes people hold about condoms themselves, by prohibitions people hear from their religious leaders, by their affordability and availability to very poor people, and by their relationships with their partners. A study by Campbell (2003) among sex workers and miners in South Africa showed that sex workers who demanded their clients use condoms did not make such demands of regular sex partners – boyfriends or girlfriends. They believed that asking a regular partner to use a condom would show a lack of trust.14 This appears to be a general pattern among people with multiple partners. Female condoms have the advantage of giving women control. A newly designed female condom has important improvements over the original condoms, which had limited use. Susser writes of women’s positive response to them; moreover, increases in numbers have been reported. And a report indicates women who tried them were positive about the new versions.15 ARVs can be used for prevention in the general public, for they reduce transmission through intercourse. As an infected person’s viral load decreases with ARV medication, they may be less likely to infect sexual partners.16 If more people were on ARVs and started taking them earlier in the disease progression, ARVs could become an important part of the prevention portfolio. There remain serious funding issues, though. It is difficult to imagine ARVs becoming widely available as prevention tools when so many sick people need them as treatment. So far, unless an effective vaccine is developed, none of these biomedical and technical approaches is a foolproof means for preventing HIV. Behavior change is needed as well, and behavior change is complex and difficult to achieve. After all, putting a condom on in the midst of a sexual assignation is a behavior that happens, or doesn’t, in that moment. The remainder of the chapter addresses ways in which prevention programs attempt to change young people’s behaviors. The first to be considered is the approach advocated by religious leaders – abstinence. Abstinence from sex before marriage will prevent infection, no question. Moreover, if two people who are negative at marriage never have sex outside their marriage, they will not become infected. We need to remember that millions of youth and adults are free from infection for just these reasons. The problem is that abstinence touted as the only prevention technique has limited impact given the complexities of people’s

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living contexts. After all, abstinence as the sole prevention approach will not protect girls from sexual predators, wives from unfaithful husbands or husbands from unfaithful wives, nor women who engage in transactional sex. It will not work for many. But among the people who promote abstinence, many church leaders believe it is the only way to change the story of HIV. The Catholic Church has long promoted abstinence, but began to relax that position in late 2010. Still, many religious leaders and politicians continue to adhere to abstinence as the only way to protect young people from HIV, while others see abstinence as interfering with the promotion of other methods.

I was at a meeting of evangelical church leaders in New England, USA a couple of years ago. When I finished talking about our programs in CHABHA, a pastor came up and asked, “Is abstinence working yet?” He did not ask, “Will people practice abstinence?” His question astounded me. How, I wondered, did such a complicated issue come down to this yes/no question?

Religious leaders have influenced politicians, and nowhere is that more evident than in the United States. During the George W. Bush administration, moneys were available to teach abstinence in US public schools, and many states inserted abstinence-only programs in their schools. Among the school abstinence activities reported by Boler and Archer, some were misinformed and ridiculous (my word) such as showing a sperm swimming through a large hole in a condom.17 A 2007 study on the effects of abstinence-only programs in high-income countries showed no impact on young people’s HIV infection.18 It isn’t surprising that abstinence-only programs do not work given the media exposure to sex, peer group influence, and the temptations of transactional sex. In general, no one method is sufficient. Convinced of the efficacy of abstinence, though, beginning in 2003 with its PEPFAR program, the US government required grantees to use one-third of funds for prevention in ‘abstinence-only’ and ‘be faithful’ (AB) programs. That doesn’t sound overwhelming, just one-third, but the rule made people doing prevention work nervous. In their uncertainty about following the funding rules, many overreacted and spent even more than one-third on abstinence and be faithful programs. After complaints became widespread

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during the reauthorization of the PEPFAR bill in 2008, the one-third to be directed to abstinence-only and be faithful requirement was dropped. In its place is a reporting requirement. If countries receiving PEPFAR funds do not reach a “50 per cent threshold of all sexual prevention funding” for abstinence and be faithful programs, they are required to report to the US government the reasons why.19 Many HIV/AIDS workers in Africa have been scornful of the US insistence on abstinence. The Rev. Rachel Mash, a South African Anglican priest, works with several AIDS-related projects and she said this about abstinence in 2005: “In our Diocese we did a questionnaire of our own, church-going youth, kids between 12 and 18. Over 1200 participated, and we found that slightly over one-third were already sexually active. So it makes no sense to talk of abstinence only.”20 Here is how the early, relatively open approach to prevention, Uganda’s ABC program, shifted and changed to emphasize abstinence and be faithful over condom use. Tania Boler and David Archer tell this story: In 2003, the Ugandan government was prepared to present a curriculum in the schools that would solidify the original interpretation of ABC. That was about the time that Uganda’s president and his wife came under the influence of the evangelical Christian right, and the curriculum was withdrawn and rewritten. Abstinence became the main route to prevention, and soon there were virginity parades and abstinence parties.21 The story goes on, though. International politics interfered with Uganda’s receiving enough condoms, and in 2005, that was compounded by the finding of 30 million condoms locked in a warehouse while people had to pay more and more for them.22 Moving beyond abstinence, it makes sense that prevention programs meant to change behavior be based on cultural beliefs and on young peoples’ attitudes toward sex. In Chapter 3 we saw how male aggressive and female passive behaviors are embedded in cultural traditions. People in some African societies, particularly in urban centers, tend to admire dashing, risky behaviors among their young men; moreover, chastity is not as crucial as is fertility in many communities.23 Specifically, people in Rwanda and Burundi, with their dropping rates of new infections, have relatively conservative attitudes toward sexual behaviors compared with southern African countries. Values surrounding gender underscore the need for prevention to fit the context. We have seen that children learn about gender roles and attitudes in their early years by observing, playing,

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through the media, and in talk with adults.24 Attention to gender, not necessarily sex, can and should begin early to allow girls to gain assertiveness and to allow boys to seek less aggressive, fewer peer-stimulated behaviors. Later, when older children and youth begin sexual experimentation, they show remarkable ignorance and denial of the danger they face in unprotected sex. According to a study by MatsosoMakhate and Wangenge-Oume, they act as if they are invincible.25 HIV infection, according to the young South Africans they studied, is what happens to other people. This attitude was held even among youth who had lost family members to AIDS. Many young women feared pregnancy more than HIV, and if they chose to use condoms, it was to avoid pregnancy.26 But generally, they did not want to use condoms – “Sex is not sex if you use a condom” – and besides, condoms cost money.27 When youth hold on to the notion that danger applies to others, not them, and when they support concepts of male dominance in sexual matters, how can behavioral programs move their thinking and behavior? For starters, young people need to be talking with each other and with adults. Helen Epstein offers insight into the value of talk. Contemplating the drop in new infections that occurred in southern Uganda and the nearby Tanzanian region, Kagera, during the late 1990s, Epstein tells of how small, local NGOs responded to the epidemic by helping one another and by talking. “Their compassion and hard work brought the disease into the open, got people talking about the epidemic, reduced AIDS-related stigma and denial, and led to a profound shift in sexual norms.”28 AIDS-related stigma and denial dropped, and there was a huge reduction in infection, up to 60 per cent. By contrast, Epstein tells of the situation in Botswana, a country offering excellent health services even as early as 2002. It wasn’t enough, and “they failed to stir the nation’s conscience.”29 In Botswana, infection rates soared, and even at the end of the decade prevalence was at 24.8 per cent of the adult population.30 It should be noted that the high numbers include many people who are on ARVs who otherwise would have died. Nevertheless, Botswana continues to sustain high numbers of infected people compared with Uganda. The point is that talk is very important, and talk is cheap. Our own experience suggests that talk about personal experience is essential, especially with trusted friends and family. Prevention education is included in many, not all, schools these days, with limited success. Because relatively few secondary school aged youth are in school, 18 per cent in Rwanda, for example,31

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there has been considerable effort to get programs into the lower grades so that overage pupils and others who may drop out do not miss out. Children orphaned by AIDS need to be reached because they are more likely to become infected than non-orphans.32 Anecdotal evidence about school programs suggests that school prevention activities lessen the shaming and stigma that children and youth who have lost parents to AIDS experience. Marie, a secondary school student, said, “They teach about HIV/AIDS and a large number of them understand about HIV/AIDS.” This is an important outcome, but it is far from universal. My own, untested belief is that there is less stigma in schools these days than in the general public. More needs to be done to address stigma. Prevention begins when stigma is reduced so that demeaning attitudes do not interfere with the kind of talk needed for prevention to take place. The question is whether school programs encourage safe sex. Though schools are working to incorporate HIV in the curriculum, there is no direct causative link to behavior change, far from it. Too many school programs have been built on the belief that correct knowledge will lead directly to behavior change. A study in Tanzania, for example, demonstrated that school programs influenced knowledge and attitudes but had no effect on behavior change, incidence of STIs or pregnancy.33 The preferred teaching method emphasizes knowledge, and that is part of the problem. It is easier to teach the facts than to delve into the more embarrassing issues surrounding sex. School programs have tended to discuss the progression of the disease as if it were happening in an antiseptic, non-painful context. Information is put forth without regard to the social and cultural experiences of the people involved. But with young people it is crucial to get to the heart of their experience and avoid such a reductionist approach.34 Young people must be involved. A recent study confirms the value of talk with adolescents, but talk that feels meaningful. In two different regions of South Africa, secondary students said they found the HIV prevention talk in school boring, and what they wanted was “more engaging, open, frank conversation.”35 A program in Mozambique illustrates the value of student involvement. Kindlimuka was a year-long course which engaged students in games, discussion, stories, jokes, direct instruction on how to use condoms (wooden penis replica), and peer educator programs. At the end of the year the teachers revealed their HIV positive status to their students thus making the disease real and close. One teacher said, “You cannot teach HIV like a normal

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subject. It is not something you can pass an exam on. The key is to get children to internalize – to change their behavior – not to pass a test.”36 Many projects that work with impoverished children and youth affected by HIV/AIDS hold workshops to address a number of issues, HIV prevention being one. What follow are observations of lessons from two of the CHABHA projects that exemplify many of the issues of teaching about prevention. In both cases, youth leaders planned to include HIV prevention education. In one village, the leaders asked a local nurse to design the teaching and to be the teacher. In the other, the leaders chose two of their own to lead the lessons and found a curriculum to their liking.

Village A. A nurse was asked to teach about HIV prevention to a group of 50 eleven to 14 year-olds. A man of about 45, the nurse stayed at the head of the classroom, used no artifacts nor presented any charted information. For the most part, he used lecture interspersed with a few questions, mostly about the stages of disease progression. He did ask how HIV is transmitted, and many hands went up. A young girl said that transmission occurs in sexual intercourse. The teacher agreed and then talked about blood exchange when there is a cut. Oddly, when listing ways to avoid infection, along with sex with correctly used condoms (no elaboration on “correct”) he included not using sharp tools, not playing with someone with bloody cuts, and not to touch someone who is bleeding. The lesson neither recognized the children’s familiarity with HIV/AIDS nor provided information on how to protect themselves. Despite being a nurse, he did not talk about sex.

In the other village, participants experienced a quite different workshop.

At another time, Village B, with another group of 28 older youth, ages 15 to 18, Robert, one of the young leaders of the organization, someone the group knew and trusted, stood at the front with a dildo and condoms on the table before him. He and the participants reviewed the facts of the disease they had learned in school in an easy give and take, with important information written on the board. Then Robert demonstrated safe use of

„

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condoms with the dildo. Serious questions and discussion followed. For example, one girl asked whether girls had to agree to have sex, and all agreed that girls as well as boys needed to agree just as both the boy and the girl had to agree about using a condom. Robert talked about ways to show affection other than intercourse. They established where to get free condoms. Throughout, the atmosphere was open and serious.

The differences in these two lessons could not be more reflective of the problems in teaching prevention. It is difficult to imagine teaching a lesson about a fatal disease without talking about the human activity that enables its transmission. Yet the nurse who led the first workshop did just that – he never talked about sex. As a result his information was very unrealistic. Sadly, this is common in schools and even with parents.37 By contrast, Robert seemed totally comfortable talking and demonstrating how to put on a condom and talking about rather personal issues, as did his students. Robert drew out the students’ knowledge and went further in talk about sexual behaviors. Robert led a good give and take that demonstrated the considerable trust and familiarity among the workshop participants. He knew their circumstances and could move the discussion beyond the facts. The rich community interaction involved important questions and issues of gender and power, faithfulness, use of condoms, and appraisal and avoidance of dangerous situations. We don’t know the outcome of the workshops, and there are many other occasions for the participants to learn about HIV and safe sex. It isn’t just guesswork to suppose that the lesson in Village A will have little effect on the youngsters attending while the second, Village B, may lead to more careful behaviors, such as talking and negotiating about having sex, whether to use condoms, and the like. There are many prevention programs across sub-Saharan Africa, and sampled below are three. RAPSIDA A very creative approach used in some Rwandan secondary schools uses drama with students and addresses stigma and risky behavior directly. One or two staff of RAPSIDA – Rwandans and Americans in Partnership against SIDA (AIDS) – work in schools for some months with a small core group of student volunteers

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who engage the entire school in talk about HIV. A core group gathers stories from people affected by HIV/AIDS and weaves events and experiences into a short drama. When ready, the group invites the entire school to a presentation, a time of truth-telling, and discussion. At one presentation, a mother and daughter whose enormous difficulty in communicating with one another about their HIV status was the topic of the play. The two were there to testify to their communication issues and their relationship. In this way RAPSIDA draws on the real experience of students and fosters open talk. One such result is on the film Ingabire.38 Soul Buddyz An enormous challenge is creating interactive involvement on a large scale. A program called “Soul Buddyz” was developed for children aged between eight and twelve in South Africa, an appropriate age to introduce HIV/AIDS. Soul Buddyz consists of television episodes, radio programs, clubs, school booklets, and lots of complementary materials. Evaluations suggest many children watch the programs and a high percentage enjoy them and learned a lot about the disease, much more than the general knowledge level for South Africans between 15 and 24. The children’s attitudes improved and stigma was reduced.39 LoveLife LoveLife is another multimedia program. It is a huge safe-sex program in South Africa targeted at 13- to 17-year-olds. The Kaiser Family Foundation has been a main funder, along with South African government and businesses. The Kaiser Family Foundation describes loveLife on their website “as a comprehensive, evidence-based approach to youth behavior change that implements, on an unprecedented scale, the international experience of the last 20 years – combining well-established public health techniques with innovative marketing approaches to promote healthy AIDS-free living among South Africa teenagers”.40 In addition to the multimedia campaign, loveLife has a clinic initiative that is adolescent friendly, youth centers, outreach and support in 3500 schools, and a toll-free number for private consultation. The Kaiser Family Foundation reported on evaluations: many youth have been exposed to the program (85 per cent) and its products (two-thirds). “There is a strong correlation between exposure to loveLife and self-reported sexual behaviours, including increased abstinence, choosing to delay

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initiation of sexual activity and increased condom use. Participation in loveLife programs is statistically associated with lower odds of HIV, taking into account other likely explanatory factors”.41 It certainly sounds like a winner, but has it made a difference? Given the size and cost of loveLife and its intention to halve the infection rate among young people, it would be important to explore independent evaluations to explore whether this elevenyear-old effort is making a difference in reducing the number of new infections. Looking at country-wide data, we find different interpretations. For example, a study comparing new infections in South Africa between 2002 and 2005 with the 2005–2008 period showed that a significant drop had occurred among 15- to 24-year-old women; additionally, the study indicated that there has been a significant increase in condom use.42 Another report stated a rise in multiple partners.43 Because testing of pregnant women has been a source for measuring the breadth of the epidemic since the beginning, the annual antenatal survey tells its story. The 2010 report shows the epidemic stabilizing at very high levels, at about 29 per cent among pregnant women. Mark Heywood, Deputy Chair of the South African National AIDS Council (SANAC) said, “We’re not getting on top of the HIV epidemic, at least, as far as prevention is concerned. It shows that there are still very high numbers of new HIV infections … it points to our short-comings and our inadequacies, and it tells the Department of Health and SANAC that they have to do more to get this thing right and, actually, we’re not getting it right this moment in time.44 All reports indicate that the epidemic continues to grow in KwaZulu Natal. We really cannot conclude that loveLife is making a difference to new infections. LoveLife has critics who complain about cost and outcomes. LoveLife is expensive – it cost the equivalent of 20 million dollars in 2003, according to Helen Epstein.45 It has been described as an “in your face” mass media program. These writers noted that the youth presented on the loveLife billboards of chic multiracial youth represent the privileged, and not the young impoverished people of the townships.46 Perhaps that is why only 27.2 per cent of respondents indicated that the billboards made them think. 47 Moreover, there is no evidence that media campaigns are associated with change in risky behavior.48 One paper noted the extravagant goals, the expensive start-up, and the picture of South African youth as hypersexual, bent on materialism, and ideological.49 The programs are a far cry from the kind of personal talk that seems to

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be associated with change. It appears that loveLife has not fulfilled its goals. What should improved prevention programs for youth look like? First of all, the programs need to be tailored for the recipients so that they fit with how the epidemic is being spread and how people might respond to various activities. The use of the plural is intended here: there need to be combinations of approaches including structural changes. For example, increasing women’s financial contributions to the family may ultimately provide greater security and ability to negotiate sex. Combination prevention reflects the complexity of the disease and offers hope for a changed future.50 More money is required for localized, combination programs as “developing countries and donors currently spend US$2.50 on treatment for every US$1 allocated to prevention.51 Members of the target group need to be involved in planning, and adults must listen to them rather than just tolerate them. The planners need to learn how the disease is spread so they know the pressure points to aim for. From there, the planners should identify their specific goal or goals. Activities that youth members feel would be comfortable for other youth are considered. Open talk is needed during planning and in implementation youth leaders and participants need to be in safe groupings and led by a trusted and knowledgeable person who can be comfortable talking about sex and engaging others. There needs to be plenty of time and encouragement for talk, including talk about loved ones lost. Some important considerations include adolescent feelings of invincibility, the dangers of power imbalance by gender, the risks involved in alcohol consumption, and having multiple partners. Free condoms should be made easily accessible so that cost is never an issue in deciding to use one. In combination, all of these efforts to maximize prevention should move to the highest priority. HIV/AIDS continues to be an enormous problem, especially in southern African countries. Greater efforts toward prevention are required to bring the incidence of new infections under control. Biomedical technical efforts are critical, but because of the nature of sex in our lives – its surprise, pleasure, potential for deep embarrassment – behavior change will continue to be important. Major structural changes are ultimately required as well, changes such as more schooling and vocational training for youth, inclusion of teacher training to improve school programs and, especially, inclusion of children and youth in program planning and implementation.

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6 Poverty and Children’s Wellbeing

The relationship between HIV/AIDS and poverty goes in two directions. In one direction, poverty impels HIV. Impoverished people are more likely than rich to engage in risky sexual behaviors, such as sex for money, and to become infected. In the other, HIV also causes poverty. The income of families with one or more infected persons drops, especially without successful treatment.1 These two relationships particularly affect children and youth. Affected youth engage in risky behaviors. Many affected children, especially those whose parents have died from AIDS, live in poverty and experience clusters of problems such as ill health, lack of education, undernourishment, and abuse. They are by no means the only children living in these conditions – millions of other African children live in extreme poverty as well. The impact of poverty seriously affects children’s development and reduces their opportunities for independent, healthy, and creative adulthood. When there are large numbers of such children, their communities and societies suffer as well. Yet poverty is what many in sub-Saharan Africa know as a way of life. As one of our staff members said, “The problems of the poor – there won’t ever be an end.” An international effort of enormous proportions was launched in 2000 to prove such fatalistic thinking wrong. The 189 member countries of the UN agreed to the effort embodied in the Millennium Development Goals (MDGs). To counter widespread poverty and related problems, these members agreed to meet the eight MDG goals, with their 18 targets, by 2015. Most of the MDGs affect children. For example, the number of underweight children is an indicator of one of the targets of MDG #1. Government officials, community leaders, and national and multinational NGOs have been putting great effort into achieving the MDGs, with notable progress since 2000. Fewer children die before the age of five. Children have greater access to some health services, such as immunizations. More children have access to safe water, though not nearly enough. Has there been enough progress to suggest the goals will be achieved? It seems not, at least overall for children 82

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1. Eradicate extreme poverty and hunger • Halve, between 1990 and 2015, the proportion of people whose income is less than one dollar a day • Halve, between 1990 and 2015, the proportion of people who suffer from hunger 2. Achieve universal primary education (Chapter 7) 3. Promote gender equality and empower women 4. Reduce child mortality • Reduce by two-thirds, between 1990 and 2015, the under-five mortality rate 5. Improve maternal health 6. Combat HIV/AIDS, malaria, and other diseases (other chapters) 7. Ensure environmental sustainability • Halve, by 2015, the proportion of people without sustainable access to safe drinking water and basic sanitation 8. Develop a global partnership for development

in sub-Saharan Africa. As I write, two-thirds of the way to the end date, 2015, it is discouraging to read: “Sub-Saharan Africa has fallen behind on almost all of the goals and will need to redouble efforts in all areas of child survival and development.”2 Although there has been progress in the region, it has not been sufficient and lags behind other parts of the world. Moreover, there are issues of equity. It seems that where progress has occurred it has neglected the poorest and most in need.3 Major structural impediments exist; the most serious is lack of access to food, worsened by the global economic downturn begun in 2008. During the first three months of 2008, international nominal prices of all major food commodities reached their highest levels in nearly 50 years, and prices in real terms were the highest in nearly 30 years. The price of vegetable oils increased on average by more than 97 per cent during the first month of 2008, followed by the price of grains, which rose 87 by per cent; dairy products, which rose by 58 per cent; and rice, which rose by 46 per cent.4 That was 2008. At the start of 2011 the UN Food and Agriculture Organization reported that food is even more costly than at the peak of 2008.5 Bad weather has combined with weakened agricultural practices and international interference. For example, recent agricultural production to support the development of biofuels rather than food precipitated some of the crisis. Agricultural production has diminished due to climate changes, much more advanced in

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countries near the equator than in temperate zones. A lot has to do with the rich countries (yes, the US and Europe) subsidizing their own agriculture and driving down food production in the third world. Moreover, foreign investors have been making deals to farm large tracts of land in Africa that bypass local people.6 Although there appear to be recent efforts to improve productivity, continued problems in this area have negative impacts on vulnerable children. This chapter addresses the health and wellbeing of poor children in Africa by analyzing progress toward the MDGs. It includes other markers of children’s protection as well. We begin with poverty, MDG goal 1. Being poor in rich countries, unfortunate and difficult as it is for folks who do not have health insurance (in the US), who have lost jobs, who are homeless, is a far cry from the extreme level of poverty experienced in the developing world. In many countries of the developing world, children face deep hunger, inability to get help, and exclusion from their rights as set out in the UN Convention on the Rights of the Child. We can begin to imagine the huge gap between rich and poor countries if we compare country per capita income. Per capita income in one of the world’s industrialized nations, for example, averages US$38,579 a year. But for a person born in sub-Saharan Africa the average per capita income is only US$965 a year. South Africa has a very high gap between rich and poor, so its relatively high, US$5770 per capita, income masks the deprivation experienced by about 26 per cent of South Africans who live on less than US$1.25 a day. Other African countries have much lower per capita income, as low as US$150 in Burundi, where 81 per cent of the people live on less than US$1.25 a day. Burundi is among the poorest nations of the world.7 One can imagine income disparity this way: In many poor countries people live on less than a US$1.25 a day. Certainly, one can get more for US$1.25 in most of these countries than in the West, but even in Third World countries US$1.25 is not nearly enough for healthy nourishment, never mind other necessities. Many people have less than that! In Tanzania, for example, 89 per cent of the population lives on less than US$1.25; in sub-Saharan Africa, about half the people have less than that as well.8 Life expectancy measures provide yet another way to assess the impact of poverty and AIDS. AIDS has caused significant loss, even erasing decades of progress. Now, across sub-Saharan Africa, life expectancy is only to age 53.9 “In five of the six sub-Saharan African countries where life expectancy is lower than it was in the 1970s, this decline has been directly linked to HIV/AIDS.”10 These rates are

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now so low that they match those in Europe at the beginning of the twentieth century.11 My youngest grandson, born in the US in 2008, can expect to live to 2087 or so, while a baby born in sub-Saharan Africa the same year can expect to live only to 2061. Think of it, 26 years’ difference! Extreme poverty is no small matter.

I met extreme poverty on a visit to the home of a girl, Celine, who, with her brother, lived with an aunt and the aunt’s five children in a three-room mud brick house with a leaking roof. Celine and her brother were orphans to AIDS, and their aunt had taken them in despite her own situation – not one person in the house had a job, and the aunt was HIV+. She didn’t have the money to pay the equivalent of US$10 a month for rent. There was no electricity. The toilet was a filthy latrine some distance away and shared by others. They had a couple of chairs in the front room. There was a small charcoal cooker about 6 by 8 inches outside the front door. There were no books, toys, radio, or anything to occupy the family. I asked another girl, Josephine, if she ate every day, and she said, “No, not every day.” Another girl, Eliane, when asked about food, said, “Really there is no formula about this. I don’t know how we survive. Sometimes we get food from our neighbors. For me to tell what is going to happen tomorrow or after tomorrow, I can’t tell.”

Measures of underweight conditions in children over time determine whether there have been reductions in the number of people who suffer from hunger, a target for MDG 1. According to Save the Children UK, this measure is far better than income because it reveals the real numbers of children in need.12 And we find that matters are not improving. More under-five children in sub-Saharan Africa were undernourished in 2005 than in 1980.13 Studies have shown that more orphans than non-orphans are stunted and underweight.14 Recent data on moderate and severe underweight among children under age five in the focus countries are discouraging: Burundi, 39 per cent; Rwanda, 23 per cent; Tanzania, 22 per cent; South Africa, 12 per cent; and Zambia, 19 per cent. For sub-Saharan Africa as a whole, 27 per cent of young children show these signs of malnourishment.15 Such a far cry from the West’s problem of childhood obesity! Stunting among under-fives is another measure of malnourishment and poverty, and here, too, the data are discouraging. In Burundi,

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more than half the children are moderately or severely stunted; in Rwanda nearly half.16 Even though I am relatively experienced in estimating children’s ages and aware of stunting in Africa, I can still be amazed by the reality – for example, when meeting the boy from Bujumbura, Burundi, who I conservatively judged to be twelve but turned out to be 17. Stunting is a tragedy for children’s futures that cannot be undone. Not only are stunted children physically limited, but their impairment often extends into their cognitive development as well. There are, in addition, generational effects: many stunted and malnourished girls who become pregnant early experience great difficulty in childbirth. MDG 1 will not be met in sub-Saharan Africa according to UNICEF.17 As for the near future, with recent increases in food costs, it will be difficult to even sustain current levels. Poverty cannot be easily fixed, for it is the result of complex factors. Not only is poverty among children revealed in data on underweight and stunting, child mortality reflects nutrition and also maternal and infant wellbeing. MDG 4 refers to under-five child mortality (U5CM), and, to meet its target, regions and countries must reduce child deaths by two-thirds by 2015, 25 years from their baseline child mortality data of 1990. Child mortality is a reliable barometer of a country’s care for its youngest children for it reflects the availability, or lack thereof, of maternal wellbeing, nourishing food, and the availability of health services. Worldwide in 2008, the U5CM rate was 65, meaning that of 1000 children, 65 died before they reached their fifth birthdays. The figures for child mortality rates in Africa stand in great contrast to the worldwide figure. In sub-Saharan Africa in 1990, 184 children of every 1000 died. That’s a huge number, and we would hope that 20 years later, in 2010, there would be improvements. The number has decreased, only to 144 children. In the few years left to 2015, it is difficult to imagine that sub-Saharan Africa will reach its target figure of 61.18 Table 6.1 presents data for the focus countries. Four of the countries show improvements between 1990 and 2008, but considering the years, the trend does not suggest that countries will reach targets in the few years left, especially in Burundi, South Africa, and Zambia. A comment about South Africa: its increased childhood mortality rate reflects the high level of HIV/AIDS among very young children. While in Burundi, only 1 per cent of child deaths were due to AIDS, 46 per cent in South Africa were.19 A recent study found a strong, direct impact of mothers’ education and mortality. The more years of schooling mothers achieved the less likely their young children

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will die before age five. For every year of school, the rate of child deaths is reduced by 9.5 per cent.20 The average years of schooling for women among three of four of our focus countries (no data for Zambia) is low: Burundi, 2.0; Rwanda, 2.8; Tanzania, 4.0, and South Africa, 8.5.21 The direction of education and child mortality is strong enough to hope for substantial future changes as more and more girls go to school and stay there. Table 6.1 Under-five mortality rate, number of under age five deaths per 1000 live births Countries Burundi Rwanda Tanzania South Africa Zambia

1990

2008

Target 2015

189 168 174 112 157 104 56 67 172 148

63 58 52 19 57

Source: UNICEF, Progress for Children: Achieving the MDGs with Equity, Geneva, UNICEF, 2010, pp. 56, 58–9.

