The Affordable Care Act as a National Experiment: Health Policy Innovations and Lessons [2 ed.] 9783030667269, 303066726X

Table of contents :
Preface
Contents
Contributors
Chapter 1: Introduction: An Overview of the ACA as a National Experiment
References
Chapter 2: A Decade of ACA: The Successes, Unfinished Work, and Impact of the Affordable Care Act
The ACA’s Successes
Reforms to Healthcare Delivery Still Stand
The Expansion of Medicaid in States Across the Country
Despite the Negative Predictions from Opponents, the Market Embraces and Protects the ACA
The ACA Is Promoting and Encouraging Innovation in Healthcare Delivery
The Unfinished Work of the ACA
Medicaid Expansion Needs to Exist in All States and Without Work Requirements
Subsidies Should Be Adequate in Every State to Ensure That Everyone Has Access to Healthcare
State Marketplaces Need More Health Plans at Affordable Prices
A Public Option Is Now Being Reconsidered as a Part of the ACA
The Legacy of the ACA
References
Chapter 3: Patient Protections in the Affordable Care Act
A History of Patients’ Rights Efforts
Overview of Patient Protections in the ACA
Evaluating Whether the ACA’s Patient Protections Have Been Effective and What Areas Need Improvement
A Path Toward More Comprehensive Protections
References
Chapter 4: Beyond Coverage and Controversy: The ACA’s Distinctly American Approach to Healthcare Coverage and Reform
The ACA’s Legislative History
The ACA Approach to Healthcare Reform
Looking Forward: US Healthcare Coverage Compared to Other Developed Nations
Can Policymakers Build on ACA’s Progress?
References
Chapter 5: Medicaid Expansion and Insurance Reform Under the Affordable Care Act: The New Federalism of Health Policy or the Same Old Same Old?
A Brief History of Federalism in US Health Policy
The ACA and Health Insurance Coverage
The ACA and Health Insurance Regulation
Federalism in US Health Policy Post-ACA
References
Chapter 6: Policies Designed to Achieve a Data-Driven Learning Healthcare System: A Decade of Progress and Future Directions
The Triple Aim and the ACA: From Theory to Strategy
Early Health IT Experiments: Beacon Communities
Health IT Legislation After the ACA and Future Implications
References
Chapter 7: The Healthcare Message Wars
Healthcare Messaging Pre-ACA
White House Messaging Falters After Passage of the ACA
Healthcare Prominent in 2016 Presidential Campaign
Pelosi Moves to Reclaim Healthcare Messaging
2020 Presidential Candidates Search for Rhetorical Sweet Spot
References
Chapter 8: The Role of the Supreme Court in Shaping the Affordable Care Act
National Federation of Independent Business (NFIB) v. Sebelius
Other Challenges to the ACA
References
Chapter 9: The Center for Medicare and Medicaid Innovation – A Decade of Experimentation and Continued Evolution
A Decade of Models and Results
Accountable Care Organizations
Advanced Primary Care
Bundled Payments
Health Promotion and System Transformation
Second Decade of Innovation, Opportunities, and Challenges
Emphasizing Accountability and Managing Total Cost of Care
Improving How Models Are Designed and Tested
Building the Evidence for Expansion and Dissemination
Moving Private Payers into Value-Based Payment Models
Continuing to Test and Evaluate Models
References
Chapter 10: Social Determinants: Working Upstream to Solve Health Problems Before They Start
Social Determinants: A Primer
Examples of Social Determinants of Health
Economic Stability
Education
Social and Community Context
Neighborhood and Built Environment
Health and Healthcare
The Difference Between Addressing Social Determinants of Health and Addressing Individual Social Needs
Social Determinants Programs in the United States
Health System Programs Addressing Health-Related Social Needs
Boston Medical Center’s Housing Initiative
MANNA’s Nutrition Program
REACH’s Mammograms
Public Programs Addressing Social Determinants of Health
SNAP
Public Housing
Public Education
Think Globally, Act Locally
References
Chapter 11: Stories of the Uninsured
Coverage Gaps
Coverage Churn
Citizenship Status
Work Requirements
Being Uninsured Affects All Income Levels
Being Underinsured
Preexisiting Conditions Before the ACA
Twenty-Eight Million Americans Are Uninsured
References
Chapter 12: Can Fifty-One Laboratories Cure What Ails the Individual Health Insurance Markets?
Switching to a State-Based Marketplace
Establishing a State Reinsurance Program
Restricting the Sale of Individual Health Insurance That Is Non-compliant with the ACA
Enacting State Individual Mandates
Expanding Subsidies
Implementing a Public Option Buy-In Program
Conclusion
References
Chapter 13: What’s Next: The Push for Universal Healthcare
Uncovered: The Remaining Uninsured—Who Are They?
The Coverage Gap
Citizenship Status
Barely Covered: The Underinsured—A Growing Problem
A Solution: Universal Healthcare
Medicare for All
A Public Option
Expanding the ACA
Getting There: The Funding
Getting There: The Politics
My Observations
References
Epilogue
Index

Citation preview

The Affordable Care Act as a National Experiment Health Policy Innovations and Lessons Harry P. Selker Editor Second Edition

123

The Affordable Care Act as a National Experiment

Harry P. Selker Editor

The Affordable Care Act as a National Experiment Health Policy Innovations and Lessons Second Edition

Editor Harry P. Selker Institute for Clinical Research & Health Policy Tufts Medical Center, Tufts Clinical and Translational Science Institute (CTSI) Boston, MA USA

ISBN 978-3-030-66725-2    ISBN 978-3-030-66726-9 (eBook) https://doi.org/10.1007/978-3-030-66726-9 © Springer Nature Switzerland AG 2021 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Preface

Since publication of the first edition of this book, we have seen every sort of hurdle to the easy implementation of the Patient Protection and Affordable Care Act (ACA), some of which have substantially changed its very substance. But still, it endures. And as such, the ACA stands both as a major piece of a health policy innovation and as an example of what experiments in healthcare look like. The authors of the chapters that follow address the policy, the challenges, and the necessity of such experiments. The opportunity to write this second edition emphasized that the ACA—a policy experiment now a decade from its start—is not a one-­ time happening, but a process that needs continual observation, feedback, revisions, and follow-up experiments. So, this second edition continues our collective efforts to improve healthcare, and thereby health, in our country. As detailed more in the Introduction, some of the chapters are updated versions of those from the first edition; others are wholly new, broadening our perspective to include more qualitative data, a discussion about the critical role of the social determinants of health, and a look toward the future and the push for universal healthcare. Our goal, as before, is to further understand the ACA and help inform future innovations so that our country can continue forward on the path to optimizing our healthcare system. Just as we were completing this book, the COVID-19 pandemic was underway and its potential scale was looming. We were not able to address the impact of the pandemic, but we think it powerfully reinforces the importance of considering the ACA as an experiment that will need to be modified based on real-world evidence. In health policy experiments, unlike in laboratories, interventions are tested by circumstances not envisioned—in some cases dwarfing the facts that were the conditions of initial implementation. That is the case now for the ACA. Compared with conditions a year ago, there are tens of millions more people out of work, meaning many more people have no health insurance. Moreover, their access to coverage is hampered by current resistance to any expansion of the ACA.  This means less healthcare and increased suffering at a time of a pandemic. Besides being deeply troubling on a human level, this is a huge societal policy challenge, and it must contribute to the dialogue initiated by institution of the ACA.  While there is no national consensus about how healthcare should be paid for, there is a national v

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consensus that universally healthcare should be available to all. Thus, the confluence of a terrible disease, great economic upheaval, and the loss of healthcare insurance by millions intensifies the argument of learning from the ACA experiment about how that need can be effectively addressed. We hope to that despite not explicitly addressing the COVID-19 pandemic, the content of this book will inform the ever-more pressing need for this country to solve its longstanding challenges to access to healthcare. In assembling this book, thanks are owed to many. First, I must thank the chapter authors, clinicians, and policymakers who care deeply about patients, the public, and the healthcare system, all of whom were too busy to be expected to write their chapters, but did. They arose like a wave to complete this book based entirely on their passion for the topic and our joint appreciation of the need to support rational and informed discussion about the ACA. Yet, this would not have resulted in a book were it not for the masterful, tactful, and persistent organizing of this entire project by the indomitable Maggie Towne, nor would it have been possible without the astute and sensitive editing of Kathy Siranosian. Thanks are also owed to Miranda Finch of Springer Publishing, who invited this second edition and was always gracious and helpful in arranging publication. Also, as this was done under the aegis of Tufts Clinical and Translational Science Institute (CTSI), which is supported by the NIH National Center for Advancing Translational Science (NCATS) grant number UL1TR002544, I thank NIH and NCATS for the support for this work. Indeed, we are proud to consider this part of the work of Tufts CTSI and NCATS as, again, we believe that the ACA is the single largest translational research experiment of our generation, and its results deserve our attention. Boston, MA, USA

Harry P. Selker

Contents

1 Introduction: An Overview of the ACA as a National Experiment����    1 Harry P. Selker 2 A Decade of ACA: The Successes, Unfinished Work, and Impact of the Affordable Care Act����������������������������������������������������������������������    5 James Roosevelt Jr. and Terence Burke 3 Patient Protections in the Affordable Care Act ������������������������������������   15 Kavita K. Patel 4 Beyond Coverage and Controversy: The ACA’s Distinctly American Approach to Healthcare Coverage and Reform������������������   23 Shawn Maree Bishop 5 Medicaid Expansion and Insurance Reform Under the Affordable Care Act: The New Federalism of Health Policy or the Same Old Same Old? ����������������������������������������������������������������������������������������   31 Anya Rader Wallack 6 Policies Designed to Achieve a Data-Driven Learning Healthcare System: A Decade of Progress and Future Directions��������������������������   39 Umberto Tachinardi and Peter J. Embi 7 The Healthcare Message Wars����������������������������������������������������������������   47 Ceci Connolly 8 The Role of the Supreme Court in Shaping the Affordable Care Act����������������������������������������������������������������������������������������������������   57 Shawn Maree Bishop 9 The Center for Medicare and Medicaid Innovation – A Decade of Experimentation and Continued Evolution������������������������������������������   63 Purva Rawal

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10 Social Determinants: Working Upstream to Solve Health Problems Before They Start��������������������������������������������������������������������   73 Sarah Bliss Matousek and Niko Lehman-White 11 Stories of the Uninsured��������������������������������������������������������������������������   87 Rosemarie Day and Niko Lehman-White 12 Can Fifty-One Laboratories Cure What Ails the Individual Health Insurance Markets?��������������������������������������������������������������������   97 Rosemarie Day and Niko Lehman-White 13 What’s Next: The Push for Universal Healthcare��������������������������������  109 Rosemarie Day Epilogue������������������������������������������������������������������������������������������������������������  123 Index������������������������������������������������������������������������������������������������������������������  125

Contributors

Shawn  Maree  Bishop, MPP  SB Health Policy Consulting, LLC, Berwyn Heights, MD, USA Terence Burke, MA  Terence Burke Communications, Melrose, MA, USA Ceci Connolly  Alliance of Community Health Plans, Washington, DC, USA Rosemarie Day, MPP  Day Health Strategies, Somerville, MA, USA Peter J. Embi, MD, MS, FACP, FACMI  Regenstrief Institute, Indianapolis, IN, USA Niko Lehman-White, MBA, MPH  Day Health Strategies, Somerville, MA, USA Sarah Bliss Matousek, PhD, MPH  Day Health Strategies, Somerville, MA, USA Kavita K. Patel, MD, MSHS  The Brookings Institution, Washington, DC, USA Purva  Rawal, PhD  CapView Strategies and Adjunct Assistant Professor, Georgetown University, Washington, DC, USA James Roosevelt Jr., JD  Tufts University School of Medicine, Boston, MA, USA Harry P. Selker, MD, MSPH  Tufts University Clinical and Translational Science Institute, Boston, MA, USA Umberto  Tachinardi, MD, MSc, FACMI  Department of Biostatistics, Indiana University School of Medicine, Indianapolis, IN, USA Anya  Rader  Wallack, PhD  Center for Evidence Synthesis in Health, Brown University School of Public Health, Providence, RI, USA

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Chapter 1

Introduction: An Overview of the ACA as a National Experiment Harry P. Selker

Through the lens of medical research, by which experiments are conducted to test the effects of new treatments on patients, health policy innovations can be seen as experiments. Accordingly, the Patient Protection and Affordable Care Act (ACA) is not only landmark legislation, but also the largest health policy experiment our nation has undertaken in our generation. Like all experiments, it has led to more testing, building on positive results, and trying to correct negative consequences. However, unlike research done in the carefully controlled conditions in a lab or clinic, the ACA is an experiment being conducted in the midst of protean real-world challenges. That means its theories and logistics are not only tested, but also subject to initial and continuing challenges of many types. This point was emphasized in the first edition of this book, and is again here, because it highlights not only the importance of learning from innovation but also the importance of healthcare research in improving—indeed, perhaps saving—our nation’s healthcare system. Still, of all that might be said about the ACA—which has proven to be one of the most important and most controversial pieces of legislation in our nation’s history— why emphasize that it is an experiment? Portraying the American public as “guinea pigs” is not exactly flattering, and dwelling on the challenges, many of which stem from partisan politics, may not seem particularly fruitful. So why advance these concepts? Because, as with any major policy implementation, the ACA must be evaluated and data collected, so that we can determine its impact. Additionally, for those who work in this area, it is worth taking a step back from the fray to remember that while, as Martin Luther King, Jr. promised, the arc of history bends toward justice [1], real-world innovations are required to ensure that arc includes universal access to healthcare. And to paraphrase Teresa of Avila, “God has no hands but ours” [2]. To create the policy experiments that force history to bend in the right way, we must be involved. Watching from the sidelines is not an option. This H. P. Selker (*) Tufts University Clinical and Translational Science Institute, Boston, MA, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 H. P. Selker (ed.), The Affordable Care Act as a National Experiment, https://doi.org/10.1007/978-3-030-66726-9_1

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edition’s continued frame of health policy innovations as experiments is intended to make explicit that all of us need to undertake and learn from such experiments. Those of us in health policy and healthcare research must embrace this narrative, especially today, given the nation’s polarized political climate. If we cannot articulate why this policy improvement is important and how it will improve the nation’s health, we undermine our own objectives. After all, just as medical care is advanced by the bench-to-bedside-to-practice research that translates biological insights into effective treatments, the public needs to understand that care also is advanced by the rest of that chain of translational research, from practice to public benefit to policy. New treatments, or even established treatments, if not delivered effectively to individuals, have no impact on health [3]. We must make the case for the full spectrum of translational research—from bench to bedside to practice to public benefit to policy. Widespread understanding of the need for this entire chain will lead to better public support, including better understanding of the process of health policy innovation. In addition to explaining and supporting the full spectrum of translational research, this second edition also strives to make clear just how challenging such an endeavor is. Its scale and cost are enormous. Yet the public, the government, and those in healthcare delivery and policy research all must understand and support it as critical for progress on one of our nation’s most persistently unfulfilled obligations: to provide for the optimal health and function of all our residents. The ACA stands as a core component of our nation’s response to this mandate. Innumerable individuals and organizations, some well-known, and many anonymous, were involved with its development, passage, and over the past ten years, its implementation. That list includes the authors of this book, all of whom made contributions. Some were deeply involved in creating the preconditions that enabled the ACA, such as the Massachusetts universal healthcare experiment. Others helped write the legislation, stewarded it through Congress, or shaped (and continue to shape) its implementation. A few were involved in all of these efforts. Their perspectives and insights that follow all underscore that because policy innovations are experiments, plans and results cannot always be easily predicted, and often, in-­ course adjustments are needed. The first chapters of the book lay the groundwork for the discussion. In Chap. 2, James Roosevelt, Jr. and Terence Burke reiterate the significant and groundbreaking foundations of the ACA and then update its status given the political and legal machinations over the five years since the first edition. They outline the law’s successes, its unfinished goals, and how the American public’s view of access to affordable healthcare has been forever changed. Kavita Patel, who helped write the ACA, takes the conversation a step further by focusing specifically on patients’ rights and offering an evaluation of whether the ACA’s patient protections have been effective and what specific areas need improvement. Next, Shawn Bishop, who also was deeply involved in the ACA’s creation, describes the law’s distinctively American features. And later, in a subsequent chapter, she reminds us that, unlike a test run in a controlled laboratory environment, this federal policy experiment can be challenged in court at any time, modified by future acts of Congress, or repealed based