There is something else to consider, and that is the question of equity in socioeconomic terms. Some countries have made positive efforts to equalize the chances of both poor and rich children reaching their fifth birthdays. Others have focused their efforts at the richer sector. Of the 68 countries in the Save the Children UK 2010 study on child mortality and equity, nine were notable not only for reducing child deaths but also for reducing significant gaps between children of rich and poor families. Of the focus countries, Zambia was one. Tanzania was reported as making little change and Rwanda as losing ground. In Rwanda more poor children died in 2005 than in 1992. At the same time, among richer Rwandan families child death numbers were much improved.22 The years of this study identified the start near 1990 and the comparison year, 2005 or 2006, so it may be that there have been increased equity efforts since then. Decision-makers will in future need in-country data to know if there are inequities, and, of course, they need the will to improve the chances for all children to live. Donor countries have promised greater funding for maternal, toddler, and early childhood health service. Perhaps if those promises materialize and money is spent to equalize child health at all economic levels, to improve parent education, and to provide nutritional support where it is lacking, the story will improve. Partners in Health (PIH), a community-based health program,

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includes child survival efforts that make a difference. PIH is a model of critical services that include interventions such as the promotion of integrated mother and child health, education for the mothers, strengthening of pediatric AIDS treatment, research and training for rural health care, enhanced food production, and placing these efforts within a program of children’s rights.23 It is an effective example of holistic efforts to reduce the loss of young lives. Pervasive in most parts of Africa, malaria can be very dangerous, and its eradication is also part of MDG 6. I learned about how common malaria is at a program meeting in Kigali, Rwanda. As we were assembling, the talk among the young adults turned to malaria. When one young woman said she had never had malaria, everyone was amazed because most people they knew, including themselves, had had bouts of malaria. Malaria does not stand alone. These young adults were healthy and had not been severely damaged by malaria. For underweight children or those compromised by HIV/AIDS, malaria can be quite dangerous if not aggressively addressed. The incidence of malaria is reduced by simple and inexpensive means. Insecticide-treated nets can be purchased for about US$5.50 (plus US$2–US$3 for distribution) and are effective for five years. When several nets are used in a dwelling, malaria mosquitoes are even less likely to affect families. There have been improvements, but recent data show that still, only 20 per cent of under-fives sleep under treated nets in sub-Saharan Africa.24 And even fewer are treated with appropriate drugs. There are improvements here and there, but a UNICEF report points to the fact that children from rich families are four times more likely to sleep under treated nets than poor children.25 Poor and undernourished children, especially those who are HIV+ positive with compromised immune systems, and who live in crowded conditions are susceptible to a variety of diseases. In some areas HIV+ adults and children also suffer from tuberculosis, a very complex combination. Simpler illness are common in children. Pneumonia and diarrhea are the leading causes of child death, yet fewer than half of under-fives suspected of suffering with these diseases receive medical support.26 Unsafe water and poor sanitation contribute to diarrheal diseases. Targets for achieving MDG 7 include improved water and sanitation. Progress toward improved water availability has been very uneven.27 In 1990, the baseline data year, 49 per cent of people in sub-Saharan Africa had access to improved water. By 2008, this had risen to 60 per cent. Has this been enough? According to the Millennium Development Goals report, it has not.28

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All over Africa women and girls (mostly) carry yellow plastic water buckets or jerry cans to a communal water source every day. People wait their turn at the pump and get the day’s water. The water in the cans is used for drinking, cooking, and washing – in short, everything. In an unincorporated area I visited in South Africa, east of Johannesburg in the Eastern Rand, some 30,000 persons had built shacks for their families. All 30,000 shared two spigots. There the problem is twofold: accessibility and cleanliness. There has been very little progress in basic sanitation. In sub-Saharan Africa 44 per cent of people had access to improved sanitation in 1990; 18 years later, in 2008, it was only 51 per cent.29 None of the focus countries is expected to meet their target. Since it is neither complicated nor very expensive to build and maintain sanitary latrines, the lack of change is truly unfortunate. But even without widespread latrines, hygiene can be improved. People must be helped to create and maintain sanitary conditions through some simple procedures. If there were consistent hand washing, for example, it would reduce child deaths by 45 per cent.30 Because people don’t have access to a sink or running water for hand washing, other methods are necessary.

Two North American nurses, Hilary Ware and Alison Whitney, who were visiting CHABHA projects in Rwanda, presented a workshop to project leaders. First they graphically taught about how disease is transmitted. All the participants put on hand cream, and one had glitter, representing germs, sprinkled on her hand. She then shook hands with the person next to her; he did the same with the next participant, and so on around the circle. As the glitter stuck on hands way around the circle, everyone quickly connected the activity with transmission of germs. It drove home the need for hand washing. Then they learned how to make “Tippy Taps” for hand washing. Using an approach originally from Zimbabwe, the nurses showed how to fix large plastic bottles so that when filled with water and tied to a tree or doorway they can be tipped over to wash using the soap also tied next to the water. Inexpensive, easy to make, and potentially powerful, Tippy Taps could become a simple and inexpensive way to sustain health.

In contrast to data about water and sanitation, immunizations of children have increased substantially. While just a few years ago only 58 per cent of all children in sub-Saharan Africa received measles

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vaccinations, data from 2008 show that 72 per cent had been vaccinated for measles.31 Similarly, more children are vaccinated against TB, polio, and hepatitis. Aid workers and local people are building infrastructure to reach out to children for immunizations. The unevenness in progress – slow progress toward achievement of some MDGs and more rapid progress toward others – deserves attention. Improvements are more likely to occur when the change involves straightforward technical agents. For example, mobilizing to provide immunizations is relatively easy to evaluate – number of children immunized. By contrast, achieving significant progress in reducing poverty, increasing nutrition, and preventing child deaths is far larger and more complicated, taking many steps, sustained efforts, and collaboration. Moreover, some efforts may not appeal to donors. Donors may be drawn to specific activities – buying nets, providing for immunizations – more than to sanitation systems. A case in point is Rwanda, where funding streams have resulted in notable unevenness toward reaching MDGs. The very high provision of ARVs to Rwandans contrasts with the fact that about half of its young children are moderately or severely stunted. Rwanda is using its external international and bilateral funding support for its HIV/AIDS programs as intended by the donors, but has less external funding for building nutrition among its poor and rural children. Government policies are currently trying to equalize progress, and Rwandans can hope for better nutrition figures in the future. The point is that funding streams and aid flow into poor countries influence country priorities. Small improvements in levels of nutrition have occurred for children in sub-Saharan Africa; however, these improvements are too small to achieve the MDG targets by 2015. Indeed, one report states that the decrease in undernourishment between 2000 and 2010 was a mere half per cent, worsened by the financial and food crisis.32 This continuing situation despite years of effort and lots of money is disheartening. Broad-based airing of the crisis may awaken key people, but the messages must be clear and accurate. Sometimes the story confuses the issue and the hides real conditions. For example, the UNICEF report on progress for children includes this headline: “All regions have made progress in reducing child underweight prevalence.” Yet in sub-Saharan Africa between 1990 and 2008 the reduction in child underweight was only from 31 to 27 per cent, as displayed in a graph under the headline.33 Yes, there was a reduction, though inadequate for meeting the target, or even progressing very much. The problem here and in other reports is

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that in presenting worldwide trends regional and country change is hidden. Data presentations can also cover important differences within countries as in the Save the Children UK report, A Fair Chance at Life: Why Equity Matters for Child Mortality, overall country data concealed deep and troubling inequities in child mortality. Countries that seemed to be progressing well according to country data were actually doing so by providing services to richer families rather than changing the outcome for poorer, hard-to-reach, and marginalized families. Some countries have focused their efforts where progress is easier to obtain. “Some argue that the MDGs in their current form encourage a focus on ‘low hanging fruit’ – interventions that target the better-off in society – which in turn sharpen inequalities and prolong injustice.”34 Overall, although there is positive movement in sub-Saharan Africa, it has not been enough to reach most MDGs, and in the years of effort another generation of children continues to experience poor health and poverty. Children need to be recognized and their wellbeing prioritized, especially the wellbeing of neglected and impoverished children. Community leaders, politicians, governmental ministries, and donor programs must put children on the main page, and implement effective changes. To continue at current progress levels means that the kind of development that African countries seek will remain elusive. Each generation of at-risk children will grow up (if they do) unable to participate fully in civil society. Moreover, risks to disadvantaged children go beyond the MDG measures, for when they are desperate many turn to or are coerced into dangerous behaviors. CHILD PROTECTION A first, basic protection is birth registration. To be registered at birth may not seem important but unregistered individuals have limited access to services, national policies and procedures. As many as two of three children born in sub-Saharan Africa are not registered, and therefore cannot claim protection on a full and equal basis with registered children – in the focus countries from few in Zambia, 14 per cent, to 92 per cent in South Africa.35 Clearly some countries put more emphasis on registration than others. That said, there is also the question of ease of registration. Poor, rural, uneducated parents often do not understand the value of registering their children. They may live a good distance from the registration office,

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and, moreover, they may be charged a fee. And for some people, there may be a general unwillingness to interact with authorities. Difficult, dangerous circumstances result in unprotected children taking on adult roles, being exploited, and having no way to realize their rights. Forced labor, early marriages, child soldiering, child trafficking, and transactional sex occur throughout the world, but are significant in Africa because of the interaction of poverty, sickness, and lack of education. HIV/AIDS has exacerbated these problems. Even though children might take on adults roles, or are thrust into them, they lack the physical, mental, or emotional capacity to cope as adults. Their exclusion from childhood mean their lives are shortened and the quality of those lives compromised. For example, there are many variations of childhood abuse. A teenage girl I interviewed, a 16-year-old whose parents had died of AIDS, told of her life of fear and abuse. Elise and her brother lived with a great-uncle she referred to as “Grandfather,” another sibling, a younger sister, lived with other relatives too far away for her to visit by walking. She experienced tremendous fear during the times her older brother was away at boarding school. My grandfather gets drunk and treats us badly. For example, I do not sleep at home. He comes in. He can even cut your head. I go to our neighbor. I have to run away. When my brother is at home, at least he can protect us. Me alone is a problem. He is useless for us. Normally he has a machete when he is angry and drunk. He can beat you. One time he tried to do it. He came in the room. I was sleeping. I woke up and he was there with a machete. So I ran to the neighbors who know the problem. About one out of three nights I go to neighbors. I asked if they could protect me. They can do nothing more. On top of the fear of her relative’s abuse is her poverty and lack of food. “At home when he sees no food or no time to cook, he shouts at me. ‘Why don’t you prepare food for me?’ He has never given me money.” Elise goes home from school at lunchtime, but usually there is no food. “I just wash my face and go back to school.” Is there help for Elise? “We went to the police – to the local leaders. Then they said they can’t do anything even though they know him and what he is doing. On holidays we try to go away. He never says anything when we go away. He would be happy if we left for good.” The association that Elise belongs to has since made sure she is staying at a school with a dormitory. Her story

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nevertheless suggests how vulnerable young people are to abuse where there is insufficient social service. As is unfortunately true for millions of poor children in Africa, such as Elise, the problems they experience come in clusters. Similarly, many children, especially orphaned children in foster homes, may be mistreated and if not protected may be subject to sexual abuse.36 Another form of exploitation is child labor. HIV/AIDS has forced many children into work. As a result, in sub-Saharan Africa the number of children in labor continues to increase while in the rest of the world, the number is decreasing. In sub-Saharan Africa 33 per cent of children ages five to 14 are involved in labor.37 They are farmers, miners, construction workers, haulers, street vendors, and house servants. Many boys work on plantations; girls become household help. Most work in the informal economy and are not protected. In many instances, children who work do not receive wages, thus becoming, in effect, slaves. Many work to find money to sustain themselves and their families. In Zambia orphans are twice as likely to be working as non-orphaned children.38 Children involved in labor lead bleak, excluded lives. But it is also true that while it is abhorrent, starvation is worse; in many circumstances child labor is necessary. Early marriage is yet another way in which children are made vulnerable. In the focus countries, young women between 20 and 24 who reported having been married or in a regular union before age 18 ranged from nearly 6 per cent in South Africa to over 42 per cent in Zambia, where early marriage continues to be a serious problem.39 Girls forced to marry as young teens are also excluded from school and an independent future, exposed to abuse, and not protected. Often, parents seek early marriage for their daughters for the bride price. Many girls become pregnant when they are still growing. With small pelvises, many suffer during childbirth. The damage can be serious, such as a condition called “obstetrical fistula.” In fistula blood is cut off to the tissues between the vagina and rectum or bladder, and holes open so that the victim cannot control the passage of urine and feces. In Africa alone, there are as many as from 30,000 to 300,000 new cases of fistula a year.40 Relatively simple operations can restore normal functions, with high success rates, but too many young women are unable to get help and instead are excluded, shunned and live and die in great shame.41 And child soldiers. Child soldiers have been featured in books and films: A Long Way Gone: Memoirs of a Boy Soldier by Ishmael Beah, for example. Child soldiers are boys and girls younger than 18 who

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either joined or, more likely, were forced into armed conflict. While there are child soldiers in the Middle East with armed opposition groups, Africa is home to the most child soldiers. In some nations, such as the Democratic Republic of Congo, armed conflict has haunted children their whole lives. There are no clear statistics on the number of child soldiers, but they may number into the hundreds of thousands. As nations enter into new conflicts, more children are recruited. Rehabilitation takes time, money, skill, and persistence. How does it happen that children end up in war? In many cases, they are abducted. Rebels arrive in a village, kill some people, and take others hostage. A former child soldier taken when 13 said, “When they came to my village, they asked my older brother whether he was ready to join the militia. He was just 17 and he said no: they shot him in the head. Then they asked me if I was ready to sign, so what could I do? I didn’t want to die.”42 Both boys and girls are abducted, and estimates suggest that about 30 per cent of children in the military are girls who are often given in ‘‘marriage’’ to be sex slaves of soldiers.43 They may also be forced to work: cook, carry, as well as shoot. Sexual abuse trafficking is an enormous problem facing unprotected children. Some children who become household help are sexually abused. Others are abducted and placed as prostitutes, some sent to Europe or North America and others kept in their own nations. It is very difficult to respond to child abuse in these situations because they are most often held in secret, even hidden from neighbors. Have you, like me, struggled about whether to help street children who beg for money? What do you do when five boys appear at your car window? If you give some money to one, more come. I hate these moments. I know that these particular children, usually boys between ten and 14, probably really do need help. And there are millions: UNICEF estimates is that 10 million children, worldwide, are on the streets.44 The numbers have increased because of AIDS. We can imagine why children end up on the street. In many instances, family members have died, and no one is available for help. Homeless street children live in abandoned buildings, containers, automobiles, parks, or on the street itself. Other street children have been sent out to beg by their families, and they remain on the streets during the day and go home at night. These children are at risk, but not at the same level as the homeless street children. Yet, like those who are homeless, they, too, are vulnerable to sexually transmitted diseases including HIV/AIDS, and to addiction to inhalants such as

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shoe glue and paint thinner. These substances dull the hunger and despair but can cause kidney failure, irreversible brain damage, and even death. In conclusion, it is clear that poverty leads to poor health, early death, exploitation, and abuse. As problems mount and children stop school, try to find work, have little nutritious food, suffer from untreated illness, and become prey to dangers of all kinds, they exist on the margins of society and are invisible. The traditional African “safety net,” family and community support, is no longer available in areas of high HIV/AIDS prevalence because there are more orphans than there are families able to care for them. These children will not show themselves at government or at big NGO offices. They won’t knock on the door of USAID in Kigali or Lusaka. They are, however, coming to the attention of people who can speak up on their behalf. As decision-makers learn about country performance, overall and in economic groups, they can determine where to place priorities for children. Pressure and information will encourage political efforts to make the significant structural changes that must occur for alleviating poverty among children. To that mix, we must add education, the topic of the next chapter.

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7 Education: A Basic Human Right

African children know that they have to be in school and succeed there to achieve their hoped-for futures. Sadly, too many have to drop out because their parents are sick and can’t support the family, and there simply isn’t enough money. Others drop out because they have to farm or work, and care for siblings and/or sick adults. Children who have dropped out are very eager to return to school, for they know their future depends on being educated. Over and over the children I have talked with who have been out of school say, “I want to continue my studies.” When she got to go back to school after a hiatus caused by her orphan status, Louise said, “Now that my school fees are paid, it changed my life. Now I am happy because I am studying.” When children have been out of school for a time, it is difficult to return because they are unpracticed and old for their class. Yet many I’ve talked with are determined to succeed. “I stopped for more than one year. Now I am earning 76 per cent marks. I work very hard.” It isn’t easy for children with significant home responsibilities also to manage school. For example, 15-year-old Marie has a hard time meeting the needs of her family along with the demands of her schoolwork. Marie is the head of her rural family of four. “I really wish to continue my studies and finish. So at least I can get a job. But I don’t think this will be possible for me for, as I said earlier, I go to school far away from where I live. I have to walk about 10 kilometers to go to school. And sometimes when I am back from school I don’t have time to read, so that’s really complicated.” To explain, where Marie lives, near the equator, the day ends quickly at 6 p.m. So by the time food is gathered and prepared, the sun may have set. When she said this, Marie did not have enough money for candles to study after sunset. She had begun to have doubts about her ability to continue in school. Thanks to her association, Marie now has a kerosene lamp and fuel so she can study at night. Christian is a 17-year-old who lives in a rural village in Rwanda. He lives alone with his HIV+ mentally imbalanced mother. He had been out of school for several years for lack of required school 96

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fees. Once he became part of an association that helps affected children, they paid his school costs. It wasn’t easy, for there he is, a big boy in grade six sitting with much younger children, trying very hard to get back into the swing of school. Children such as Louise, Marie, and Christian are amazingly brave and determined, and the reason is that they have hope. They have hope because of help from their CHABHA-supported associations to get back to school. Unfortunately, many millions of children in sub-Saharan Africa are not in school. Rather than follow a chronological sequence, pre-primary, primary, and secondary, the discussion in this chapter begins with primary education. Primary-level schooling is addressed first because it has been the target of effort for decades and is one of the MDGs. But, of course, in today’s world, much more than primary education is necessary, and African countries are attempting to enhance pre-primary and secondary education, topics treated next. This chapter also considers student drop-out, school quality, school responsiveness to HIV/AIDS-affected children, and questions about funding schools. To judge from the length of time that international organizations have called for primary education as an essential, universal right for children worldwide, one would think it would have been achieved. In 1934 the International Conference on Education claimed primary education as a human right; since then, over and over, other international organizations have followed suit. Countries committed themselves to universal primary education when they signed on to the Convention on the Rights of the Child, for example. Another international effort begun in 1990 as “Education for All” under the auspices of UNESCO met again in 2000, and established goals to be reached by 2015. Education for All is the monitoring agency that reviews progress and coordinates efforts of that international group. An arm of that effort is the “Fast-Track Initiative,” meant to meet some of the financial needs. The Education for All effort fits with the MDG education goals 2 and 3: 2. Achieve universal primary education. • Ensure that, by 2015, children everywhere, boys and girls alike, will be able to complete a full course of primary schooling. 3. Promote gender equality and empower women. • Eliminate gender disparity in primary and secondary education preferably by 2005, and at all levels by 2015.

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Universal primary education has not been achieved, even though millions more primary school-age children were in school across sub-Saharan Africa in 2007 than ever before. For example, in 2007 there were twice as many new entrants as in 1999. However, in 2007, worldwide, 72 million children of primary school age were not in school, and 32 million of them, 45 per cent, were in sub-Saharan Africa.1 Many of these children have never been to school; most have had only a few years of schooling and dropped out. Although we applaud the fact that more children were in school in the first decade of this century than ever before, still, “the lowest rates of primary school participation are in sub-Saharan Africa, where only 65 per cent of primary-school-aged children are in school.”2 Despite three-quarters of a century of effort, the goal for universal primary education will not be met by 2015 if current trends continue.3 Orphans are less likely to be in school than non-orphans, especially in Burundi and Rwanda. In Burundi, orphan attendance is 85 per cent that of non-orphans; it is 82 per cent in Rwanda. In Tanzania and Zambia, however, orphans are nearly as likely to be in school as non-orphans.4 From studies in Tanzania and Zimbabwe, we find that children who lose their mothers have less schooling than those who have lost their fathers.5 Money matters. In sub-Saharan Africa budgets are strained by needs on many fronts. As a result, schools turn to families to pay school contributions and for uniforms and materials. Primary school children in most African countries, indeed in most of the world, must purchase uniforms and school materials, and, in many places, families must pay some kind of user fee to attend. Katarina Tomasevski reported that 97 per cent of 79 countries she studied imposed fees even though the public statements were that they had mandated and free, universal primary education.6 For poor families with several children of school age, these costs represent a formidable challenge. Often only one or two children out of a family get to go to school. Where one lives also relates to school attendance: rural children are less likely to go to school than urban children, and the differences are marked.7 THE SITUATION IN RWANDA The official position in Rwanda is that primary education is free. “The government implemented a policy of fee-free primary education in which school fees have been abolished and replaced by a capitation grant which has increased to 2,500FRw (US$ 4.50) in

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2006.”8 (The capitation grant is the per pupil government funding to make up for loss of school fees for materials.) Enrollment has increased, and more children were going to primary school in late 2009 than ever before. Still, there are 88,000 primary school-age children not in school.9 Mindful of the approaching end date for the MDGs, 2015, and because of their efforts to improve children’s wellbeing, Rwanda’s government is making changes to address problems such as low completion rates, high pupil–teacher ratios, very low enrollment at the secondary level, and lack of materials and equipment. These include changing the secondary language from French to English, inclusion of grades seven, eight, and nine as part of “primary” education, and split day classes. These are very costly changes, but they demonstrate significant intent to improve schooling. However, there is a long road ahead. Still, despite the announcement of free, universal primary education, families are expected to contribute. At the beginning of each school year, families pay between US$4 and US$8 for their children’s uniforms and school materials. They learn what the additional school “contribution” is, the amount depending on the agreement arrived at by parents and the school administration. The cost of materials and contribution varies, but is around US$25 a year. When the school year is under way, if the contributions have not been paid, in some cases teachers are told to ask the children to leave school. In others, children remain, but they may not receive their report card – a necessary paper for matriculation the next year.10 The hidden fees system in Rwanda is not part of government policy, and so the official claim that school fees have been abolished is true, but it is not the truth that children and families experience. However, anxious to present improved data by 2015, in late 2010 the government transferred money from the government-supported university bursaries (scholarships) to primary education, causing considerable distress, but indicative of the power of the MDGs to stimulate progress. Here is how one young man, a secondary student, recalled his experience of being “chased” away from school for non-payment of fees: On 23 of August 2004, that’s when my parent died (of AIDS). It was really a difficult thing when my parents died. I stopped my studies. I couldn’t afford to pay for my school fees. I remember at that time the accountant would come in our class and say,

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“People who didn’t pay school fees, stand up and go home.” So I go home. And then I come back. You understand it was really a big struggle. A big struggle. In addition to that I had my brothers and my sisters to take care of. Attendance is a necessary but not sufficient measure of success. Another crucial measure is whether children stay in school. In developed countries, 99 per cent finish grade five. In sub-Saharan Africa, only 76 per cent do. In South Africa, Zambia, and Tanzania relatively high numbers of children complete grade five – 85, 89 and 87 per cent, respectively. However, in Rwanda, only 46 per cent last through grade five.11 Much of the failure is due to family finances. Drop-out also occurs when schools fail to meet children’s needs, as is often the case when teachers have huge classes of 50 or more children and very little in the way of teaching materials. Success in school would increase if there were greater access to public pre-primary education. Good pre-primary school experience give children who might otherwise be at a disadvantage a leg-up, or to use the title of a US program, a headstart. It comes as no surprise to know that few children in sub-Saharan Africa attend public pre-primary schools. Forty-one per cent of pre-primary-age children attend pre-primary school worldwide, but in sub-Saharan Africa, even though there has been tremendous growth between 1999 and 2007, only 15 per cent of young children are in school.12 For countries hard put to get all their primary school-age children into schools and to keep them there, development of public pre-primary education is a major challenge. SECONDARY EDUCATION There is yet a more challenging story – secondary education. In the West, secondary school completion is only a step along the way toward acquiring proper credentials. But in the developing world, especially sub-Saharan Africa, completion of secondary school is a major achievement. The poorest of the focus countries have very low secondary school attendance: Burundi, 8 per cent of males and 6 per cent of females; in Rwanda 5 per cent of both genders are attending school; and in Tanzania is it 8 per cent. In South Africa 48 per cent are in secondary school, and in Zambia 40 per cent.13 In most sub-Saharan African countries, secondary school enrollment depends on examination scores and school fees, fees that are much

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higher than those for primary school, averaging about US$200 or more in Rwanda. Because there are relatively few schools, pupils have to board or travel long distances. In South Africa, however, schools are not permitted to exclude students who cannot pay the school fees.

When given the opportunity to learn, children respond. An informal learning opportunity has arisen in CHABHA’s office in Kigali, Rwanda. North American visitors brought hundreds of books in English to support children as the country shifted from French to English. A resource room is filled with second-hand donated books for all ages, benches, crayons, paper, and other materials. When this was first established, the children just dropped by, but during the 2010–11 school holidays up to 150 primary and secondary students came to read and learn English. Leaders who had been strong students themselves took over as teachers; they announced the days for primary students and for secondary students. Informal learning took off. The two young men who are teaching are both HIV+, as it happens, and very proud to contribute in this way. Young leaders can make up for some of the family support the children have lost.

Educating youth matters: unhappy, under-educated youth cut off from the opportunities permitted by education may begin to see themselves as pawns in systems they cannot control. Communities with many such affected young people are not healthy, especially if these young people represent the poor in contrast to an elite group who do have educational prospects. More than the security threat that may arise from many disconnected youth, productivity will suffer if left in the hands of a small elite. Technical and vocational education would be an appropriate approach for teens not in school. There is some slow growth toward vocational education in sub-Saharan Africa, but the region remains notable for its high unemployment rates among youth. The African Economic Outlook notes that, in addition to vocational training, structural changes are needed: reductions in discrimination toward youth; increased basic literacy and numeracy skills among youth; more job creation; and unrealistic wage expectations on the part of youth are some of the barriers to employment.14 I would add that young people who have grown up without a wage-earning parent, as is the case with those who are orphaned, also need training in job search and work

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ethics. CHABHA initiated an internship-based vocational training program for out-of-school older adolescents in 2006 in Rwanda that has trained more than 400 youth. Upwards of 79 per cent of the first cohorts of trainees were either in jobs or were creating paid work within six months, but many still experience obstacles. Those who do find work begin to take steps out of their poverty. Here is one young woman’s story. Emma was 18 when she said: I live with Papa and my younger sister. I graduated from Project Independence [CHABHA’s vocational program], then later I got a job here as cook. Before, my family was in a terrible condition. My father was very happy when I got training. Thereafter, I got a job, and my family was overjoyed, we almost forgot all the sorrow we were in. Now the first thing I am going to do is to rebuild our house so that we can have a nice place to live in. Our house was destroyed because of the rain we had recently and of course it was not in a good condition. I will pay school fees and for school materials for my sister when she gets into high school. I will also take care of my father, who is HIV+. Emma’s determination to improve her family’s lot is also evident in the numbers of young people who rise before dawn and walk many kilometers from high in the hills to the city for training and who return home, walking up the hills, in the dark. Vocational education that either replaces secondary school or, better, is post-secondary training must observe gender equity. To date that is not happening, although equity is occurring at the primary and secondary levels. MDG 3 has one target: “Eliminate gender disparity in primary and secondary education preferably by 2005, and at all levels by 2015.” The 2010 Education for All report noted that “about two thirds of countries and territories reached gender parity in primary education by the target year of 2005.”15 In fact, all focus countries have gender parity, except Tanzania, where there are more girls than boys in primary school. Gender equity is also increasing in secondary schools, although for sub-Saharan Africa as a whole, while 29 per cent of males are in school, only 24 per cent of girls are.16 Of the focus countries, all but Burundi are moving toward equity in this regard. Success at enrolling girls in primary school and improvements at the secondary school level is a cause for joy, as it means that girls will have equal opportunities to work. Not only that, as noted in Chapter 6, educating girls means that their children are more likely to survive and go to school.

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The longer girls stay in school, the better their chances of healthy lives. Each additional year of educational attainment reduces the risk of HIV infection by 7 per cent.17 One reason girls benefit from school is that they learn how to avoid infection. Moreover, the longer girls stay in school the more likely they are to use condoms if they do engage in sex. Girls in school have the safekeeping of that society, both formal protection and informal, from their peers. School rules and regulations, curriculum and activities on HIV prevention, and the protection of their classmates limits opportunities for risky sex. More importantly, schooling promotes self-esteem and hopes and plans for positive futures.18 Why have girls been less likely to be in school? Girls are called home to attend to siblings, sick parents, and to farm – especially in families with chronic sickness, as in many HIV/AIDS-affected families. Moreover, when there is money for only some of the children, boys are more likely to be chosen. Anecdotal evidence points to another, less obvious reason: Many poor girls stay home because they have no money to buy menstrual pads. Extended monthly absences lead to school problems, and, often, to drop-out.

Sometimes simple answers to specific problems make all the difference. Hundreds of girls were delighted to attend a workshop to learn how to make reusable menstrual pads at workshops offered by CHABHA volunteer Miriam Shafer and staff member Micheline Umulisa. Afterwards, one girl set up a table at her town market with directions for others on how to make them.

Attendance at school is only the first step toward learning. Quality counts. School quality issues may explain children’s difficulty learning. Measuring school quality on a large scale is of course impossible, so the number of pupils per teacher ratio stands in for widespread appraisal of quality. On average, in 2007, the number of primary school pupils per teacher in sub-Saharan Africa was 39, ranging in the focus countries from the huge 69 pupils per class in Rwanda to 31 in South Africa. For secondary schools, four of the countries were close to the regional (and reasonable) average of 25, except for Zambia with the class size of 43.19 When many children spend their days in overcrowded, poorly furnished classrooms that have few books and very little else, not too much learning takes

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place. Even in classes with fewer children, the lack of basic learning materials will hamper learning. Classrooms in schools I have visited in three different African countries have a depressingly similar look. In some classes the learners each have at most a single booklet with lined paper for all subjects and a stubby pencil. The teacher may have one or two books but no other teaching technology beyond a scratched blackboard. Lessons are copied from the blackboard. Narrow questions with one answer, teacher talk and recitation, and little encouragement for discussion are common in these classrooms. In one classroom in southern Africa where I spent some time, a fifth grade, the one eraser in the room was tossed from one pupil to another when someone whistled they needed it. Without texts and other materials teachers can do little more than lecture and ask children to recite. The result is rote learning, leading to conformity and passivity. All is not negative, though. I have observed a positive attitude on the part of many in African school contexts. African teachers, parents, and children firmly believe that what determines school success is hard work. At the CHABHA association gatherings, children’s school rank, when high, is applauded, and everyone delights in the first-placed girl or boy. They are applauding the hard work, mostly. Teachers do recognize individual differences, too, but more often they ascribe students’ poor performance to lack of effort rather than individual or school conditions. This high value placed on hard work encourages internal motivation for many children who know that they must meet school standards to be successful and work to achieve. Improved educational quality will require continued efforts toward better pupil–teacher ratios, effective and respectful teacher training, and provision of essential teaching materials. More classrooms, more teachers, more books, and more teacher workshops will increase pupils’ successes. There is more to what schools must do, and that is to respond to children orphaned by HIV/AIDS and other vulnerable children. In high-prevalence areas, this will require whole-school direct and sensitive responses to affected children. As in every other sphere of life, HIV/AIDS has had a significant impact on education in sub-Saharan Africa. Today, in highly impacted areas and schools, in classes of 40 children, there might be as many as four children orphaned by AIDS and/or living with an adult caregiver who is HIV+. Two or three of the children might be HIV+. The teachers in affected schools might also be HIV+ and often absent due to illness. Affected children are glad to be in school, but

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they are often frightened, hungry, unable to concentrate, victims of stigma, and experiencing other debilitating circumstances. If their teachers do not have the empathy the Namibian teachers were developing, affected children are increasingly vulnerable to failure.

I am very grateful for my experiences in a Namibian school where change occurred. I visited one school often and was asked by the teachers and principal to help them with their teaching. Together with the principal I worked with a small group of primary teachers. Their trust in the process and willingness to take big risks enabled them to make some fundamental moves. It did not begin well. For an observation, I engaged first graders in an open writing task. I hoped the children’s writing would demonstrate individual differences that could form the start of further work, so the children were encouraged to use different words and pictures. I was rather pleased with the children’s productions, but the teachers were skeptical. They didn’t know how to interpret deviations from a single standard – their own writing on the board. Though very polite, they appeared befuddled and uneasy about all the variation, and the project aimed at stimulating change seemed doomed. A transformation occurred, though, when the principal and I asked the teachers about their own school histories. We asked them to recall times when they were pupils in primary school, times when they felt uncomfortable or when they were confused or frightened. My, they talked. They spoke of disliking math. They said they were beaten if they had the wrong answers. Their own fear of failure and beatings led to their withdrawal and silence and, ultimately, to loss of self-confidence. When asked to compare their childhood school experiences with what their own pupils were experiencing, many teachers began to see matters quite differently. Over several weeks ideas for how to engage their learners emerged, good ideas that the teachers tried out: putting children in pairs to prepare answers; thinking about “wrong” answers and what they meant. At the end of our time together, the teachers wrote about what they had learned. Given where they started, their responses were amazing. For example, “The pupils must participate fully in the lesson … They must be given time to talk and to discuss in groups … We have made connections to our own histories of childhood and school and this will help us to have empathy with our pupils.”

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A South African teen said about her difficulty in going to school and facing discrimination, “Even my friend told me she won’t eat with me again. One told me right to my face that I’ve got AIDS and should stop going to school and stay at home. I would feel terrible. Cry deep down. I would sit alone and cry alone.”20 Imagine her loneliness! A study by Campbell and colleagues demonstrated that, indeed, children do stigmatize other children in school. Children’s drawings and writings showed two very important attitudes children held. On the one hand there is clear awareness of stigma. When writing about a girl in a picture, a boy wrote, “When she went to school her friends scolded and laughed at her – and others called her by names.” On the other hand, children indicated admiration for children caring for family members and working to provide food.21 Stigma reduction can occur if addressed directly, and many schools are doing just that. Young people I have talked with who have lost one or both parents to AIDS indicate that the school efforts to reduce stigma are making a difference. They say their school lives are more comfortable because more young people understand how HIV is transmitted. An 18-year-old explained, “At our school they prohibit it. You can be punished if you stigmatize someone.” And another teenager said, “Now in high school they teach about HIV/AIDS and a large number of them understand about HIV/AIDS.” In addition to learning about the disease and stigma reduction, teachers at all levels increasingly are trying to respond to the needs of orphans and other vulnerable children who lack family support. Infected children may be absent often and need to be helped as much as possible.22 Tania Boler and David Archer write about “Circles of Support” to make schools “child-friendly.”23 Child-friendly schools reach outside to work closely with community groups to attend to children’s health, psychological status, nutrition, and living arrangements, as well as children’s academic learning. Teachers at child-friendly schools work hard with all constituencies to reduce stigma and to increase children’s safety. They learn how to overcome their reluctance to talk about sexual development and matters related to HIV/AIDS and to stimulate open discussion. Significant teacher training can help teachers create the kind of interactive exchange that will move thinking beyond memorizing facts. But such training and implementation assumes that teachers have small enough classes that they can focus on individual learners, have experienced mentors and cooperative colleagues, and are able to integrate learning experience within the regular curriculum. Without

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careful work together to create child-friendly schools, teachers may turn to knowledge-only, didactic approaches. Books especially written for young adults in Africa can stimulate discussion as students relate with characters and their lives.24 They may begin to see themselves and their responses to risky situations. FINANCING EDUCATIONAL IMPROVEMENTS Cost is a factor for poor countries wishing to provide universal access to pre-primary, primary, and secondary schooling, to improve quality, and to respond to the special needs presented by the HIV/AIDS-affected children. These countries face significant challenges in improving their educational systems: at the least they must build more classrooms, improve teacher salaries, provide in-service training, design improved curricula, and purchase books and materials. Because the poorest countries are simultaneously attempting reform in other spheres, they need outside help. A glance at the per pupil expenditure across four focus countries illustrates the financial challenges these countries, and others like them, face. Table 7.1 shows the extreme differences between Europe and North America and the poorest countries of sub-Saharan Africa. When less than the equivalent of US$100 is spent per pupil at the primary school level, as in Burundi, Rwanda, and Zambia, no wonder there are demands for hidden contributions, crowded classes, lack of basic materials, and discouraged and under-prepared teachers. Table 7.1 Per pupil expenditure at primary and secondary levels in US$, 2007 Country/Region Burundi Rwanda Tanzania South Africa Zambia Sub-Saharan Africa Europe/North America

Primary School

Secondary School

65 248 80 282 – – 1225 1476 63 98 130 290 5614 8599

Source: Education for All, EFA Global Monitoring Report: Reaching the Marginalized, Paris: UNESCO, 2010, Table 11.

The under-financing of education in sub-Saharan Africa has roots in recent history. Back in the early 1980s, the International Monetary Fund set up “structural adjustments” that required nations to meet

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certain criteria when asking for loans, loans that then became the country’s debt. Among the criteria was one that reduced national commitments to education (and health) and placed the onus for payment on the users, children and their families. In the 1980s the World Bank recommended that school fees for texts, supplies, and buildings be assessed, and most African countries began to extract fees for primary and secondary school attendance. Some ten years later, country leaders acknowledged, with agreement from the World Bank, that these fees had had a negative effect on school attendance.25 In the 1990s African countries began to abolish fee requirements, beginning with Uganda and Malawi, later including even impoverished Burundi, in response to the downward levels of participation and at the encouragement of NGOs. These campaigns to abolish fees have had some great successes. In just three countries, Uganda, Tanzania, and Kenya, more than 8 million children enrolled in school after fees were abolished. Countries that have abolished fees have also seen gender gaps diminishing rapidly, proving that girls were being held back from enrolling by the direct costs of schooling.26 Access has changed rather dramatically in Tanzania. Although the country is very poor, with 90 per cent of its people living on less than the equivalent of US$2 a day,27 recent efforts in Tanzania have changed the number of out-of-school primary-age children. In 1999 there were three million out-of-school primary-age children there, but by 2007, there were only a few above 140,000.28 Probably as a result of these efforts, Tanzania ranks higher than the other focus countries on the Child Development Index, except for far richer South Africa. School systems were not prepared for the initial deluge of new pupils when official fees were abolished. It quickly became clear to officials that large increases in the numbers of pupils, with some classrooms filled with more than a hundred children, would put significant strain on country budgets. Similarly, recognizing these added financial challenges, in 2000 the G8 countries (Canada, France, Germany, Italy, Japan, Russia, United Kingdom, and the United States) agreed to make significant efforts to support educational improvements in poor countries. As part of the Education for All effort, these countries and developing nations signed a commitment that no countries seriously committed to education for all would be thwarted in progress toward universal education by a lack of resources, and in 2002 the Fast Track Initiative (FTI) of the World Bank came into existence. Developing

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nations would make primary education a priority, increase their own funding for primary education, and develop long-range plans. Once a country’s plan was approved, donor nations would provide money to fill the gap between national funding and what was needed. In this way both donor and poor countries would work together to support education. A number of reports have criticized FTI progress. From the 2010 Education for All report, the FTI has been a big disappointment: “Seven years on, the credibility of the initiative is at an all time low.”29 The report notes that the FTI has failed to mobilize and deliver promised contributions, failed to assess rich countries for needed money, weakened efforts to improve, and showed “arrogance” when donors imposed their agendas rather than respected the plans of the receiving countries. Countries emerging out of conflict, such as Burundi, needing an infusion of support to stimulate education development, did not receive it. The Education for All report recommended that the FTI follow practices of other multinational programs, but one wonders if change is possible in an organization with a history of failure.30 Meanwhile, money spent on the FTI enterprise could have made a difference if used more wisely. In sum, although there are many more children in school in 2010 than in 2000, and gender differences at the primary level have significantly improved, MDG 2 will not be met in sub-Saharan Africa. In fact the overall picture of education requires urgent attention. Efforts to change require large amounts of money and, if this is not forthcoming, millions of children will continue to miss out and be unable to build independent adult lives. While we regret the negative impact of the structural adjustment approach of the IMF in the 1980s and the more recent FTI effort, it is the current challenge before the countries of sub-Saharan Africa and their donors that requires urgent response. It is not an oversimplification to state that sub-Saharan Africa will continue to be at the bottom of every development measure unless access to quality schools improves. In countries where few young people finish secondary school and even fewer attend university, it will be difficult, perhaps impossible, to create modern, technologically based industries. Future economic development and civic participation depend on greater equity and success in education. If countries continue to rely on small numbers of educated elites for improved productivity and creativity, they will not be able to sustain and develop economic growth. Moreover, they may face growing demands from under educated and disappointed young adults.

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8 I Feel It in My Heart

Children’s feelings of sadness and grief, fear, worry, and the weight of heavy responsibilities emerge in tears, pictures, and in words – like the child who said, “I feel it in my heart.” These feelings stay with children and young people for years if not addressed. Given the range of essentials missing in the lives of affected and vulnerable children, it will not be a surprise to read that these children do not usually have access to psychological services that might mitigate some of the long-term effects of grief. Children who do receive help appear to respond well to activities that build resilience. Effective methods to alleviate the children’s pain and foster their strengths have materialized through community-based activities in several sites. One day at a workshop, when talking with two boys and a leader of an association about the impact of HIV/AIDS, one 13-year-old boy began to tell us how he and his sisters had lost their mother and now lived with an uncle. I glanced over at his companion, a boy of the same age, and saw his reaction to the same question – tears rolling down his cheeks. An 18-year-old who is the head of his family of siblings talked about loss, “It is difficult to live without parents, but we have no choice. We have to live like that. You know when you live with your parents you are happy to be with them. And when you lose them you really feel bad, so it was really difficult to receive that really bad news that your parents have died.”

An eight-year-old in a neighborhood of Lusaka, Zambia, talked to Deborah Ellis about his mother’s death: She died in our house. Her body was there but she wasn’t inside it anymore. I went to her funeral. I was very sad, and I get sad all over again when I think of it. A lot of people came. I liked that so many people liked my mother, but they were all over the place. There was nowhere I could go just to be quiet …1 110

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Of all the causes of risk in childhood, the death of a parent is the most devastating and powerful.2 Given the numbers – 14.8 million children who have lost one or both parents – this is an issue of huge proportions in sub-Saharan Africa. Children are best helped when they confront their grief early on, but in the turmoil of death and dislocation, never mind the lack of trained persons, that seldom happens. In the midst of family confusion decisions are made straight away, even right after funerals. Where and with whom the children will live must be resolved but early decisions add to the upheaval children experience and their grief is pushed inward. Often they simply stifle their grief as they are moved to live with relatives. Most families who take in young relatives, or the children of lost friends, do so with great generosity and concern. We know young adults who have lived for years with families that took them in and provided them with rich and fulfilling family lives. This happens in both poor and in wealthier families. It is not always so positive, though; occasionally, if the family they join is poor and if their presence adds to the burdens of poverty, they may be blamed, and their situation worsens. Not always, of course, but often enough, children have heavy work assignments, may not get to go to school, or may even experience sexual abuse.3 We are particularly concerned about the plight of the youngest children who have lost their parents. If siblings are placed in different households, younger children may lose family memories, the solace of shared grief, and knowledge of the common family history. They may not have had much time with healthy parents, so they need to hear from older siblings about how they were loved. And older siblings can transmit family knowledge to those who are too young to remember their parents. They can help shore up family feelings. In a study of young people who were heads of their households, Llorente formed focus group discussions and learned how children draw support and guidance from one another. “All of the Amahoro boys in the focus group discussion, for example, cited the time they spend with siblings as their happiest moments.”4 While many children internalize their problems and find it difficult to talk about their feelings of loss, others are quite clear, as is this twelve-year-old from Malawi: When my mother died, I went to live with my grandmother for a while, but she was old and couldn’t look after me, so an aunt in Lilongwe took me in. She wasn’t a close aunt.

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This aunt used to hit me and yell at me. She had her own children at the house, but she didn’t hit them as much as she hit me. I had to do a lot of jobs around the house. If I didn’t do things the way she liked, she yelled and hit me. Every time I ate food at her house, she yelled at me for costing her so much money.5 Children in such difficult circumstances may either become very withdrawn or act out (or speak out, like the girl quoted above). There are other responses. One qualitative study found five different mental health syndromes among AIDS-orphaned children in Rwanda: depression and deep sorrow; depression and anxiety; mood disorder and extreme hopelessness including thoughts of suicide; excessive anger and irritability; and disobedience and high-risk behaviors.6 These responses among AIDS orphans are not unique to Rwanda; similar findings are evident in research elsewhere. For example, in South Africa, orphans aged ten to 19 who lost their parents to AIDS had more depression, peer problems, thoughts of suicide, delinquency, and conduct disorder than other orphans. Most of the AIDS orphans had internalized their problems. These conditions worsened when the children experienced poverty, problems with caregivers, heavy housework expectations, and stigma.7 A study conducted in Uganda showed that compared to non-orphans, orphans to AIDS are more likely to have suicidal thoughts, trouble sleeping, stomach pain, and little hope for their future.8 Children need to be supported during their times of grief so that their feelings do not become internalized, unspoken, and the source of future problems. While it is wrong to impose Western thoughts about grief in different contexts, the tendency for African children to be advised to not talk about their parents or their deaths may be questioned, albeit carefully. A 13-year-old girl who lives with an older brother and a cousin said, “My brother tells me to forget and not think about my parents.” I talked with a young woman, a secondary school student and orphan to AIDS, who faced problems and difficulties living in a large, very poor family, her uncle’s. Despite all this, Therese had a very “can-do” approach to life. She had learned the importance of memory of her beloved mother. She told me that she keeps her mother’s memory alive by talking about her. Her friend Jacqui agreed that it is important to talk about your parents. Jacqui lives with an older sister, and they talk about their parents a lot. It is difficult for those working with orphans such as the young leaders in our projects, to know how to help children who are

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When two CHABHA board members, Belinda Whipple Worth and Jane Davis, gathered the young leaders of an association together for a workshop on grief, they were astonished to hear the leaders say it was not a good idea to talk about the death of a loved one, not even with the children in their care – and all of the leaders had lost their parents at an early age. “It’s better,” said one young leader, “to go on with life without focusing on difficult, sad matters.” Having said that, once the young leaders became involved in activities that brought out their own experiences with death of a loved one, very moving stories of loss, they fully embraced the idea that they were carrying a burden, a kind of heaviness that comes with unvoiced grief. They began to understand the need to talk and help one another in that way. Since this first workshop, they have sought further training experiences to learn more about how to help the children in their care. Now, on home visits, they encourage the children to tell their stories and to talk about parents and others who have died from AIDS. They know that children get frightening thoughts if there isn’t talk about what has happened. The young leaders have learned how to bring solace to grieving children. And the children really respond to this kind of care.

grieving. Even though they have had only minimal training, they have their own loss of parents to share with the children. Furthermore, they know the importance of group cohesion, and they make sure children who seem to be in difficulty participate fully in supportive activities. Their association gatherings are structured to maximize children’s connections with one another. Home visits are opportunities to cement the sense of belonging to the association and its leaders. When there seem to be serious problems, however, they can try to find other agencies to intervene. Many children feel burdened with responsibility, especially older youth who try to support ill parents and younger siblings. The stresses of multiple roles in teenagers can be serious. In a study of child-headed households in Kigali, Rwanda, Llorente interviewed youth who reported the challenges they felt when they were unable to provide for their families. The first thing I can talk about when I’m taking care of a young sister or a young brother … it’s you that the young sister or brother will come to ask for food. She or he will come for clothes … everything. And when he or she comes you are always sad.

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Some reactions are troubling. Once, at a meeting with the young leaders of the grassroots projects in Rwanda who were talking about these children’s, they began to talk of their own experiences so that they could relate to the children they visited. Suddenly a young woman began to weep; she left the table where we were sitting, and one of our staff, another young woman, went with her. They were gone quite a long time. It seems that this young woman had been caring for her father before his death from AIDS. One day a friend came by, and she went out for just a short time to visit with her peer group. When she returned home, she found that her father had died. Her tears at the meeting came from her feeling of guilt. Somehow she believed that had she stayed with him that day, her father would not have died. Of course, her belief could be questioned. Perhaps her father waited for her to leave to let go and die. That idea did not help her; she was wrapped in her grief and self-blame. Even though she said she felt responsible, talking about the situation to a comforting peer seemed to be helpful.

And everyone is crying and no one is there and you feel like you can’t do anything about the problem. And that’s the usual life.9 Patrick talked about his drawing (see Figure 8.1). He pictures himself coming home from school and dreading it due to the problems at home he could not solve. “I am on the left; my mother on the right. Brother and sister in the middle. They are saying, ‘We want food.’ Mom is crying because the children need food. I am coming in from school and thinking about the problems I will meet at home.” The range of problems experienced by children affected by HIV/ AIDS is massive. Like Patrick, they worry. His father had died; and, in addition to his own grief, he felt responsible for this mother and siblings. For some young people who are themselves infected and/or stigmatized there are feelings of shame. Most have a sense of deep loneliness. If not addressed, these feelings mark children’s futures, usually in negative ways. It is not possible to eliminate real grief and associated sadness, of course, but the long-term effects can be reduced. Millions of children who live with one remaining parent are haunted by fear of the AIDS death of the other parent. Many others, double orphans, worry about their elderly grandmother or other

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Figure 8.1 Patrick’s picture (courtesy of the author)

relative who is caring for them and for others. A leader and I were talking with a lively 14-year-old girl one day as she was telling us of how excited she was to be one of the new dancers in her association. We asked if she had any particular worries, and her whole demeanor changed. She looked down and said softly, “Mama said she was infected. Mama used to take medicine but she stopped. Where she used to go to get medicine stopped. I think my Mom will also die, and I’ll be an orphan.” Those young people who are infected need a lot of support. A 13-year-old, Adila, told me, “I worry because I am an orphan and infected. I have taken medicine for one year. Before that I was sick every day, but now I am not sick. The other thing I worry about is there is not enough food.” Adila’s worry about food is a real one: ARVs do not have their positive effect in the absence of a good diet. Anna, at 15 and in boarding school, talked about a particular dilemma that bothered her a lot – happily, one we could rectify. I am worried that if Amahoro is paying my school fees, if I don’t succeed at school, they will put me out. I have another problem. I need to go to the clinic every month to get ARVs. I asked the school authorities [permission] to go to the clinic. They said I

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had to give them the medical papers. The clinic does not give out papers. Anna’s was a serious problem. She worried about her studies, and with reason. She was distracted and could not study; as a result her marks were low. She felt she was in a Catch-22 situation, the school demanding official papers from the clinic to give her permission to leave school each month for medicines and for her papers to be checked. The trouble was that the clinic did not issue such papers. A shy, introverted girl who hated to talk about being infected, she probably did not make her case at the clinic well. The leaders of her association have since intervened at the school, but in the meantime Anna’s desire for privacy in regard to her health situation has been lost. Grief, silence, worry, and self-blame accompany children and, along with these problems, they also experience disabling stigma. Although schools are addressing stigma, children often experience it in their homes and neighborhoods. Stigma arises out of people’s discomfort and fear; when danger is sensed, like a deadly infection, they can feel safer if they project negative reactions and blame the infected person.10 A 13-year-old girl in Rwanda, who was very shy and quiet, told us of her experience now living with an uncle. Médiatrice said, “My uncle sometimes is like embarrassing me, shaming me. ‘You must have AIDS, your mother died of it.’ When he talks like that, I don’t know what to do. I feel it in my heart.” Eshe, a bright 13-year-old who is infected, said, “I don’t tell people I am infected because they would stigmatize me. The leaders here know. They try to look after me.” When children hear their peers and adults denigrating them, they suffer lowered self-esteem. Young people withdraw from community activities out of fear of being made fun of, and their isolation leads to loneliness. They also respond very positively to opportunities to gather together in solidarity. With trusted others, some of the negative impact of HIV/ AIDS is alleviated. Those who work with children made vulnerable by HIV/AIDS are often overwhelmed by the children’s physical needs: food, health, sanitation, and so on, and by their educational ones. People in the field – community leaders and governmental and NGO staff – work to ameliorate some or all of those needs. To a lesser extent individuals and organizations also attempt to address children’s emotional needs, such as those described above. There are limits to this top-down approach, however. My own experience has taken

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me from seeing our role in CHABHA as fulfilling the children’s first-order needs to one that also promotes children’s strength, resilience, and independence. To get there I had some learning to do.

At a celebration of graduates of a vocational training program, a number of adults were called on to speak – directors, teachers, and so on. When the young graduates, most between 18 and 22 years, had an opportunity to ask questions, one young man who had completed his internship in construction said he expected our NGO to provide him with tools. I remember thinking, “We provided him with money for school and for this training program, for health cards; will he ever stop expecting us to provide for him?” When thinking more about his question, it became clear to me that our program, called “Project Independence,” had not led him to the independent practices we hoped for; instead it had increased his dependence. What was needed was explicit and intentional promotion of a sense of autonomy in this young man and the others.

Young children are dependent, of course, and require some basics to survive. But as they grow, self-reliance becomes important, and the young man above lacked the self-reliance he needed. We in the West think of childhood as a time for freedom from concern, a time for learning, a time for preparing for adulthood. We feel anguish for the children orphaned or made vulnerable by HIV/AIDS and who live in poverty. We believe that for them to take on the responsibilities of raising and educating young siblings is nearly impossible. We step in with top-down, needs-based programs. A number of writers are critical of this approach, however, and propose an alternative method to explore and maximize children’s potential for building strength in adversity.11 While these writers recognize that children experience grief, fear, worry, burdensome responsibility, stigma, and loneliness, they are finding that some children struggling in difficult situations also demonstrate signs of strength … of courage and determination. Some children who have experienced significant loss develop well and lead normal adult lives. They are resilient in the face of challenge. A great deal is known about resilience in children, about why some children prosper and others do not. Part of the explanation lies in the temperament of individuals, and part lies in learned coping skills, increased social support, and the availability of caring adults.12 Efforts to find answers as to why some children

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are resilient reveal some important, similar experiences that existed during childhood: resilient children have a meaningful relationship with at least one caring adult; they hold and are held to high expectations; they participate in meaningful activities; they reach out for parent surrogates; and, as they interact with caring others, they experience a sense of belonging. It isn’t even so important how much help they receive as an objective reality; what is important is what they make of the experience, how they value it.13 When children can connect with an adult who cares for them, when they believe that school and effort will bring them a better life, and when they can help others and be part of a common effort, they are more likely to develop resilience despite the dreadful losses they have experienced.14 In their study of children in Kenya who were caring for adults in their households, Skovdal and Andreouli asked children to represent their experiences in interviews, draw-and-write activities, and photography.15 They also consulted with ten adults living in the community, one hard hit by HIV/AIDS. The children reflected positive identities from their care-giving activities, fulfillment of important assignments in the home and garden and in generating income. They expressed pride in their good behavior and relished how adults in their community recognized their contributions. Social support in the form of community reaction appeared to improve the children’s experience. With growth in confidence, the children were able to identify themselves in positive ways. One 15-year-old said, The way I have been taking care of the sick in the past has helped me to become courageous in assisting others. I find it quite easy, so when anybody is sick I can pay them a visit and assist them accordingly. My experience has made me brave and courageous to handle various issues.16 Similarly, Llorente interviewed older children who were heads of their households in Kigali, Rwanda, many of whom were in one of CHABHA’s partner associations. She found many of the factors reported above. For example, the household heads reflected on their responsibility. One girl said, “As I am the first-born, I am the one who is responsible for everything.”17 They felt that neighbors respected them because of their hard work (boys) and proper behavior (girls). They reported that their extended families generally did not or were unable to help, although neighbors sometimes did.