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on negative public sentiment. As a result, the ACA has been changed by some regulatory rollbacks and there have been over 60 repeal attempts, some of which have reached the US Supreme Court. Although Supreme Court decisions have not ended the experiment, they have significantly impacted its results. For example, as Anya Wallack explains in Chap. 5, after the Supreme Court ruled that the federal government could not compel states to undertake the ACA’s Medicaid expansion, the policy fell back to a more traditional federalist relationship, whereby the federal government makes an opportunity available, and states have a choice as to whether or not to avail themselves of that opportunity. Yet another challenge to the ACA, this one involving the severability of the individual mandate, may still be heard by the Supreme Court in 2021. Other hurdles to the execution of the ACA experiment have been somewhat more predictable, but not less important, such as the need to create a national health information technology infrastructure, as laid out by Peter Embi and Umberto Tachinardi in Chap. 6. And another obstacle, in common with any major policy innovation, has been the need for public messaging and engagement. The challenge of this is illustrated by Ceci Connolly, who details how anti-ACA messaging contributed to the 2016 defeat of Hillary Clinton, cost Democrats seats in Congress, and paved the way for significant substantive policy retrenchment in the Trump era. Even so, the vast majority of the ACA remains in force, thanks in large part to our system of checks and balances and the role of the courts in reviewing actions by the federal government. The next chapters of the book explore a few of the ways healthcare in our nation has changed (or not) over the past five years, and they do so by presenting an intriguing juxtaposition of quantitative and qualitative data. First, Purva Rawal reviews the Center for Medicare and Medicaid Innovation (CMMI), including its major models, results, and the challenges and opportunities that lie ahead. The CMMI is itself an innovation, with a directed channel to implementation via the Secretary of Health and Human Services rather than requiring Congressional intervention. This unusually direct pathway allows the contributions of experimentation to improve healthcare delivery, and the quantitative data outlined in this chapter provide important insights for future improvements. Then, Sarah Matousek and Niko Lehman-White explore the social determinants of health, explaining that though for decades, starting long before the ACA, Americans have been part of a separate, long-term, large-­ scale social experiment that shows us the results of healthcare delivered on a patient-by-patient basis, isolated from other health-related factors. However, as health is determined by far more than care delivered in healthcare facilities, our nation’s focus on healthcare, rather than on health, and the social determinants of health, has missed many avenues for improved health. The evidence from this experiment is that we must shift our attention more toward prevention, public health, and wellness, and ultimately, must adopt a “health in all policies” approach. Such strategies are needed to stem our country’s rising levels of un- and underinsured, as Rosemarie Day and Lehman-White illustrate with real-world examples in Chap. 11, because barriers like unstable employment and low levels of education and literacy continue to impede healthcare access.

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Day and Lehman-White continue the discussion in Chap. 12 by exploring some of the specific policy levers that states can use to promote stability in health insurance markets and thereby to improve insurance affordability to the currently in insured residents. In doing so, they illustrate how the ACA serves as a catalyst for healthcare reforms at the federal, state, and market levels. Day closes this second edition by reiterating that while the ACA is a major step, it is only one step on a longer path of optimizing our healthcare system so that it is more on par with the rest of the developed world in its fairness, efficiency, and outcomes. After careful reflection on the various paths to universal coverage, she concludes that our country does best in implementing major policy changes when we agree on a common goal and then take incremental steps to accomplish it—an approach that gives us a chance to experiment, make adjustments, and keep moving forward. Taken altogether, these chapters make it clear that while the ACA may be the largest healthcare experiment in our history, it is far from being complete or being the last. In addition to furthering understanding of this landmark legislation, the aim of this updated edition is to advance the dialogue and inform future innovations as we work toward the crucial, but still distant, objective of a more perfect healthcare system.

References 1. Martin Luther King, Jr. Speech, Montgomery; 1963. 2. Widely attributed to Teresa of Avila, as here: https://www.goodreads.com/quotes/66880-­ christ-­has-­no-­body-­now-­but-­yours-­no-­hands-­no. 3. McGlynn EA, et al. The quality of healthcare delivered to adults in the United States. N Engl J Med. 2003;348(26):2635–45.

Chapter 2

A Decade of ACA: The Successes, Unfinished Work, and Impact of the Affordable Care Act James Roosevelt Jr. and Terence Burke

Since being signed into law on March 23rd of 2010 by President Barack Obama, the Affordable Care Act (ACA) has prevailed as one of the most transformative pieces of social and economic legislation in history. As the definitive and defining piece of public policy in Obama’s presidency, it stands alongside Social Security, Medicare, and Medicaid in applying the powers of the government to increase equity in our society while ensuring that the American people can now rightfully expect to have access to quality affordable healthcare. While there is a long history of attempts to create a government-backed healthcare option – going back to President Franklin Delano Roosevelt – there were several mounting pressures that made the passage of the ACA possible. These pressures included rising numbers of uninsured and underinsured people, rapidly rising healthcare costs, an increase in the impact of chronic disease, and the realization that the costs of healthcare and the state of health of the American people can have a major impact on our economy. Despite all of this, the ACA has faced considerable political opposition. It was bashed and trashed in its development and passage into law, weaponized through the 2016 presidential campaign, and described as in a “death spiral,” right up until the high drama moment when late Senator John McCain (R-AZ) rescued it from the brink of extinction with his late night thumbs-down vote on a bill that would have killed it. After almost a decade of highs and lows, we now know that the ACA has benefitted people’s health and our economy, that there is still unfinished work to be pursued to achieve full access and equity, and most importantly, that the American

J. Roosevelt Jr. (*) Tufts University School of Medicine, Boston, MA, USA e-mail: [email protected] T. Burke Terence Burke Communications, Melrose, MA, USA © Springer Nature Switzerland AG 2021 H. P. Selker (ed.), The Affordable Care Act as a National Experiment, https://doi.org/10.1007/978-3-030-66726-9_2

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people now have an expectation that their government will provide access to quality affordable healthcare regardless of their economic situation. To create a clear view of where the ACA is today, and where it is headed into the future, we will look at the law’s successes, what still needs to be accomplished, and how the ACA has profoundly changed the landscape of healthcare access in America.

The ACA’s Successes The ACA has increasingly expanded access to care, corrected widespread abuses and inequities in the health insurance markets, improved the quality of care people receive, enhanced preventative care, and launched new healthcare and payment systems. Among these successes, the reforms that target the insurance marketplace and the delivery system for improvements are the most important.

Reforms to Healthcare Delivery Still Stand Despite the assaults on the ACA, its most important provisions  – the reforms to healthcare delivery  – remain intact and are considered by the American people rights and privileges never to be revoked [1]. The passage of the ACA enacted these insurance market reforms, which prohibit private insurers from engaging in a range of formerly common practices that had the effect of restricting access to health insurance. These practices included denying coverage or charging higher prices as a result of preexisting medical conditions, charging women higher premiums than men, retroactively terminating coverage for people who become sick, and imposing annual or lifetime caps on benefits. There were also the other reforms that allowed children to be included in their parents’ plans until age 26 and improved affordable access to mental health services. No matter how hard opponents work to dismantle the ACA, they will not be able to reverse these reforms without a fight directly from the American people. The ACA also instituted reforms that are improving care coordination and encouraging healthcare providers to oversee the continuum of care for their patients, enhancing the quality of care for each person while contributing to the larger goal of cost containment. An example of one of these reforms is the ACA provision mandating that hospitals receive reduced payments from Medicaid and Medicare if too many patients are readmitted to the hospital within 30 days. Rather than being rewarded as they were in the past, hospitals today are assuming risk when issues in their care delivery cause readmissions. This provision incentivizes hospitals to be more diligent in following up with discharged patients to make sure that they are following the care instructions they were sent home with and seeing their primary care physician.

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In addition, the ACA has helped improve care and control costs by moving providers away from fee-for-service methods to bundled payments for episodes of care and global payments for defined populations over a given period. This part of the law created a significant and revolutionary shift in the way physicians have been paid throughout history and have been successful in encouraging providers to shift their focus from volume to the value of care they deliver.

The Expansion of Medicaid in States Across the Country To ensure access to health insurance for low-income and disabled people in need of government assistance, the ACA called for a significant expansion of Medicaid with the goal of covering 16 million people by 2019. However, this part of the law was challenged in the courts on the basis that it is unconstitutional to force states to comply. The Supreme Court heard the case and ruled in 2012 that the ACA’s Medicaid expansion could stand, but that it was optional rather than mandatory for states to implement. At the time, certain governors did not seek federal funding for Medicaid expansion, which they saw as supporting “Obamacare” and thus handing a victory to President Obama. As a result, while Obama was in office the number of states that expanded Medicaid hovered around 24. However, that number has grown steadily to the current 43 states (including Washington, DC), which means that while 8 more states need to expand Medicaid, there is a positive movement to equity as access to affordable, government-sponsored healthcare is increasing across the country.

 espite the Negative Predictions from Opponents, the Market D Embraces and Protects the ACA When the ACA was being debated and then made into law, many Republicans and private health insurers opposing it put forward an economic argument saying that it would be a government “takeover” of the healthcare system and the private insurance market. The ACA was not written to be a government “takeover” of the system, but rather a means for government to ensure affordable access to healthcare for all. In fact, the ACA preserves the predominant role in the healthcare system for private providers and insurers and affords the states significant latitude over implementing many provisions of the law. Instead of a takeover, the ACA places government in a role that takes the form of a catalyst and partner rather than command and control. To be sure, the ACA acknowledges the central role of the market in advancing reform, but ensures that federal and state governments play a critical part in providing direction and facilitating that change.

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Today, after seeing an increase in their business and an ability to provide more people with quality healthcare over the last five years, the health insurers are seeing significant business benefits resulting from the ACA and are now embracing it as the law of the land. And, to ensure that the ACA prevails, they are taking creative approaches to protect it from the attempts of President Trump and Republicans to dismantle it. A good example of the market responding to sustain the ACA in the face of efforts to weaken it can be seen in “silver-loading.” In 2017, President Trump cut back on important parts of the ACA  – including the cost-sharing reduction payments (CSRs). CSRs are the federal subsidies provided to health insurers to make healthcare coverage to low-income people accessible through the ACA’s Marketplace. The ACA mandates that the level of these subsidies be tied to the premium amount of the silver plans that are offered alongside of the platinum, gold, and bronze health plans on the tiered ACA Marketplace. Instead of responding to the cut in subsidies by increasing the costs of all the tiered plans, the health insurers dramatically raised the amount of their silver plans while keeping the other plans at the same cost level. This then forced the federal government to follow the law and increase the amount of subsidies to match the increased silver plan rate and subsequently sustain access to subsidized healthcare for those in need of the ACA’s coverage. And, with these increased subsidies, people are now able to consider gold-level plans and more easily purchase bronze-level plans.

 he ACA Is Promoting and Encouraging Innovation T in Healthcare Delivery While political forces try to dismantle the ACA and revert to a regressive era in healthcare, the law has been driving innovation in healthcare delivery and cost controls that are improving quality and reducing cost burdens on people, families, and employers. Knowing that they could not be prescriptive far into the future while extraordinary change is taking place in healthcare, the framers of the ACA wrote mechanisms into the law to make reform efforts self-sustaining through constant innovation. One of these mechanisms is the Center for Medicare and Medicaid Innovation (CMMI), which was created to leverage the power of Medicare and Medicaid to drive change in healthcare delivery and improve the quality of care. It does this by developing, testing, and disseminating innovative payment and care delivery models from the private sector that emphasize care coordination and efficiency. Currently, CMMI is focused on testing new payment and science delivery models, including the Quality Payment Program, evaluating results, advancing best practices, and engaging a broad range of stakeholders to develop additional models for testing. CMMI is funded with $10 billion every ten years to create experiments to help the healthcare system evolve through best practices, and when it generates ideas that

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will advance the goals of improved care and decreased costs, the Secretary of Health and Human Services can implement these new approaches on a national scale without the consent of Congress. Another area of innovation focused on healthcare quality is the Patient Centered Outcomes Research Institute (PCORI), which was created by the ACA to conduct comparative effectiveness research to determine the relative clinical effectiveness of different healthcare products and procedures. It is estimated that fewer than half of all care decisions made in the United States are based on adequate scientific evidence. Achieving a better understanding of the clinical effectiveness of different products and procedures relative to their cost will be vital to controlling healthcare spending and directing scarce resources toward their most impactful and effective use. Studies include areas such as improving patient clinician communication, gastric bypass v. gastric sleeve, pain management through cognitive behavioral therapy (CBT), and better approaches to prescribing antibiotics to children, among many others.

The Unfinished Work of the ACA It is important to remember that while the ACA marks a major milestone in America’s public policy history, it is not the final goal. Rather, the ACA is a significant foundation for programs and policies that will continue to move this nation forward to universal healthcare coverage. Given its evolving and iterative status, there is still more to do to implement all the elements of the ACA while also fighting to preserve and restore the parts of the law that have been removed or hindered due to the relentless assaults from opponents.

 edicaid Expansion Needs to Exist in All States and Without M Work Requirements The ACA was created to make healthcare affordable for everyone – including those who live in poverty or have a disability that prevents them from working. To extend this access to all in need, the ACA originally mandated that states expand their Medicaid programs to include adults with incomes up to 138% of the federal poverty level. This was challenged in the courts and in 2012, it was determined that it would be an option for states rather than mandatory. As we stated earlier in the chapter, the Medicaid expansion is a successful outcome of the ACA as it is providing low-income adults with the coverage they need in 43 states (including Washington DC). While some states with GOP governors initially refused to undertake Medicaid expansion while President Obama was in office, more than a dozen states expanded their programs when he left. However, there are still 8 states that need to provide their low-income and disabled residents with access to affordable healthcare.

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Another current roadblock to fully implementing Medicaid expansion is the demand in certain states that the expanded pool of people eligible for the Medicaid-­ backed coverage meet work requirements in order to access their healthcare coverage. It has been shown that implementing these work requirements is counterproductive given that those who are not working are most likely unable to work and thus in need of subsidized healthcare. These requirements can also elevate overall healthcare costs as they drive up the number of people who will not have access to preventive care and will then utilize more expensive emergency care or head into catastrophic health situations. Governors and legislators in reluctant states also complain that Medicaid expansion puts a significant burden on states. The truth is, it does not. The federal government paid 100% of the costs for newly eligible adults between 2014 and 2016 in the states that adopted the Medicaid expansion to get it underway. Today, states are contributing to increase coverage, but that rate will top out at 10% of the cost in 2020. And, these states are gaining financially from the federal funding that is replacing state and local spending on uncompensated care and mental health services. In order to achieve the universal coverage and access goal that is at the heart of the ACA, these holdout states must stop seeing the ACA through a political lens, implement the Medicaid expansion, and do so without work requirements or other punitive measures.

 ubsidies Should Be Adequate in Every State to Ensure That S Everyone Has Access to Healthcare Another area that is hindering the ACA from reaching its potential in creating universal access to affordable healthcare for the American people is the lack of additional subsidies for low-income people in many states. The ACA provides federal subsidies (in the form of a premium tax credit) for beneficiaries whose household income is between 100% and 400% of the federal poverty level. Because this is not adequate to cover enrollees’ portion of premiums, co-pays, and deductibles in many cases, some states provide additional “wrap-­ around” subsidies, as well. These subsidies not only increase access to healthcare for those in need, but, according to a joint study by Harvard and the Massachusetts Institute of Technology (MIT), they also reduce uninsured rates and strengthen the marketplace risk pool, which in turn lowers premium prices. By providing states with existing data that show that increasing subsidies reduces the number of uninsured and thus the overall costs of healthcare by improving the health of residents, states could be encouraged to increase the amount of subsidies they are providing so that more people in need can access affordable healthcare.