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Of particular importance was the positive impact of the children’s social networks. In keeping with observations that we have made over the years, Llorente reported that in their Amahoro events, weekly gatherings and workshops, young people felt connected with others in similar situations. “We have friends in Amahoro. We have people helping us. And we have something like a family here. And we come here and have fun and forget about our problems.”18 One girl said: But something that really interested me to come to Amahoro is the feeling I have after the gatherings or coming to leaders because at least I have someone to talk to … having someone else who has the same problems. I feel great having someone to discuss with. I have also done the training, I’ve done catering services, but I haven’t got the internship yet but am hoping to get one. We just finished. In the future I’m sure that I will have a job and help my brothers and sisters.19 Llorente interpreted this feeling about being with others in settings where children feel free and able to support one another as key to their building social capital. Indeed, for children whose culture tends toward a collective worldview, as is the case in most African cultures, identity development and perception of wellbeing develop in social settings.20 As described in Chapter 1, the African concept ubuntu of identity through others is realized in these simple association gatherings. These children are expressing how their membership in the group strengthens their perseverance in difficult situations. These are signs of resilience. As they gain in confidence, they are better able to reach out to significant people in their communities. There is an accepted point of view that programs to help children ought not to be exclusively composed of HIV/AIDS-affected children. The concern is that exclusivity increases envy among other poor people and creates more stigma for children and their families.21 They cite cases of children actually experiencing rejection and stigma because they are participants in programs for AIDS orphans and are receiving benefits. Observers with these concerns propose instead that programs seek the most destitute children and in so doing will probably include orphans anyway, as they are among the poorest. Involved as I have been in a program that includes HIV/ AIDS-affected children, I consider this question seriously. What my colleagues and I have concluded is that the personal and social

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support our children experience when they gather together with other children who are similarly affected by loss is very important to their psychological wellbeing. Together with others who are grieving or fearful, they feel safer, have more protection, and are less lonely. As Micheline Umulisa, a CHABHA staff member, said, “together they help each other face discrimination; they are not alone.” Llorente agreed that our more exclusive approach seems to have helped the children. “The very element of exclusivity is in fact responsible for creating strong internal bonds to actively combat the effects of stigma and discrimination.”22 But readers might bear the other point of view in mind. In recent years, a number of programs intended to support children’s social capital have emerged, and these help children extend and improve their social networks. From reports and observations, it is possible to identify elements that enhance affected children’s psychological strengths, elements that most effective programs, such as the Humuliza program in Tanzania, include. Humuliza’s efforts are directed at building resiliency through youth-led efforts. They teach about agriculture and provide for sustainable enterprises, as well as help those who are preparing for secondary school entrance exams. Girls learn self-defense.23 Humuliza is part of a network in 13 African countries, including South Africa, Zambia, and Tanzania, called the Regional Psychosocial Support Initiative, which provides written and media publications to help leaders and facilitators address children’s growth and development. Participant programs publish materials at the site after review and rewrite. As a result, there is a wealth of materials available for sharing to foster children’s wellbeing. The presentation in these materials is interactive to promote resilience.24 Among the positive activities found to enrich children’s psychosocial lives are ones embedded in ongoing social systems, as in the CHABHA programs and Humuliza – where children have a sense of belonging. Children gain insight and strength from any one of the support activities if they participate alongside good friends and with leaders who are trusted and loved. Thus, the first and most important element: 1. Enduring group membership. Irene, a double orphan who has faced problems that would weigh most of us down, has persevered. She told me a few years ago when she was in secondary school that she was happy to be in school and to have her association friends and the leaders in her life. She said

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about the leaders, “They are like my parents.” Irene is now the vice-president of her association and is clearly devoted to helping other children in situations like hers. I’m sure that now, with Irene in a leadership position, there are children who, if asked, would say she is like their parent. Over the years, her sense of belonging and of being supported and cared for created the strength she needed. She is now a student in a special training program for young women. Irene is a model of resilience. In other programs, the creation of enduring organizations for children to join is crucial to their growth. 2. Memory boxes. These are common in programs across sub-Saharan Africa. “Memory books or boxes help children build an identity and strengthen emotional capacity, to understand the past and be less afraid of the future.”25 Together, children and a remaining parent collect important family memorabilia to place in a box or book. Memory boxes may contain photographs, letters, certificates, and special items such as jewelry. The purpose is for the parent to talk about each item with the children and to use them as a way to share family history, the bonds across generations, successes, and special events. Parents who are very sick are urged to talk about the boxes as a permanent record of the family to which children can return even after the parent dies. Memory boxes are very helpful for older youth to tell young siblings about their parents and family events.   One family of five children headed by a teenager in South Africa showed us, visitors to their home, the memory box they had put together with their mother before she died. They wanted us to see the photos of their mother, and the important papers about her life and theirs. We could see that the box had been opened many times. This highly treasured box was a tangible link to that family’s history and their loved parent. 3. Camps and workshops. These are a common way to create an atmosphere to bring relief to children from their troubles and at the same time, to create a venue for experiencing important learning experiences. In 1998 The Salvation Army held the first Masiye Camp in Zimbabwe. The ten-day camp included some traditional initiation rites and also focused on helping children acquire coping abilities, capacity building, and skills.26 In that first camp and subsequent camps built on the Masiye model are lots of opportunities for fun and games. Often camps include physical challenge games for building trust. Moving beyond the life skills camps, Masiye has learned that taking camps to

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communities reaches more children. They are adding programs for under-fives, arranging to bring programs to hard-to-reach places to increase access.27   A few years ago we observed a group of youngsters who were away from their urban home and out in the bush at camp. Beneath a platform a group of youngsters stood in two rows with their arms held to one another; each child, one by one, was to fall backwards from the platform into the held arms of the group. Although there was giggling and signs of fear, all the children in the group managed to accomplish the task and seemed quite proud.   CHABHA programs have two-day workshops with specific lessons combined with fun and food. The lessons concern hygiene, family and community responsibilities, self-esteem, physical and social development, HIV prevention, children’s rights, preparing for HIV testing, and more. Because the participants in these short workshops are also together at weekly gatherings, they form and maintain group cohesiveness. 4. Storytelling. Tales and folklore have been the traditional way of passing on cultural values to the next generation. Storytelling occupies a natural role in many African cultures, and is therefore a potentially appropriate intervention strategy for AIDS orphans.28 Stories can be told for fun and for finding life lessons. African tales often feature a trickster – Anansi in many parts of Africa, but known by other names as well. The trickster is a clever underdog who rises to victory by his ingenuity. In North America, we know of Brer Rabbit. One of our CHABHA visitors, Helen Crawshaw, told a Brer Rabbit story to the children and their caregivers in Rwanda and South Africa. Originally from Africa, Brer Rabbit was “brought home.” The audience, children and adults, laughed and laughed at his antics. Another visitor, Joel Hill, told stories to children in their gatherings. These and other stories about bravery, heroes, and the like heighten children’s sense of possibility. 5. Sports. Increasingly folks interested in developing programs to reduce stigma and to increase knowledge about HIV transmission are embedding these goals in activities that young people like to engage in. Wambuii described how a large soccer organization in the slum areas of Nairobi, Kenya, began to incorporate HIV prevention, and there now is a worldwide network of sports to respond to the HIV/AIDS pandemic.29 There are several other organizations that have taken up sports

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networks to include greater awareness of HIV/AIDS, prevention, and stigma reduction. A Canadian-based organization, Right to Play, uses sport and play to serve children’s development. They are concerned that play continue to be part of children’s lives despite their problems.30 6. Songs and dancing. A former leader and founder of Amahoro Association, Kayitare Waritare, is a musician who used his music to increase awareness of HIV/AIDS, particularly as it affects children. Children have followed suit. We have heard songs created by the children presented at gatherings, songs about loss, about stigma. In a world in which these children do not feel they have much control over what happens to them, writing and singing songs shows a sense of agency. Traditional dance presentations are ever present as children greet visitors. We note that children selected to dance are very proud. I have never tired of the many presentations I have been privileged to watch, for I am always amazed at the pleasure and seriousness of the children’s efforts. 7. Drama. Earlier, in Chapter 4, I referred to RAPSIDA, a program using drama created by secondary school students. Around the development of a play for the whole school are many activities designed to engage students in discussion. In another use of drama, in Mozambique, schoolchildren take roles in real-life stories. Although it is primarily a program for prevention, the presentations and discussion are also very helpful for the ten to 14-year-old children in terms of their emotional responses to personal issues.31   Radio reaches many people in Africa. For example, in South Africa ABC Ulwazi has produced short radio programs that include soap opera formats followed by vigorous dialogue. While many of the issues involve prevention, the series also addresses the harm done through stigma. Although it is not directly participatory, the feedback has been positive.32 8. Drawing and writing/talking. These are good ways for children to begin to reveal their worries, their problems, and their grief, as well as their pride in their strengths. Skovdal and Andreouli used this as a technique to elicit children’s representations of their lives.33 When I have used drawing as a stimulant to talk, I have found it works equally well with individuals and groups. Drawings such as Patrick’s, in this chapter, show his feelings of despair at the lack of food at home and his sense of responsibility. Making a drawing and talking about it did not alleviate his

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poverty, but he was relieved for a time and glad to talk about better times when the weight of responsibility lessened. When in groups with their friends, children share their worries and hopes with one another and receive support and advice. 9. Laughter. By no means least, a unique and highly regarded program, Clowns without Borders, travels to areas of crisis and elicits children’s laughter for psychological healing. After enjoying the clowns for several days or even an afternoon, children return to their difficult situations, but they have experienced relief from those challenges in the company of friends. The children see there is another side, the possibility of transformation.34 To sum up: throughout sub-Saharan Africa, wherever children are affected by HIV/AIDS, their psychological health is a concern; whether living with ill parents, having lost one or both parents, experiencing difficulties in new living arrangements, or infected and frightened for their own health, these children have considerable need. We have seen that the usual advice, “Do not talk about these troubles,” creates silence, whereupon problems become internalized. Internalized, unspoken grief, worry, fear, and the like can reappear in their lives and cause lifelong problems. Stigma adds to children’s burdens. Explorations of how children perceive their efforts to help themselves and their siblings indicate that it is as important to include activities that boost children’s strengths and self-reliance as it is to provide for counseling for grieving and loss. Children’s social networks, if reliable and enduring, can become the means toward building resilience. In acquiring a sense of agency, children are able to create a better future.

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9 Supporting Children

The experiences of affected children in distress are discussed in Chapters 3 through 8, and listed in the first column in Table 9.1 below. We turn in this chapter to the support itself: service providers, services, and outcomes. The service providers are those who interact directly with children and families. They can be either people who know the children well, or strangers. Factors important to children include how well the providers know them, where services take place, how long the services will last, and of course, the extent of the services provided. As always, the availability and amount of funding determines many of these factors. This chapter considers a number of ways in which children are helped and highlights youth-led support systems for children affected. There is no one best model, but youth-led projects are an under-utilized possible approach that could reach many more children. “Service Providers” includes a range of people, from family and neighbors to the staff of large organizations and agencies. Lucky children may receive services from more than one source because community helpers sometimes take their young neighbors to larger service organizations for help. When NGOs network and cooperate, opportunities to support children increase significantly. As we have seen, though, the reality for many is that they may get no help or very little.1 Of those who are lucky, help may come from one or more of very different approaches. The last column of Table 9.1 considers outcomes of support, whether school-related intervention or one of the others listed. There is little study of program effectiveness. One exception examined programs that provide child and guardian services in four programs in Kenya and Tanzania. Results showed positive psychological effects from home visits, individual counseling, and the development of gardens but no effect from kids’ clubs. Because of design difficulties, these findings need exploration in further study.2 In the meantime, we must rely on case study evaluations, as reviewed below, and on experienced observation. My experience suggests that successful programs include long-term multifaceted support, community leadership, 125

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Supporting children

Children

Service providers

Services

Outcomes

•  age •  gender • orphan status • physical health, HIV status • knowledge of HIV/ AIDS • sexual practices, if any • psychological health • household composition • housing adequacy • water and sanitation • education • role in family • safety and security • level of poverty

• natal family • extended family • neighbors • unregistered community efforts • youth led associations • small NGOs • home visitors • orphan care workers • health providers • school personnel • people in religious organizations • government officials • large NGO personnel

• venue for service provision: home, office, school, other institution • what: needs addressed • who: age, gender, training • how: length of support, children’s voices • where: country, region, urban/ rural • funding

• education • health • coping ability • sense of self • work skills • family strength • autonomy • altruism

strengthening families, open discussion between beneficiaries and providers, group activities to increase children’s sense of belonging, vocational skills training, school record review, attention to health and HIV prevention, and opportunities for further training for service providers. We begin this discussion of programs by considering different living arrangements. Most Westerners think “orphanage” when they hear about orphans, but relatively few orphaned children live in some form of institution in sub-Saharan Africa. Most children orphaned and affected by HIV/AIDS are living within a family, with their mother, who may be infected, with their grandmother, who may have several other grandchildren, with their aunt or uncle, who also probably have several other children, with a more distant relative or family friend, or with siblings in child-headed households. Richter, Foster, and Sherr conceptualized the different living arrangements children experience as “circles of care.” The best way to support the wellbeing of young children affected by HIV/AIDS is to strengthen the circles of care that surround children. Children are best cared for by constant, committed, and

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affectionate adults. When the caregiving circle is broken for some reason, extended families normally plug the gap. When the circle of care provided by kin is broken, community initiatives need to stand in, and when the circle of care provided by community is broken, external agencies need to play a part. Embracing all efforts should be a strong and continuous circle of support provided by government provision and legislative protection.3 We can imagine these circles as similar to a dry vegetable hanger, with disks representing circles, each lying below the previous one. The top circle represents the child in his or her natal family; in the next, with close relatives; next, living in the community, perhaps in a foster arrangement; next, in some kind of institutional situation; and, finally, homelessness. The ideal arrangement is for the child to be in one of the highest circles. It is not necessarily the case, however, that orphaned children are doomed when their natal circle of caring is disrupted. Children also influence their context. How they experience their environment and how they interact with those they live with is important, according to the ecological view of Bronfenbrenner and others.4 That is, children are not simply pawns. Even if living with non-relatives or in child-headed households, for example, how they experience their situation determines the quality of particular circles of care. It is important for service providers to consider the whole environment and the child’s experience of it when planning actions. When, as happens in most instances, the child accepts and is accepted in a household, strengthening that household helps the child. One way to strengthen families is to provide cash. Many, not all, families in poor sub-Saharan African countries that care for one or more vulnerable children are poor and thus are vulnerable to clusters of difficulties. Cash transfers to needy families is seen as a relatively easy and direct response to the needs of a large number of children. For example, the Joint Learning Initiative on Children and HIV/AIDS recommended family cash income transfers, stating that even minimal transfers, made a difference.5 An example is South Africa’s Child Support Grant program, monitored by the National Department of Social Development. For each child, the South African government awards the equivalent of about US$40 a month. (Living expenses are high in South Africa.) If the head of the house is elderly, there is an additional pension grant. One study claimed that the cash transfers had reduced poverty levels in South Africa from 43 to 34 per cent.6 The troubling reality is that cash

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transfers programs cannot be sustained in poor countries. And, even in South Africa, children and their families who have lost mothers, fathers, and children to AIDS have struggles, such as psychological issues, that an infusion of money will not address. Ideally, cash transfers along with free schooling, access to healthcare, and mental health support would improve the situation of children and their families. There are alternatives to direct cash transfers. For long-term sustainability, other family-focused support programs such as micro-finance projects, small loans to encourage enterprise activities, and garden development, with training for older children, are helpful and engage children and adults alike. In Swaziland, for example, the Junior Farmer Field and Life Schools are creating sustainable agricultural and trained youth.7 CIRCLES OF CARE The second circle of care consists of affected children living with non-parent relatives. One study estimated that one-half of the world’s orphans are in the care of grandparents.8 It is not just grandparents, but other relatives take in orphaned children, up to 90 per cent.9 Several studies have shown that if children can live with relatives, they are more likely to be well cared for and to continue in school, regardless of poverty level.10 Ideally, grandmothers and other relatives provide safety, protection, shelter, and love. They share family history, teach values, and hold hope and expectations for the children. These non-material comforts are tremendously valuable for children, but they are not present in all cases. When poverty increases and the family head feels heavily burdened by responsibility, isolation, and poverty, familial comforts can disappear. Worries and depression develop when grandparents fear for the children’s future after their deaths, or when the HIV+ aunt with her own and her dead sister’s children have no food. Responses require a family-based approach that includes help in parenting, strengthening sibling relationships, and opportunities to attend to material needs.11 Families in need must be found and their material and psychological wellbeing assessed. Grandparents or other household heads who might feel overwhelmed by their own grief and burdens need support groups, visits by interested project leaders, and other efforts. Mostly they need to be recognized for their heroic efforts for the children of their families. The teens who are their family’s

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heads require all of the above, plus guidance and help with material needs, as well as protection and safety. Home visits are important in assessing family wellbeing, as illustrated below.

In Bujumbura, we visited a very elderly couple that cared for three grandchildren and one remaining daughter, three others having died. The grandmother was blind and dependent. When we arrived at their home, a falling-apart house in a compound of many others, we heard the twelve-year-old granddaughter we had come to meet had gone to the clinic with her aunt. Both are HIV+ and on ARVs, a lucky situation in Burundi. The grandfather said, “We are no longer healthy and it’s hard to ‘grow’ our children. The government should care for them. What I can ask is nothing – is just support. Look at her [pointing to his wife] she is blind. Myself I cannot see clearly. If you could get glasses, that would help.” The twelve-year-old had just been brought into the Burundian association, Mubafashee, a CHABHA association, and was beginning to receive critical services for herself and her family, for which the grandfather thanked us profusely. Just a few days earlier in a beautiful spot outside Nyamata, Rwanda, we visited a three-generation family living in a simple, wattle house with a good metal roof. The ten-year-old had lost her mother and lived with her aunt and grandmother. The leaders of the AJESOV Association had told us this was a strong family and the girl well cared for. It certainly seemed to be the case. The grandmother showed me the goat the association had given her; the goat had had five generations of kids. Since that visit, the family had also put the plans, tools, and seeds for a raised-bed kitchen garden to good use. They will be eating better and able to sell some of their produce. We wish all families were as strong as this one! On another trip we accompanied colleagues to an unincorporated settlement in the eastern Rand, south and east of Johannesburg, South Africa, where we visited a family of grandparents and five grandchildren. The house was built with metal roofing on the sides and roof. Inside and out, it was rather bare and neat, and someone had placed small stones to mark a path to the front door. The grandparents, we were told, were not able to do much for the children. The Isibindi project working with the family instead focused on the children, and a young adult visited them regularly and was teaching the older children about food preparation, cleaning, washing, and the like. Thanks to orphan grants and pensions, there was a minimal income on which the family survived.

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The children of these homes are luckier than most, even though there are serious problems in the grandparents’ home in Bujumbura, for these children have the care and concern of one another and their grandparents. All three were receiving regular outside support from people they knew. Emma Guest interviewed key childcare workers, and one, Rodgers Mwewa, of Fountain of Hope, a project helping street children in Lusaka, Zambia described African’s tradition of family members absorbing orphans as their own: In Africa, and in Zambia in particular, there used not to be any orphans. I mean that. When mothers or fathers died, the community elders would say to the relatives, “Who, from your family, should take care of these children?” And they’d pick someone, probably an uncle. He’d say, “OK, fine,” and he’d tell the child, “I’m your father now so I’ll be responsible for your school fees and your upbringing.” It was solid. There was no arguing and there was nothing like what’s happening on the streets now. Today, we’re breaking away from that family stuff, because if a child’s given to his uncle, it won’t be long before he dies. They’ll start looking for another person to take care of the child and that person will also die. HIV is destroying families and family bonds.12 The problem, as Mwewa said, is that this “circle of caring” by relatives had reached its limit, due to the decreasing number of adults who can absorb more children and the increasing numbers of children who need homes. This problem exists in other, highprevalence areas. When there are no viable households for children in need, many seek other arrangements, such as formal international and national adoption and formal and informal fostering within the country. Several sub-Saharan African nations discourage or forbid international adoption. South Africa, for example, requires parents to have been residents for two years before adopting. In this way, they are assured that the parents have acquired some sense of the child’s culture. Ethiopia’s more open approach has meant that many children are adopted through one of the international adoption agencies there. But even if more countries become open to adoption, it will never be a major source of caring for children for the numbers of orphans are so high. Although informal adoption has been far more common than formal adoption, new policies require proof of guardianship, so increasingly adoptions are formalized.

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Many orphans are cared for through fostering, either formal or informal. In both cases, children remain in their home countries, though not necessarily in their community. Informal foster arrangements are the family and friend arrangements described above. Where cash grants are available for families who foster orphans, foster families may be better able to provide for the children, especially if they receive guidance and personal support. We note, though, that such arrangements sometimes lead to abuses.13 When fostering works well, and child-parent bonding occurs, children benefit hugely from belonging to a family. An example of a formal fostering program for HIV+ children is Fikelela, located in a township outside Cape Town. A project of the Anglican Church, Fikelela’s Children’s Centre is a temporary orphanage; babies and toddlers move from there into foster families. Social workers bring abandoned and/or orphaned children to Fikelela for temporary shelter and to be cared for. Foster families are sought, and found, among parishioners of one of the Anglican churches in the area. Once they agree to take the child, they are trained on how to administer the drug regimen. Then, after spending time with the youngster to develop bonding, the child moves in with his or her new family. A social worker monitors the transition and makes further visits to the family.14 Then, of course, there are orphanages. If children are in well-funded orphanages they may receive a whole range of services. However, if the orphanage is struggling financially, they may only get a modicum of food and little else. In either instance, if there are many children and relatively few and unrelated adults, children’s psychological needs go unmet, and they will not get enough consistent attention for long-lasting attachment. Many orphanages have tried to overcome this drawback by appealing for volunteers, especially foreign volunteers. These volunteers enthusiastically enter into the children’s lives for a span of a few weeks to a year. On the surface, this seems like a win–win situation. There are concerns, however, that children who have already experienced severe loss – parents, relatives, community – will suffer again when their volunteer leaves. Better by far is to develop community-based childcare workers. Orphanages account for very few orphans, only 1 to 3 per cent of African orphans. Not only that, a study in Zimbabwe showed that 75 per cent of orphans in orphanages actually had relatives!15 Neverthless, according to Subbarao and Coury, overseas donors keep sending funds for more orphanages in South Africa.16 South Africa regulates the size and composition of institutional homes for

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children to try to avoid problems in larger orphanages. And there have been creative adaptations to large orphanages. For example, a program in South Africa, HOKISA, begun in 2001, cares for up to 20 children who live together in a township south of Cape Town. The children are there until they grow up, and they are cared for by well-trained workers, several of whom have been with the children since the beginning. The program provides services to the people of the township. An international program, SOS Children’s Villages, is another alternative orphanage. It was founded in Austria after the Second World War, and there are now 2000 SOS facilities in 132 countries. The children’s villages have several homes, with “families” of 15 to 20 boys and girls living together under the care of a “mother” or “auntie,” Children receive early childhood, school, and health services. The goal is for them to be integrated into the local community. There are concerns that SOS children may not be developing social capital and the ability to move into independent adulthood.17 Other programs reach out in different ways. Given the range of children’s needs, effective programs provide holistic services. By contrast, too often government agencies and large NGOs create programs from afar in a top-down structure that can become quite limited, with prescriptions too rigid for adaptation to child and family situations. Or large donors may provide money for limited service – for school uniforms and materials, for example, but not for health access. A far better method is to employ local people to first find the neediest and assess their situations. Based on the assessment, a family plan is built that focuses on the children, and, ideally, the same people who did the assessment will provide the services and build trusting relationships with children and families.18 Capacity-building for childcare workers assures programmatic longevity and success. Learning how to assess family and child wellbeing, how to maintain written records, and about other agencies when referrals are to be made are minimal qualifications for home visitors. For the leaders of projects, acquisition of accounting, guidance, organizational development, and fundraising skills are essential. When external money is available to local groups, the flow of information about authority, services, and funds needs to be clear and transparent, understood by all. In addition to meeting the children’s needs through family contacts, there are other venues for support. For example, drop-in centers offer children meals, advice on homework, and a safe, fun place

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for a period of time after school and, possibly, on weekends and holidays. Early childhood centers are particularly important, though unfortunately rare. Such centers offer small children nutritious food, healthcare, educational stimulation, safety, and, if they have enough staff and volunteers, the possibility of attention and care. We have visited sites with many children and relatively few staff who somehow manage to care for the children quite adequately. A case study summary of 32 programs serving children in South Africa reviewed a range of activities used to promote children and youth development. The authors concluded that among very different approaches, food insufficiency (despite child grants available) was endemic but could be alleviated with income-generating activities. They also found that psychological services needed to be greatly expanded. Moreover, more attention to younger children and to vocational development for older youth was needed. Unmet needs among these projects could be traced to insufficient funding.19 With many millions of children needing help, a critical issue is cost. While Chapter 10 discusses the question of money and humanitarian aid in a larger context, here we look at the costs of different living arrangements. A USAID study of the costs of programs in Rwanda and Zambia showed that the per child per year costs, based on 2003 data, were US$187.86 and US$290.41, respectively. Both relied on volunteers to deliver direct services, including food. Wary of growing dependency and cost, program leaders were seeking sustainable projects to supplement.20 Another analysis ranked the living arrangements from least expensive to the most costly. The first, family care, is the least expensive and orphanages the most, as follows: • Kin-family care with community support; • Foster care within alien families (adoption, formal or informal fostering); • Foster homes; • Community-based centers; • Orphanages/children’s villages.21 The differences are large, from about US$54 a month per child for family care to US$433 in orphanages.22 What we see is an approximate inverse of circle of care and cost. That is, in regard to children’s wellbeing, the least expensive is the preferred living arrangement; the most expensive is the least preferred.23

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YOUTH-LED ORGANIZATIONS Among programs that are relatively inexpensive are two that have similar characteristics. One is in South Africa, and the other in Rwanda and Burundi. Both are community-based and familyfocused. Both are holistic in that they provide several kinds of help. Importantly, the providers in both cases are young adults from the communities they serve. In different ways, the providers are also group leaders. The employment and training of local young adults serves them well, as they, in turn, serve their children well. Isibindi The Isibindi model of childcare was developed by the South African National Association of Child Care Workers. 24 In this model, previously unemployed or underemployed young women (mostly) and men are selected to provide support to vulnerable children and their families. These Child and Youth Care Workers (CYCWs) are assigned families, from one to as many as 14 families. While working with the families, CYCWs are themselves in intensive training for two years and learn about children’s rights, behavior management, observation and recording, human development, personal development, medical monitoring, communication with family members, conflict resolution, assessment, and ways to develop strong teamwork. The workload is high and their salaries relatively low, but far better than no salary. CYCWs provide holistic support right in the family’s “lifespace.” They make from eight to ten home visits each month – struggling child-headed households may be visited each day – and the visits can be brief drop-ins or last three hours or more. CYCWs shepherd families through the orphan grant application process, make connections with the children’s schools, and participate in and teach household chores. As they work with the children, and adults if any, they engage the children in HIV prevention and ways to reduce conflict. They do assessments of health needs, get family members to healthcare, persuade them to go for HIV testing, and make community resources available to families. Even after families have gained strength and the time for separation is at hand, they return for periodic visits. Auxiliary activities include Safe Parks, Food Gardens, and Disability Services. The Safe Parks, for example, provide secure places for play, art activities, and interaction with other children in their neighborhoods. Across the Isibindi projects,

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the cost was about US$15 per child per month in 2006.25 Annually, Isibindi projects provide care for over 20,000 youngsters.26 Each site has from about ten to 15 CYCWs, two of whom are program supervisors and one a program manager. These leaders work to enrich the team as well as their assigned families. Their salary is a little higher than the other CYCWs, and they are offered advanced training. Each program is mentored and coordinated by the National Association of Child Care, which partners with local organizations and donor representatives, and, in many cases, a local steering committee. The local partners may be religious organizations, children’s homes, drop-in centers, or other entities. There are several donors: the US PEPFAR provides for most of the cost of about one-half of the sites; the South African Department of Social Development is another major contributor. The addition of new sites over the years, twelve in 2006 to 60 in 2009 attests to the strength of the model and its ability to be adapted in different contexts.27

From my notes after a visit with Isibindi group: The work the childcare workers do is very, very hard. I am impressed. They have planted gardens, gone to offices with papers to get orphan grant support, registered older siblings as adults to be eligible for grants, cooked, cleaned, negotiated at school, helped with homework, and more. They meet to talk together once a week and one CYCW told me they really rely on one another. Together they problem solve, seek outside help, support, and work to alleviate difficult situations.

The childcare workers meet very challenging situations.

Together with two other North American visitors and the local leaders of an Isibindi project, we made a series of home visits. Tragically, at the last visit, we found a young woman dying, the single mom of two young girls. The family CYCW, a young woman in her twenties, said the mother had quickly succumbed to the disease after she had stopped taking ARVs because she had lost her clinic papers. Now, two more orphans would need support and help from the project and the CYCW, and the CYCW would need support, too.

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Aware of the psychological toll on the CYCWs, the Isibindi model has added a program of support called “Care for Caregivers,” a six-month set of supportive activities for the team and individual CYCWs at some sites. Although problems with “Care for Caregivers” were found, mostly the help was appreciated and increased team strength and individual resilience.28 Children Affected by HIV/AIDS,CHABHA (www.chabha.org) I have had the great fortune to observe, work with, and learn from a group of amazing, talented, though underemployed, young men and women who have brought help and solace to children in Rwanda and Burundi. These are the founders and leaders of associations of children, and they devote lots of time and considerable thought and care to affected (orphaned, infected, and/or living with HIV+ guardians) children. Their stipends are very small but their impact on the children large. When CHABHA was just forming in 2003 we met a young man in his twenties, Eric Rwabuhihi, who was instrumental in locating the first partner association. CHABHA is now linked with three associations in Rwanda and one in Burundi, as well as a vocational education intern program in Rwanda. CHABHA in Rwanda consists of a small staff; its US office works closely with the Rwanda office. The associations are autonomous but rely on CHABHA for financial support and general guidance. The vocational program, Project Independence, trains older children from the associations and is administered by CHABHA. There are differences in the associations, but the commonalities form what we call the CHABHA “model.” The associations were (all but one) founded and shaped by young adults, people in their upper teens and early twenties, who, for the most part, had been orphaned by genocide and AIDS. They got together to help one another raise their younger siblings. Even though they started without any funding, they drew the children together weekly at large gatherings that engaged them in fun activities such as games, traditional dancing, and singing as well as classes on life issues. The children experienced relief from their difficulties at these gatherings. Word of mouth and neighborly concern brought other children. Eventually the associations and CHABHA found one another and negotiated partnership arrangements, a process that took time and was not always easy. For example, Eric Rwabuhihi tells of how he drove out to a rural village to visit an association in the process of partnering. He had the equivalent of US$2000 in his pocket for payment of school fees, but because he found the

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leaders had not fulfilled their part of the process of setting up the partnership, he showed them the cash and returned it to his pocket. He told them they would have the money when they came to the Kigali office with evidence of completing the organizing required. They did, that project has prospered, and the commitment level of the leaders remains high.

From my notes after a later meeting with the leaders of that association: I had asked a leader of AJESOV to tell two visitors how and why they started working with children of their association, AJESOV, Association of Youth Volunteering to Help Orphans of AIDS, located in Nyamata, Rwanda. The AJESOV leaders explained that in 2004 when they were in an anti-AIDS club they noticed that orphans of AIDS in their community were not being helped. “Nothing was done for them. So we stepped in. We know the children we helped. We needed to find money, and we appealed to the District Vice Mayor but nothing happened. And then we called Eric and CHABHA came to help.”

The associations and CHABHA have three basic goals: 1. to provide holistic support to meet children’s basic needs; 2. to provide children with strong psychosocial support; and 3. to enable leaders and other youth to develop into independent adults. To accomplish the first goal, the associations, with help from the CHABHA staff, (1) provide for school costs for as many children as funds allow, (2) purchase health cards for basic clinical services (not available in Burundi), (3) provide time for informal fun and learning, (4) plan and teach Life Skills workshops during holidays, and (5) respond to emergencies. Weekly gatherings, home visits and, when needed, special meetings with children are the vehicles for meeting the second goal, psychosocial support. Finally, vocational training programs and start-up enterprise activities help realize the third goal, developing independence in adults. These activities often merge with one another. Key to achieving these goals are the association leaders – who they are, how they work, and the support and training they receive. The associations are each registered with their local government districts, and in that process have developed organizational frameworks. The

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leaders have consensual decision-making methods used in planning the gatherings, home visits, workshops, and allocation of funds for children’s support. They make the hard decisions about the extent of support for different children based on assessments of family resources. Each has one or two administrators chosen by leaders and CHABHA. The CHABHA staff works with the leaders in capacity-building and by providing direction and guidance both directly in training programs and through close sharing of work. The CHABHA director handles financial matters, carefully allocates staff to the association and reports to the home office. Budgets are developed through consultation between the association leaders and CHABHA’s Rwandan director and its US executive director and board. CHABHA, USA is a registered non-profit organization in the USA and an international NGO in Rwanda; CHABHA, Rwanda is also a local NGO there. Funding is through private donations, largely from the USA, and grants. Altogether, annually there are nearly 3000 children receiving some support, some much more than others, at an average cost of about US$75 per child per year (does not include food and shelter). Many of the original association leaders have gone on to start their own families. Two of the associations have held elections to replace them. Most of the newly elected leaders are former beneficiaries. One new leader – I’ll call him Joseph – tells his story: [Because my mother died of AIDS, the other children] would make fun of me. So, therefore I decided to go somewhere else where I was not known by some one and live the best I could on my own … One day I was wailing, tears rolling down my cheek. A neighbor was traveling around. She stopped, she asked why I’m crying. After thorough counseling, she told me about one association which helps children orphaned by HIV/AIDS. Since that day I joined Amahoro, which is run by CHABHA. In Amahoro I found many children that have the same problems, and they advised us to think positively and live a normal life like before. Now I’m a student at the National University I’m doing my best to have a better future. This past year I was elected to the Amahoro committee. That is a good opportunity for me to give back to my brothers and sisters in Amahoro. [He won a competitive bursary to the University.] It is this process of “giving back” that marks relationships between the children and their families, leaders, and CHABHA staff. With

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leaders who were beneficiaries just a couple of years earlier the associations have created a generative leadership process that all are proud of. Home visits are carried out by all the associations, and although the main purpose is to consolidate personal relationships among the children, their families, and leaders, these visits also provide information that leaders use to make decisions about support for essentials. Leaders, administrators, and CHABHA staff meet families in their homes and talk about special challenges and successes, school progress, health, food security, and any other topics they bring up. Their records of these visits are useful for assessing need and for on-going support in subsequent visits. The children speak of these visits very positively. “I wish they would come more often,” said Alicia, a brave 14-year-old who is HIV+. Irene, now the Amahoro vice-president, recalled an earlier period and the impact of home visits during a difficult period. She was 16, the head of her household, with two younger brothers. “Amahoro visited at our home, advised me on being the head of the household, and paid my school fees. They taught me how to protect myself and my younger brothers from HIV since our mother died of AIDS. Amahoro gave me the emotional support to raise my brothers.” The weekly gatherings are still the hallmark of the CHABHA associations. Children walk many kilometers to take part in the singing, dancing, fun and games, and skits, and talk in small groups. They make connections to one another and to the leaders. Chapter 8 presents some children’s comments on the gatherings. A 13-year-old girl who lives with her HIV+ mother and three siblings said, “I come to the Saturday gatherings every week. I like the stories we tell one another and the singing. My friends come, too.” A relatively recent alternative gathering has been to engage the children in helping one of their member families. In Rwanda, these take the form of the monthly Saturday mornings in which everyone is expected to engage in some kind of civic improvement activities, a process called umuganda. The children of one association now get together and are making bricks and building an outside kitchen for one of their families. Activities like this demonstrate to the children that they can be agents of change. The Life Skills workshops held during school holidays are for sharing information about physical development, family and community responsibility, hygiene, children’s rights, HIV prevention, and, now that one association is engaged in family kitchen gardens, agronomy. The topics are serious, as the children acknowledge,

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Figure 9.1  A gathering

but the leaders always include fun activities in their planning of workshops. Games, sports, skits, stories, and good food mark these popular activities. A transformation has taken place in the Kigali CHABHA office. The leaders of one association share the space with the CHABHA staff, and nearby member children come whenever they want. A resource room holds hundreds of children’s books (a rarity) and art and sewing supplies. Soon to be added to the room are computers with internet connection. This house, Iwacu, or “our place” is another component of the set of experiences that builds positive, hopeful sense of belonging to something important. One boy said, about being with others, “It takes away from loneliness and isolation. Good games. Being with others. It gives me motivation for studies. Good to meet people with different problems. It is good to be able to play with people with the same problems.” The third goal for the CHABHA model programs, independent adulthood, is facilitated through Project Independence, the vocational education internship program. Unfortunately, in Rwanda relatively few adolescents go to secondary school because of cost and entrance limitations (Chapter 7). For out-of-school older members of the associations the program provides training in

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restaurant work, hair dressing, tailoring, construction, welding, and the like. The CHABHA staff negotiates arrangements with successful business people to take cohorts of students. Seventy per cent of the first group had jobs or were engaged in some kind of informal enterprises within six months of finishing their program. One 19-year-old young man tells of his experience: I could not go to secondary school, because I had to support my sisters by working odd jobs, such as collecting water for the neighbors. Before I was living day to day. Though now, after hard work and completing my program I have a stable job as a cook. I have some food now and can even open an account at a local bank. Since my sisters are not in a school, I would like to be able to put them into school or vocational training. My mom is sick [HIV+], so I have no long-term plans beyond caring for my family. It is difficult to find jobs, especially for the young. In response to the need for more income producing enterprises, CHABHA and the associations are developing sustainable ventures. All the families of one rural association received goats, which have multiplied and provided families with some income. Those same families have recently been helped to start kitchen gardens, and plans are under way for further agricultural training in Project Independence. Two boys who completed construction training have been awarded a small grant to purchase equipment to start their own business. A group of children started a rabbit enterprise, and now, another group in a different association are in the rabbit business. Those who are part of the rabbit enterprise have promised to give first offspring to other members. The leaders and staff are exploring sources to start a chicken farm and a soap-making project. These two models, Isibindi and CHABHA, support children with multiple services, and they do so by improving the conditions of the families as well, thereby strengthening the children’s particular “circle of care”. Both programs depend on local unemployed or underemployed service providers who are young, without marketable skills in depressed economies, and eager to learn ways to care for children in circumstances they themselves experienced. They know the necessity of providing a range of needed services to children in need that include psychosocial support and recreation. Both programs rely on external financing, and both are relatively low cost. Training is much more intentional and formal in the Isibindi model than the CHABHA program. Youth leadership development

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is evident in CHABHA through Project Independence and capacitybuilding with the leader groups. There is an issue that requires further consideration: the stipends for the young leaders in both programs are very small by the standards of donor countries, but do compare with local salaries. As leaders learn of these discrepancies, they are understandably upset. In Rwanda, for example, there are many NGOs with young fieldworkers from Europe and North America who earn more and live more comfortably than local fieldworkers. A two-tiered compensation situation is not healthy, and programs should consider this issue early on. Across sub-Saharan Africa there are other programs that draw on local persons to provide holistic services to strengthen families and children made vulnerable by HIV/AIDS. Still, only a small percentage of children in need are actually helped in these ways. Indeed, there are those who claim that such efforts are so scattered and small-scale, they cannot rise to the challenge children present.29 So the question is: How can positive and efficient examples such as Isibindi and CHABHA be scaled upward? Yes, Isibindi has presented an impressive increase in number of children served, but in view of the 1.9 million orphans in South Africa, even Isibindi has not begun to meet the need. And CHABHA has not fulfilled its potential. How to expand support with these models or others requires determination, knowledge, skill, and, yes, money. I look to the example of CINDI, Children in Distress, centered in Pietermaritzburg, South Africa, which has been serving large and small (mostly small) community projects supporting children for many years. Through the 52 full member organizations and 100 affiliates in eastern South Africa, CINDI provides resources of all kinds: advice, publications on every possible topic, workshops, working groups, grants, school support consultancy, and so on, to local community-based projects.30 How we wish there were networks in other impacted regions that could support and strengthen community responses as do Isibindi and CHABHA.

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10 A Matter of Money and Intention

By highlighting two community-based programs, I demonstrated that increasing the capacity of unemployed young adults to support children in need improves their own situations, too. When we remember that only about 15 per cent of HIV/AIDS affected children receive some kind of external help, though, it is clear there is tremendous need for more community-based programs including those implemented by young adults. Two important ingredients are money and intention. Getting money to children is not a simple matter. It requires that local community leaders be empowered with enough financial support to make a difference for impoverished children. This chapter is about the flow of money, about valuing children’s wellbeing, and methods for supporting local leaders. I begin with the money issues and draw on the work of economists and researchers to explore the usefulness of foreign aid. The processes by which aid is helped and hindered by current practices explains in part the problems of getting money to community groups that work with HIV/AIDS-affected children. Questions about priorities, values, and will are addressed, and the chapter ends with recommendations about reaching more children. Impoverished countries of sub-Saharan Africa cannot meet all the needs before them to improve access to healthcare and education, to extend maternal and infant programs, to provide treatment and prevention for HIV/AIDS, and much more. External funding is required, but, as we have seen, money from donor countries, multinational funding organizations, and private foundations is increasingly limited. Beyond the total amount of foreign aid a country receives is the issue of how and where it is expended, whether it reaches those in greatest need, and whether it changes matters for affected children. The difficulties experienced in reaching the MDG goals for poverty, health, and education illustrate there are many obstacles, not the least of which are uses and misuses of foreign aid. It may be that foreign aid is the wrong way to go, and economists differ on this. Dambisa Moyo writes that aid is, indeed, the problem.1 143

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She looked at the economies of countries of sub-Saharan Africa over the last several decades and concluded that because of slow or no growth “aid is not benign – it’s malignant. No longer part of the potential solution, it’s part of the problem – in fact, aid is the problem.”2 Robert Calderisi takes a tough look at what he considers to be mostly failures and suggests cutting aid, focusing it on a few countries already on the right track and on education and HIV/AIDS, as well as supporting improved, more responsive governments.3 Other economists, such as Paul Collier and William Easterly, say about aid that it would make a difference but only if done differently.4 Paul Sachs also says about aid that it could change whole communities, and his institute has funded Millennium Villages, including villages in Rwanda. These villages are provided hefty amounts of aid for five years in the form of technical support in agriculture, business development, healthcare, and education as they work to develop new businesses and development leadership.5 Although they have different solutions, economists tend to agree on the problems with the processes involved in foreign aid. For example, they point to the punishing costs associated with repaying country debt. In fact, Poku points out that in Tanzania the government spent three times more money servicing its debt than on healthcare.6 Although there have been instances of debt forgiveness – for some countries – countries such as Tanzania still suffer having to repay earlier loans. Debt servicing is one problem. Country dependence on foreign aid is another – one that may be increasing. Because of HIV/AIDS, there are enormous costly health needs that governments of poor, sub-Saharan African countries cannot meet on their own, and as a result, much aid has been flowing to healthcare. Many country responses to HIV/AIDS are dependent on foreign aid. As we saw in the Chapter 4 discussion of flat funding predictions, foreign aid has been critical to country responses to HIV/AIDS. Several sub-Saharan African countries are heavily dependent on foreign aid. Among the focus countries, Rwanda and Zambia stand out. Then there is the issue of how aid money is received – how government agencies or NGOs manage the aid. Foreign aid may be placed in country budgets to be processed by local governmental employees. Money may also be awarded directly to independent NGOs, and in this way avoid possible governmental bottlenecks and bureaucratic delays. Avoiding government bottlenecks may be appropriate in the short run because start-up through NGOs can happen with greater dispatch, but building responsive governmental

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agencies is also important long-term. But even here there are problems. Government agencies and big donors often contract out to smaller NGOs to implement projects. For example, PEPFAR farms out projects usually to US-based organizations: universities, faith-based groups, and firms. These organizations may in turn award contracts to even smaller NGOs. The problem comes as money is contracted to several agencies and each one extracts money for its administrative and technical activities so there is less for the intended beneficiaries. By contrast, small organizations can move money more directly to intended recipients and far less expensively. Gifts to CHABHA, for instance, are banked in the US, transferred quarterly to the CHABHA account in Kigali, and then allocated directly for the specific agreed-upon services for children. Linked with the locus of the money is the problem of corruption – the more hands (offices) the money flows through, the greater the opportunity for corruption. And yes, some foreign aid is stolen. The battle against corruption needs real accountability, accountability with teeth, and increased transparency. But efforts to increase accountability by Western donors by adding conditions on grants sometimes fall on deaf ears. Africans recall how the US poured money into Zaire (now Democratic Republic of Congo) during the reign of the dictator, Mobutu Sese Seko, even as it was known that he sent the money right out of the country into his own Swiss bank accounts. So many ignore calls for reform from countries that have been seen as practicing poor policies. Yet increased transparency in accounting for money is really important. In 2010, according to Transparency International, corruption scores in the focus countries ranged (one to ten) from severe in Burundi (1.8), a bit less severe in Tanzania (2.7) and Zambia (3), to mid-levels in Rwanda (4); and South Africa (4.5).7 As corruption increases, governments become less responsive to their citizens. In these situations, children and families are left on their own. I remember a young HIV+ woman telling us she wished her government would put people living with HIV in charge of departments that were recipients of foreign aid; the money would get to the people it was meant for and it would move quickly. Burundi is an example of a country with high corruption and low responsiveness to its children. One would think that funding for HIV/AIDS would be immune to corruption. After all, the money keeps people alive. But, sadly, it is not the case. Jon Cohen reported on the case of Uganda. Beginning with a whistleblower, the Global Fund to Fight AIDS, Tuberculosis, and Malaria discovered serious misuse of money from grants

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Burundi experiences extremely high levels of corruption and, after decades of civil unrest and genocide, it now ranks third from the bottom of 169 countries on the Human Development Index.8 Burundi is the classic case of human suffering in the context of high corruption. We have seen that more than half the children of Burundi are stunted, with high rates of underweight, high child mortality, and low levels of schooling, especially among women. The 70 children of Mubafashee (We Help) that CHABHA supports, though malnourished, with lost school years, orphaned or living with parents who are HIV+, still are lucky for they are now getting some help, not only the regular CHABHA services, but families have micro-finance loans to earn money for food. The leaders are five young women who make a huge difference to the lives of these children and their families. It has not cost a lot for this direct aid to a local group to change the picture for the children. Strengthening children and families creates civic responsibility and security.

made to Uganda between 2003 and 2005. A national commission reviewed the situation, and reported the money had disappeared in ghost trips, receipt forgeries, lack of accountability, nepotism, medical care for a government minister, and for keeping money meant to be disbursed to outside groups.9 Recent discussion reveals that Uganda is not the only country where Global Fund money has been misused and stolen.10 The Global Fund is responding with vigor to reduce potential corruption. Further problems exist on the sending side of things, too. Private foundations and public agencies are prey to a kind of hubris about the “help” they provide. For example, in program planning, waste results when outside planners are not participating in a trusting relationship with recipients. When experts assume what local people need without knowing the full experience of people’s lives, expensive mistakes happen. I once saw a mistake in a partnered project with the Namibian Ministry of Education, USAID, and the Peace Corps. Inexperienced Americans whose job it was to advise primary school teachers on “learner-centered” approaches had problems getting to their schools, so the project purchased red Jeeps for these advisors. The problem came when they were told not to pick up people because they did not have the proper insurance. So they had to drive right by people needing rides, even people they knew. Those red Jeeps brought on guffaws among Namibians and aid workers alike.

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Experienced aid workers and beneficiaries know that a lot of problems could be avoided if project designers understood the context of projects better. Too often external grants and loans come with conditions that restrict how the money can be used. While there cannot be total license to spend money on the ground, the boundaries must be broad enough for local leaders to meet current needs. Similarly, heavy demands on grantees for proposal and report writing need to be weighed carefully. In the early days of PEPFAR, we heard complaints about reporting practices that recipients felt interfered with the work at hand; adjustments were made to ease the problem. Another issue for grantors to consider is the length of time of grants. Most of children’s needs last for years, so multi-year grants are much preferred to one year efforts. Recipients of aid need to respond carefully to donors, and those responses must be carefully created to promote transparency, of course, but also so as not to interfere with the work.11 Today there is an effort to include potential beneficiaries in donor planning. Local people invited to sit in on planning sessions with experienced experts are prepared so that they feel able to speak up about the reality they know. It is very important that donors hear from local people to know their funding is helping the most destitute. The poorest of the poor need the closest attention and support, and these are the children and families who are most difficult to locate and sustain. In this way they can avoid the problem cited in Chapter 6 about programs serving the easiest to find, the “low-hanging fruit.” Collier makes the case for reaching the hard-to-find, the “bottom billion.”12 William Easterly has little patience when it comes to planning that occurs far from the intended goal. He differentiates between “planners” and “searchers.”13 Planners set up programs from afar and create big goals, such as the Millennium Development Goals; they avoid real accountability and repeat their mistakes. Searchers, on the other hand, see a local problem, explore ways to try to solve it, and keep at it until the problem is solved. The young man in one of the CHABHA projects who said, “I could see orphans of AIDS around here who were not supported. So that’s how I came up with the idea of the association” is a searcher. Searchers must join with one another to extend their effort and funding sources. Invitations to searchers to join in planning larger-scale responses are essential. Another problem on the sending, donor side is the practice of “tying,” Although it is not the only donor country to tie its foreign aid, the United States ranks only sixteenth among 22 wealthy countries

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for the quality of its overseas development aid, largely because the extent of this practice in US grants.14 Tying is the requirement that projects receiving funds from a nation must purchase goods and services from the companies and experts of that nation. A project in Rwanda with USAID money was required to ask a US retired professor to evaluate it, and they had to pay for his travel, expenses, and consulting fee out of their grant money.15 How much better it would have been for the project leaders to draw on local expertise for far less money and greater local knowledge growth? An example of tying is in the distribution of food in times of crisis – drought or conflict. Considering the levels of malnutrition and stunting among young children in sub-Saharan Africa, food aid is important, although of course direct food aid cannot be sustained. The World Food Programme of the UN is huge and delivers food to millions facing emergency situations, more than 90 million people in 2010.16 Bilateral food aid adds to the effort to feed the hungry, but there are obstacles. For instance, the US Department of Agriculture follows these tying practices: food for international donations must be bought from US farmers; it must be shipped in US ships. There has been a bit of loosening of the first requirement, but not of the second. If instead food came from local or regional sources, it would be cheaper and would develop local agriculture. Indeed, in place of food aid, donors and recipients are developing programs for improved agricultural production in sub-Saharan Africa. The size of overhead on many grants and loans is a problem as well. In order to raise funds and distribute them wisely, organizations need effective administrators and administrative procedures. It costs money to administer programs, and the amount of that money, in overheads, differs from donor to donor. There is no magic percentage for appropriate overheads costs, but some excesses make one question the real mission of some agencies. In the US, its overseas aid agency, USAID, has reduced its staff, and, as a result, contracts out work to a variety of agencies, most of which receive USAID funding year after year. Ken Dilanian found that the chief executive officer of the American Institutes for Research received US$1.1 million in 2007. Another said that his similarly high salary was in line with other heads of non-profits. A third, along with payments to his wife, daughter and brother-in-law, received close to US$1 million. An administrator in USAID said that these bloated sums reflected a process that has been occurring for 15 years.17 Amazingly, the US is not rated at the bottom of rich countries

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for its practices, but it is surely, and correctly, noted for its tying and overheads. A further problem on the sending side concerns equity. Foreign aid tends to move toward countries where the donor country has strategic interests. Sometimes it seems that donor countries often have “pets.” A special section of Science on the funding for HIV/ AIDS in 2008 illustrates this practice. The funding from PEPFAR, the Global Fund, the World Bank, and the Bill and Melinda Gates Foundation for HIV/AIDS programs was combined for twelve countries. Of these twelve, Rwanda was at the top of the list. Other countries with higher prevalence rates had significantly lower per person funding; for example, the Democratic Republic of Congo.18 It isn’t just the HIV funding that is uneven. I divided the total development aid that was sent to the five focus countries in 2008 by the population and found these amounts of general aid: Burundi, US$61; Rwanda, US$94; Tanzania, US$53; South Africa, US$22; and Zambia, US$83.19 Again, Rwanda receives the largest per person as well as the largest for HIV/AIDS. These considerable inequities result in the likelihood that an infected, orphaned child in Rwanda can expect more support than her counterparts in neighboring countries. One reason for Rwanda’s favored standing is guilt: donors are making up for ignoring Rwanda during the genocide. Another reason is that Rwanda is safe, secure, and moving forward at a relatively fast rate. Rwanda’s government is accountable for its foreign aid. Moreover, President Paul Kagame makes public statements about the failure of aid to further African economies.20 He does this while Rwanda continues to receive high levels of aid. Perhaps, like me, you question practices associated with foreign aid such as some countries receiving more funds than others, some countries continuing to receive funds even after corruption has been found, or continuation even when goals have not been reached. If reporting systems are not strong, transparent, and well understood, sometimes donating organizations may contribute to funding problems. Money may flow with “more of the same” practices because the aid is simply easier to maintain than to close off. Moyo may be right that aid is the problem. On the other hand, careful targeted donations that involve children can make a difference. NGOs, religious organizations, individuals, and civic groups contribute money, time, and expertise. Large NGOs such as World Vision, Heifer, Save the Children, UNICEF, and others intend to make a difference to large numbers of children, and they

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often succeed. Small ones such as those featured in Chapter 9 do as well. Is it enough? With these general complications and difficulties in foreign aid and the magnitude of the problems resulting from the HIV/AIDS pandemic, it is important to examine funding for affected children. A recent study by the Africa Child Policy Forum analyzed how 50 African countries budgets reflected child wellbeing. Across the 50 countries, a sizeable gap exists between the average percentage of available money allocated for health and education and country commitments made at international meetings. In addition, compared with the worldwide average expenditure for child protection (poverty reduction and security), the African countries are far behind.21 Interestingly, of the focus countries, Tanzania is one of the top seven “child friendly” countries, while Burundi is one of the bottom seven.22 In general, the study found that budgets are developed in response to the elite of countries, are not transparent, and have poor tax collection processes. Given these country-level problems plus the expected lowered levels of foreign aid funding, an important question arises: “Can a developing country support the welfare needs of vulnerable children?” The Joint Learning Initiative on Children and HIV/ AIDS published papers in late 2008, before the economic turndown, and the group tasked with “social and economic policy” commissioned responses to this question. Valerie Leach focused on the most impoverished children of Tanzania and concluded that extreme destitution could be alleviated with about 11 per cent of the national HIV/AIDS budget.23 A very different response came from Malcolm McPherson’s analysis of the situation in Zambia. He determined that the cost of providing three million affected children with sufficient aid would capture the lion’s share of the country’s GDP and was therefore untenable.24 Even if international aid were made available, according to McPherson’s analysis, it would cause the country’s economy to unravel. This is indeed an alarming response, since McPherson’s argument could apply to most nations of sub-Saharan Africa. But there is a problem in McPherson’s analysis. His cost per child per year of US$1000 seems incorrect. It was based on “A Google search of cost estimates reveals data from several hundred dollars to a few thousand per child per year.”25 We have seen that it is possible to support children for much less. Chris Desmond worked on the figures and suggested lower individual child costs for support that would bring country costs to about 5 to 15 per cent of country GNP.26 Another paper

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used similar premises as McPherson but turned the conclusion on its head in deciding that developing countries cannot afford not to provide the poorest children with help.27 Alex de Waal and Masuma Mamdani concluded that “new mechanisms for raising and disbursing these funds will be needed.”28 Since the economic problems began in 2008, that comment is even more compelling. These new mechanisms include mobilizing new local and external funding sources and improving the way in which money flows so that community groups receive money more directly. How money can get to community-based leaders who work with children in need is the issue for they are the ones who provide the most help. Geoff Foster wrote in 2005, “communities provide more than 90 per cent of the economic support currently received by AIDS-affected households.”29 Quoting the figure later, de Waal and Mamdani wrote that it was “if anything an underestimate.”30 There are many faith-based programs that focus on children and families included in the 90 per cent. Sometimes community and faith-based arrangements are as informal as a few families helping a destitute family. With such local, informal arrangements, it is often a matter of the poor subsidizing the really poor. These helpers need financial support. But, in the flow of finances, “current aid allocations are unable to find their way through to community groups.”31 External agencies have become involved in more recent years, but there is some evidence that some may not relate well to community groups. Issues of mistrust dampen possibilities.32 To reach more children there must be available money, and community leaders must learn how to gain access to the money. On one of our first trips to Rwanda, in 2004, Belinda Whipple Worth, CHABHA Board member, and I met the leaders of an association we were considering partnering with and asked them if they had tried to find funds from the government or one of the many NGOs there. They had registered with the government, but there was no funding available. The staff of a large NGO had visited them but had not provided funding, perhaps because the “office” had only one shelf, empty save two piles of paper, a few chairs, and two empty desks. Due to the upheavals of the genocide, responsibilities toward their siblings, and lack of money, most of the leaders’ schooling had been truncated, and they were not able to write proposals, keep accounts, and report on activities – all of which were required by the NGO world. The result? They could offer the children the benefits of the weekly gatherings, which were

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considerable, but could not address other essentials until CHABHA was able to help. For community groups to provide ongoing support to children and to handle any finances effectively, they need new skills. Leaders need to know where there is money and how to write proposals. They need to learn about budgets and accounting for income and expenses. Transparent accounting systems protect against staff “borrowing” and increase fairness. Great care with the money is important from the beginning, and fund-providers need to begin with modest amounts so that competition among leaders is avoided, dependency on external money is avoided, and decisions are made to encourage local initiatives.33 Over the years of budget discussions with the CHABHA partners it has been very gratifying to see some growth in this area. The first time I asked a group to come to a meeting with a draft budget, I was astounded. They had a budget, for sure, but it was about four times the amount they had received the first year. We asked them to pick out the items that were necessary and to reduce the total to one-third of their first draft. After they had talked, they came back with a budget one-half the original size. So we went through all the items one by one, discussing their importance to the children. We finally arrived at a sum closer to what CHABHA could manage, and we all learned a great deal in the process. These discussions have been very helpful, as they increased trust and clarified goals. Nevertheless, organizations must constantly stress the importance of transparency and accountability. Community-based projects are strengthened if they are a part of networks of similar projects. On their own, too often a single, energetic leader becomes exhausted, leaves, and in the vacuum services are reduced, and the effort ceases. CHABHA and its partner associations are in constant communication with one another, are all registered with the government, and by participating at the district and national levels, ensure that their activities are aligned with national policy. They make good use of local resources. This is the sort of arrangement recommended by the Joint Learning Initiative on Children and HIV/AIDS.34 When community groups have long-term relationships with supportive external funding organizations and government agencies, their work is greatly enhanced. Although both the Isibindi and CHABHA projects belong to parent organizations that raise funds, the sources for the funding are quite different and illustrate options that other community projects might pursue. Each Isibindi project has its own partners

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who seek funding so that the childcare workers and leaders are not burdened with fundraising. The organizing partners receive some South African and international grants. In CHABHA the US office has done the bulk of the fundraising and has benefitted from the generosity of individuals and church groups. In addition, we have sought grants and are grateful for help in this direction.35 Because it now has NGO status in Rwanda, the CHABHA, Rwanda, organization can apply for local money. Groups of youth in the CHABHA-supported projects are working toward sustainable enterprises to take over some of their costs. These efforts include involvement in fundraising among local elites. This challenge to raise awareness among local elites is important, a potential source for additional help to impoverished children and families. I have been surprised by the lack of awareness on the part of the local wealthy. Even our older beneficiaries wonder. Henrique said about the source of money for his association, “there is CHABHA. It’s hard work to fund us. Here there are a lot of people who have money but they don’t do it. I can’t believe that people from America can help us. They never know us.” Often the children of the local wealthy are the ones who get their parents to become aware. Once they are aware, the challenge is to encourage wealthier citizens to feel the obligation to help fund local projects. As Chris Desmond wrote, “poverty, HIV and AIDS, compromised child well-being and many other social ills are the result of the failure to address local and international inequalities … In the poor world, wealthy elites continue to live lives of excess surrounded by poverty.”36 What is needed is knowledge, a growing commitment to act, and accountability. There remains, however, uncertainty about whether it is possible to meet the needs of the millions of impoverished children even if the local elites are involved, corruption ends, efficient systems developed and expanded, and donor practices improved. McPherson raised a tough but important question: “If a developing country government decides to support the welfare needs of children affected by AIDS, what responsibility does it have for the welfare needs of those who are hungry, uneducated, in poor health, displaced, and marginalized?”37 What are the alternatives? One is to continue current practices. Another is to focus on those at the very bottom. A third is to select one or two fields of activity – education, for example. The fourth is to capture the “low-hanging fruit,” – help

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for those who will respond easily. For me, the answer is to provide for the poorest orphaned children. Help for children in need has been valued for as long as memory itself. Religious observers know they are called to support and care for orphans and widows. From the Qur’an: “And they give food out of love for Him to the poor and the orphans;” for spiritual ascent people do well by “the giving of food in a day of privation to the orphan with claims of relationship.”38 From the Judeo-Christian Bible, “Learn to do good. Seek justice; Reprove the ruthless, Defend the orphan, Plead for the widow.” Again, “Defend the cause of the weak and fatherless.”39 In the Christian gospels, Jesus, listening to a man who wants to know how to gain eternal life, says, “You lack one thing; go, sell what you own, and give the money to the poor, and you will have treasure in heaven.”40 The 194 nations of the world that signed on to the Convention for the Rights of the Child essentially agreed that children’s rights include basic essentials. In so doing, at least in theory, both receiving and donor countries agreed to a many-sided response to children’s rights. The Convention’s intention is that states step in when parents or others responsible are not meeting these basic standards of living. Professing good intentions, many countries have issued policies in line with the Convention. Moreover, we have to agree with de Waal and Mamdani, “Poor and vulnerable children remain a constituency that can safely be ignored.”41 There is this additional consideration: unhealthy, angry youth can pose threats to their country’s future, and, mobilized, they could bring danger to neighboring countries. Religious references, international legalities, and ideals of human solidarity have guided many people and organizations to serve children. Their numbers must increase. Young adults who are healthy and at least minimally educated, who feel part of the community, and who are able to function independently provide a durable future to care for their families and communities. Again, from de Waal and Mamdani, The costs of inaction are to be located less in the monetary impacts of failing to care for the poorest and most vulnerable members of our societies, than in the failure of humanity that is indicated by an indifference to the plight and rights of these individuals.42 Once the idea is accepted that many more children must be helped, attention turns to recruitment. A US woman friend whom I respect chose a “do nothing” option. She didn’t want to hear about

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the children we met in Africa. Her reason – how could she make a difference in the face of such calamity? She is not unique. Her reluctance was not due to indifference; instead she was afraid of the amount of suffering. One story, known perhaps to many, touches on my friend’s response and helps in recruitment. “The Starfish Story” has many versions, including the one below.43

A man walking along a beach one day came over a dune and saw spread as far as the eye could see millions of starfish flopping along the edge of the sea. A young woman was steadily, ceaselessly picking starfish up, one by one, and throwing them into the sea. The man asked her, “Why are you throwing them into the ocean? You’ll never be able to get them all.” The young woman said, “That’s true, but the sun is high, and the tide is running out. And I can save this one,” as she threw another into the sea, “And this one,” as she threw another.