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 tate Marketplaces Need More Health Plans S at Affordable Prices The ACA functions better when a number of health insurers in each state provide affordable plans for the marketplace to create greater access and more choice, and there are ways to entice more health insurers to offer these types of plans. In states where there are not enough affordable plan options, state government can provide an attractive and effective platform for health insurers to offer affordable plans to potential new members through the state exchange. This opportunity to grow their members incentivizes the insurers to create new affordable products for the exchange. Building these exchanges does not require a ground-up effort. States can follow what has already proven successful across the country, which is to create a web-­ based exchange with multiple offerings that bears the state’s branding while using the federal ACA back-end enrollment system. This allows a state exchange to get up and running fast by using a tested and refined enrollment system. To increase enrollment, and thus further encourage insurers to provide affordable plans, states can and should engage in robust marketing efforts to promote their exchange and the benefits of enrolling. This comes in the form of campaigns built on advertising, events, and institutional partnerships with organizations like major sports teams that successfully encourage enrollment and ultimately, boost the health insurers’ membership numbers. Extending enrollment periods also increases the number of people signing on for coverage, resulting in potential membership growth in the health plans. And, the health insurers should be reminded that being part of a state-run exchange provides them with flexibility in pricing that can allow them to be competitive and successful in the exchange.

A Public Option Is Now Being Reconsidered as a Part of the ACA During the 2019 presidential primary cycle, Democratic candidates introduced new approaches to healthcare and debated the merits of the best way to create universal healthcare coverage. When the ACA was being shaped and deliberated, including a public option as part of the marketplace structure was considered. However, the opposition from Republican senators, the health insurance industry, and conservative commentators was so strong that it could have scuttled the entire ACA, and the public option was dropped. But presidential candidates are calling for reintroducing the public option into the ACA.

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The public option would enable people to receive their coverage through a plan offered by the government instead of the plans offered by the private health insurers on ACA Marketplaces. This would be similar to how eligible people can sign onto Medicare or Medicare Advantage plans. The public option brings with it benefits that could promote a better structure for provider pricing that would reduce health insurance premiums.

The Legacy of the ACA Even though it is still running a gauntlet of legal, legislative, and political challenges, the ACA will succeed and have a greater impact on more people than perhaps any law in American history. That is because, aside from the effects on changing the healthcare industry, the passage of the ACA enshrines a more significant role for government in providing access to healthcare, whether its opponents like it or not. Quite simply, the ACA established the concept of a right to affordable healthcare for the American people. This became clearer to the nation in the 2020 presidential election and the political conversation around healthcare, which was not “whether” the government should be providing access to affordable healthcare, but “how” the government will make that happen. The ACA is becoming more rooted and stable as it proceeds forward, and its longer-range objectives are realized. The law is continuing to improve people’s lives by expanding access to care, while the pilot programs and public–private partnerships it creates are reshaping the healthcare market and stabilizing rising healthcare costs. These results are solidifying the ACA’s standing as the law of the land and codifying the government’s role in the delivery of healthcare with the public and politicians alike. Access to healthcare is part of today’s landscape of benefits that the American people expect the government to guarantee. A survey of Americans conducted by the Commonwealth Fund, The New York Times, and the Harvard T.H. Chan School of Public Health published in October 2019 underscores just how far the expectation of access to affordable health for all is now embedded in the public. The survey broke the pool of respondents into three groups: those who favor Medicare-for-All, those who favor improving the existing ACA, and those who want to replace the ACA with state health plans. When describing the survey results, The New York Times reporter Margot Sanger-Katz wrote, “All three groups showed consensus on some points. Large majorities thought the government should require insurers to continue offering coverage to people with preexisting health conditions. That answer, consistent with some other recent surveys, represents a shift…. Obamacare itself now consistently enjoys majority support in surveys, after years of being under water” [2]. As for the concept of healthcare as a right – a major rallying point for Democrats and the left – the survey shows that that too has been established in the minds of Americans, regardless of their political affiliation. The New York Times reported,

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“There was also relatively broad agreement that healthcare is a right. When asked whether all Americans should have a right to healthcare regardless of their ability to pay, nearly 80 percent of all respondents agreed. Sixty percent of those favoring the Republican health plan believed healthcare was a right, but among those favoring the two Democratic proposals, support exceeded 90 percent.” The ACA is an extraordinary public policy accomplishment that will forever define President Obama’s legacy just as Social Security did for Franklin Delano Roosevelt’s and Medicare for Lyndon Johnson’s. The most important victory in passing the ACA, and the key to its survival in the face of continuing legal and political pressures, is that the people of the United States assume the important role of government in ensuring that they have access to high-quality, affordable healthcare throughout their lifetime. Over the last decade, ACA has become part of the country’s value system as it has become firmly established in the suite of benefits – alongside Social Security, Medicare, and Medicaid – to which the American people contribute for the purpose of ensuring that they, and their fellow citizens, can live well.

References 1. The Commonwealth Fund, The New  York Times, and Harvard T.H.  Chan School of Public Health. Americans’ values and beliefs about national health insurance reform. 2019, cdn1. sph.harvard.edu/wp-­content/uploads/sites/94/2019/10/CMWF-­NYT-­Harvard_Final-­Report_ Oct2019.pdf. 2. Sanger-Katz M. How Americans split on health care: it’s a three-way tie. The New York Times, 30 Oct 2019.

Chapter 3

Patient Protections in the Affordable Care Act Kavita K. Patel

The full title of HR 3590 is the “Patient Protection and Affordable Care Act” (PPACA), an often-forgotten fact since the legislation is usually referred to as “Obamacare” or simply, the “Affordable Care Act” (ACA). There are a number of reasons that the words “Patient Protection” were used in naming the landmark legislation, not the least of which is that a principal goal of the law is to enhance the rights of patients, particularly those who have been overlooked or minimized by the traditional health complex. The roots of these efforts can be traced back decades and continuing through our nation’s efforts in the late twentieth century and early twenty-first century toward the pursuit of universal coverage, finally culminating in many of the provisions in the PPACA/ACA or Obamacare. Many of these patient protections remain incredibly popular to this day, causing difficulties in repealing the ACA (Fig. 3.1). GOP efforts to repeal the ACA have been thwarted in large part because certain provisions, such as the elimination of preexisting condition exclusions, are universally popular among all Americans, regardless of political affiliation. But have these patient protections been effective? What do the data tell us about this aspect of the country’s on-going healthcare experiment? Based on public polling alone, it would certainly appear that the ACA’s patient protection provisions have been successful. However, for a more complete understanding, it is worth visiting where the country started, where we stand today, and the work that still needs to be done to position patients to feel like they are in control of their healthcare, with all the other healthcare stakeholders, particularly payers and providers.

K. K. Patel (*) The Brookings Institution, Washington, DC, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 H. P. Selker (ed.), The Affordable Care Act as a National Experiment, https://doi.org/10.1007/978-3-030-66726-9_3

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Americans’ Opinions Of ACA Provisions Percent who say they have a FAVORABLE opinion of each of the following provisions of the law.

Total

Democrats

Independents

Republicans

Allows young adults to stay on their parents’ Insurance plans until age 26

82%

90%

82%

66%

Creates health insurance exchanges where small businesses and people can shop for insurance and compare prices and benefits

82%

91%

78%

71%

81%

92%

82%

63%

81%

85%

82%

80%

Provides financial help to low- and moderate-income Americans who don’t get insurance through their jobs to help them purchase coverage Gradually closes the Medicare prescription drug “doughnut hole” so people on Medicare will no longer be required to pay the full cost of their medications when they reach the gap Eliminates out-of-pocket costs for many preventive services

79%

88%

78%

68%

Gives states the option of expanding their existing Medicaid program to cover more low-income, uninsured adults

77%

91%

77%

55%

Requires employers with 50 or more employees to pay a fine if they don’t offer health insurance

69%

88%

61%

56%

Prohibits insurance companies from denying coverage because of a person’s medical history

65%

70%

66%

58%

Increases the Medicare payroll tax on earnings for upper-income Americans

65%

77%

69%

42%

NOTE: Some items asked of half sample. SOURCE: KFF Health Tracking Poll (conducted November 14-19, 2018), See topline for full question wording and response options.

KFF HENRY JKAISER FAMILY FOUNDAION

Fig. 3.1  Polling of patient protections in the PPACA

A History of Patients’ Rights Efforts The earliest documentation of patients’ rights efforts comes from the World Health Organization (WHO) in 1948. Formalized in 1948, the Universal Declaration of Human Rights recognizes “the inherent dignity” and the “equal and inalienable rights of all members of the human family.” While this declaration applied to human rights, and not patients’ rights, the concept of patients’ rights was actually formed on the basis of this concept of the person, and the fundamental dignity and equality of all human beings. In other words, how patients’ rights are regarded by physicians, and how places that deliver care such as hospitals and clinics, as well as governments, took shape in large part, thanks to this understanding of the basic rights of the person advanced by the WHO in the mid-twentieth century [1]. Different models of the patient–provider relationships have been developed, and these have informed the particular rights to which patients are entitled. In North America, for example, there are at least four models which depict this relationship: the paternalistic model, the informative model, the interpretive model, and the deliberative model. Each of these suggests different professional obligations of the physician toward the patient. For instance, in the paternalistic model, the best interests of the patient as judged by the clinical expert (usually a physician) are valued above the provision of comprehensive medical information and decision-making power to the patient. The informative model, by contrast, sees the patient as a consumer who is in the best position to judge what is in her own interest, and thus views the physician as chiefly a provider of information. It was out of the tension between a paternalistic and informative model that concepts around rights to data and personal health information developed in the United States. “A Patient’s Bill of Rights” was introduced by the American Hospital Association (AHA) in the early 1970s, and then revised in 1992 [2]. It is a list of 12 expectations

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a patient should have regarding information about their case, communication with their healthcare team, treatment, medical records, and more. The AHA encouraged each hospital in the United States to adapt these 12 rights to fit the needs of their particular patient community. While initially this might have seemed like an admirable plan given the unique aspects of each community and the needs of each patient, it often resulted in numerous versions of patients’ rights documents with a great deal of variability across the country. The next significant step was a legal one. In 2001, Senators Edward Kennedy (D-MA) and John McCain (R-AZ) sponsored the Bipartisan Patient Protection Act (S 1052) with rules for what health maintenance organizations had to cover and provisions for patients to sue if case they were denied necessary care [3]. The bill narrowly passed the Senate, was amended by the House, and returned to the Senate where it failed to secure sufficient votes, despite bipartisan support from its sponsors. There were many reasons for its demise, the greatest of which was opposition by health insurance industry coalitions. Between 2001 and the passage of ACA in 2010, there were other attempts at patient protections, including the Emergency Medical Treatment and Labor Act (EMTALA), which requires anyone coming to an emergency department to be stabilized and treated, regardless of their insurance status or ability to pay, and the Genetic Nondiscrimination Act (GINA), which prohibits discrimination of care or access based on genetic information, a right which was likewise echoed and supported by the WHO and other global rights organizations [4, 5]. In addition to the American Hospital Association’s “Patient’s Bill of Rights,” laws like these afforded some protections but they paled in comparison to the sweeping legislation of the ACA. Some of the hurdles in accomplishing the inclusion of rights to protect patients had to do with an evolving landscape of stakeholders, political interests, and opportunities to introduce legislation. On the first hurdle, a growing number of disease-­ specific organizations have proliferated that have been important contributors to advancing disease-specific issues but have also made it difficult to arrive at a more universal definition of patients’ rights. Political interests also created a tension that made achieving significant patients’ rights difficult, primarily because of the consequences of such protections, including the impact on institutions and/or providers to implement such protections. For example, protecting out-of-pocket costs would likely impact hospitals and providers who would need to recoup those costs in some other way. Protection of a patients’ genetic information requires health technology investments that might strain budgets. It was not until the momentum around health access and cost in the debate leading up to passage of the ACA that clarity around patient protections was able to be codified in legislation.

Overview of Patient Protections in the ACA One of the most popular patients’ rights provisions in the ACA relates to practices of health insurance companies: the prohibition of excluding patients from coverage due to preexisting conditions. The debate around this provision reached a fever

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pitch in the months leading to the passage of the ACA when patients with a history of acne or an episodic illness decades ago began explaining how they were denied health insurance coverage because of “preexisting conditions.” A series of news articles highlighting some of the more egregious cases gave added momentum to the desire to improve patient protections in the ACA [6]. Other provisions that are just as popular with the public and policy experts are explicitly related to health insurance company practices, and include: • • • • • •

Prohibition of denying insurance coverage to pregnant women Prohibition of lifetime limits in coverage Prohibition of annual limits in coverage Allowing young adults to stay on parents’ coverage until the age of 26 Prohibition of health insurance companies charging more for sicker patients Ban on rescissions (a retroactive termination of health coverage)

Additional patient-facing provisions involved easing the administrative burden of healthcare, including simplifying the explanation of benefits that accompany insurance plans, as well as additional simplifications around patients’ notices and privacy rights.

 valuating Whether the ACA’s Patient Protections Have Been E Effective and What Areas Need Improvement Few studies have examined to what extent the ACA’s patient protection provisions have been effective. There are a number of reasons for this, including competing priorities for researchers at a time when health services research funding has declined, the reality that disease-specific groups and priorities can often override an interest in looking at such provisions more broadly, a desire to initially focus on the effects of the coverage provisions of the ACA, and what we might assume was a unanimous acceptance that all of the ACA’s patient protections were a step in the right direction, simply by improving the lives of hundreds of millions of Americans in the following ways [7]: • Elimination of preexisting condition barriers has been attributed to an additional 26.7 million persons enrolling in healthcare from 2010 to 2017. • Inclusion of children under age 26 on parents’ policies is believed to have enabled up to 17 million young adults to have insurance, which in turn has led to increased life expectancy and relief of morbidity and mortality that is commonly associated with a lack of insurance or regular healthcare. • The elimination of lifetime limits is believed to have resulted in an additional access points for health services; patients who would normally forgo any sort of specialized healthcare or consider rationing their own care were finally able to obtain incredibly costly treatments such as organ transplants or cancer therapy without fear of personal bankruptcy.

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But perhaps a more important question is this: Have the provisions in the ACA fully protected patients from unintended consequences or potentially narrowed disparities, thus ensuring equitable access, coverage, treatment, and ultimately health? Without a true randomized trial, it is difficult to identify whether one protection or the lack of a set of protections can be linked to affect a person’s health.  However, in thinking about the multifactorial nature of what determines health, we know that certainly the presence or absence of certain design elements in the structure of healthcare can be contributors (or conversely, detractors). A very concrete, well-­published example of this is from the 1982 RAND Health Insurance Experiment, which studied how cost sharing impacts healthcare use [8]. In the RAND Health Insurance Experiment, copays, even in nominal dollar amounts, resulted in people neglecting needed care in certain cases. There are parallels to the post-ACA environment, particularly the absence of protections for loopholes or ways to work around legislative protections, such as the 2019 debate around surprise billing or the more global issues of out-of-pocket costs. The following are some examples of attempts to continue the ability to extend, improve, or create important legislative and regulatory precedents to continue to protect patients and their families: 1. Value-based insurance design (VBID) for health insurance benefits. Advanced by Professors Michael Chernew and Mark Fendrick, this concept considers structural changes to health insurance benefits to allow for little or no barriers to “high-value” services, care for chronic conditions along with the necessary medications, etc. [9]. In 2017, CMS introduced a Medicare Advantage track for Value-Based Insurance Design (VBID), but it has not had as much traction as would be expected in large part due to a combination of poor awareness and a perception of administrative complexity (e.g., how would a payer understand that a visit is for a high-value clinical service versus what might be considered a low-value service). It does offer a number of protective benefits for patients, such as protecting patients from out-of-pocket cost exposure and also minimizing unnecessary care by identifying services that patients should not receive (routine Vitamin D blood testing is one example), and should be considered something to augment the work done in the ACA to date. 2. Protections against rising drug prices. While there are protections around maximums for services or protections for out-of-pocket costs for physician services/ hospitalizations, there are no such protections for rising drug prices. In 2019, the Trump Administration and the committee of jurisdiction in the US Senate (the Senate Finance Committee) along with the House of Representatives put forward significant drug pricing reform legislation, but unfortunately, it faces great obstacles to passage – mostly because each entity (the White House, Senate, and House) has its own approach to achieving drug pricing reforms. Major differences include dramatically different perspectives regarding drug price affordability along with desires to reform government-funded drug programs such as Medicare Part D. Key aspects of proposed legislation include protections against drug price increases, as well as pressure to push for more transparency in costs

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and in the complex process of how consumers end up paying a certain amount for their medications [10]. 3. Protections against the practice of “surprise billing.” Surprise billing, as it is commonly referred to, is the practice of billing a patient for services provided by a clinician or at a facility that is technically considered out-of-network from the standpoint of their insurance benefits. For example, surprise billing can happen when a patient visits an emergency room at a hospital that is covered as an in-­ network benefit but is treated by an emergency medicine physician employed by a group that contracts with the hospital not considered an in-network provider by the patient’s insurance company. The patient then, usually unbeknownst to them, receives a bill weeks  – sometimes months  – later for a much larger fee than expected due to the out-of-network services. In the past year, as more and more alarming patients’ stories have presented in the press, the number of healthcare proposals introduced to Congress has also risen. Although President Donald Trump expressed support to protect patients from unexpected healthcare bills, unifying partisan lines enough to land on a uniform approach is, not surprisingly, proving a cumbersome barrier to effecting adequate change on state and national levels. Furthermore, as we enter a new election year, discussions and heated debates around healthcare have gained speed, with every candidate and stakeholder armed with a plethora of stories of patients and families whose unexpected life events have left them with equally unexpected – “surprise” – healthcare bills, oftentimes leading to catastrophic health expenditures [11].

A Path Toward More Comprehensive Protections In summary, while there has been significant progress in patients’ rights, largely catapulted by achievements in the ACA, there is still more work to be done. Certainly, VBID, legislation to stem rising drug prices, and proposals to end surprise billing offer paths toward more comprehensive protections, but there is still very little consensus around how best to promulgate these ideas in a comprehensive way. More work in the form of health services research and pragmatic clinical trials to better understand the impact of these provisions on health outcomes should be a priority for funding agencies such as the Agency for Health Care Policy and Research. States that are pursuing their own health reform should also look to extending patient protection as a way to curb costs and improve the delivery of healthcare. Schools of business, medicine, and policy would benefit from prioritizing patient protection research to further consider how best to create interdisciplinary policies and measurement standards, which benefit society overall from a number of perspectives – cost, quality, and patient’s rights. The number of patient protections in the ACA was unprecedented for any single piece of legislation, and even though, at times, these provisions appear to be among the most undervalued aspects of the law, they remain incredibly popular with

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Americans. After all, the words “Patient Protection” may have been lost when referencing the ACA, but in the years to come, they are likely to have the greatest impact.

References 1. Patients’ rights. World Health Organization, World Health Organization, 7 Dec 2010, www. who.int/genomics/public/patientrights/en/. 2. AHA patient’s bill of rights. APRA, 29 Oct 2019. www.americanpatient.org/aha-­patients-­bill-­ of-­rights/. 3. Roberts and Pat. S.1072 – 107th congress (2001–2002): a bill to extend eligibility for loan deficiency payments and payments in lieu of loan deficiency payments. Congress.gov, 20 June 2001. www.congress.gov/bill/107th-­congress/senate-­bill/1072. 4. Emergency Medical Treatment & Labor Act (EMTALA). CMS. www.cms.gov/Regulations-­ and-­Guidance/Legislation/EMTALA. 5. Genetic information discrimination. Genetic Discrimination. www.eeoc.gov/laws/types/ genetic.cfm. 6. Rosenthal E. We all have pre-existing conditions. The New York Times, 29 May 2017. www. nytimes.com/2017/05/29/opinion/pre-­existing-­conditions-­health-­care-­bill.html#. 7. Health Insurance Coverage and the Affordable Care Act. ASPE, 21 Feb 2017. aspe.hhs.gov/ basic-­report/health-­insurance-­coverage-­and-­affordable-­care-­act-­september-­2015. 8. RAND health insurance experiment. RAND Corporation. www.rand.org/health-­care/projects/ hie.html. 9. Chernew M, Fendrick AM. Value and increased cost sharing in the American health care system. Health Serv Res. 2008;43(2):451–7. https://doi.org/10.1111/j.1475-­6773.2008.00847.x. 10. Wynne B, Llamas A. New legislation to control drug prices: how do house and senate bills compare?” Commonwealth Fund, 24 Oct 2019. www.commonwealthfund.org/blog/2019/ new-­legislation-­control-­drug-­prices-­how-­do-­house-­and-­senate-­bills-­compare. 11. Surprise billing: choose patients over profits. Health Affairs Blog, 12 Aug 2019. https://doi. org/10.1377/hblog20190808.585050.

Chapter 4

Beyond Coverage and Controversy: The ACA’s Distinctly American Approach to Healthcare Coverage and Reform Shawn Maree Bishop

The ACA’s Legislative History The number of Americans who lacked health insurance coverage remained high prior to passage of the Affordable Care Act (ACA) of 2010 [1]. By 2016, over 20 million people gained coverage as a result of the law [2]. A distinct feature of the ACA is that two pieces of legislation make the whole: the first is the Patient Protection and Affordable Care Act (PPACA); the second is the health-related provisions of the Health Care and Education Reconciliation Act (HCERA).1 The latter is a budget reconciliation bill that amended a handful of provisions of the Senatepassed version of PPACA. Combined, these two bills make up the universe of legislative provisions of the ACA. This two-step approach was a novel approach taken by Democrats after bipartisan negotiations in the Senate came to an impasse and a special election in Massachusetts (held to fill the Senate seat vacated by the death of Senator Edward Kennedy) removed the Democrats’ 60-vote super-­majority in the Senate. The tactic at once enabled Democrats to bypass Republicans’ use of the Senate filibuster to block bills from proceeding to a floor vote. By narrowly modifying the Senate-passed version of PPACA, the HCERA reconciliation bill was instrumental in securing full passage of both laws by the House of Representatives. Although approved by the Senate parliamentarian, the use of a reconciliation bill to amend parts of PPACA was a bold move by Democrats. On one hand, it showed the depth of Democrats’ determination and commitment to universal health coverage in the face of staunch Republican opposition. On the other hand, it enraged Republicans who saw the tactic as a misuse of Senate procedure to swerve around their votes on a topic of national importance. Much has been stated about the use of  P.L. 111-48 and P.L. 111-52.

1

S. M. Bishop (*) SB Health Policy Consulting, LLC, Berwyn Heights, MD, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 H. P. Selker (ed.), The Affordable Care Act as a National Experiment, https://doi.org/10.1007/978-3-030-66726-9_4

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reconciliation as a procedural shortcut. Republicans argue that Democrats could have avoided much of the outrage and acrimony over the ACA if they had used a typical 60-vote approach to passage. Democrats argued that Republicans had used the same shortcut to enact the Bush-era tax cuts in 2001 and 2003 – legislation more sweeping than the ACA in terms of budget and economic impact [3]. Given Republicans’ prior use of reconciliation to enact long-sought tax cuts, Democrats argued that opposing its use for health reform was simply a tactic to block progress toward their long-standing goal of universal healthcare coverage. Despite controversy over its use in passing the ACA, proposals to use budget reconciliation as a tool to enact major health reform have resurfaced. In an ironic twist, Republicans used the same budget reconciliation process they railed against with respect to the ACA in their attempt to pass the American Health Care Act of 2017 (AHCA), which was healthcare reform legislation intended to partially repeal and replace the ACA and that President Trump promised to sign into law [4]. This reconciliation bill would have gutted funding for the ACA’s insurance coverage expansion and other measures and given states a capped block grant to pursue less comprehensive forms of health coverage. In addition, Senator Elizabeth Warren (D-MA) proposed the use of a reconciliation bill as part of her healthcare platform for her 2020 presidential bid [5]. Her plan proposed to use the reconciliation process to expand coverage for individuals by adding a public insurance option to the ACA health insurance marketplace in the years before a Medicare-for-all system could be enacted. These recent proposals suggest that the shortcut process might continue to be a distinctive feature of pursuits to modify health coverage in the United States. Another notable feature of the ACA is its scope. The law comprises ten titles (or policy areas), approximately 456 provisions, and 907 pages of consolidated print. Figure  4.1 shows the number of provisions and consolidated pages in each title.

Vital Statistics of the Affordable Care Act (ACA) ACA is combination of two pieces of legislation 1) Patient Protection and Affordable Care Act (PPACA) • Passed by the Senate in December 2009 and by the House in March 2010

1) Health Care and Education Reconciliation Act of 2020 (HCERA) which modified PPACA • Passed by the House in March 2010 and by the Senate in March 2010

Comprises 10 titles, 456 provisions, and 907 pages of text

Fig. 4.1  Vital Statistics of the ACA

200 180 160 140 120 100 80 60 40 20 0

Provisions Pages

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A quick tour of major policy areas within each title demonstrates the law’s breadth: • Titles I and II expand health insurance coverage through private insurers and Medicaid and reform private health insurance practices that created barriers to obtaining health coverage (e.g., prohibiting denial of coverage of individuals with preexisting conditions, charging women higher premiums than men, and charging elderly consumers more than three times the premiums offered to younger people). • Title III reduces growth in Medicare payment to providers and health plans and allows Medicare and Medicaid to test new initiatives for providers and health plans to deliver safer, more coordinated, and efficient care to patients. • Titles IV, V, and VI establish and expand public health programs to help states and communities promote wellness and prevent disease; extend federal programs for training medical professionals (including physicians, nurses, and nurse practitioners); and expand programs to reduce fraud and abuse in Medicare and Medicaid, respectively. • Title VII creates a new regulatory pathway for the approval of biosimilar versions of biologic drugs, which use living organisms to treat diseases such as cancer. • Title VIII establishes new long-term care insurance options (repealed by Congress in 2013). • Title IX establishes new excise taxes on health-related products (such as medical devices) and raises Medicare payroll taxes on individuals with higher incomes to help cover costs of expanding coverage under the bill. • Title X makes technical and policy-related amendments to provisions in Titles I–IX. Looking across the ACA’s titles, the expansion of health insurance coverage is not the most prominent feature of the law’s text, although it attracted the most public attention and scrutiny. By far, policies to improve the value of healthcare (cost and quality) in the United States comprise the bulk of the law. Almost 70% of the ACA’s provisions address different aspects of the delivery of health care and value of care delivered in the American healthcare system (Fig. 4.2). While the sheer volume of provisions of any law does not equate to public policy impact, in the case of the ACA, it reflects Congress’ overarching intent to improve the safety, quality, coordination,

Delivery System Reform Provisions Comprise Bulk of ACA When grouped by major theme, provisions addressing delivery system reform comprise bulk of the health reform bill Percent of ACA Provisons 4%

Percent of ACA Pages 4%

Coverage (Titles 1-2)

70%

Coverage (Titles 1-2) 28%

26% Delivery System Reform (Titles 3-8, 10)

68%

Revenue/Taxes (Title 9)

Fig. 4.2  Delivery System Reform Provisions Are Bulk of the ACA

Delivery System Reform (Titles 3-8, 10) Revenue/Taxes (Title 9)

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and efficiency of healthcare, and the complexity of doing so. A broad swath of provisions establishes new payment incentives and tools for providers, new programs to train the healthcare workforce, new approaches to delivering preventive care for chronic disease, new research about what works in medicine, and dozens of other reforms. While many of ACA’s reforms affecting the quality of healthcare are initiated through federal health programs, that is, Medicare and Medicaid, Congress intended the ACA reforms to influence the delivery of care to all patients in the United States, including care received by over 160 million individuals with health coverage provided by employers [6].

The ACA Approach to Healthcare Reform The ACA’s approach to improving the value of healthcare delivered in the United States is remarkable compared to prior federal laws that sought the same goals. The law includes numerous provisions that seek to lower the cost of healthcare per person primarily through improvements in the safety and quality of care delivered. The formula in prior laws for increasing the value of care was either to reduce reimbursements to providers in order to lower health costs or to authorize programs to measure and improve the quality of healthcare delivered. Key provisions in the ACA tie these concepts of cost and quality together for the first time. For example, Medicare payments to hospitals are decreased if patients are readmitted within 30 days or acquire infections. Payments are increased if the opposite occurs. As a result, hospitals are financially rewarded if they find ways to keep patients safer (according to these measures) and spending reduced if they do not. In either case, Medicare spending in theory would be reduced by focusing on safer, higher quality care. If successful, the value of hospital care would improve by using financial incentives to deliver better care. This experiment has proved fruitful: improved outcomes have been observed since ACA’s passage, such as slower growth in Medicare spending, reduced acute-care hospital spending, and lower acute-care hospital readmissions and infections [7–10]. These ACA policies demonstrate a distinctive approach to healthcare value taken by the ACA – that is, lower the cost of healthcare through new financial incentives to deliver care that is safer and higher quality. Another distinct feature of the ACA is inclusion of policies to make improvements in healthcare self-sustaining. Rather than rely on policies and programs fixed in statute, the ACA includes new authority for value improvement to be carried out and evolved by federal agencies over time. One ACA provision established the Center for Medicare and Medicaid Innovation (CMMI) within the Center for Medicare and Medicaid Services – the federal agency that regulates both federal programs.2 The mission of CMMI is to fund promising innovations in paying for and delivering care in ways that could lead to better value through lower cost or higher quality, or both. Congress provided $10 billion to CMMI every ten years for  Section 3021 of the Patient Protection and Affordable Care Act.

2

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testing and evaluating promising initiatives without the need to seek further action by Congress to implement them on a permanent basis. What is unique about CMMI is that it makes experimentation of ideas for improving the cost and quality of care stable, fiscally sustained, and not dependent on subsequent decisions from Congress made through the political process. Another ACA provision designed to make the evidence base of health care improvement care self-sustaining established the Patient-Centered Outcomes Research Institute (PCORI), a nongovernmental, nonprofit organization whose mission is to improve the evidence base for healthcare decision-making between patients and their doctors and for negotiations between providers and payers.3 The mission of PCORI is to fund robust, independent research comparing the clinical effectiveness of medical treatments, goods and services, and health system designs. At the time of ACA’s passage, conducting comparative effectiveness research was not a new endeavor in the US. Private payers such as Kaiser Permanente and Blue Cross Blue Shield plans, health systems such as the Cleveland Clinic, as well as federal agencies like the Agency for Healthcare Research and Quality and the National Institutes of Health, had undertaken this type of research for years. What PCORI brings to these efforts is a multistakeholder governance structure (which includes patients, payers, providers, researchers, and manufacturers) that develops an agenda for evaluating clinical effectiveness and guaranteed federal funding of $4 billion over ten  years. PCORI’s agenda is transparent, and, unlike efforts funded by private organization, all of its research findings are available to the public at no cost. Congress’ vision for PCORI was that its output of research would be a publicly available resource of evidence of how well a medical treatment or system of care works or does not work. Unlike CMMI – the new innovation arm of Medicare and Medicaid– Congress did not initially make PCORI permanent. Congress established the entity for ten  years so it would be re-evaluated at the end of its first decade. Although critics viewed PCORI’s early years as getting off to a slow start and largely avoiding research in controversial areas like new therapies where evidence is lacking, it funded over 700 new research studies in key areas of healthcare decision-­making, making enough of a mark by 2019 for Congress to extend authorization of the organization for another ten years with minimal modification to its original design.4 PCORI remains a distinct feature of the ACA and the enterprise of expanding the evidencebase of health care through comparative effectiveness research in the United States.

 ooking Forward: US Healthcare Coverage Compared L to Other Developed Nations The ACA includes a number of policies that work together to expand access to health insurance coverage and higher value healthcare  in the United States [6]. Although several provisions of the law set up novel programs and entities, the  Section 6301 of the Patient Protection and Affordable Care Act.  Section 104, Title I, Division N of the Further Consolidated Appropriations Act, 2020.