The story is a romantic vision of how to respond to the reality of the millions of children in need. It serves as a metaphor for our work and validates smaller efforts. It helps reduce the ache of wondering about the many while we are trying to make a difference to a few. We cannot help all the children located at the bottom, but we can help these children, the children before us. If our numbers increase, we get closer to reaching all the children. Individuals and groups do make a difference. For those in Africa who would like to volunteer and/or raise funds, it’s easy to find community projects. The best way to get to community groups is by getting into conversation with people in communities, including officials of governmental district offices. It makes sense to meet the children and leaders of any organization before making a commitment. People living in Europe, North America, or elsewhere find it more difficult to find viable organizations to support. Online sleuthing tells a lot, so choosing a country of interest, and seeking programs for affected children, is a beginning. There are some simple guidelines for volunteers. Rather than taking staff time from work with children, volunteers should make their own travel and lodging arrangements. The best way to learn is to listen to find pressing needs that meet with volunteers’ skills so they can really support the host organization’s work. CHABHA has benefitted from short and long-term volunteers, and a few have been highlighted.

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David Loewenguth volunteered in Rwanda and Burundi for nine months, learned how the projects worked, and, after his return to the US, became CHABHA’s new executive director. For those who want to help raise funds for community-based projects they have selected to help, it is important to make long-term commitments. Creating an organization for fundraising requires a number of steps. One is to gather a number of like-minded volunteers to work together. The project to be helped should be registered with its country government, and the fundraising organization also needs to be organized and registered. Regular methods for transferring and reporting expenditures must be established. Clarity of accounting and expectations are important from the start. Evaluations are important, and they must be relatively simple. Transparency is critical. Visits to the project are important in understanding needs as well as assessing progress and accountability. We have learned through our work with CHABHA to keep focused on the purpose of the help and support. Our main purpose is to enable local leaders to grow in their capacity for serving children and their capacity to raise local funds. As new leaders are selected and as their skills grow, they move their project toward independence. Their success in developing income-generating enterprises will reduce their financial dependence on the parent organization. Such efforts will foster local capacity to manage programs for children. Above all, volunteers and leaders need to spread the news of support and encourage others to follow suit.

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11 Hope and/or Despair

No “magic bullet” can turn vulnerable HIV/AIDS-affected children’s lives around: HIV/AIDS creates too many interrelated complicated difficulties in the lives of the children it touches. Here, in this final chapter, I highlight the hopes for vulnerable HIV/AIDS affected children’s improved wellbeing. It would be wrong, though, to leave it at that, for there are many, serious reasons for despair, also included here. I end the chapter by commenting on paths to structural changes that could shift the balance toward hope and away from despair. About the hopes for children affected, let us first remember the hope that comes from biomedical research – a vaccine to prevent infection and vaginal gels to block transmission. Some of today’s children may one day have access to one or both of these. More hopes emerge from the data about the disease over time. In recent years: • Prevalence numbers have been reduced in many countries, including two focus countries, Burundi and Rwanda. • There have been impressive gains in numbers of people receiving ARVs, especially in Rwanda, South Africa, and Zambia. • There have been gains, too, in the number of children receiving ARVs, especially in South Africa. • Many more HIV+ pregnant women are now tested and receive ARVs to prevent transmission to their youngsters, in all focus countries, especially Rwanda. Of enormous import, many more children can hope to attend primary school than ever before, and here, Tanzania stands out. Moreover, in terms of gender equity in education, in all focus countries and most of sub-Saharan Africa, girls are as likely as boys to attend primary school. Gender equity has not been achieved in secondary school, but the movement toward equity is positive. 157

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Also hopeful has been the effort to establish children’s legal rights. The Convention on the Rights of the Child has had an impact in several areas of children’s lives. Children’s opinions and voices are part of their rights, and children and young people are learning of their potential power to communicate. A very hopeful emphasis is to build on the successes entailed in supporting children’s abilities to become actors in their own lives. Appropriate guidance and experience can increase children’s resilience and coping skills. Locally initiated programs make a difference as they provide children with life essentials, increase their social capital, and encourage independence. We have seen that the care and attention from young adults for children in very difficult circumstances strengthens both young adults and children with regard to their sense of self, ability to move forward, and the possibility of growing resilience. Affected children aspire to follow the lead of older children and young people who demonstrate successful independence. Children make important connections with one another; they are positive influences in their families; they look to a future with themselves as contributors. Most vulnerable, affected children and even double orphans live within families, and many programs focus on families. Families that have taken in additional children often experience financial difficulty, causing all members, including new additions, to suffer. Strengthening families through cash transfers, support for new enterprises, and agricultural improvements brings hope to all family members. Child and pensioner grants have reduced poverty levels in South Africa, for example. Vocational training for older children and subsequent employment enhances their ability to contribute to family wellbeing. These arenas for hope are not secure enough, though, for most of today’s vulnerable children, either because they only apply to a minority of children or because today’s children will have become adults by the time programs are implemented. Today’s children experience areas of despair that threaten to overwhelm positive indicators, and many originate with the disease itself: • Huge numbers of people are not treated and die young – more than half those who need treatment in sub-Saharan Africa. • There are increased numbers of new orphans, more than four million in the focus countries alone, and nearly 15 million in sub-Saharan Africa. • For every two people put on ARVs, five others become infected.

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• In some countries, Zambia being an example among the five focus countries, the disease has caused widespread deterioration, illustrated in Zambia’s lowered rank in the human development index. The cost of managing HIV/AIDS is daunting, another arena for despair, because donor money seems to be leveling off and even decreasing. Moreover, the processes involved in foreign aid cause problems of their own. Countries such as Rwanda, the recipient of large aid packages, are dependent on aid to continue their excellent response to HIV/AIDS. In some countries, much of the money meant for the most destitute is siphoned off prior to its getting to beneficiaries through tying, overhead, corruption, and the movement of money through a series of contracts. Because of these flow problems, far too little gets to local initiatives where the best work is done; lack of money is one reason so few children who are affected by HIV/AIDS receive outside help. Prevention efforts have not paid off. We despair at the data that show that fewer than one-half of young people have comprehensive knowledge of the disease, and even fewer consistently use condoms. Part of the problem lies in the prevention approaches taken – for example, the use of slick, expensive, and Western-inspired programs or the ineffective emphasis on “the facts” in school-based programs without dialogue around loss, risk behaviors, and violence. Most children do not have cleaner water or better sanitation now than when the process toward reaching the MDGs began, another reason for despair. Although fewer children die before they are five, too many still die, and too many experience malnourishment, underweight, and stunting. These health measures are made worse by high food costs and lack of agricultural productivity. Even though we applaud the fact that more children are in primary school, there are serious impediments to effective education. There are few schooling options for young children throughout sub-Saharan Africa; in some countries, such as Rwanda and Burundi, few have access to secondary school; quality of schooling is lacking in many places; there is little vocational training in all countries; and there is little attention paid to the transition of youth to adulthood. Inequity lies at the heart of many of these arenas of despair. For one thing, there is inequity in foreign aid to different countries, resulting in vastly different responses to HIV/AIDS and children. There is inequity in who gets help within countries. The tendency for anti-poverty efforts to go to the “low-hanging fruit” – the easiest

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to help – is illustrated in extreme differences in country responses to under-five mortality. The MDG focus on country data may have caused country leaders to overlook inequities within their systems. Girls and young women experience the despair that comes with high infection rates and sexual coercion and violence. Girls are far more vulnerable to the disease and to unwanted sex, while boys are vulnerable to negative peer pressures. There have been lots of words, like mine, about this issue. What is needed is action. These despairs outweigh the hopes, but it doesn’t have to be that way. Children’s lives can be significantly improved by changes that happen locally, at the micro-level, and beyond to the macro-level. Whether change happens in small villages, in national meetings, or in the boardrooms of major foundations, all depend on a shifting of priorities so that children’s wellbeing emerges at the top. There is no room for “more of the same.” We know from reports and experience that children are mostly served, if served at all, by providers from their own communities, at the micro-level. They are the ones who see and know children’s needs the best. If there were more local providers with even small financial supports, there would be significant improvements in children’s wellbeing, especially if the following practices were observed: • Planning focuses on local situations and includes providers and beneficiaries. • Local programs incorporate psychosocial support. • Leaders shape HIV prevention using local knowledge of how the disease is spread. • Programs review data on gender and consider how to help both boys and girls. • Leaders ensure that children are educated, whether in neighborhood pre-primary schools, primary schools, secondary schools, or training programs. • They promote and maintain family enterprises, micro-finance projects, and increased local agricultural production. At the macro-level, in district and national offices, as children’s wellbeing is moved to the top of priorities, important, far-reaching structural changes can occur. For this to happen, officials give up hopes for quick fixes and recognize that change requires more effort and more time. They must abandon ego-satisfying efforts and turn to realities. Positive changes in how local governments react to their children include:

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• dealing with corruption and moving swiftly to incorporate transparent systems; • highlighting local program successes; • enabling networking among local efforts; • aligning domestic budgets with children’s priorities; • aligning foreign aid budgets with the country priorities; • placing children’s education high on the agenda for change; and • creating incentives for the local elites to become involved in helping the most vulnerable of their fellow citizens. Foreign donor foundations, donor countries, and international organizations have important roles in creating more favorable conditions for children by making structural changes. For example, they can: • abandon unfavorable practices such as tying, unnecessarily large overheads, and unfair trade policies; • review foreign aid practices in terms of equity; • forgive debt; • direct aid toward country priorities rather than to donor preferences; • use data on equity in making donations; and • collaborate with one another. There is one more critical factor. It is information: information about the disease and child wellbeing. Information belongs to all stakeholders. It is not enough for those in the West who might be part of the foreign aid world or top officials in sub-Saharan African governments to know what is happening – community leaders should also have this information in accessible formats. In addition to annual reports on HIV/AIDS, knowledge, condom use, measures of child health and poverty that report country-wide data, inclusion of within-country data add immeasurably to people’s ability to plan programs. As these within-country data are broken down by region, gender, economic level, and urban/rural conditions, stakeholders get closer to the reality of children’s lives. Moreover, the addition of financial reports, allocations of foreign aid and domestic money to various functions, give stakeholders evidence of the country’s real priorities. Finally, inclusion of data on domestic charitable giving might strengthen the participation of the elites. As more people question practices and demand change, actions to

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better children’s situations will happen. Ultimately, what matters is that vulnerable children receive enough of the basics to prosper, enough education, experiences that lead them to feel connected with others, and supportive paths to adulthood. It is not too much to expect. The ultimate payoff is a functioning, healthy, educated, productive, and civic-minded population.

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Notes

1  Framing the Issues   1. Nelson Mandela, “Address at the closing of the XIV International AIDS Conference,” in Jenny Estong and Kate Etue (eds), aWake Project: Uniting against the African AIDS Crisis, Nashville, TN: W Publishing Group, 2002, p. 27.  2. UNAIDS, Global Report: UNAIDS Report on the Global AIDS Epidemic, New York: United Nations, 2010, pp. 180, 121.   3. International Federation of Red Cross and Red Crescent Societies, World Disasters Report 2008: Focus on HIV and AIDS, Geneva: United Nations, 2008, p. 45.  4. UNAIDS, Global Report, 2010, pp. 182, 186.   5. Geoff Foster, Bottlenecks and Dripfeeds: Channeling Resources to Communities Responding to Orphans and Vulnerable Children in Southern Africa, London: Save the Children UK, 2005.  6. UNICEF, Third Stocktaking Report, Geneva: United Nations, 2008, p. 22.  7. UNICEF, The State of the World’s Children: Excluded and Invisible, Geneva: United Nations, 2005, p. 1.   8. Richard Horton and Pam Das, “Putting prevention at the forefront of HIV/ AIDS,” The Lancet, Vol. 372, No. 9637, August 9, 2008, p. 421.   9. Jose Kimou, Clement K. Kouakou, and Paul A. Assi, A Review of the Economic Impact of Antiretroviral Therapy on Family Well-being, Cambridge, MA: Joint Learning Initiative on Children and HIV/AIDS, 2008. 10. Paul Rohleder and others (eds), HIV/AIDS in South Africa 25 Years On: Psychosocial Perspectives, New York: Springer, 2009. 11. The aids2031 Consortium,Taking a Long-term View, Upper Saddle River, NJ: FT Press, 2010. 12. The two countries are Somalia and the United States. Somalia does not have a government stable enough to address the matter. The absence of the United States is probably due to the influence of conservative religious groups who are unwilling to acknowledge autonomy in minors. Both countries signed the treaty but have not ratified it. 13. UNICEF, Convention on the Rights of the Child. www.unicef.org/crc/index_ protecting.html. (Accessed October 15, 2010.) 14. Amnesty International, Children’s Rights. www.amnestyusa.org/children/ crn_how.html (Accessed November 15, 2010.) 15. UNICEF, The State of the World’s Children: Celebrating 20 Years of the Convention of the Rights of the Child. Geneva: UNICEF, 2010, p. 14. 16. Luyando Mutale Katenda, The State of the Zambian Child, 2009. www.unicef. org/rightsite/237 (Accessed April 9, 2010.) 17. Save the Children UK, Speaking Out: Voices of Child Parliamentarians in Mozambique, 2007. www.savethechildren.org.uk/en/54_1513.htm (Accessed November 29, 2009.) 18. Ibid., p. 23.

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164   Hope Amidst Despair 19. Ibid. 20. Geoff Foster, Madhu Deshmukh, and Alayne Adams, Inside Out? Strengthening Community Responses to Children Affected by HIV/AIDS, Cambridge, MA: Joint Learning Initiative on Children and HIV/AIDS, Learning Group 2, 2008. 21. G. I. Anyango, “Kagame wants participation of children in national issues,” The New Times, Kigali, Rwanda, November 13, 2009.

2 One Continent, Five Countries, and Five Different Epidemics   1. Maggie Fox, “Best to focus on preventing HIV in Africa: report,” Reuters, November 29, 2010. www.reuters.com/article/idUSTRE6AS4AQ20101129. (Accessed November 30, 2010.)   2. Eleanor Gouws, Peter D. Ghys, and R. Lyerla, “Trends in HIV prevalence and sexual behaviour among young people aged 15–24 years in countries most affected by HIV,” Sexually Transmitted Infections, STI Online, Vol. 86, Suppl. 2 (2010), pp. ii72–ii83. www.sti.bmj.com/reports/most-read. (Accessed January 30, 2011.)   3. Tania Boler and David Archer, The Politics of Prevention: A Global Crisis in AIDS and Education, London: Pluto Press, 2008, p. 15.  4. UNAIDS, Global Report: UNAIDS Report on the Global AIDS Epidemic, New York: UN, 2010, p. 28.   5. Robert Hecht, John Stover, and others. “Financing of HIV/AIDS programme scale-up in low-income and middle-income countries, 2009–31,” The Lancet, Vol. 376, No. 9748, 2010, pp. 1254–60, p. 1255.   6. John Iliffe, The African AIDS Experience: A History, Athens, OH: Ohio University Press, 2006.   7. Helen Epstein, The Invisible Cure: Africa, The West, and The Fight Against AIDS, New York: Farrar, Straus, and Giroux, 2007.   8. Alex De Waal and Masuma Mamdani, Social and Economic Policies, Cambridge, MA: The Joint Learning Initiative on Children and HIV/AIDS: Learning Group 4, 2008, p. 11.   9. Apollinaire Niyirora, “Opposition alleges election fraud,” Inter Press Service, June 2, 2010. www.allAfrica.com/stories/201006021027.htm. (Accessed June 4, 2010.) 10. Nigel Watt, Burundi: Biography of a Small African Country, New York: Columbia University Press, 2008. 11. Robert Krueger and Kathleen Tobin, From Bloodshed to Hope in Burundi: Our Embassy Years During Genocide, Austin, TX: University of Texas Press, 2007; Nigel Watt, Burundi. 12. AllAfrica.com, “Burundi: despite progress, national situation still causes for concern, Ban warns,”, UN News Service, December 6, 2010. www.allafrica. com/stories,printable/201012070161.html. (Accessed December 7, 2010.) 13. UNAIDS, Global Report, 2010, pp. 180–1. 14. Kaiser Family Foundation, Global Health Facts. www.globalhealthfacts.org/ topic.jsp?i=66. (Accessed November 23, 2010.) 15. UNAIDS, Global Report, 2010, p. 22. 16. Save the Children UK, The Child Development Index: Holding Governments to Account for Children’s Wellbeing, Save the Children: London, 2008, p. 22. 17. For example, Jeffrey Gettleman, “Rwanda pursues dissenters and the homeless,” New York Times, May 1, 2010. www.nytimes.com/2010/05/01/world/ agrica/01rwanda.html. (Accessed May 24, 2010.)

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notes  165 18. Jean Hatzfeld, The Antelope’s Strategy: Living in Rwanda after the Genocide, New York: Farrar, Straus, and Giroux, 2009; Jean Hatzfeld, Machete Season: The Killers in Rwanda Speak, New York: Farrar, 2003; Life Laid Bare: The Survivors in Rwanda Speak, New York: Other Press, 2006. 19. UNAIDS, Global Report, 2010, pp. 180–81. 20. B. Asiimwe, “HIV mother-to-child transmission down,” New Times, December 1, 2010. www.Allafrica.com/stories/201011120399.html. (Accessed November 23, 2010.) 21. Kaiser Family Foundation, Global Health Facts. www.globalhealthfacts.org/ topic.jsp?i=66. (Accessed December 4, 2007.) 22. Save the Children UK, The Child Development Index, p. 22. 23. Martin Meredith, The Fate of Africa: A History of Fifty Years of Independence, New York: Public Affairs, 2005. 24. UNAIDS, Global Report, 2010, pp. 180–1. 25. Ibid., p. 248. 26. Save the Children UK, The Child Development Index, p. 21. 27. Central Intelligence Agency, The World Factbook, Washington, DC: US Department of State. www.cia.gov/library/publications/the-world-factbook/ rankorder/2172rank.html. (Accessed January 10, 2011.) 28 Ibid. 29. Christopher J. Colvin and Steven Robins, “Social movements and HIV/AIDS in South Africa,” in Poul Rohleder, Leslie Swartz and others (eds), HIV/AIDS in South Africa 25 Years On: Psychosocial Perspectives, New York: Springer, 2010, p. 156. 30. Avert, HIV and AIDS in Africa. www.avert.org/hiv-aids-africa.html. (Accessed December 31, 2010.) 31. Celia W. Dugger, “Study cites toll of AIDS policy in South Africa,” New York Times, November 26, 2008. 32. UNAIDS, Global Report, 2010, p. 181. 33. Thomas M. Rehle, and others, “A decline in new HIV infections in South Africa: estimating HIV incidence from three national HIV surveys in 2002, 2005 and 2008,” PLoS ONE, Vol. 5, No. 6, e11094. www.hst.org.za/indicators/ Journals/HIVincidence_3surveys_journal.pone.0011094.pdf. (Accessed January 26, 2011.) 34. Save the Children UK, The Child Development Index, p. 21. 35. Scott Taylor, Culture and Customs of Zambia, Santa Barbara, CA: ABC–CLIO Greenwood, 2006. 36. UNAIDS, Global Report, 2010, pp. 180–1. 37. Ibid., pp. 252–, 256–7. 38. Save the Children UK, The Child Development Index, p. 21. 39. Human Development Report, The Real Wealth of Nations: Pathways to Human Development, New York: United Nations Development Programme, 2010, p. 16. 40. Save the Children UK, The Child Development Index, p. 3.

3 Girls And Women: Special Vulnerabilities  1. UNAIDS, Global Report: UNAIDS Report on the Global AIDS Epidemic, New York: UN, 2010, p. 22.

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166   Hope Amidst Despair   2. Kaiser Family Foundation, Global Health Facts. www.globalhealthfacts.org/ topic.jsp?i=66. (Accessed November 23, 2010.)  3. UNAIDS, Global Report, 2010, p. 130.   4. Ibid., pp. 180–1.   5. Anthony Simpson, Boys to Men in the Shadow of AIDS: Masculinity and HIV Risk in Zambia, New York: Palgrave Macmillan, 2009.   6. Ibid., p. 91.   7. AIDSTAR-One, “Case study: alcohol consumption and HIV risk,” October 1, 2010. www.aidstar-one.com/focus_areas/prevention/resources/case_study/ alcohol_consumption_hiv_risk. (Accessed February, 17, 2011.)   8. Warren Parker, Benjamin Makhubele, Pumla Ntlabati, and Cathy Connolly, Concurrent Sexual Partnerships amongst Young Adults in South Africa: Challenges for HIV Prevention Communication, Centre for AIDS Development, Research, and Evaluation, Cadre, 2007, p. 31.   9. Marit Peterson, “Cultural practices, gender and HIV/AIDS: a study of young women’s sexual positioning in the context of HIV/AIDS in South Africa,” in Jean Baxen and Anders Breidlid (eds), HIV/AIDS in Sub-Saharan Africa: Understanding the Implications of Culture and Context, Tokyo: United Nations University Press, 2009, p. 106. 10. Ibid., p. 108. 11. Hilda Rolls, “Masculinising and feminising identities: factors shaping primary school learners’ sexual identity construction in the context of HIV/AIDS,” HIV/ AIDS in Sub-Saharan Africa, 2009, p. 72. 12. UNAIDS, 09 AIDS Epidemic Update, New York: United Nations, 2009, p. 22. 13. UNICEF, The State of the World’s Children 2011: Adolescence: An Age of Opportunity, Geneva: UNICEF, 2011, p. 119. 14. Ida Susser, AIDS, Sex and Culture: Global Politics and Survival in Southern Africa, West Sussex , UK: Wiley-Blackwell, 2009, p. 139. 15. Ruth Dixon-Mueller, “Starting young: sexual initiation and HIV prevention in early adolescence,” AIDS in Behavior, Vol. 18, No. 10, 2009, pp. 1435–42. 16. Ann M. Moore, and others, “Coerced first sex among adolescent girls in sub-Saharan Africa: prevalence and context,” African Journal of Reproductive Health, Vol. 11, No. 3, 2007, pp. 62–82. Abstract, www.bioline.org.br/ abstract?id=rh09035. 17. Michelle Hindin andAdesegun O. Fatusi, “Adolescent sexual and reproductive health in developing countries: an overview of trends and interventions,” International Perspectives on Sexual and Reproductive Health, Vol. 35, No. 2, 2009. 18. Dixon-Mueller, “Starting young,” p. 105. 19. World Health Organization, World Health Statistics 2009, Geneva, Table 9. 20. Hindin and Fatusi, “Adolescent sexual and reproductive health.” 21. Simpson, Boys to Men, p. 53. 22. Ibid., p. 77. 23. Warren Parker, and others, “Risk and sex in an HIV epidemic: challenges for HIV prevention,” CADRE, Presentation at PEPFAR Meeting, Johannesburg, SA, July 16, 2007. CADRE, 2007, Slide 19. www.cadre.org.za/page/1/4/14?page=2. (Accessed July 16, 2010.) 24. Ibid., Slide 6. 25. Craig Timberg, “Speeding HIV’s deadly spread: multiple, concurrent partners drive the disease in South Africa,” Washington Post, March 2, 2007.

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notes  167 26. Simpson, Boys to Men, p. 46. 27. Tony Barnett and Alan Whiteside, AIDS in the Twenty-first Century: Disease and Globalization,New York: Palgrave Macmillan, 2002, p. 185. 28. UNAIDS, Global Report, 2010, p. 30. 29. Simpson, Boys to Men, p. 181. 30. “MRC: quarter of men in South Africa admit rape,” Mail and Guardian Online. June 18, 2009. www.scribd.com/doc/24351859/09-0;850/09-07-18Mail-Guardian-One-Quarter-of-South-African-Men-Admit-Rape. (Accessed August 9, 2009); Rachel K. Jewkes, Kristin Dunkle, Mizikazi Nduma, and Nwabisa Shai, “Intimate partner violence, relationship power inequity, and incidence of HIV infection in young women in South Africa, a cohort study,” The Lancet, Vol. 376, No. 9734, 2010, pp. 41–8. www.thelancet.com/2010. (Accessed November 14, 2010.) 31. Mary Kimani, “Taking on violence against women in Africa: international norms, local activism to start to alter laws and attitudes,” Africa Renewal, Vol. 2, No. 4, 2007. www.un.org/ecosocdev/gen/info/afrec/oc. (Accessed December 1, 2010.) 32. UNAIDS, 2008 Report on the Global AIDS Epidemic, New York: UN, 2008, p. 69. 33. Graham Lindegger and Michael Quayle, “Masculinity and HIV/AIDS,” in Poul Rohleder, Leslie Swartz, and others (eds), HIV/AIDS in South Africa 25 Years On: Psychosocial Perspectives, New York: Springer, 2010, p. 42. 34. Susser, AIDS, Sex, and Culture. 35. Kim Ashburn, Nandani Oomman, David Wendt, and Steven Rosenzweig, Moving Beyond Gender as Usual, Washington, DC: Center for Global Development, 2009. 36. USAID, “Fact sheet on youth reproductive health policy, gender-based violence,” USAID Health Policy Initiative, November, 2009, p. 1. www.aidstar-one.com/ gender/issues. (Accessed February 15, 2011.) 37. Voice of America, “PEPFAR targets gender violence,” Editorial, May 17, 2010. www.voanews.com/policy/editorials/Pepfar-Targets-Gender-Violence-93929709.html. (Accessed June 4, 2010.) 38. Jacqui Patterson and others, Together We Must End Violence against Women and Girls and HIV&AIDS, United Nations Development Fund for Women and ActionAid, 2009. See Sonke website, www.genderjustice.org/za. 39. Susser, AIDS, Sex, and Culture, p. 142. 40. David Smith, “Grandmothers’ summit to put spotlight on Africa’s ‘forgotten victims’ of AIDS,” Guardian, May 3, 2010. www.guardian.co.uk/world/2010/ may/03/grandmothers-summit-aids-africa. (Accessed May 6, 2010).

4  Life Sustainer: ARV Treatment  1. Avert, Preventing Mother-to-Child Transmission (PMTCT) of HIV. www.avert. org/motherchild.htm. (Accessed June 7, 2010.)  2. UNAIDS, Global Report: UNAIDS Report on the Global AIDS Epidemic, New York: UN, 2010, p. 275.   3. World Health Organization, Toward Universal Access. Scaling up Priority HIV/ AIDS Interventions in the Health Sector: Progress Report, Geneva: WHO, 2009, p. 87.  4. UNAIDS, Global Report, 2010, p. 78.

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168   Hope Amidst Despair   5. IRIN Plus News, “Africa: HIV/AIDS – Looking forward to an AIDS-free generation,” December 7, 2010. www.allafrica.com/stories/printable/ 201012071218.html. (Accessed December 8, 2010.)  6. UNICEF, Children and AIDS: Fifth Stocktaking Report, Geneva: UNICEF, 2010, p. 8.  7. USAID, Global Report, 2010, p. 80.   8. Ibid., pp. 274–5.  9. UNICEF, Children and AIDS: Fourth Stocktaking Report, Geneva: UNICEF, 2009, p. 11. 10. T is for “therapy,” UNICEF, Progress for Children: Achieving the MDGs with Equity, New York: United Nations. New York: United Nations, 2010, p. 12. 11. Ibid., p. 12. 12. Ibid., pp. 8–9. 13. World Health Organization, Toward Universal Access, p. 105. 14. UNICEF, Fifth Stocktaking Report, 2010, p. 3. 15. Jose Kimou, Clement K. Kouakou, and Paul A. Assi, “A review of the economic impact of antiretroviral therapy on family well-being,” A paper to contribute to a debate for the Joint Learning Initiative on Children and HIV/AIDS: Learning Group 1, Cambridge, M., August 31, 2008. 16. Nazareth House. www.southafricapositive.org. 17. Ida Susser, AIDS, Sex and Culture: Global Politics and Survival in Southern Africa, West Sussex, UK: Wiley-Blackwell, 2009, p. 114. 18. Jonny Steinberg, Three-letter Plague: A Young Man’s Journey through a Great Epidemic, Johannesburg: Jonathan Ball Publishers, 2008, p. 185. 19. Suzanne Leclerc-Madlala, Leichness C. Simbayi, and Allanise Cloete, “The sociocultural aspects of HIV/AIDS in South Africa,” in Poul Rohleder, Leslie Swartz, and others (eds), HIV/AIDS in South Africa 25 Years On: Psychosocial Perspectives, New York: Springer, 2010, p. 18. 20. Jonny Steinberg, Three-letter Plague, pp. 185–6. 21. UNICEF, Progress for Children, p. 15. 22. Ibid., pp. 15–16. 23. UNAIDS, Global Report, 2010, p. 87. 24. IRIN Plus News, “Zambia: how to make broad ARV access work,” UN: Humanitarian News and Analysis, 2010. www.irinnews.org/PrintReport. aspx?Reportid=89879. (Accessed December 8, 2010.) 25. UNAIDS, Global Report, 2010, p. 98. 26. Ibid., pp. 248–9, 252–3. 27. Avert, “Starting antiretroviral treatment in children with HIV.” www.avert. org/hiv-children.htm. (Accessed December 8, 2010.) 28. Joint Learning Initiative on Children and HIV/AIDS (JLICA), Home Truths: Facing the Facts on Children, AIDS, and Poverty, Final Report, Cambridge, MA, 2009, p. 21; Lorraine Sherr, “Vertical transmission of HIV – pregnancy and infant issues,” HIV/AIDS in South Africa 25 Years on, 2010, p. 186. 29. UNAIDS, Treatment 2.0, New York: United Nations, 2010. 30. The World Bank, The World Bank’s Commitment to HIV/AIDS in Africa: Our Agenda for Action, 2007–2011, Washington: World Bank, 2008, p. 91. 31. Médecins Sans Frontières, No Time to Quit: HIV/AIDS Treatment Gap Widening in Africa, Brussels: Médecins Sans Frontières , 2010, p. 12. 32. Ibid., p. 15. 33. Ibid., p. 16.