3 4

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provisions expanding health coverage were considered incremental in terms of adding features to the US health system. Coverage expansion focused on the portion of the American population with no source of affordable insurance (18% in 2010) and used existing structures of private health insurance, federal tax subsidies, and Medicaid to reduce the number of uninsured [6]. While Congress contemplated numerous ways to broaden coverage, most were set aside because they were either too narrow (e.g., covered children only) or too far-reaching (e.g., reduced tax subsidies for employer-sponsored health insurance) to achieve political consensus. Despite ACA’s substantial coverage gains, researchers continue to point out that the United States remains the only high-income country without universal healthcare coverage [11]. In 2019, almost 30 million Americans remained uninsured [12]. Lack of universal coverage is problematic because it results in more limited access to comprehensive and affordable health care [13, 14]. Recent surveys and international comparisons supported by the Commonwealth Fund show that one of three US patients—including those with health insurance—skip needed care or treatments because of cost [15]. By comparison, fewer than one of ten patients in the United Kingdom, Germany, the Netherlands, or Sweden report skipping needed care or treatments because of their cost [15]. These international comparisons also show that high-income countries in Europe provide universal coverage through a national system [11]. The systems range widely in how they are financed and structured. Sweden and the United Kingdom have tax-funded national healthcare delivery systems, whereas Germany, the Netherlands, and Switzerland are more like the United States is relying on private-­ insurance-­based systems. A difference between these latter countries and the United States, however, is that full regulatory control of private insurance is given to regional and local entities. By contrast, the US health system is dependent on a complex, largely  uncoordinated system of federal and state health programs and health benefits provided by private employers. All countries with universal health coverage provide basic benefits that cover physician care, hospital care, and diagnostics, while coverage for prescription drugs and mental healthcare differs widely [11]. In the United States, benefits covered under ACA marketplace coverage for individuals, and separately under Medicare’s traditional fee-for-service program, are comprehensive and uniform within each system. Health benefits made available under other sources of coverage in the United States, such as Medicaid, Medicare Advantage plans, and employer-­ sponsored coverage, are comprehensive but not necessarily uniform with ACA or Medicare. Thus, unlike countries with universal coverage, healthcare benefits in the United States continue to vary widely across sources of coverage. These same international comparisons also show a striking difference between the United States and countries with universal health coverage in terms of patient cost-sharing [11]. Other countries offer more protective health benefits than the United States [15]. For example, in the United Kingdom, Germany, and the Netherlands, patients have no out-of-pocket costs when they see a primary care doctor. Some countries charge patients low cost-sharing for each service and cap total out-of-pocket costs when they receive care. In Germany, patient cost-sharing is

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capped at 2% of annual household income and 1% for chronically ill patients. Moreover, other high-income countries charge patients low, fixed copayments rather than coinsurance and high deductibles that are common features of coverage in the United States. Medicare coverage requires patients to pay 20% of the cost of physician care, including for services delivered by primary care doctors and specialists such as surgeons. ACA coverage for individuals allows for annual deductibles to be as high as $15,800 for a family in 2019. Lower cost-sharing for patients is an important feature of health coverage because it translates into better access to care. If US patients with health coverage cannot afford the cost-sharing required by their coverage, then healthcare is not accessible when they need it. Thus, universal coverage is a necessary but not sufficient condition to ensuring access to healthcare.

Can Policymakers Build on ACA’s Progress? Expanding health insurance coverage to millions of Americans has been a hallmark of the ACA. Other features of the law, such as its legislative history and approach to improving the value of healthcare, make it distinct from prior federal laws. Despite the law’s success and unique contours, gaps in coverage and financial burdens of patient cost-sharing remain for many Americans. Most other high-income countries have achieved both universal coverage and patient protection from high financial burdens when accessing healthcare. The ACA has been a vehicle for progress over the last ten years, and it demonstrates that US policymakers can move even closer to the goal of universal coverage and make cost-sharing even more affordable for patients, while deploying a distinctly American approach to achieving these ends.

References 1. Cohen RA, Terlizzi EP, Martinez ME. Health insurance coverage: early release of estimates from the National Health Insurance, 2018. Atlanta: Centers for Disease Control; 2019. 2. Garrett B, Gangopadhyaya A.  Who gained health insurance coverage under the ACA and where do they live? Urban Institute: Washington; 2016. 3. Joint Committee on Taxation. Estimates of federal tax expenditures for fiscal years 2011–2015. Washington: Joint Committee on Taxation; 2012. 4. Ku L, Steinmetz E, Brantley E, Holla N, Bruen B. The American Health Care Act: economic and employment consequences for states. New York: Commonwealth Fund; 2017. 5. Warren E.  My first term plan for reducing health care costs in American and transition to Medicare for all. Warren Democrats. [Online] 2019. https://elizabethwarren.com/plans/ m4a-­transition. 6. Baucus M.  Chairman’s news. U.S.  Senate Committee on Finance. [Online] 12 Nov 2008. https://www.finance.senate.gov/chairmans-­news/baucus-­calls-­health-­care-­reform-­central-­to­restoring-­americas-­economy. 7. Levine M, Buntin M. Why has growth in spending for FFS Medicare slowed? Washington: Congressional Budget Office; 2013.

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8. Hartman M, Martin A, Espinosa N, Catlin A. National Health Care Spending in 2016: spending and enrollment growth slow after initial coverage expansion: Health Affairs; 2016. 9. MedPAC. A data book: health care spending and the Medicare program. Washington: Medicare Payment Advisory Commission; 2017. 10. Zuckerman R, Sheingold S, Orav J, Ruhter J, Epstein A. Readmissions, observation, and the hospital readmissions reduction program. Boston: New England Journal of Medicine; 2016. 11. Glied S, Black M, Lauerman W, Snowden S Considering “Single Payer” proposals in the U.S.: lessons from abroad. The Commonwealth Fund. [Online] 11 Apr 2019. https://www.commonwealthfund.org/publications/2019/apr/considering-­single-­payer-­proposals-­lessons-­from-­abroad. 12. Gunja M, Collins S.  Who are the remaining uninsured, and why do they lack coverage? The Commonwealth Fund. [Online] August 28, 2019. https://www.commonwealthfund.org/ publications/issue-­briefs/2019/aug/who-­are-­remaining-­uninsured-­and-­why-­do-­they-­lack­coverage. 13. Dorn S. Uninsured and dying because of it: updating the institute of medicine analysis on the impact of uninsurance on mortality. The Urban Institute. [Online] 2008. http://www.urban.org/ publications/411588.html. 14. Avanian JZ. Unmet health needs of uninsured adults in the United States. J Am Med Assoc. 2000:2061–9. 15. Tikkanen R, Osborn R. Does the US ration health care? The Commonwealth Fund. [Online] 11 July 2019. https://www.commonwealthfund.org/blog/2019/does-­united-­states-­ration-­health-­care.

Chapter 5

Medicaid Expansion and Insurance Reform Under the Affordable Care Act: The New Federalism of Health Policy or the Same Old Same Old? Anya Rader Wallack

The devolution of power to the states under welfare reform in the 1990s was dubbed “the new federalism.” This effort, launched under the Clinton administration, converted Aid for Families with Dependent Children (AFDC), an entitlement program governed almost wholly by federal rules, to Temporary Aid for Needy Families (TANF), which included a block grant for states and time-limited benefits for beneficiaries, with greater state discretion about program management [1]. Ultimately this shift did not prove to be as seismic as predicted, but it was significant. As Kondratas and colleagues observed in 1998: Although the devolution that finally occurred in 1996 was much more limited than the preceding political talk might have led one to predict, encompassing only AFDC and a number of child care programs, the federal government made substantial changes in multiple programs and created new initiatives… Nonetheless, devolution does not go as far as political rhetoric sometimes suggests. The TANF block grant established a new set of program standards at the federal level. Federal initiatives and centralization have increased in child support enforcement and health insurance industry regulation. Also, Food Stamps, Supplemental Security Income (SSI), and the Earned Income Tax Credit remain federal income-support programs, although there is some new flexibility for states in Food Stamps. The federal presence in social programs continues to loom large. [1]

This chapter will explore whether the rejiggered state/federal responsibilities that resulted from the Patient Protection and Affordable Care Act of 2010 (PPACA, or the ACA) are similar to, or fundamentally different from, the shift from AFDC to TANF. Did the ACA dramatically shift state and federal roles, marginally continue devolution of responsibility to states, or reverse the pattern of devolution with a federal take-back or brand-new assertion of power? To examine this question, we will look at two specific policy areas: Medicaid and insurance regulation.

A. R. Wallack (*) Center for Evidence Synthesis in Health, Brown University School of Public Health, Providence, RI, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 H. P. Selker (ed.), The Affordable Care Act as a National Experiment, https://doi.org/10.1007/978-3-030-66726-9_5

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Federalism in the United States is an ever-changing, push-pull landscape. The respective roles of the states and the federal government have evolved over time in most policy areas, with each level of government assuming more or less scope and influence. Federal law defines and redefines the relationship through statute and regulation. States test, through federally conferred program waivers and state law, the limits of federal law. And states avail themselves, to a greater or lesser degree, of flexibility afforded under federal law. States also step in to address needs and challenges left unaddressed by the federal government, sometimes creating a foundation for future, nationwide policy. The courts, including the Supreme Court, have been central arbiters of this relationship throughout our country’s history. Health policy is no exception. Others have documented numerous examples of how federalism, and the struggle over state/federal control, have been at the core of American health policy throughout our history [2–4]. The roles of states and the federal government in meeting the healthcare needs of the American population have evolved since at least the turn of the twentieth century. Most of this evolution has been characterized by an expansion of the federal role, but at all times, a role has been reserved for states, and the state role has run the gamut from implementer of minimum federal requirements to innovator within federal constraints (and with federal approval) to challenger of federal limitations. The ACA continued this evolution. In particular, the ACA effected an expansion of the federal role in oversight of health insurance and provision of health insurance coverage, the likes of which this country had not seen since the 1960s. These two policy thrusts of the ACA—health insurance regulation and health insurance coverage expansion—offer very different case studies. Both started with the same federal intent: to greatly expand the federal role and establish new mandates on states. But each could be viewed as major—a considerable federal encroachment on state authority—or they could be viewed as just another in a series of incremental expansions of federal policy into waters well tested by states, consistent with the longstanding relationship between the two levels of American government.

A Brief History of Federalism in US Health Policy Prior to World War II, state and local governments were much more active in shaping the US healthcare system than the federal government. States and localities took the lead in providing a semblance of a healthcare safety net for some of the very neediest of their citizens, allocating healthcare resources and improving public health through infrastructure investments. After World War II, the federal government became more involved in health policy. Congress enacted the Hill-Burton program, which supported hospital construction and modernization, and created the National Institutes of Health to support medical research. In the Social Security Act of 1950, Congress created a precursor to the Medicaid program, funding care for some welfare recipients. In 1960, this

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funding was expanded through the Kerr-Mills Act, which financed care for poor, elderly, and disabled Americans. Then, of course, there was the Social Security Act of 1965, which established both Medicare (a wholly federal program) and Medicaid (a shared state-federal endeavor allowing for much state-to-state variation). This was the biggest federal foray into health policy in US history, and in some sense institutionalized the debate about the primacy of states versus the federal government. The definitive answer, under federal law, was “it depends,” with roles reserved for both levels of government, and some roles overlapping or conflicting. Building on this platform of role ambiguity, the federal government continued to assert itself as the locus of some health policy leadership in the ensuing decades. In the 1980s, Congress intervened to address healthcare costs and provider payments. In the 70s, 80s, and 90s, Congress expanded the requirements placed on states through the Medicaid program. The reach of the federal Medicare program also was expanded over time, most notably to individuals with kidney failure. At the same time, however, important authority was reserved for states. States got to choose whether to cover some categories of people and services, and what to pay providers. States also had the opportunity to apply for waivers from federal Medicaid rules to structure the program in creative ways. The result was wide variation in who is covered, what services are covered, provider payments and, some would say, resulting health outcomes [5], from state-to-state. Thus, Medicaid has remained a prime arena for defining shared federal-state responsibility, for states to test federal limits, and for states to resist federal requirements and constraints. The scope of the federal government in defining program requirements has expanded over time. At the same time, states have pushed the limits of the program through optional coverage and waivers and have resisted the expansion of federal requirements at every turn [5]. State authority over health insurance regulation has been somewhat more clear-­ cut throughout the nation’s history, but not entirely lacking ambiguity. For much of our history, intrastate supremacy in health insurance regulation was thought to be impliedly protected by the Interstate Commerce Clause of the US Constitution. This was eroded somewhat by the McCarren Ferguson Act in 1945, which exempts the business of insurance from most federal regulation, including federal antitrust laws to a limited extent. The Employee Retirement Income Security Act (ERISA) was a more significant encroachment. ERISA carved out self-insured, employer-based health insurance for federal regulation. The argument in favor of this policy is that large, multistate companies should have a uniform, nationwide system of regulation. The reality is that this has resulted in more than half of the health insurance market being exempted from state regulation [6]. Nonetheless, the primary locus of health insurance regulation has remained the states, with a few notable exceptions. In 1996, the Health Insurance Portability and Accountability Act (HIPAA) established federal standards for the portability of insurance coverage when employees leave an employer. Also, in 1996, the Mental Health Parity Act created nationwide requirements for how health insurers treat mental health services. This was expanded in 2008 through a rider to the Troubled Asset Relief Program (TARP) legislation.

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Notwithstanding these federal encroachments on formerly state policy turf, defining health insurance market rules and implementing federal health insurance requirements for the fully insured (as opposed to self-insured) market has continued to be the purview of the states. It is against this backdrop that the ACA was developed and refined. The federal government is increasingly involved in mandating policy in these areas, but significant discretion is reserved for states, and that discretion is reflected in the crazy quilt of policy variation across the country. Historically, states were implementers of federal policy related to both Medicaid and health insurance oversight. But states also had an independent role in choosing to expand Medicaid, either within standard federal allowances or through a waiver. States also could choose to regulate health insurance more heavily than was the norm, and in doing so, they functioned as the testing grounds for eventual federal policy. New York and Vermont, for example, were early leaders in applying guaranteed issue and community rating requirements to their health insurance markets and became models for future nation-wide policy.

The ACA and Health Insurance Coverage The ACA effected an expansion of insurance coverage on two fronts: it expanded Medicaid coverage to all Americans below 138% of the federal poverty level, without regard to the kind of categorical limitations previously placed on Medicaid coverage; and it provided new federal tax credits to people who signed up for coverage through either state Exchanges or the federal Exchange. The Medicaid expansion, as originally legislated, clearly expanded the scope of federal policy. Previously, states had some latitude with regard to the categories of people covered under the program, and significant latitude regarding the income levels covered within those categories. The ACA created a new national floor for coverage without regard to categorical eligibility: all Americans with incomes below 138% of poverty would be eligible. As one pair of scholars observed: The Medicaid expansion that the ACA enacted did not take Medicaid away from the states but did nationalize the program in the important sense that it mandated eligibility expansion to populations that prior to the ACA had been covered only at a state’s option. [7]

Subsequently, the Supreme Court ruled that the federal government could not compel states to undertake the Medicaid expansion. The result is that 36 (mostly Democratic-controlled) states and the District of Columbia expanded Medicaid under the new law to date, and 14 (mostly Republican-controlled states) did not. This meant that the Medicaid expansion, while conceived of as a nationwide policy, fell back to a more traditional federalist relationship—the federal government made an opportunity available, and states had a choice as to whether to avail themselves or not. This was essentially a continuation of previous Medicaid expansion policy, and an exacerbation of variation across the states, with the more “progressive” states (which generally also tend to be those with higher per capita incomes) taking

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advantage of the expansion opportunity, while the states that historically had been less expansive in their programs turned it down. The Medicaid expansion is a clear illustration of the strength of federal policymaking, even within a federalist relationship. Without (ultimately) mandating the Medicaid expansion, the federal government enticed or enabled the vast majority of states to expand eligibility. The result is that nearly 15 million more people are on the program today, compared to 2013 [8]. The ACA also allowed for additional variation across state Medicaid programs through federally approved waivers. While the Section 1115 demonstration waiver has been a long-standing and well-used mechanism for states to deviate from federal Medicaid requirements, the ACA expanded 1115 to add new opportunities through Designated State Health Program (DSHP) and Delivery System Reform Incentive Payment (DSRIP) waivers. These waivers allowed for creative financing at the state level (in the case of DSHPs) and creative provider payment [9] and delivery system reform (in the case of DSRIPs). Perhaps not surprisingly, DSHPs has been discontinued, as the Centers for Medicare and Medicaid Services (CMS) found it difficult to justify providing federal matching funds for state expenditures under those waivers. On the other hand, DSRIPs, which essentially promote a central policy agenda of the federal government (payment and delivery system reform and so-called value-based purchasing), continue. Expansion of coverage through the Exchanges took a more traditional federalist form from the get-go. Federal tax credits were made available for eligible Americans regardless of where they live, but states had a choice of whether to establish a state-­ based exchange or rely on a federal fallback. While this set a nation-wide tax policy, the implementation allowed for state choice and variation. The principle variation that resulted was that states with state-based exchanges took a more aggressive approach to outreach and enrollment, and thereby enrolled more of their population in subsidized coverage [10].

The ACA and Health Insurance Regulation Federal incursion under the ACA into the area of health insurance regulation represents a much bigger shift in state-federal roles than does the expansion of coverage, which, in the end, resulted in an incremental expansion of the preexisting state-­ federal relationship. The ACA essentially imposed a whole new scheme of federal rules relating to health insurance. While states remain the locus of enforcement of those rules, the policy was set federally, and this represents a major shift in responsibilities. The law required state adoption of insurance market reforms, including: • Allowing children to stay on parents’ coverage until age 26 • Prohibiting lifetime limits on benefits • Prohibiting exclusions for preexisting conditions

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• Establishing minimum essential benefits (ten categories of benefits that must be covered under any health insurance policy) • Establishing minimum medical loss ratios (the minimum amount insurers must payout for medical services, as opposed to spending on administration, contributions to reserves, or profit) • Greatly limiting the factors that can be used to vary premiums, so older and sicker people do not pay great multiples of what younger, healthier people pay for insurance • Requiring guaranteed issue, whereby insurers cannot deny coverage to anyone Some states had already adopted all or most of these market reforms. In this sense, the ACA’s foray into insurance regulation was an example of the states as “laboratories of democracy,” a phrase coined by US Supreme Court Justice Louis Brandeis to indicate a situation in which states test a policy that could be applied nationally. But mandating these regulatory changes across the country was no small deal—it was a major federal encroachment on state discretion [11, 12]. In summary, the ACA addressed three dimensions of state-federal relations in health policy and its effects varied across those dimensions. Specifically: • The ACA included Medicaid eligibility changes that would have been considered an expansion of federal requirements, but the US Supreme Court limited the impact of that policy change so that it became just another state option in Medicaid coverage policy. • The ACA created health insurance exchanges and created new federal tax credits to finance coverage for people above Medicaid eligibility levels. This was a pure federal policy expansion, with a little bit of state flexibility regarding whether to create a state-based exchange or fall back to the federal exchange. From a policy perspective, little was left to the states. • The ACA clearly effected a federal encroachment on state authority to regulate fully insured health insurance offered through state-licensed insurers.

Federalism in US Health Policy Post-ACA Federalism is alive and well in US health policy. States and the federal government continue to share and divide roles and responsibilities; states continue to be the implementers of much federal policy and, at the same time; states remain a strong source of resistance to total federal control. The “New Federalism” that characterized welfare reform in the 1990s does not seem present in health policy—states have choices about what to implement, yes, but not major flexibility about how to implement. The federal role in subsidized health insurance coverage and health insurance regulation grew under the ACA. These could be characterized as federal encroachments on state policy turf, or as an expansion of the traditional state/federal deal:

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states that want to do more, can; states that don’t, won’t be compelled. Either way, retention of state’s rights and state flexibility continue to characterize our system. The debate about relative state and federal roles in this arena continues, and the lines of responsibility continue to be drawn and redrawn. We can expect that federalism in health policy will continue to evolve and that debate about who should do what will continue to characterize policy discussions. Some of the central questions that deserve study and/or debate include: • Is federalism a way of fostering state innovation, or is it really just a mechanism for finding political compromise in a politically diverse country, where consensus on nationwide social policy is very difficult? In other words, does experimentation at the state level truly feed national policy development, or does it just allow for a state-by-state expression of our divisions? • Is there an inherent value in either state-run or federally-run healthcare or regulatory programs? Do the outcomes of programs, or of regulation, vary by the level of government to which they are assigned? One could argue that state control results in a more effective, closer-to-the-­ ground approach to both health insurance provision and insurance oversight. But it seems equally plausible that federal standards, even if implemented by states, create both a more equitable system of coverage and regulation and a more coherent nationwide schema. It is not apparent that one approach is superior. What is apparent is that the choice of approach—policy implemented uniformly across states, versus policy implemented differently across states—is driven as much by considerations of what is possible, politically, as it is by considerations of the best approach to policy advancement. These questions far predated the ACA, of course, and indeed trace back to the roots of our country. Some authors have posited (and documented) that the kind of state-to-state variation allowed under our version of federalism has been a convenient scheme for allowing racism and other anti-inclusive ideologies to coexist with social policy [3, 13]. Some have documented how differences in Medicaid coverage, in particular, reinforce disparities [14]. Others would say that health policy and state-to-state variation are a perfect representation of the kind of federalist relationship our founders intended to foster [2, 3, 13]. The federal encroachments on previous state policy scope described here are significant examples of both the continued expansion and redefinition of the federal role in health policy and of the limits on, and resistance to, that expansion. At the same time, they demonstrate the strength of federal policymaking as a mechanism for creating more equity and more coherent oversight in an otherwise highly variable state-to-state schema. The federal role has been expanded, and state-to-state policy variation has been reduced. That is a good thing. One has to wonder what this chapter in our history tells us about the future of expansions of coverage. Are we destined to have state-to-state variations in access to care and insurance coverage, because that is the only way we can reach compromise in our system? If so, maybe we should abandon flirtations with Medicare for All as a national solution and make a viable path available for states to pursue that

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approach and be more expansive laboratories of democracy. Unfortunately, powerful interests in Congress (and those who lobby them) are unlikely to permit Congress to allow that kind of true experimentation. So, for the time being, we seem to be stuck with approaches to health insurance coverage and health insurance regulation that are neither state, nor federal, nor coherently federalist. Acknowledgment  The author would like to thank JudyAnn Bigby, MD, for her time, guidance, and input with this chapter.

References 1. Kondratas A, Weil A, Goldstein N. Assessing the new federalism: an introduction. Health Aff. 1998;17(3):17. 2. Holahan J, Weil A, Wiener J. Federalism & health policy: an overview. Washington, DC: The Urban Institute; 2003. 3. Doonan M. American federalism in practice: the formulation and implementation of contemporary health policy. Washington, DC: Brookings Institute Press; 2013. 4. Sparer MS. Federalism and the patient protection and affordable care act of 2010: the founding fathers would not be surprised. J Health Polit Policy Law. 2011;36(3):461–8. 5. National Governors Association. Principles for state-federal relations. 2018. https://www.nga. org/policy-­positions/principles-­for-­state-­federal-­relations/. Accessed 15 Apr 2020. 6. Kaiser Family Foundation. 2018 employer health benefits survey. 2018. https://www.kff.org/ report-­section/2018-­employer-­health-­benefits-­survey-­section-­10-­plan-­funding/. Accessed 15 Apr 2020. 7. Gluck A, Huberfield N. What is federalism in healthcare for? Stanford Law Review. 2018;70. https://review.law.stanford.edu/wp-­content/uploads/sites/3/2018/06/70-­Stan.-­L.-­Rev.-­1689.pdf. 8. MACPAC.  Medicaid and CHIP Payment and Access Commission. Medicaid enrollment changes following the ACA. 2019. https://www.macpac.gov/subtopic/medicaid-­enrollment-­ changes-­following-­the-­aca/. Accessed 15 Apr 2020. 9. MACPAC.  Medicaid and CHIP Payment and Access Commission. Delivery system reform incentive payment programs. 2019. https://www.macpac.gov/wp-­content/uploads/2018/03/ Delivery-­System-­Reform-­Incentive-­Payment-­Programs.pdf. Accessed 15 Apr 2020. 10. Shelby Livingston. HealthCare.gov enrollment down from 2018 as exchanges fail to attract new customers. 2019. https://www.modernhealthcare.com/article/20190103/NEWS/190109957/ healthcare-­gov-­enrollment-­down-­from-­2018-­as-­exchanges-­fail-­to-­attract-­new-­customers. Accessed 15 Apr 2020. 11. Jost TS. Implementation and enforcement of health care reform – federal versus state government. N Engl J Med. 2010;362:e2. 12. Jennings CC, Hayes KJ.  Health insurance reform and the tensions of federalism. N Engl J Med. 2010;362:2244–6. 13. Sparer MS. Medicaid and the limits of state health reform. Philadelphia: Temple University Press; 1996. 14. The Commonwealth Fund. The costs of opting out of the Medicaid expansion. 2013. https:// www.commonwealthfund.org/publications/infographic/2013/dec/costs-­opting-­out-­medicaid-­ expansion. Accessed 15 Apr 2020.

Chapter 6

Policies Designed to Achieve a Data-Driven Learning Healthcare System: A Decade of Progress and Future Directions Umberto Tachinardi and Peter J. Embi

Passage of the Affordable Care Act (ACA), and before that, the Health Information Technology for Economic and Clinical Health (HITECH) Act, have substantially advanced the US toward adoption of a digital healthcare infrastructure that holds great promise for enabling the vision of an interoperable “Learning Health System” [1]. Indeed, one of the major impacts of the HITECH Act was the move toward “meaningful use” regulations that, for all of their faults and unintended consequences, did result in acceleration of the adoption of health information technology (IT) across the nation [2, 3]. As a result of these trends, we now have foundational digital healthcare capabilities and a growing body of evidence that offer unprecedented opportunities to rethink the way healthcare is defined, organized, delivered, and paid for. In addition to technological solutions, the ACA promoted the development of new approaches to organizing and aligning incentives, such as accountable care organizations (ACOs), bundled payments, and patient-centered medical homes, all of which were designed to improve healthcare value by controlling costs while improving quality [4, 5]. Such initiatives hold promise for shifting risk for healthcare outcomes to providers, thereby incentivizing more coordinated, efficient care that primarily promotes patient and population health, and simultaneously stimulates the use of efficient evidence-based best medical practices, while avoiding unnecessary expenditures. However, fully achieving this vision requires more work to modernize the healthcare sector in numerous ways, including through investments in digital capabilities. Specifically, success in this regard requires the deployment of a U. Tachinardi (*) Department of Biostatistics, Indiana University School of Medicine, Indianapolis, IN, USA e-mail: [email protected] P. J. Embi Regenstrief Institute, Indianapolis, IN, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 H. P. Selker (ed.), The Affordable Care Act as a National Experiment, https://doi.org/10.1007/978-3-030-66726-9_6

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more advanced IT and informatics infrastructure for healthcare and population health that matches technological advances across the rest of society. Indeed, while other sectors of the economy have leveraged technology to drive dramatic improvements in productivity and consumer value for many years, healthcare has historically been slow to embrace it. For example, it wasn’t long ago that most physicians relied on handwritten notes stored in file folders to maintain their patient records. Even when technologies were adopted, they tended to focus more on business processes than on factors that could directly improve healthcare or communication.

The Triple Aim and the ACA: From Theory to Strategy The ACA and the HITECH Act were instrumental in accelerating a fundamental shift in health IT implementation and use across the US. Designed to stimulate the adoption of health IT, the HITECH Act included significant incentives for eligible hospitals and providers, along with a variety of programs to advance the field. Importantly, the Office of the National Coordinator for Health Information Technology (ONC), while initially created by executive order in 2004, was legislatively mandated in HITECH in 2009. As the office within the US Department of Health and Human Services (HHS) focused on advancing health IT to improve health and healthcare, ONC has played, and continues to play, a key role since its creation. Indeed, ONC’s activities ultimately seek to support the adoption and use of health IT to improve health, including supporting the so-called “triple aim” of better health care for individuals, better health of populations, and lower per capita costs [6]. To affect such change, HHS entities like ONC and the Centers for Medicare and Medicaid Services (CMS) correctly identified that digital information forms the foundation for the new payment and delivery models we need to achieve the triple aim, and the ACA that followed included provisions that express the same belief and goals. Among its more important provisions, the HITECH Act provided incentives to help offset some of the cost of electronic health record (EHR) system adoption. As such, it encouraged adoption of EHR systems meant to enable providers to securely collect, store, and exchange patient health information. The goal of such adoption and “meaningful use” was to ensure that providers have the right information, at the right time, to offer their patients the right care. The legislation also required the use of patient-facing tools in the form of patient portals that were designed to provide patients access to their health information. As a result of this legislation and the mandates and rules created and overseen by ONC, use of EHR systems has expanded across the US over the past several years. This is a foundational component of a truly twenty-first-century healthcare system where people can decide what are the best options and pay for the right care, not just more care.  However, more work remains to fully realize this vision.

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A basic building block for the HITECH plan is the concept of “Meaningful Use” of health IT.  The ONC defined Meaningful Use as using certified EHR technology to: • • • •

Improve quality, safety, and efficiency, and reduce health disparities Engage patients and family Improve care coordination and population and public health Maintain privacy and security of patient health information

Meaningful Use was an important driving force in the IT industry. It incentivized providers to adopt systems and was intended to help them achieve the triple-aim goals; however, it is now clear that Meaningful Use did not live up to its full promise. Stage 1 of Meaningful Use was about utilizing technology to gather information and jumpstarting the transition from paper to digits. Stage 2 focused on care coordination, information exchange and operability, and patient access to data. Stage 3 final rule, released in 2017, is/was aimed at using Certified EHR Technologies (CEHRT) to improve health outcomes (Fig. 6.1). The Meaningful Use stages 2 and 3 focus less on technology, but rather on using technology to gather information, improve access to information for both providers and patients, and fundamentally transform care for the better.

Stages of Meaningful Use Improving Outcomes Stage 3 2016-17 Stage 2 2014-15

Stage 1 2011-13

Stage 1: Data capture and patient access

Stage 2: Information exchange and care coordination

Fig. 6.1  Evolution of meaningful use [7]

Stage 3: Improved outcomes

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One area where effort is still underway and needed is in the sharing of patient data via interoperable systems. Interoperability is the ability of EHR systems not only to exchange data, but also to interact with other systems (i.e., activate functions remotely). The ONC is the agency charged with promoting standards and interoperability. In partnership with CMS and other agencies within HHS, ONC continues to create rules and guidance based upon legislation that aims to improve the adoption and use of EHR for improvements in health and healthcare. In 2018, CMS renamed the EHR Incentive Programs to the Promoting Interoperability Programs. The goal was moving “the programs beyond the existing requirements of meaningful use to a new phase of EHR measurement with an increased focus on interoperability and improving patient access to health information” [8].

Early Health IT Experiments: Beacon Communities The HITECH Act included funding for the ONC’s Beacon Community Program. This “innovation fund” supported 17 Beacon Communities to test novel IT initiatives with the goal of determining which ones should be scaled up across the country. The program included about $250 million, with each Beacon Community receiving about $12 million to $16 million over three years. The Communities represented regions across the country that had previously made significant progress in the adoption of health IT [9]. The Beacon Community Program goals included building and strengthening a health IT infrastructure; improving health outcomes, care quality, and cost efficiencies, as well as spearheading innovations to achieve better health and health care. These Beacon Communities were microcosms of the rest of America, and as such, the lessons that were learned from them will play a key role in healthcare transformation. Spanning the country, each Beacon Community had a portfolio of a dozen or so health IT projects, all trying to meet the triple-aim of better health care, better health, and reduced cost. Indeed, the projects sorted into three categories. First, to build and strengthen health IT infrastructure and exchange capabilities. Second, to improve cost, quality, and population health. Third, to test innovative approaches to performance measurement, technology integration, and care delivery. These Beacon Communities were in healthcare markets that had previously made important strides in health IT. For example, one of the hotbeds for health IT dating back 50 years is Indianapolis, and specifically the Regenstrief Institute, Inc., a support organization of the Indiana University School of Medicine. Well known in Indiana, Sam Regenstrief (1909–1988) was one of America’s least known but most successful entrepreneurs, the front-loading dishwasher king. He left the bulk of his fortune to medical research, and in the early 1980s, the Regenstrief Institute was already envisioning the potential of electronic medical records. From this work, the community of Indianapolis helped lead the way in the electronic exchange of health information across the region through the Indiana Health Information Exchange.