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notes  169 34. Ibid., p. 24. 35. Ibid., p. 21. 36. IRIN Plus News, “Global: funding pall hangs over AIDS 2010 conference,” UN: Humanitarian News and Analysis, July 19, 2010. 37. The aids2031 Consortium, Taking a Long-term View, Upper Saddle River, NJ: FT Press, 2010, Chapter 4.

5 Prevention: The Long-Term Goal   1. The aids2031 Consortium, Taking a Long-term View, Upper SaddleRiver, NJ: FT Press, 2010, p. xi.  2. UNAIDS Report on the Global AIDS Epidemic, New York: United Nations, 2010, p. 20.   3. Mamatsoso Matsoso-Makhate and Gerald Wangenge-Oumo, “Performing masculine and feminine identities: sexuality and identity construction among youth in the context of HIV/AIDS,” in Jean Baxen and Anders Breidlid (eds), HIV/AIDS in Sub-Saharan Africa: Understanding the Implications of Culture and Context, Tokyo: United Nations University Press, 2009, p. 75.   4. Lawrence K. Altman, “At meeting on AIDS, focus shifts to long haul,” New York Times, August 19, 2008.   5. Richard Horton and Pam Das, “Putting prevention at the forefront of HIV/ AIDS”, The Lancet, Vol. 372, 2008, pp. 421–422. www.thelancet.com/journal/ lancet/article/PIISO14067360860882X/fulltextprinter. (Accessed January 6, 2009.)  6. UNAIDS, Global Report, 2010, p. 331.   7. Eleanor Gouws, P. D. Ghys, and R. Lyerla, “Trends in HIV prevalence and sexual behaviour among young people aged 15–24 years in countries most affected by HIV,” Sexually Transmitted Infections, STI Online, Vol. 86, Suppl. 2, 2010, pp. ii81. www.sti.bmj.com/reports/most-read. (Accessed January 30, 2011.)   8. Horton and Das, “Putting prevention at the forefront.”   9. Helen Epstein, The Invisible Cure: Africa, The West, and The Fight Against AIDS, New York: Farrar, Straus, and Giroux, 2007, pp. 15–20. 10. National Institutes of Health, “NIH-led scientists find antibodies that prevent most HIV strains from infecting human cells,” 2010. www.nih.gov/news/health/ jul2010/niaid-08.htm. (Accessed July 30, 2010.) 11. Donald G. McNeil, “Advance on AIDS raises questions as well as joy,” New York Times, July 26, 2010. 12. Brian G. Williams and others, “The potential impact of male circumcision on HIV in sub-Saharan Africa,” PLoS Med, Vol. 3, No. 7, e262. DOI: 10.1371/ journal.pmed.0030262. 13. Nithya Krishnan, “Reporting: to cut or not to cut,” XVII International AIDS Conference, Mexico City, August 7, 2008. www.aids2008.org/Pag/PSesssion. aspx>s=4. (Accessed February 2, 2011.) 14. Catherine Campbell, “Letting Them Die”: Why HIV/AIDS Prevention Programmes Fail, Oxford: International African Institute, 2003. 15. Ida Susser, AIDS, Sex and Culture: Global Politics and Survival in Southern Africa, West Sussex , UK: Wiley-Blackwell, 2009, p. 139; Plus News UGANDA, “Less noisy female condom proves a hit,” IRIN, Vol. 22, December 2009. www. plusnews.org/Report.aspx?Reportld=87526. (Accessed April 7, 2010.)

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170   Hope Amidst Despair 16. Médecins Sans Frontières, No Time to Quit, HIV/AIDS Treatment Gap Widening in Africa, Brussels: Médecins Sans Frontières, 2010, p. 9. 17. Tania Boler and David Archer, The Politics of Prevention: A Global Crisis in AIDS and Education, London: Pluto Press, 2008, pp. 92–7. 18. Kristen Underhill, Paul Montgomery, and Don Operario, “Sexual abstinence only programmes to prevent HIV infection in high income countries: systematic review,” British Medical Journal, Vol. 355, No. 248, 2007, doi:10.1136/ bmj.39245. www.bmj.com/cgi/reprint/335/7613/248. (Accessed December 13, 2010.) 19. PEPFAR, The President’s Emergency Plan for AIDS Relief, 2011. Country operational plan (COP) Guidance. US Government, 2011, p. 11. 20. Personal conversation, May, 2005. 21. Boler and Archer, The Politics of Prevention, pp. 100–1. 22. Ibid., pp. 110–11. 23. Anders Breidlid, “Cultural constraints and educational intervention strategies,” HIV/AIDS in Sub-Saharan Africa, pp. 21–34. 24. Marit Petersen, “Cultural practices, gender and HIV/AIDS: A study of young women’s sexual positioning in the context of HIV/AIDS in South Africa,” HIV/ AIDS in Sub-Saharan Africa, p. 105. 25. Mamatsoso Matsoso-Makhate and Gerald Wangenge-Oumo, “Performing masculine and feminine identities: sexuality and identity construction among youth in the context of HIV/AIDS,” HIV/AIDS in Sub-Saharan Africa, p. 87. 26. Ibid., p. 96. 27. Ibid. 28. Epstein, The Invisible Cure, p. 160. 29. Ibid., p. 169. 30. UNAIDS, Global Report, 2010, p. 181. 31. UNESCO, Reaching the Marginalized: Education for All Monitoring Report, Geneva: UNESCO, 2010, p. 371. 32. Epstein, The Invisible Cure, p. 214. 33. Boler and Archer, The Politics of Prevention, p. 49. 34. Jean Baxen, “What questions? HIV/AIDS educational research: beyond more of the same to asking different epistemological questions,” HIV/AIDS in Sub-Saharan Africa, pp. 15–20. 35. Khopotso Bodibe, “South Africa: study shows gap in HIV prevention messaging for youth,” Health-e, March 3, 2011. Reported in allAfrica.com. www/allAfrica. com/stories/2011030309.html. (Accessed March 3, 2011.) 36. Boler and Archer, The Politics of Prevention, p. 55. 37. Bernice Adonis with Jean Baxen, “School culture, teacher identity and HIV/ AIDS,” HIV/AIDS in Sub-Saharan Africa, 2009. 38. Jesse Hawkes, Ingabire, a Film. Rwandan Film Centre and RAP, 2005. 39. Soul Buddyz, “Tomorrow is ours: evaluation report,” Johannesburg: Soul City, 2008. www.soulcity.org.za/contact. (Accessed December 13, 2010.) 40. Kaiser Family Foundation “LoveLife: South Africa’s national HIV prevention program for youth”. www.kff.org/about/lovelife.cfm. (Accessed December 14, 2010.) 41. Ibid. 42. Thomas M. Rehle and others, “A decline in new HIV infections in South Africa: estimating HIV incidence from three national HIV surveys in 2002, 2005 and 2008,” PLoS ONE, Vol. 5, No. 6, e11094. www.hst.org.za/indicators/

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notes  171 Journals/HIVincidence_3surveys_journal.pone.0011094.pdf. (Accessed January 26, 2011.) 43. British Broadcasting Company, “HIV in South Africa ‘levels off’,” 2009. http:// news.bbc.co.uk/go/pr/fr/-/2/hi/Africa/8091489.html. (Accessed December 14, 2010.) 44. Quoted in Kohpotso Bodibe, “South Africa: HIV prevalence going nowhere,” Health-e. http://allafrica.com/stories/ 201011150521.html. (Accessed November 16, 2010.) 45. Epstein, The Invisible Cure, p. 127. 46. Breidlid, “Cultural constraints,” HIV/AIDS in Sub-Saharan Africa, p. 28. 47. Ibid., p. 29. 48. Arvin Bhana and Inge Petersen, “HIV and youth: a behavioural perspective,” in Poul Rohleder, Leslie Swartz and others (eds), HIV/AIDS in South Africa 25 Years On: Psychosocial Perspectives, New York: Springer, 2010, p. 64. 49. Warren Parker, “Claims and realities in programme evaluation: reflections on loveLife,” Johannesburg: Centre for AIDS Development, Research and Evaluation, undated, one page. 50. Catherine A. Hankins and Barbara O. de Zaluondo, “Combination prevention: a deeper understanding of effective HIV prevention,” AIDS 2010, Vol. 24, October 2010, supplement 4, pp. S70–S80. 51. The aids2031 Consortium, Taking a Long-term View, p. 95.

6 Poverty And Children’s Wellbeing   1. Olive Shisana, Nompumelelo Zungu, and Sinawe Pezi, ‘‘Poverty and HIV and AIDS,’’ in Poul Rohleder, Leslie Swartz and others (eds), HIV/AIDS in South Africa 25 Years on: Psychosocial Perspectives, New York: Springer, 2010, pp. 55–68.  2. UNICEF, Progress for Children: Achieving the MDGs with Equity, Geneva: UNICEF, 2010, p. 7.   3. Save the Children UK, A Fair Chance at Life: Why Equity Matters for Child Mortality, London: Save the Children, 2010, p. vii.   4. African Child Policy Forum, The African Report on Child Wellbeing: How Child-friendly Are African Governments? Addis Ababa: African Child Policy Forum, 2008, p. 99.   5. IRIN Plus News, ‘‘Africa: prices highest since 2008,’’ January 5, 2011. www. allafrica.com/stories/201101060156/html. (Accessed January 6, 2011.)   6. Mike Shanahan, ‘‘Report shows how secret land deals can fail to benefit African nations – and how to make them better”, International Institute for Environment and Development, January 31, 2011. http://www.iied.org/ natural-resources/media/report-shows-how-secret-land-deals-can-fail-benefitafrican-nations-%E2%80%93-and-ho. (Accessed February 3, 2011.)  7. UNICEF, The State of the World’’s Children 2011: Adolescence: An Age of Opportunity, Geneva: UNICEF, 2011, pp. 142, 144–5.   8. Ibid., p. 115.   9. Ibid., pp. 138, pp. 110–11. 10. Avert, ‘‘HIV and AIDS in Africa,’’ www.avert.org/hiv-aids-africa.htm. (Accessed December 31, 2010.) 11. Save the Children UK, A Fair Chance at Life, p. 8.

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172   Hope Amidst Despair 12. Save the Children UK, The Child Development Index: Holding Governments to Account for Children’s Wellbeing, London: Save the Children UK, 2008, p. 4. 13. A. Sumner, J. Linstrom,, and L. Haddad ‘‘Why is undernutrition not a higher priority for donors?’’ Eldis, Institute of Development Studies: University of Sussex. www.eldis.org/go/topics/insights/2008/improving-the-nutrition-status-ofchildren-and-women/why-is-undernutrition-not-a-higher-priority-for-donors. (Accessed December 3, 2010.) 14. Kalanidhi Subbarao and Diane Coury, Reaching out to Africa’s Orphans: A Framework for Public Action, Washington, DC: World Bank, 2004, p. 18. 15. UNICEF, Progress for Children, pp. 48, 50–1. 16. Ibid. 17. UNICEF, Progress for Children, p. 14. 18. Ibid., p. 22. 19. Countdown to 2015. 20. Emmanuela Gakidou, Kyucia Cowling, and others, ‘‘Increased educational attainment and its effect on child mortality in 175 countries between 1970 and 2009: a systematic analysis,’’ The Lancet, Vol. 376, 2010, pp. 959–74. 21. Ibid., Table 1. 22. Save the Children UK, A Fair Chance at Life, p. 33. 23. UNICEF, State of the World’s Children, Special Edition Celebrating 25 Years of the Convention of the Rights of the Child, New York: UNICEF, 2009, pp. 90–1. 24. UNICEF, Progress for Children, p. 71. 25. Ibid., p. 36. 26. Save the Children UK, A Fair Chance at Life, p. 3; UNICEF, State of the World’s Children, 2009, p. 129. 27. UNICEF, Progress for Children. 28. Ibid., p. 40. 29. Ibid., p. 42. 30. Save the Children UK, A Fair Chance at Life, p. 19. 31. UNICEF, Progress for Children, p. 59. 32. Matthew O. Berger, ‘‘Africa: hunger drops mere half a per cent over the last decade,’’ Inter Press Service News Agency, September 27, 2010. publicagendaghana.org/index.php?option=com_content&view=article&id=1 47%3Amatthew-o-berger&Itemid=38. (Accessed December, 8, 2010.) 33. UNICEF, Progress for Children, p. 14. 34. Save the Children UK, A Fair Chance at Life, p. vii. 35. UNICEF, State of the World’s Children, 2011, p. 118. 36. Subbarao and Coury, Reaching out to Africa’s Orphans, p. 19. 37. Child Info, ‘‘Statistics by Area,’’, UNICEF, 2009. www.childinfo.org/ childprotection.html. (Accessed December 31, 2010.) 38. Nana Poku, AIDS in Africa: How the Poor Are Dying, Cambridge, UK: Polity Press, 2005, p. 195. 39. UNICEF, State of the World’s Children, 2011, pp. 122, 123. 40. L. Lewis Wall, ‘‘Obstetric vesicovaginal fistula as an international public-health problem,’’ The Lancet, Vol. 368, No. 9542, 2006, pp. 1201–9. 41. UNICEF, State of the World’s Children, 2009, p. 13. 42. Child Soldiers. www.child-soldiers.org/childsoldiers/voices-of-young-soldiers. (Accessed September 25, 2009.)

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notes  173 43. Ban Ki-moon, Children and the Millennium Development Goals: Progress towards a World Fit for Children, New York: UNICEF, 2007, p. 55. 44. UNICEF, The State of the World’s Children 2006: Excluded and Invisible, New York: UNICEF, 2006, p. 40.

7 Education: A Basic Human Right   1. Education for All, EFA Global Monitoring Report: Reaching the Marginalized, Paris: UNESCO, 2010, p. 347.  2. UNICEF, Progress for Children: Achieving the MDGs with Equity, Geneva: UNICEF, 2010, p. 18.   3. Education for All, Global Monitoring Report, p. 19.  4. UNICEF, Progress for Children, pp. 64, 67.   5. Kathleen Beegle, Joachim De Weerdt, and Stefan Dercon, “The intergenerational impact of the African orphans crisis: a cohort study from an HIV/AIDS affected area,” International Journal of Epidemiology, Vol. 38, No. 2, 2008, pp. 561–8. doi:10.1093/ije/dyn197. Constance Nyamukapa and Simon Gregson, “Contrasting primary school outcomes of paternal and maternal orphans in Manicaland, Zimbabwe: HIV/AIDS and weaknesses in the extended family system,”MEASURE Evaluation, Carolina Population Center, University of North Carolina, Chapel Hill, NC, 2003.   6. Katarina Tomasevski, The State of the Right to Education Worldwide: Free or Fee, Copenhagen: Global Report, 2006, p. 2. “Katarina Tomasevski was one of the leading international human rights lawyers and activists of her generation,” obituary, Human Rights Law Review, 2007, Vol. 7, No. 1.   7. Education for All, Global Monitoring Report, p. 18.  8. Rwanda Development Gateway Center. www.rwandagateway.orgspip. php?article107. (Accessed February 4, 2011.)   9. Education for All, Global Monitoring Report, p. 347. 10. CHABHA provides funds to the schools for “contributions” for the children of the partner associations. 11. Education for All, Global Monitoring Report, p. 424. 12. Ibid., p. 331. 13. UNICEF, The State of the World’s Children 2011: Adolescence: An Age of Opportunity, Geneva: UNICEF, 2011, pp. 104, 106, 107. 14. Youth unemployment has been increasing. African Economic Outlook, “Youth unemployment.” www.afrianeconomicoutlook.org. (Accessed March 2, 2011.) 15. Education for All, Global Monitoring Report, p. 20. 16. Ibid., p. 371. 17. UNAIDS, Report on the Global AIDS Epidemic, New York: UN, 2008, p. 69. 18. Tania Boler and David Archer, The Politics of Prevention: A Global Crisis in AIDS and Education, London: Pluto Press, 2008, p. 69. 19. Education for All, Global Monitoring, pp. 392–5. 20. UNICEF, The State of the World’s Children: Excluded and Invisible, Geneva, 2006, p. 22. 21. Catherine Campbell, and others, “Exploring children’s stigmatization of AIDS-affected children in Zimbabwe”, Social Science & Medicine, 2010, Vol. 71, No. 5, pp. 975–85.

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174   Hope Amidst Despair 22. Tania Boler and Anne Jellema, Deadly Inertia: A Cross-Country Study of Educational Responses to HIV/AIDS, Brussels: Global Campaign for Education, 2005, p. 16. 23. Boler and Archer, The Politics of Prevention, p. 66. 24. Deborah Ewing and Noreen Ramsden, Friends for Life, Johannesburg: Heinemann, 2003 (a series of relevant books); Alan Stratton, Chanda’s Secrets, Toronto: Annick Press, 2004; and Lutz Van Dijk, Stronger than the Storm, Cape Town: Longman, 2000. 25. World Bank (with UNICEF), Abolishing School Fees: Lessons from Ethiopia, Ghana, Kenya, Malawi, and Mozambique, Washington, DC: World Bank, 2009, p. xi. 26. Boler and Archer, The Politics of Prevention, p. 29. 27. Education for All, Global Monitoring, p. 307. 28. Ibid., p. 347. 29. Ibid., p. 248. 30. Ibid., Chapter 4.

8  I Feel it in My Heart   1. Deborah Ellis, Our Stories, Our Songs: African Children Talk about AIDS, Markham, Ontario: Fitzhenry and Whiteside, 2006, p. 5.   2. Laurie J. Bauman and Stefan Germann, “Psychological impact of the HIV/ AIDS epidemic on children and youth,” in Geoff Foster, Carol Levine, and John Williamson (eds), A Generation at Risk: The Global Impact of HIV/AIDS on Orphans and Vulnerable Children, Cambridge, UK: Cambridge University Press, 2005, pp. 93–133.   3. Harriet Deacon and Inez Stephney, HIV/AIDS, Stigma and Children: A Literature Review, Cape Town: Human Sciences Research Council, 2007.   4. N. A. C. Llorente, Social Capital and Well-being: A Study of Child-headed Households in Kigali, Rwanda, Dissertation, Birmingham: University of Birmingham, 2010, p. 24.  5. Ellis, Our Stories, Our Songs, p. 9.   6. Theresa S. Betancourt and others, “Mental health problems among children affected by HIV/AIDS in rural Rwanda: a qualitative study,” XVII International AIDS Conference, August, Mexico City, 2008. www.aids2008.org/Pag/PSession. aspx?s=274. (Accessed September 10, 2009.)   7. Lucie Cluver, Frances Gardner, and Don Operario, “Psychological health of AIDS-orphans: findings from the world’s largest controlled study,” XVII International AIDS Conference, August, Mexico City, 2008. www.aids2008. org/Pag2008. (Accessed September 10, 2009.)  8. UNICEF, Children and AIDS: Third Stocktaking Report, Geneva: UNICEF, 2008, p. 24.  9. Llorente, Social Capital and Well-being, p. 55. 10. Harriet Deacon, Leana Uys, and Rakgadi Mohlahlane, “HIV and stigma in South Africa,” in Poul Rohleder, Leslie Swartz, and others (eds), HIV/AIDS in South Africa 25 Years On: Psychosocial Perspectives, New York: Springer, 2010, p. 106. 11. T. Abebe, 2009. ‘Orphanhood, poverty and the care dilemma: review of global policy trends,” Social Work and Society, Vol. 7, No. 1. www.socwork.

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notes  175 net/2009/1/special_issue/abebe. (Accessed October 21, 2010); Llorente, Social Capital and Well-being. 12. Linda Richter, “The impact of HIV/AIDS on the development of children,” in Robyn Pharoah (ed.), A Generation at Risk? HIV/AIDS, Vulnerable Children and Security in Southern Africa, Pretoria, South Africa: Institute for Security Studies, 2004, unpaged. www.iss.co.za/pubs/Monograph/No109/Contents. html. (Accessed September 4, 2010.) 13. Beverly Killian, “Risk and resilience,” in A Generation at Risk? 14. Alicia Skinner Cook, Janet Julia Fritz, and Rose Mwonya, “Understanding the psychological and emotional needs of AIDS orphans in Africa,” in Arvind Singhal and W. Stephen Howard (eds), The Children of Africa Confront AIDS, Athens, OH: Ohio University Research in International Studies, 2003, pp. 85–104. 15. Morten Skovdal and Eleni Andreouli, “Using identity and recognition as a framework to understand and promote the resiliency of caregiving children of western Kenya,” Journal of Social Policy, 2011, Vol. 40, No. 4. Available on CJO doi:10.1017/S0047279410000693. 16. Ibid., p. 10. 17. Llorente, Social Capital and Well-being, p. 25. 18. Ibid., p. 30. 19. Ibid., p. 57. 20. Harry W. Gardiner and Corinne Kosmitzki, Lives across Cultures: Cross-cultural Human Development, 2nd edn, Boston: Allyn and Bacon, 2002. 21. Alec Irwin, Alayne Adams, and Anne Winter, Home Truths: Facing the Facts on Children, AIDS, and Poverty, Cambridge, MA: Joint Learning Initiative on Children and HIV/AIDS, 2009; Carol Levine, Geoff Foster, and John Williamson, “Introduction: HIV/AIDS and its long-term impact on children,” A Generation at Risk, pp. 1–10; Linda Richter, “The impact of HIV/AIDS on the development of children,” A Generation at Risk; Kalanidhi Subbarao and Diane Coury, Reaching Out to Africa’s Orphans: A Framework for Public Action,Washington, DC: World Bank, 2004. 22. Llorente, Social Capital and Well-being, p. 33. 23. Humuliza, “Psychosocial support for AIDS orphans,”Novartis Foundation, http://www.novartisfoundation.org/page/content/index.asp?Menu=3&MenuI D=414&ID=1171&Item=44.13.2. (Accessed September 29, 2009.) 24. www.repssi.net. (Accessed September 29, 2009.) 25. Linda Richter, Julie Manegold, and Riashnee Pather, Family and Community Interventions for Children Affected by AIDS, Cape Town: HSRC Publishers, 2004, p. 36. 26. Stefan Germann, “Call to action: what do we do?,” in A Generation at Risk. 27. Salvation Army Masiye Camps, www.masiye.com/camps/php. (Accessed October 3, 2009.) 28. Yegan Pillay, “Storytelling as a psychological intervention for AIDS orphans in Africa,” The children of Africa Confront AIDS, pp. 108–9. 29. The sports network can be found at www.kickingAIDSout.net. Kiragu Wambuii, “For the sake of the children: community based youth projects in Kenya,” pp. 131–49. (Accessed October 12, 2009.) 30. Right to Play International, www.righttoplay.com/. (Accessed October 12, 2009.)

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176   Hope Amidst Despair 31. www.unicef.org/infobycountry/Mozambique_43032.html. (Accessed October 10, 2009.) 32. http://www.comminit.com/en/node/124220/348. (Accessed October 11, 2009.) 33. Skovdal and Andreouli, “Using identity and recognition.” 34. Clowns without Borders, www.cwbsa.org. (Accessed October 12, 2009.)

9 Supporting Children  1. UNICEF, Children and AIDS: Third Stocktaking Report, Geneva: UNICEF, 2008, p. 22.   2. Paul Hutchinson and Tonya Thurman, “Analyzing the cost-effectiveness of interventions to benefit orphans and vulnerable children: evidence from Kenya and Tanzania,” USAID, SR-09-51, 2009; Florance Nyangara and others, “Effects of programs supporting orphans and vulnerable children: key findings, emerging issues, and future directions from evaluations of four projects in Kenya and Tanzania,” USAID, Sr-09-52, 2009.   3. Linda Richter, Geoff Foster, and Lorraine Sherr, Where the Heart Is: Meeting the Psychosocial Needs of Young Children in the Context of HIV/AIDS, The Hague: Bernard van Leer Foundation, 2006, p. 11.   4. Harry W. Gardiner and Corinne Kosmitzki, Lives Across Cultures: Cross-cultural Human Development, 2nd edn, Boston: Allyn and Bacon, 2002.   5. Joint Learning Initiative on Children and HIV/AIDS (JLICA), Home Truths: Facing the Facts on Children, AIDS, and Poverty, Cambridge, MA: Joint Learning Initiative on Children and HIV/AIDS, 2009, pp. 37–8.   6. Linda Richter and others, “Infants and young children affected by HIV/AIDS,” in Poul Rohleder, Leslie Swartz, and others (eds), HIV/AIDS in South Africa 25 Years On: Psychosocial Perspectives, New York: Springer, 2010, pp. 79–80.   7. Marc Tomlinson and others, “HIV/AIDS, nutrition and structural interventions in South Africa: a move in the right direction,” in HIV/AIDS in South Africa 25 years On, p. 213.   8. “Number of grandparents caring for AIDS orphans doubles in last decade,” Aids Portal. www.aidsportal.org/News_Details.aspx?ID=9451. (Accessed August 10, 2010.)  9. UNICEF, Africa’s Orphaned and Vulnerable Generations: Children Affected by AIDS, Geneva: UNICEF, 2008, p. v. 10. Ibid. 11. Mark Tomlinson, “Family-centred DIV interventions: lessons from the field of parental depression,” Journal of the International AIDS Society, Vol. 13 (Suppl. 2): S9, 2010. www.jiasociety.org/content/13/S2/S9. (Accessed July 10, 2010.) 12. Emma Guest, Children of AIDS: Africa’s Orphan Crisis, London: Pluto Press, 2001, p. 146. 13. Kalanidhi Subbarao and Diane Coury, Reaching Out to Africa’s Orphans: A Framework for Public Action, Washington, DC: World Bank, 2004, p. 32. 14. Fikelela, www. fikelela.org.za/vpg.asp?p=224. (Accessed November 3, 2010.) 15. Linda Richter, Julie Manegold, and Riashnee Pather, Family and Community Interventions for Children Affected by AIDS, 2004, p. 38. 16. Subbarao and Coury, Reaching Out to Africa’s Orphans. 17. Tatek Abebe, “Orphanhood, poverty and the care dilemma: review of global policy trends,” Social Work and Society, Vol. 7, No. 1, 2009; SOS Children’s

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notes  177 Villages International, www.sos-childrensvillages.org/pages/default.aspx. (Accessed October 21, 2010.) 18. Richter, Foster, and Sherr, Where the Heart Is, p. 73; Subbarao and Coury, Reaching Out to Africa’s Orphans, p. 86. 19. Mary O’Grady and others, OVC Programmes in South Africa Funded by the U.S. President’s Emergecy Plan for AIDS Relief: Summary Report for 32 Case Studies, Johannesburg, SA: Khulisa Management Services, 2008. 20. Leanne Dougherty and others, “A costing analysis of community-based programs for children affected by HIV/AIDS: results from Zambia and Rwanda,” Washington, DC: USAID, 2005. 21. Subbarao and Coury, Reaching Out to Africa’s Orphans, p. 81. 22. Ibid., p. 80. 23. National Association of Child Care Workers (NACCW). www.naccw.org.za/ isibindi/. (Accessed September 8, 2010.) 24. UNICEF, Evaluation of the National Association of Child Care Workers (NACCW): Isibindi Model of Care for Children Affected by HIV/AIDS, Department of Social Development, 2006, p. 34. 25. Tonya Thurman, Sun Yu, and Tory M. Taylor, Care for Caregivers: A Psychosocial Support Model for Child and Youth Care Workers Serving Orphans and Vulnerable Children in South Africa, New Orleans, LA: Tulane University, 2009, p. 10. 26. Ibid., p. 32. 27. Ibid. 28. Ibid., p. 32. 29. Richter, Foster, and Sherr, Where the Heart Is, p. 81. 30. CINDI, Children in Distress Network, www.cindi.org.za. (Accessed January 3, 2009.)

10  A Matter of Money and Intention   1. Dambisa Moyo, Dead Aid: Why Aid Is Not Working and How There Is a Better Way for Africa, New York: Farrar, Giroux, and Straus, 2009.   2. Ibid., p. 47.   3. Robert Calderisi, The Trouble with Africa: Why Foreign Aid Isn’t Working, New Haven, CT: Yale University Press, 2007.   4. Paul Collier, The Bottom Billion: Why the Poorest Countries Are Failing and What Can Be Done about It, Oxford: Oxford University Press, 2007; William Easterly, The White Man’s Burden: Why the West’s Efforts to Aid the Rest Have Done so Much Ill and so Little Good, New York: Penguin, 2006.   5. Jeffrey D. Sachs, The End of Poverty: Economic Possibilities for Our Time, New York: Penguin Press, 2005; Millennium Villages. www.millenniumvillages. org/aboutmv/mv_mayange.htm. (Accessed February 16, 2011.)   6. Nana K. Poku, AIDS in Africa: How the Poor Are Dying, Cambridge, UK: Polity, 2005, p. 39.   7. Transparency International, “Indices,” 2010. www.transparency.org/policy_ research/surveys_indices/cpi/2010/results. (Accessed February 16, 2010.)   8. Human Development Report, The Real Wealth of Nations: Pathways to Human Development, New York: United Nations Development Programme, 2010, p. 146.