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While the results of the Beacon initiative were more impressive locally than nationally, they nevertheless were impactful in helping advance our knowledge of best practices and in encouraging continued movement toward our goal of an interoperable, digitally enabled learning health system [10].

Health IT Legislation After the ACA and Future Implications In 2015, President Obama signed the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA). MACRA changes how providers are reimbursed for Medicare patient care. It also increases overall funding and extends the Children’s Health Insurance Program (CHIP) and charges both the Government Accountability Office and the DHHS to help with “the implementation of nationwide electronic health records (EHR), while simultaneously comparing and recommending such programs for providers” [11]. The idea is to move the system from fee-for-service to pay-for-performance using the ACO model. MACRA uses the following criteria as performance indicators: outcome measures such as patient-reported outcome and functional status measures; patient experience measures; care coordination measures; and measures of appropriate use of services. One interesting aspect of the regulation is that MACRA requires the exclusion of Social Security Numbers (SSNs) from Medicare cards. This constitutes an important recognition of the necessity to protect privacy [12]. As reforms focus on payment for outcomes rather than services rendered, incentives should increasingly align to encourage more data sharing between providers aiming for better care at lower cost. However, enabling such sharing can remain a challenge, because even when healthcare entities are willing to share data, their systems may not be interoperable. More generally, the more highly customized a data management system is, the less interoperable it tends to be. These two related issues of limited data sharing or “information blocking” and interoperability are especially problematic in terms of linking different data types, such as clinical, payer, social, and environmental data. We need to link such data so that patients’ data can follow them seamlessly as they move from provider to provider, and so that we can better understand the full picture of a patient’s health state to keep them healthy. Indeed, nearly a decade after passage of HITECH, it has become clear that further policy efforts are needed to fully realize the goals originally envisioned in the HITECH Act and the ACA. In response to lessons learned and the need to address current challenges, Congress crafted and passed the 21st Century Cures Act of 2016. The Cures Act lays out an ambitious agenda for the evolution of EHRs beyond what was first described in the HITECH Act. This agenda is based on a new statutory definition of Health IT interoperability and data accessibility that stipulates an EHR system: (1) enables the secure exchange and use of electronic health information without special effort on the part of the user; (2) allows for complete access,

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exchange, and use of all electronically accessible health information for authorized use under applicable State or Federal law; and (3) does not constitute information blocking. In addition to this new and expanded definition for data interchange capabilities, a new adjunct to ONCs Certification Program for EHRs was included. This new program outlined specific conditions for certification, including a key element that states certified health IT systems must have “published application programming interfaces and allows health information from such technology to be accessed, exchanged, and used without special effort...including providing access to all data elements of a patient’s electronic health record...” At the time of this writing, the ONC continues its work to finalize rules that will operationalize this legislation. However, it is already clear that the new specifications in the Cures Act will likely have profound and positive implications for the Health IT industry, healthcare providers, and patients. The “without special effort” clause alone is likely to be quite impactful as it should allow access via APIs to healthcare data in a manner not previously possible. The results of this should help advance the original goals of the ACA by further enabling improvements in healthcare delivery. It is also expected (hoped) that this legislation will lead to positive disruptions to the healthcare industry, enabling new approaches— and even players—in the healthcare arena, particularly in the areas of digital health and healthcare. Indeed, it is already evidence that a new industrial boom is forming, fueled by enhancements in data integration, healthcare information exchange, and patient empowerment. Many such transformational developments were started by the ACA, have been accelerated by the subsequent legislation mentioned above, and are beginning to re-shape the traditional healthcare business model. In addition, the new patient-centered, data-driven paradigm is attracting small and large technology players (i.e., Google, Apple, IBM, Amazon, and so on) to focus and commit significant resources and innovative developments to the health and healthcare sector. Peripheral industries, such as pharmacies and payors, are also taking on larger roles in healthcare delivery, roles historically played by more traditional healthcare entities. Some of the progress is also due to more widespread use of health data standards that can enable interoperability. Long lived data and terminology standards like Logical Observation Identifiers Names and Codes (LOINC) and Systematized Nomenclature of Medical Terms (SNOMED), as well as newer data interchange standards, have emerged from the efforts of the health informatics community to become essential enablers of interoperable systems. One such example, the Fast Healthcare Interoperability Resources (FHIR) makes it easier and faster to develop solutions that can be connected to EHR systems, and its adoption is steadily increasing. A good example of the benefits of improved interoperability using FHIR are found in applications used by patients in their mobile phones (e.g., Apple’s Health app ©), as well as sophisticated decision support tools that combine genetic data with EHR data and produce highly personalized recommendations of treatments for precision medicine.

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One of the other notable advances, thanks to the widespread adoption and use of increasingly standards-based, interoperable EHRs, is the expansion of data exchange and data re-use for benefits beyond healthcare delivery, such as to enable and accelerated clinical and translational research [13, 14]. For example, large randomized trials of medical procedures and pharmaceuticals cost tens of millions of dollars to conduct in the US. With privacy-protected data on sufficient numbers of patients, researchers could conduct virtual randomized trials at the cost of doing a database spread sheet that correlates the delivery of different procedures or medications with patient outcomes. Such capabilities beg a reimagination of the research-practice paradigm that must be advanced to not only take better care of patients today, but to ensure we develop new approaches to care for future generations [15]. As we move into the next decade of health IT and informatics advances, we will be building upon the technological foundations encouraged and enabled by HITECH and the ACA. Even as we work to remedy the remaining challenges with new legislation like the 21st Century Cures Act, recent experiences have taught us lessons that we would do well to heed: (1) whenever we implement new technologies into the complex environment of healthcare, we should expect (and monitor for) the unexpected; (2) we must never lose sight of the overarching goals we have for health IT—to improve health and healthcare for individuals and populations.

References 1. Friedman CP, et  al. Achieving a nationwide learning health system. Sci Transl Med. 2010;2(57):57cm29–57cm29. https://doi.org/10.1126/scitranslmed.3001456. 2. Mennemeyer ST, et al. Impact of the HITECH act on physicians’ adoption of electronic health records. J Am Med Inform Assoc. 2015;23(2):375–9. https://doi.org/10.1093/jamia/ocv103. 3. Cohen MF.  Impact of the HITECH financial incentives on EHR adoption in small, physician-­ owned practices. Int J Med Inform. 2016;94:143–54. https://doi.org/10.1016/j. ijmedinf.2016.06.017. 4. Edwards ST, et al. Structuring payment to medical homes after the affordable care act. J Gen Int Med. 2014;29(10):1410–3. https://doi.org/10.1007/s11606-­014-­2848-­3. 5. Ziring PR, et al. American academy of pediatrics (committee on children with disabilities) care coordination: integrating health and related systems of care for children with special health care needs. Pediatrics. 1999;104:978–81. Balanced Budget Act of 1997 (P.L. 105–33) 6. Whittington JW, et  al. Pursuing the triple aim: the first 7 years. Milbank Quarterly. 2015;93(2):263–300. https://doi.org/10.1111/1468-­0009.12122. 7. Tang P. Draft recommendations meaningful use stage 3. Meaningful Use Work Group. 2013; www.healthit.gov/sites/default/files/facas/muwg_stage3_draft_rec_07_aug_13_.v3.pdf. 8. “Promoting Interoperability Programs.” CMS.gov, www.cms.gov/Regulations-­and-­Guidance/ Legislation/EHRIncentivePrograms/index?redirect=/ehrincentiveprograms/. 9. Maxson ER, et al. Beacon communities aim to use health information technology to transform the delivery of care. Health Aff. 2010;29(9):1671–7. https://doi.org/10.1377/hlthaff.2010.0577. 10. Torres G, et  al. Building and strengthening infrastructure for data exchange: lessons from the Beacon communities. EGEMs (Generating Evidence & Methods to Improve Patient Outcomes). 2014;2(3):9. https://doi.org/10.13063/2327-­9214.1092. 11. H.R.2 – Medicare Access and CHIP Reauthorization Act of 2015, 114th Congress (2015–2016), https://www.congress.gov/bill/114th-­congress/house-­bill/2.

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12. “MACRA.” CMS.gov, www.cms.gov/Medicare/Quality-­Initiatives-­Patient-­Assessment-­ Instruments/Value-­B ased-­P rograms/MACRA-­M IPS-­a nd-­A PMs/MACRA-­M IPS-­a nd-­ APMs. 13. Embi PJ, Payne P. Clinical research informatics: challenges, opportunities and definition for an emerging domain. J Am Med Inform Assoc. 2009;16(3):316–27. 14. Embi PJ, Payne P.  Evidence generating medicine: redefining the research-practice rela tionship to complete the evidence cycle. Med Care. 2013;51 https://doi.org/10.1097/ mlr.0b013e31829b1d66. 15. Embi PJ, et  al. Reimagining the research-practice relationship: policy recommendations for informatics-enabled evidence-generation across the US health system. JAMIA Open. 2019;2(1):2–9. https://doi.org/10.1093/jamiaopen/ooy056.

Chapter 7

The Healthcare Message Wars Ceci Connolly

President Obama probably thought his healthcare legacy was cemented with passage of the landmark Affordable Care Act (ACA). But the failure of his administration and Democrats in Congress to effectively tout the benefits of the ACA created a rhetorical void that the Republican Party, and later Donald Trump, were only too willing to fill. The ferocious anti-Obamacare messaging cost Democrats seats in Congress, contributed to the 2016 defeat of Hillary Clinton, and paved the way for significant substantive policy retrenchment in the Trump era. Yet the ACA roller coaster continues. President Trump, even when he had control of both chambers of Congress, discovered the same lessons his predecessor learned: it is easier to tear down than to build; it is easier to campaign than to govern. And with portions of the law still being challenged and many prominent Democrats veering leftward toward single-payer style health systems, only one thing is certain: the healthcare message wars will continue to rage into the next decade.

Healthcare Messaging Pre-ACA Going back to the earliest days of the Obama administration, we see that public attitudes toward healthcare reform began to wane in conjunction with a decline in the president’s favorability ratings. From October 2008 through August 2009, the percentages of Americans who said that it was more important than ever to reform healthcare and those who said we could not afford to do so closely tracked Obama’s favorability ratings over the same period (Fig. 7.1). The numbers confirm that Obama and his signature healthcare initiative enjoyed the honeymoon that every newly elected president gets. Cognizant of that historical C. Connolly (*) Alliance of Community Health Plans, Washington, DC, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 H. P. Selker (ed.), The Affordable Care Act as a National Experiment, https://doi.org/10.1007/978-3-030-66726-9_7

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Public Attitudes Toward Healthcare Reform 100% 90% 80% 70% 60%

62%

53%

It is more important than ever to take on healthcare reform now

50% 40% 30%

42% 34%

20%

We cannot afford to take on healthcare reform now

10% 0 Oct 08

Dec08

Feb09

Apr09

Jun09

Jul09

Aug09

Source: Kaiser Health Tracking Poll - September 2009

Fig. 7.1  Public support for health reform declines during the heat of the debate. (Reproduced with permission from the Kaiser Health Tracking Poll, September 2009. Kaiser Family Foundation, 2009)

truism, Rahm Emanuel, who was then White House chief of staff, did everything in his power to move the effort along, albeit unsuccessfully. Not surprisingly, support for reform fell from its high of 62% immediately following Obama’s inauguration to 53% in August 2009, when lawmakers went home for a Congressional recess to face voters who had heard tall tales of “death panels” (Fig. 7.2). A Kaiser Family Foundation poll offers another snapshot of public attitudes during the time between President Obama’s inauguration and the passage of the ACA (Fig. 7.3). Aside from losing the early message campaign, Obama and his party also made a legislative miscalculation. In the summer of 2009, Democrats controlled 60 seats in the Senate, a filibuster-proof majority, and they had a still-popular new president who came to office on a message of hope and change. So, the Democrats could have moved the bill through Congress quite rapidly, LBJ style. They had the votes. It would have been done. Instead, Obama and Sen. Max Baucus (D-MT), the Finance Committee chairman, courted Republican senators in search of an elusive bipartisan victory. To understand how unrealistic that strategy was, think back to the countless meetings, and hamburger lunches at the White House for Sen. Chuck Grassley (R-IA) that summer. In response to the solicitous attention from the Democrats, Grassley told an August town hall meeting in Iowa: “We should not have a government program that determines if you’re going to pull the plug on grandma.” Grassley, the highest-ranking Republican on the Senate Finance Committee, struck a nerve. Polling during the August recess showed that many Americans believed healthcare reform was going to create death panels (Fig. 7.2). A full 75% of Fox News viewers believed the legislation would lead to government death

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Fig. 7.2  Conservatives in particular buy into the concept of “death panels” propagated by opponents of the law. (Courtesy of NBCUniversal Archives)

August 2009 Snapshot: Effect of Health Reform if Passed 50% 45% 40% 35%

Better off

30%

Worse off

25%

No difference

20% 15% 10% 5% 0

The country as a whole

You and your family

Source: Kaiser Health Tracking Poll - August 2009

Fig. 7.3  The public perceives greater benefit of health reform to the country as a whole and less for them and their families. (Reproduced with permission from the Kaiser Health Tracking Poll, August 2009. Kaiser Family Foundation, 2009)

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panels. But we should not overlook the fact that 30% of MSNBC and CNN viewers, and 45% of Americans overall, believed the same thing. There were never going to be “death panels,” but there was a kernel of truth to the charge. The legislation as then written was in fact going to permit Medicare to pay for a counseling session with a physician to discuss end-of-life choices. Importantly, the Obama White House was slow to respond simply and forcefully, seemingly forgetting the experiences of Michael Dukakis’s 1988 presidential campaign when it failed to rebut blistering attacks regarding the release of Willie Horton. And for all his rhetorical talents, even Obama had difficulty communicating effectively when he did talk about healthcare reform. Asked by the New York Times about medical choices for his own grandmother, he said: “I would have paid out of pocket for that hip replacement, just because she’s my grandmother. Whether, sort of in the aggregate, society making those decisions to give my grandmother, or everybody else’s aging grandparents or parents, a hip replacement when they’re terminally ill is a sustainable model, is a very difficult question” [9]. Meanwhile in the Senate, the legislative giant Edward M. Kennedy (D-MA) died and a Republican (Scott Brown) replaced him. Not only did Democrats lose their most forceful advocate in support of sweeping national health reform, but they also lost their filibuster-proof majority. That meant the reform bill had to be passed through a process known as budget reconciliation, which only required 51 votes in the Senate. Few at the time realized the significance of that necessary shift in strategy. The parliamentary maneuver enabled Democrats to enact the bill, but they could not use a traditional “conference committee” to address holes and uncertainties in the early versions of the legislation. Many of the later challenges to the ACA were made possible by these drafting errors. (It might be worthwhile for Democrats pursuing a single-payer style system in 2020 to reflect on this history and the likely makeup of the next Congress.) When the Kaiser Family Foundation asked people in August 2009 if the country would be better off if healthcare reform passed, 45% said yes. But when asked if you and your family would be better off if healthcare reform passed, only 3% said yes. Public attitudes typically diverge when people focus on their own circumstances versus everyone else’s and Americans, somewhat accurately, viewed the ACA as coverage expansion for the uninsured. Few expected it to provide financial relief to those already covered, including 150 million people enrolled in employer-­ sponsored plans. Ironically, policymakers often forget just how personal voting is for Americans. The so-called Hillary Care effort failed in President Bill Clinton’s first term because people were concerned that they were going to lose what they had—namely, that employer-sponsored coverage. The kitchen table “Harry and Louise” commercials from the Health Insurance Association of America conjured fears of a government takeover of people’s most intimate medical decisions. (It was a theme that would repeat itself yet again in 2017 when Republicans were in control of Washington and set about multiple efforts to “repeal and replace” the ACA.)