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178   Hope Amidst Despair   9. Cohen, Jon, “HIV/AIDS: follow the money: the great funding surge: where have all the dollars gone?”, Science, Vol. 321, No. 5888, 2008, p. 524. 10. Bernard River, “Corruption by Global Fund grant implementers,” Global Fund Observer, January 27, 2011. www.allafrica.com/stories/201101280926.html. (Accessed January 30, 2011.) 11. The Global Fund for Children granted support to one of CHABHA’s partners for several years. Their proposal- and report-writing requirements are particularly user-friendly and intended to help local projects in capacity development. They supplement written reports with visits. 12. Collier, The Bottom Billion. 13. Easterly, The White Man’s Burden, pp. 5–7, 13–15. 14. Center for Global Development ,“Commitment to development index 2010.” www.cgdev.org/section/initiatives/_active/cdi/inside. (Accessed November 10, 2010.) 15. Told to me by Eric Rwabuhihi concerning an NGO funded by USAID, May, 2006. 16. World Food Programme, “Fighting hunger worldwide,” www.wfp.org/about. (Accessed December 2, 2010.) 17. Ken Dilanian, “Review shows high pay for aid group CEOs,” USA Today, October 26, 2010, www.usatoday.com/printedition/news/20090901/usa/ news/20090901_st.art.htm. (Accessed November 15, 2010.) 18. Jon Cohen, “HIV/AIDS: follow the money” “The great funding surge,” “Where have all the dollars gone?, Science, Vol. 321, No. 5888, 2008, p. 514. 19. UNICEF, State of the World’s Children 2011: Adolescence: An Age of Opportunity, Geneva: United Nations, 2011, pp. 112, 114–15. 20. Moyo, Dead Aid, p. 28. 21. African Child Policy Forum, The African Report on Child Wellbeing: Budgeting for Children, Addis Ababa: African Child Policy Forum, 2011, p. 12. 22. Ibid., p. 21. 23. Valeria Leach, “Can a developing country support the welfare needs of children affected by AIDS?” A paper to contribute to a debate for the Joint Learning Initiative on Children and AIDS, Cambridge, MA: Joint Learning Initiative on Children and HIV/AIDS: Learning Group 4, June 15, 2007. 24. Malcom F. McPherson, “Can a developing country support the welfare needs of children affected by AIDS?” A paper to contribute to a debate for the Joint Learning Initiative on Children and AIDS, Cambridge, MA: Joint Learning Initiative on Children and HIV/AIDS: Learning Group 4, September 12, 2007. 25. Ibid., p. 9. 26. Reported in Alex de Waal and Masuma Mamdani, Social and Economic Policies, Cambridge, MA: Joint Learning Initiative on Children and HIV/AIDS: Learning Group 4, 2008, p. 21. 27. Ibid., p. 22. 28. Ibid., p. 23. 29. Geoff Foster, Bottlenecks and Dripfeeds: Channeling Resources to Communities Responding to Orphans and Vulnerable Children in Southern Africa, London: Save the Children UK, 2005, p. 5. 30. de Waal and Mamdani, Social and Economic Policies, p. 9. 31. Foster, Bottlenecks and Dripfeeds, p. 1.

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notes  179 32. Geoff Foster, Madhu Deshmukh, and Alayne Adams, Inside Out? Strengthening Community Responses to Children Affected by HIV/AIDS, Cambridge, MA: Joint Learning Initiative on Children and HIV/AIDS, Learning Group 2, 2008. 33. Collier, The Bottom Billion; Foster, Bottlenecks and Dripfeeds. 34. Foster, Deshmukh, and Adams, Inside Out? 35. Global Fund for Children, International Foundation, Operation Days Work, Weyerhaeuser Foundation, SUPAU Foundation. 36. Chris Desmond, “Can a developing country support the welfare needs of children affected by HIV/AIDS?” A paper to contribute to a debate for the Joint Learning Initiative on Children and AIDS, Cambridge, MA: The Joint Learning Initiative on Children and HIV/AIDS: Learning Group 4, August, 2007, p. 10. 37. McPherson, ‘Can a developing country support the welfare needs of children’, p. 3. 38. Qur’an, 76: 8–9, 90: 14–15. 39. New Revised Standard Bible, Isiah 1:17, Psalms 82:3. 40. New Revised Standard Bible, Mark 10:21. 41. de Waal and Mamdani, Social and Economic Policies, p. 17. 42. Ibid., p. 24. 43. Loren Eisley, The Star Thrower, Orlando, FL: A Harvest Book, Harcourt, 1978.

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Index ABC, 74 ABC Ulwazi, 123 a,^pbstinence, 72–9, 170 abuse, 48, 92; and human rights, 28; protection from, 15; sexual 94–5, 111 acquired immune deficiency syndrome; see HIV/AIDS adolescents, access to secondary school, 140; attitudes toward prevention, 81; infection, 60; knowledge of HIV/AIDS, 68–70; and loveLife, 79–81; peer influences, 42; early marriage, 92, 93; early sexual practice, 41, 60; vocational training, 102 Adonis, Bernice, 170 adoption, 130 African Child Policy Forum, 12, 150, 171, 178 African Economic Outlook, 101, 173 agriculture, food production and cost, 83–4; acquiring farming skill, 120, 144; and tying, 148 aids2031 Consortium, Taking a Long Term View, 163, 169, 171 Amnesty International, 163 Andreouli, Eleni, 118, 123, 175, 176 antiretrovirals (ARVs), 53–72, 157; and children, 63–3; and funding, 64–7; focus country coverage, 30, 32, 33, 34, 35; guidelines for initiation, 22–6; history, 53–4; Lazarus effect, 51, 58–9; motherto-child-prevention, 54–7; and prevention, 71–2 Archer, David, 73, 74, 106, 164, 170, 173, 174 Ashburn, Kim, 46, 167 Barnett, Tony, 44, 167 Baxen, Jean, 166, 169, 170 Beah, Ishmael, 93

Beegle, Kathleen, 173 behavior change, 21, 32, 70, 72; evaluation, 68; and gender, 40–50, 74–5; knowledge of HIV/AIDS and, 76–8; see also condoms Bhana, Arvin, 171 Bible, New Revised Standard, 154, 179 birth registration, 91–2 Boler, Tania, 73, 74, 106, 164, 170, 173, 174 Botswana, 43, 75 Breidlid, Anders, 166, 169, 170, 171 Bronfenbrenner, Urie, 127 Burundi 3, 25–6, 164; access to drugs, 61–2; CHABHA, 69, 136; Child Development Index, 26; comparison with Rwanda, 63–4; foreign aid and, 63–4; 149; knowledge of HIV/AIDS, 60, 69; poverty in, 26, 35, 84; prevalence, 34, 157; Prevention of Mother-to-ChildTransmission (PMTCT), 56, 57; programs, 129, 146; and schools, 98, 100, 102, 107, 108–9; sexual practices, 43; stunting, underweight, 85–6; testing, 56; transmission, 23; treatment, 34, 57, 61–2; Under Five Mortality Rate (U5MR), 87; see also education, poverty Calderisi, Robert, 144, 177 Campbell, Catherine, 72, 106, 169, 173 camps and workshops, 6, 89, 103, 113, 121–2, 175; Life Skills, 69, 77–8, 137, 139–40 capacity building, 3, 18, 121, 132, 138, 141, 152 cash transfers, 127–8, 158; see also Child Support Grants Center for Global Development, 164, 178

180

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INDEX  181 CHABHA, 2–3, 136–41; activities, 122–3; building independence, 116–17; funding, 145, 152–3, 173, 178; and gender, 39; knowledge of HIV/AIDS, 69–70; leaders in, 2, 6–7, 54–5, 77–8, 101, 116, 119, 120–1; school, 97, 101; and social capital, 118–20; vocational education, 102–4; volunteers, 155–6 CHABHA partner associations, AJESOV, 129, 137; Amahoro, 111, 115, 119, 123, 138–9; communication, 152; Mubafashee, 129, 146 Child Development Index, 12, 26, 28, 30, 33, 35, 108, 164, 165, 172 child diseases, 57, 88 child labor, 58, 93 child mortality, see Under-Five-ChildMortality (U5CM) child parliaments, 17, 163 Child Support Grants, 127–8, 129, 131, 133, 135, 158 children’s rights, 14–17, 122, 134, 139, 158, see also Convention on the Rights of the Child children’s words and pictures, 9, 17, 21–2, 38, 40, 43, 45, 47, 49, 52, 92, 96, 99–100, 110, 111–2, 120, 138, 147 CINDI, Children in Distress, 142, 177 Circles of Care, 126, 128–30, 130, 141 Circles of Support, 106 circumcision, 70–1, 169 Clinton, President Bill, 53 Clowns without Borders, 124, 176 Cluver, Lucie, 174 Cohen, Jon, 145, 178 Collier, Paul, 144, 147, 177, 178, 179 community support, 125; extent, 151; grassroots, 2; young adults, 134, 137, 141, 143, 154, 158 condoms, access, 74, 81; and adolescents, 42, 47; attitudes toward, 72, 75; female condom, 72; gender and 39–40, 44, 103; how to use, 76–8; level of use, 19, 21, 68, 70, 159; reliability, 71 Convention on the Rights of the Child, 14–17, 154

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Cook, Alicia, 175 cost of care, 133–4 co-trimoxazole, 57 Coury, Diane, 131, 172, 175, 176, 177 Das, Pam, 67, 163, 169 Deacon, Harriet, 174 deaths from AIDS, and ARVs, 8, 21, 53, 60, 63–5; grandparents, 49; history, 23, 31; mother deaths, 37, 44, 110–11; and South Africa, 32; worry, 114, 128; see also grief, Under-Five-Mortality-Rate (U5CM) denial, 32, 75 Desmond, Chris, 150, 153, 179 despairs, 1, 157–60 de Waal, Alex, 151, 164, 178 Dilanian, Ken, 148, 178 Dixon-Mueller, Ruth, 166 donors, attractive projects, 90–1, 131; Burundi/Rwanda 63–4; country, 2, 13, 58, 149; donor fatigue, 64–5; downturn, 64–5, 159; Fast Track Initiative, 109; inequity, 62–3; international, 46, 54; maternal health and, 87; and overhead, 148; recommended changes, 161; see also foreign aid, funding, Transparency International drama, 78–9, 123 drugs, see treatment Easterly, William, 144, 147, 177, 178 education, 96–109; fees and other costs, 98–100; funding for, 107–9; gender, 102–3; and HIV/ AIDS, 106–7; orphan attendance, 98; pre-primary, 100; school completion, 100; secondary, 100–2; universal primary education, 97–8; see also Education for All, vocational education Education for All (EFA), 107–8 Ellis, Deborah, 110, 174 Epstein, Helen, 75, 80, 164, 169, 170, 171 Ethiopia, 45, 130, 174 European Union, 54, 64 evaluation, 20, 79, 80, 125, 156

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182   Hope Amidst Despair Ewing, Deborah, 174 A Fair Chance at Life, 91, 171, 172 Fast Track Initiative (FTI), 108–9 Fikelela, 131, 176 fistula, 93 focus countries, 24–35; similarities and differences, 3–4, 21–2, 24, 34, 63, 91; see also foreign aid food, agriculture and impact from external sources, 83–4, 120; being hungry, 9, 11, 13, 45, 85, 92, 96, 113, 114, 115; community and, 14; food aid, 148; and independence, 140, 146; and poverty, 9, 90, 128, 133, 159; security, 8, 83–4; and tying, 148; see also stunting and underweight, World Food Programme foreign aid, 5, 143–9; country dependence, 64, 144; and corruption, 145–6, 149; equity in, 149; and focus countries, 23, 28, 35, 64; and HIV/AIDS, 64–6; overhead, 148; tying, 147–9; see also donors, funding, Transparency International Foster, Geoff, 126, 151, 163, 164, 174, 175, 176, 177 foster care, fostering, 93, 127, 131–3 funding, allocations, 90, 143; for children, 150–3; for education, 109; for treatment, 23, 65, 72; level funding, 64–5; maternal, 87; projects, 133; 138; see also foreign aid, PEPFAR Gakidow, Emmanuela, 172 Gates, Bill and Melinda Foundation, 54, 65, 149 gatherings, 104, 113, 119, 122, 123, 136, 139, 140, 151 gel, as prevention, 68, 71, 157 gender, 37–50, 126; awareness of, 46–7; caregivers, 48; children and gendered roles, 40–2, 74–5; economic dependence, 39; girls’ risks, 45; and HIV/AIDS prevalence, 37–8; and marriage, 44–5; programs, 46; protection, 29; school

Grannis T02432 02 index 182

and 10, 100, 102, 108–9, 157; sexual exploitation, 10; treatment, 62; violence and, 45–6, 50; vulnerabilities, 48; see also Prevention of Mother-to-Child-Transmission (PMTCT) genocide, 3, 17, 23, 24, 27, 28, 35, 136, 146, 149, 165 Gettleman, Jeffrey, 164 Ghys, Peter, 164, 169 Global Fund for Children, 178, 179 Global Fund to Fight AIDS, Tuberculosis, and Malaria, 46, 54, 63, 64, 71, 145, 146, 149 Gouws, Eleanor, 164, 169 grandparents, 19, 48–9, 128–30, 176, see also gender grief, 1, 110–3, 114, 116, 123, 124, 128, 114 Guest, Emma, 130, 176 Hankins, Catherine, 171 Hatzfeld, Jean, 28, 165 Hawkes, Jesse, 170 Hecht, Robert, 23, 164 Hindin, Michelle, 166 HIV/AIDS (human immunodeficiency virus/acquired immune deficiency syndrome), alternative explanation, 60; change in prevalence, 21; CD4 cells, 22, 53, 56, 63, 64, 68; costs in focus countries, 149; the disease, 22–3; and family, 51–3; in focus countries, 26, 28, 30, 31–2, 33, 34; funding for, 64–6; history, 23–4; and life expectancy, 84–5; and Prevention of Mother-to-ChildTransmission (PMTCT), 51, 54–8; psychosocial needs, 110–8; and school, 106–7; 150–1; support programs, 125–42; T cells, 22, 23; and treatment, 51–64; viral load, 22, 23, 56, 72; see also focus countries HIV/AIDS in South Africa 25 Years On, 12, 171, 174, 176 HOKISA, 132 hopes, 157–8 Horton, Richard, 67, 163, 169

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INDEX  183 home visits, 48, 85, 113, 125, 128, 129, 132, 135, 137, 138–9 Human Development Report, 33, 159, 165 Humuliza, 120, 175 Hutchinson, Paul, 176 hygiene, 89, 122, 139 Iliffe, John, 23, 164 immunization, 82, 89, 90 income, 82, 83–4, 127, 152; income generating activities, 133, 141; see also poverty International AIDS Conference, 67, 71 International Conference on Education, 97 International Monetary Fund, 107 International Red Cross/Red Crescent Report, 8, 163 Irwin, Alec, 175 Isibindi, 129, 134–6, 141–2, 152, 177 Jewkes, Rachel, 45, 167 Joint Learning Initiative on Children and HIV/AIDS, 12, 127, 150–1, 152, 163, 164, 168, 175, 176, 178, 179 Kagame, Paul, 17, 27, 28, 149 Kaiser Family Foundation, 79, 164, 165, 166, 170 Katenda, Luyando Mutale, 163 Killian, Beverly, 175 Kimani, Mary, 167 Kimou, Jose, 163, 168 Kindlimuka, 76 knowledge of HIV/AIDS, 19, 20, 43, 68–70, 76, 79, 106–7, 122, 159 Kolker, Jimmy, 55 KwaZulu Natal, South Africa, 58–9, 80 Leach, Valerie, 150, 178 Leclerc-Madlala, Suzanne, 168 Levine, Carol, 174, 175 life expectancy, 8, 32, 84–5 Life Skills workshops, 6, 69, 137, 139–40, see also camps and workshops Lindegger, Graham, 167

Grannis T02432 02 index 183

Llorente, N. A. C., 111, 113, 118–19, 120, 174, 175 local elite, 153, 161 Loewenguth, David, 156 McPherson, Malcolm, 150, 151, 153, 178, 179 malaria, 53, 88, 90 Malawi, 17, 29, 108, 111 malnutrition, 4, 10, 58, 148 Mamdani, Masuma, 151, 154, 164, 178, 179 Mandela Nelson, 6, 7, 13, 20, 31, 163 Mash, the Rev. Rachel, 74 Masiye Camp, 121, 175 Matsoso-Makhate, Mamatsoso, 75, 169, 170 Mbeki, Thabo, 32 Médecins sans Frontières (MSF), 64–5, 168, 170 memory boxes, 121 Millennium Development Goals (MDGs), 90–1, 173; and ARV treatment, 61; concept and explanation, 61, 82, 83; and despair, 159–60; and gender disparity, 102; and HIV/AIDS, 65; and malaria, 88; planning and, 147; and poverty, 84–6; and sanitation, 89; and schools, 97, 99, 109; and water, 88; see also poverty, stunting, Under-Five-Mortality-Rate (U5MR), underweight Mkhise, Sibongile, 59 Moore, Ann, 166 Moyo, Dambisa, 143, 149, 177, 178 Mozambique, 17, 29, 46, 47, 76, 123 Mwewa, Rodgers, 130 Namibia, 2, 31, 105, 146 Nazareth House, 59 networks of sexual partners, 23–4, 43 nutrition, 12, 19, 86, 87, 90, 106 Nyamukapa, Constance, 173 orphan, 163, 172, 173, 174, 175, 176, 177, 178; age orphaned, 10; awareness of 12–13; external support for, 10–12; in focus countries, 30, 32, 33, 34; grants,

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184   Hope Amidst Despair 134; in literature on AIDS, 12–13; living arrangements, 9, 14, 48–9, 93, 126–33; and mental health, 112–5; needs, 9–10; numbers of, 8, 9, 28, 142; and poverty, 9, 18, 85; prevention and, 76; and religion, 154; and schools, 96, 98, 101, 104, 106; and stigma, 1, 6, 51, 76, 106, 119; see also children’s words and pictures, grief, poverty, psychosocial issues orphanage, 126, 131–3 Parker, Warren, 43, 166, 171 Partners in Health, 59, 87 PEPFAR (President’s Emergency Plan for AIDS Relief), 166, 167, 170; and abstinence, 73–4; in focus countries, 63–4, 149; and gender, 26, 46–7 Peterson, Marit, 166 Pillay, Yegan, 175 Poku, Nana, 144, 172, 177 poverty, 82–95, 150, 159, 168, 171, 174, 175, 176; cash transfers and, 127–8; equity, 153; in focus countries 25, 30, 35; gender and, 45; grandparents and 49; and HIV/ AIDS, 1, 8, 9, 61, 64–5, 82–3; life expectancy, 84; and Millennium Development Goals (MDGs), 143; per capita income, 84; under $1.25 a day, 84; see also gender, grandparents, malnutrition, Under Five Mortality Rate (U5MR) prevalence of HIV, in Botswana, 75; changes in, 1, 21; in focus countries, 24, 26, 28, 30, 32, 33–4, 35–6, 63; and gaps between rich and poor, 24; and gender, 42; and orphan care, 95, 104, 130; see also gender prevention, 67–81, 159, 163, 164, 169, 170, 171; ABC, 74; abstinence, 72–4; attitudes and 74–7; behavior change, 72; biomedical procedures, 70–3; in CHABHA, 77–8, 122, 139; circumcision, 71–2; condom use, 70–2; from early treatment, 63, 72; evaluation, 68; in focus countries, 26, 32, 35; funding, 81; gel, 68,

Grannis T02432 02 index 184

71; and gender, 47, 103; Isibindi, 134; and Prevention of MotherTo-Child-Transmission (PMTCT), 54–8; in schools, 75–8; structural changes, 81; vaccine, 68, 70–1; see also abstinence, CHABHA, gender, loveLife, Prevention of MotherTo-Child-Transmission (PMTCT), RAPSIDA, Soul Buddyz Prevention of Mother-to-ChildTransmission (PMTCT), 54–5, 165, 167, 168; ARV coverage, 55–6, 62; and breastfeeding, 58; feelings, 54–5, 56; in focus countries, 28, 56–7; follow-up testing, 57; mother-baby packs, 57; nevirapine, 56; testing, 56 providers, 2, 19–20, 125–6, 134, 141, 160 psychological issues, 168, 171, 174, 175, 176, 177; depression 128; loneliness and grief, 4, 7, 106, 114–6, 140; mental health syndrome, 112–3, 174; worry, 110, 114–7; see also grief Qu’an, 154, 179 RAPSIDA, 78–9, 123 Rehle, Thomas, 165, 170 resilience, 10, 117–20; and activities, 110, 120–4 responses to children, 10, 19–20, 125–42; ARVs, 62–3; and community, 2, 151–2, 154; family, 9–10, 19, 48–9, 128–30; gap between policy and action, 2; by governments, 150–1; international, 13; numbers helped, 10–11; in reports and literature, 11–12; see also CHABHA, Isibindi, programs, psychological issues, support for children Richter, Linda, 126, 175, 176, 177 Right to Play International, 124, 175 Rohleder, Paul, 163, 165, 167, 168, 171, 174, 176 Rolls, Hilda, 40, 166 Rwabuhihi, Eric, 3, 136, 178

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INDEX  185 Rwanda, 27–8, 35, 164, 165, 170, 174, 177; CHABHA, 2–3, 6, 134, 136–42, 153, 156; Child Development Index, 28; children’s summit, 17; comparison with Burundi, 63–4; displacement from city, 28; family, 129; foreign aid, 63–4, 65, 90, 144, 149; gender, 38–40; HIV/AIDS, 23, 54–5, 57, 61, 62, 157; knowledge of HIV/ AIDS, 69–70; learning about HIV, 47; poverty, 85–6, 87; Prevention of Mother-to-Child-Transmission (PMTCT), 55–6, 57; prevalence, 24, 157; sexual practices, 41, 43, 23–4, 74; and schools, 75, 98–100, 101, 103, 107; testing 56; treatment, 61, 62; transmission, 23; see also CHABHA, psychological issues, RAPSIDA, Under-Five-ChildMortality (U5CM), vocational education Sachs, Paul, 144, 177; Millennium Village 144, 177 sanitation, 4, 8, 19, 83, 88–9, 126, 159 see also Millennium Development Goals (MDGs) Save the Children – UK, 85, 87, 163, 164, 165, 171, 172, 178; see also Child Development Index, A Fair Chance at Life, Foster security, safety, 1, 9, 26, 66, 81, 146, 150 self-reliance, see resilience sexual practices, adolescents and, 41–2, 74, 76, 81; childhood play and, 40–1, 50, 74, 140; compliance and, 41; gender and, 40, 50; safe sex practices, 70–1; use of condoms, 79; see also loveLife, networks of sexual partners, Soul Buddyz sexually transmitted infections (STI), 10, 94 Shafer, Miriam, 103 Shafer, Naomi, 3 Shisana, Olive, 171 Sierra Leone, 10 Simpson, Anthony, 39, 43–3, 166, 167 Singhal, Arvind, 175

Grannis T02432 02 index 185

Skovdal, Morten, 118, 123, 175, 176 Somalia, 163 songs, singing and dancing, 6, 123, 136, 139 Sonke, 47, 167 SOS Children’s Villages, 132 Soul Buddyz, 79, 179 South Africa, 2, 24, 26, 30–3, 34, 35, 163, 165, 166, 171, 175, 176; adoption and, 130; child registration, 91; Child Development Index, 79; child wellbeing, 133; children’s rights, 16; foreign aid, 149; gap between rich and poor, 84; gender, 37, 40–1, 44, 48, 167, 168, 170; history, 31–2; knowledge of HIV/AIDS, 69; orphanages, 131; poverty, 86; prevalence, 35; prevention, 75, 76, 170, 171, 174; Prevention of Mother-to-ChildTransmission (PMTCT), 56, 57, programs, 79, 79–81, 129–36, 177; sanitation, 89, and schools 87, 100, 101, 103, 107; testing 55–6, 60; treatment, 57, 58–9, 61–2, 64, 157; violence, 45, 167; see also Child Support Grants, CINDI, corruption, education, Isibindi, loveLife, Mandela, Mbeki, psychological issues, Soul Buddyz, South African Centre for the AIDS Programme of Research, Steinberg, underweight South African Centre for the AIDS Programme of Research, 71 sports, 122, 140 Starfish story, 155 Steinberg, Jonny, 60, 168 stigma, 1, 6, 32, 35, 51–2, 60, 75–6, 112, 116, 119–20, 173, 174; activities to reduce, 122–4; in school, 105, 106; see also CHABHA, psychological issues storytelling, 122 Stratton, Alan, 174 street children, 94–5 stunting, 85–6, 148, 159; see also underweight Subbarao, Kalanidhi, 131, 172, 175, 176, 177

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186   Hope Amidst Despair support for children, 125–42; circles of care, 126–33; community, 40, 118–24, 152–3; conditions to consider, 18–20; diagram, 126; exploitation, 92–5; funding for, 150–1; level of support, 10–11; orphan needs, 9–10, 82–4, 85–8, 110–6; prevention 75, 81; in reports, 11–12; for resiliency, 117–8; in school, 106–7; treatment, 62–3; see also CHABHA, Child Development Index, education, funding, Isibindi, Millennium Development Goals (MDGs), psychological issues, registration, responses to children Susser, Ida, 46, 59, 72, 166, 167, 168, 169 Swaziland, 10, 128 Tanzania, 29–30, 35; behavior change, 76; Child Development Index, 30; child mortality, 87; child wellbeing, 150, 157; condom use, 70; early sex, 41; foreign aid, 144, 149; gender, 45, 47, 102; Kagera region, 75; knowledge of HIV/AIDS, 67, 68, 69; poverty, 84, 85; prevalence, 34; Prevention of Mother-toChild-Transmission (PMTCT), 56, 57; programs, 120, 125; and schools, 98, 100, 107, 108; testing, 55; treatment, 61–2; see also corruption, Humulisa, poverty, Under-Five-Mortality-Rate (U5MR) Thurman, Tonya, 176, 177 Tomasevski, Katarina, 98, 173 Tomlinson, Marc, 176 trafficking, 92, 94 transmission, and alcohol, 40, 43; and ARV treatment, 72; and circumcision, 71; gels, 157; gender and, 42; history, 24, 30, 72; knowledge of, 19, 20, 68–70, 77–8; Mother-to-Child-Transmission (MTCT), 28, 54–8, 165, 167; and STIs, 41; and rape, 45; see also commercial sex, gender, networks of sexual partners transparency, 145, 147, 156

Grannis T02432 02 index 186

treatment, 51–66, 168, 170; changes, 51, 60–1, 72; and children, 62–3; effect on virus, 53; equity, 62, 63; in focus countries, 35, 61–2, 64; funding, 54, 64–6, 143; history, 53–4; Lazarus effect, 51, 58–9; Millennium Development Goals (MDGs), 61–2; obstacles, 59, 61; and prevention, 55, 66–8, 81; stigma, 33; Treatment 2.0, 63, 168, 170; see also antiretrovirals (ARVs), Prevention of Mother-to-ChildTransmission (PMTCT), 54–8 ubuntu, 6, 7, 13–14, 20, 47, 119 Uganda, 17, 23–4, 74, 75; ABC, 74; corruption, 145–6; gender, 46; school fees, 108; and Tanzania, 29–30 Umulisa, Micheline, 103, 120 UNAIDS (The Joint United Nations Programme on HIV/AIDS), 12, 21, 23, 33, 34, 46, 56, 61, 64, 70, 163, 164, 165, 166, 167, 168, 169, 170, 173; Treatment 2.0, 63 Under-Five-Child-Mortality (U5CM), 65; and equity, 91; in focus countries, 86–7, 146; Millennium Development Goals, 83, 159–60; see also A Fair Chance at Life Underhill, Kristen, 170 underweight, 82, 85, 86–8, 90, 146 UNESCO (The United Nations Educational, Scientific, and Cultural Organization), 97, 107, 170, 173; see also Education for All (EFA) UNICEF (The United Nations Children’s Fund), 55–6; and Convention on the Rights of the Child, 14–16, 163, 172; invisible children, 10–22; Progress for Children, 86–7, 88, 90, 168, 171, 172, 173; State of the World’s Children, 68, 94, 166, 171, 172, 173, 178; stocktaking reports, 12, 57, 69, 163, 168, 174, 176 United Kingdom, UK, 26, 54, 108; see also Save the Children – UK United States, USA, 73–4, 147; see also CHABHA, PEPFAR, USAID

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INDEX  187 universal access, 55, 61 universal primary school, 83, 97–9, 107, 108; see also education USAID (United States Agency for International Development), 95, 133, 148, 167, 168, 176, 178 vaccine, 67–8, 70–1, 157 Van Dijk, Lutz, 174 vertical transmission, see Prevention of Mother-to-Child-Transmission (PMTCT) vocational training, 3, 19, 81, 101–2, 117, 126, 133, 136, 140, 159 volunteers, 48, 131, 133, 137, 155–6 Wangenge-Oume, Gerald, 75, 169, 170 water, 4, 15, 19, 82–3, 88–9, 140, 159 Whiteside, Alan, 44, 167, 174 World Bank, 46, 54, 63–4, 108, 149 World Food Programme, 148

Grannis T02432 02 index 187

World Health Organization, 22, 58, 65, 71 youth-led organizations, see Isibindi; see CHABHA Zaire, 145 Zambia, 16, 17, 33–4, 36, 110, 130, 157, 159, 163, 165; Child Development Index, 33; child labor, 93; gender, 39–40, 41–2, 43, 44, 46, 166; funding, 144, 145–9; early marriage, 93; knowledge of HIV/AIDS, 69–70; poverty, 85, 86, 87; prevalence, 33; Prevention of Mother-to-Child-Transmission, 55, 56, 57; programs, 120, 133; registration, 91; and schools, 98, 100, 103, 107; testing, 55–6; treatment, 33, 61–2; see also behavior change, education, Millennium Development Goals

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Grannis T02432 02 index 188

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Grannis T02432 02 index 189

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Grannis T02432 02 index 190

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