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So, while Obama and Democrats had their historic White House signing ceremony in March 2010, they were left with a flawed, sprawling new law that was difficult to implement and growing unease over what people might lose. Democrats lost control of the House in 2010, in keeping with historic trends that the first midterm after a new president is elected, but due in part to voter upset over the ACA. Analysis by researchers at North Carolina State University suggested that the health law and other major initiatives such as the bank bailout known as TARP, cost key incumbent Democrats six to eight percentage points, enough to have determined the outcome in several close races [1]. Republicans picked up seats in the Senate and had a net gain of six governorships. In addition, it was clear that Obama and Democrats had not devoted enough time or brainpower to how they would communicate about the sweeping new law. It was also clear that selling a complex, massive new public program that touched one-fifth of the US economy and millions of Americans in very personal ways was far more difficult than criticizing from the sidelines.

White House Messaging Falters After Passage of the ACA During his own 2012 reelection campaign, Obama revived some of the initial enthusiasm for the ACA, largely by emphasizing popular individual provisions such as keeping children on their parents’ plan until age 26 and rebates paid by insurance companies that exceeded medical loss ratio restrictions. Those individual elements consistently polled higher than overall support for “Obamacare,” according to The Guardian’s Harry Enten [5]. “Allowing 2.5 million young people to stay on their parents’ health insurance plan—that was the right thing to do,” Obama declared at his reelection kickoff rally in Ohio. “Cutting prescription costs for seniors—that was the right thing to do. I will not go back to the days when insurance companies had unchecked power to cancel your policy or deny you coverage or charge women differently from men.” The Supreme Court vote in June 2012 to make the law’s Medicaid expansion optional for states further undercut its immediate appeal and weakened one of the major selling points of the law, notably that it expanded access to millions of working Americans. Two years had passed since that signing ceremony, and very few people were experiencing any notable improvements in their lives. In 2013, about 4 million people had their existing coverage canceled because the plans did not comply with the new ACA requirements. It infuriated voters who remembered Obama’s campaign pledge that “If you like your health care plan you can keep it.” So harsh was the reaction, that PolitiFact called Obama’s claim its “lie of the year” [6]. It probably did not help that Sen. Baucus, one of the chief architects of the ACA, warned publicly that implementing the complex new law could be a “train wreck.” By fall 2013, 52% of Americans opposed the ACA and a little under 38% supported it, according to poll aggregation conducted by HuffPollster [5]. The importance of language was brought into stark relief in a similar poll at the time conducted by

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CNBC in which 46% of respondents opposed “Obamacare” and only 37% opposed the ACA [13]. Significantly, three full years after enactment, large numbers of Americans said they knew very little about the law. In 2014, Baucus’s prediction seemed prescient. As the Department of Health and Human Services (HHS) struggled to launch a new website—Healthcare.gov—for consumers to “shop” for coverage on the ACA’s individual exchanges, Republicans amped up their verbal attacks with massive paid media. According to tracking by Kantar Media, Republicans included negative ACA messages in 84% of their political ads dealing with health issues, compared to 15% of those by Democrats [2]. It is true that the healthcare industry, particularly insurers, spent heavily to encourage enrollment in the new exchanges, though less than half of those spots mentioned the ACA. At the same time, the news headlines focused on the website woes far more than the prospect of people receiving health insurance for perhaps the first time in their lives. Despite significant advertising and outreach, fewer than a third of uninsured Americans knew they could get government subsidies to help cover their premiums [11]. Older, white adults were more inclined to sign up for coverage than younger Americans and minorities. This trend posed several problems from both an image standpoint and, more importantly, from the composition of the risk pools insurers were suddenly tasked with managing. From the outset, Democratic policymakers had two conflicting goals: to target benefits to those most in need of coverage and care (older, sicker, poorer Americans) and to woo the so-called young invincibles, who essentially subsidize older beneficiaries. Years later, Kathleen Sebelius, HHS Secretary during the rollout, described the challenges in a conversation with Vox in March 2017. Bringing unhealthy people into the market is hard “because it requires the healthy people who had a sweet deal in the past to pay higher rates,” she said. “There is no question that some people’s rates went up, but the old market didn’t work very well for the majority of people who needed the coverage” [7]. From a policy perspective Sebelius was correct. But she too, despite being a Democrat who won statewide election in conservative Kansas, seemed to have overlooked the polling data that warned that voters focus much more on their own circumstances than societal good. White House adviser Ezekiel Emanuel, a physician and brother of Rahm Emanuel, was more direct. “We made the wrong trade-off,” he said in 2017. “The consequence is costs for old people are higher because we don’t have enough young people in the pool” [7]. Even as the uninsured rate in the nation fell from 18% in July 2013 to 13% one year later, American attitudes about universal coverage were shifting. During the 2007 presidential campaign, 64% of Gallup poll respondents agreed that government had a responsibility to make sure all Americans were insured; the percentage fell to 47% in a February 2014 Pew survey [10].

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“There’s probably a communication strategy that could have worked better than what we did, because what we did didn’t work,” reflected Phil Shiliro, a veteran Hill staffer who led the White House legislative effort at the time [7]. The 2014 campaign was not dominated by a single issue, though healthcare typically registered third on the list of voter concerns. The partisan divide over health issues was wide, and fully one-third of Americans supported repealing or scaling back the ACA. That November Republicans regained the Senate. With control of both chambers of Congress, the GOP ratcheted up its attacks on the ACA. For those two years at least, the battle was largely symbolic. Obama remained in office and in a position to veto any legislative attacks on his namesake law.

Healthcare Prominent in 2016 Presidential Campaign As the race to succeed Obama heated up, voters were presented with distinct choices on healthcare. In the Democratic primaries, as Sen. Bernie Sanders (I-VT) roused the crowds with his pledge of Medicare for All, Hillary Clinton latched herself firmly to the ACA. “I am a staunch supporter of President Obama’s principal accomplishment, namely the Affordable Care Act,” she said during one February debate. “Before it was called Obamacare, it was called Hillarycare,” she said frequently on the trail. Primary voters embraced Clinton’s package of incremental additions to the ACA, but it became a giant target for Donald Trump, who stunned the political establishment by winning the Republican nomination. During the months leading up to his victory, Trump labeled the ACA a “total disaster” offering “very, very bad insurance.” He frequently warned that the law was a “first step to single payer.” Overlooking the fact that many exchange enrollees received sizable subsidies, Trump hammered Obamacare for its rising premiums in the early years. “The rates are going through the sky,” he said at a Florida rally less than one month before Election Day. When he became president, Trump promised repeatedly, the ACA would be replaced with “something terrific.”

Pelosi Moves to Reclaim Healthcare Messaging At the time of Trump’s inauguration, a little less than seven years after enactment, it appeared Obamacare was on life support. On his first day in office, Trump signed an executive order directing federal agencies to “exercise all authority and discretion available to them” to delay

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implementation of the ACA, give states broad flexibility to dismantle, ignore, or replace the federal law. The executive order, as is often the case, was largely symbolic, but it conveyed just how dramatic the change in political power was. Under the speakership of Paul Ryan, the GOP House did in fact vote to overturn the ACA—repeatedly. According to a tally by Newsweek, Congress voted to repeal, replace, or significantly alter the law more than 70 times between 2011 and 2017 [12]. Of course, as Democrats saw in 2010, a narrow margin for the ruling party in the Senate—this time Republicans—meant that the repeal bills never reached Trump’s desk. Separately, the administration moved ahead with regulatory changes that chipped away at many elements of the law. As Trump and the Republican Congress kept up a drumbeat focused on dissatisfaction with elements of Obamacare, Democrat Nancy Pelosi was plotting her return to the speakership. As much as the ACA is associated with Obama, the law is as much Pelosi’s legacy as anyone’s. And in a January 2017 interview with reporter Sarah Kliff, Pelosi reflected on the early rhetorical missteps [8]. “We could have done a better job to inoculate against their poison, to educate rather than assume people would understand it,” Pelosi said, acknowledging her party had “missed a beat in messaging.” She then pivoted to her strategy to reclaim the healthcare message wars, and with it the House of Representatives. “It’s so hard to sell anybody on something that they don’t know about it yet,” she told Kliff. “But to take it away, which is what the Republicans are doing now, it will have obstacles.” With the tables turned, Congressional Republicans felt pressure to not simply attack Obamacare but deliver on the promises of a “terrific” alternative. The GOP bill, named the American Health Care Act, would have slashed Medicaid spending and eligibility, eliminated tax credits for healthcare costs, eliminated the individual and employer mandates, and cut back ACA regulations on preexisting conditions and essential health benefits. Democrats belatedly found their rhetorical footing on healthcare—or perhaps simply relished their chance to criticize from the sidelines—as they fanned voter fears about losing some of the more popular ACA patient protections. By late spring 2017, an analysis by MIT’s Chris Warshaw in the online publication Axios deemed the legislation “The most unpopular bill in three decades” [4]. Support for the GOP’s American Health Care Act came in below 28% he reported, compiling polling data on a half dozen major bills, such as Clinton’s health reform, the Bush tax cuts of 2001, and the ACA. Healthcare advertising in 2018 was up significantly from the 2016 campaign, according to the Wesleyan Media Project. Exit polls on Election Day indicated that healthcare was the number one concern for 41% of voters (see Fig. 7.4). When asked which party would do a better job protecting preexisting conditions, Democrats outpolled Republicans 58–34%. Following historical trends, Trump’s party lost seats in the 2018 midterms, and healthcare clearly contributed to a remarkably wide margin for Democrats, who picked up 41 seats and control of the House.

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Fig. 7.4  MSNBC graphic: election day exit polls data (November 6, 2018). (Image reprinted in agreement with non-commercial use terms of NBCUniversal Media, LLC Terms of Use. https:// www.msnbc.com/msnbc/watch/exit-­poll-­health-­care-­replaces-­economy-­as-­most-­important-­issue-­ for-­voters-­1363558979835)

2 020 Presidential Candidates Search for Rhetorical Sweet Spot With the 2020 presidential race already underway, the healthcare reform roller coaster continues. Trump is continuing to promise a much better Obamacare alternative, though most in his party are attempting to run on issues other than healthcare. Kentucky Gov. Matt Bevins’ defeat in Nov. 2019 suggested that Republican tactics on healthcare—namely scaling back Medicaid—carry a price at the polls. Many of the prominent Democratic candidates meanwhile have positioned themselves far left of Obama, either Clinton, Ted Kennedy, or any of the better-known healthcare reformers of years past. It remains an open question whether either party has truly found its rhetorical sweet spot on this complex, costly, highly personal issue. With more than a bit of sarcasm, Tom Miller, a health care expert at the conservative American Enterprise Institute remarked: “Republican House and Senate members (bless their hearts) couldn’t figure out how to repeal and replace the ACA convincingly or successfully, but they did manage to achieve the near impossible: Make the law popular” [3]. As for the Democrats, Pelosi offered a note of caution in late 2019: “I’m not a big fan of Medicare for All,” she told the Hill. “It is expensive. There is a comfort level some people have with their current private insurance…I would think that hopefully as we emerge into the election year, the mantra will be more healthcare for all Americans” [14].

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References 1. Bedard P. Healthcare vote doomed 13 democrats in 2010 elections. U.S. News & World Report. www.usnews.com/news/blogs/washington-­whispers/2011/04/12/healthcare-­vote-­doomed-­ 13-­democrats-­in-­2010-­elections. 2. DiJulio B, Norton M, Brodie M, Wilner E, West M.  ACA advertising in 2014  – insurance and political ads. Health Reform. 2014; https://www.kff.org/health-­reform/report/ aca-­advertising-­in-­2014-­insurance-­and-­political-­ads/. 3. Cunningham W. The health 202: democrats stuck to their message on health-care. And it might win them the house. 6 November 2018. 2019. 4. David N., Lazaro G. The most unpopular bill in three decades. 2017. https://www. axios.com/the-­m ost-­unpopular-­bill-­in-­three-­decades-­1513304026-­945eeceb-­4d54-­4eef-­ abde-­545f692c4596.html. 5. Enten HJ. Harry Enten: on polling and politics; US healthcare. 2013. https://www.theguardian. com/commentisfree/2013/oct/01/healthcare-­obamacare-­affordable-­care-­act. 6. Holan AD. Lie of the Year: 'If you like your health care plan, you can keep it'. 2013. https:// www.politifact.com/article/2013/dec/12/lie-­year-­if-­you-­like-­your-­health-­care-­plan-­keep-­it/. 7. Klein E, Kliff S. The Lessons of obamacare: what republicans should have learned, but haven't. 2017. https://www.vox.com/policy-­and-­politics/2017/3/15/14908524/obamacare-­lessons-­ahca-­gop. 8. Kliff S. Nancy Pelosi’s one Obamacare regret? Relying too much on other Democrats for messaging. 2017. https://www.vox.com/policy-­and-­politics/2017/1/12/14240014/pelosi-­obamacare-­ repeal. 9. Leonhardt D. After the great recession. The New York Times. 2009; 10. Newport F. More in U.S. say health coverage is not gov’t. Responsibility: marks significant shift from the attitudes of the past decade. 2009. https://news.gallup.com/poll/124253/say-­ health-­coverage-­not-­gov-­responsibility.aspx. 11. Research/Communication, PerryUndem. The uninsured midway through ACA open enrollment. Washington, DC: Enroll America; 2013. 12. Riotta C.  GOP aims to kill obamacare yet again after failing 70 times. 2017. https://www. newsweek.com/gop-­health-­care-­bill-­repeal-­and-­replace-­70-­failed-­attempts-­643832. 13. Strategies, Hart Research/Public Opinion. CNBC AAES third quarter survey. 2013. CNBC. http:// fm.cnbc.com/applications/cnbc.com/resources/editorialfiles/2013/09/26/FI10863c-­release%209-­ 25-­13.pdf. 14. Sullivan P. Pelosi: ‘I’m not a big fan of Medicare for All’. 2019. https://thehill.com/policy/ healthcare/468553-­pelosi-­im-­not-­a-­big-­fan-­of-­medicare-­for-­all. 4 March 2020.

Chapter 8

The Role of the Supreme Court in Shaping the Affordable Care Act Shawn Maree Bishop

The US Constitution established the federal judicial system (federal courts and Supreme Court) as a check on the power of the legislative and executive branches of government. The judiciary has the duty to determine whether statutes passed by Congress and implemented by the President are constitutional. As asserted by Alexander Hamilton in Federalist Paper No. 78, no legislative act of Congress that is contrary to the Constitution can be valid [3]. Congress has its separate constitutional separate powers to establish new laws, which can range in scope from naming a US post office to providing financial subsidies for health insurance coverage through private markets, while the President retains power and duty to implement the laws through regulations put forth by the executive branch. In reviewing laws and regulations, federal courts are authorized to invalidate them if found to be inconsistent with the Constitution, and therefore their decisions can have far-reaching consequences for public policy. Actions have been taken in federal courts to challenge the constitutionality of the Affordable Care Act (ACA). The first challenge, filed in courts the day the legislation was signed into law in 2010, was made by Florida and later joined by Attorneys General in 25 states that opposed the law [2]. The lawsuit called into question Congress’ authority to establish a mandate that individuals obtain health insurance coverage, the so-called individual mandate, among other issues. Constitutional challenges also have been made to the technical regulations implementing the ACA. For example, rules specifying financial risk corridors for insurers and risk adjustment of federal premium subsidies, as well as the rule implementing the requirement for insurers to cover women’s contraceptives, have been contested. Legal challenges to the statute and its regulations have spanned both the Obama and Trump Administrations. In fact, continued litigation over various parts of the law and its regulations has become a distinctive feature of the law in its first decade. Several actions challenging the constitutionality of the ACA have reached the Supreme S. M. Bishop (*) SB Health Policy Consulting, LLC, Berwyn Heights, MD, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 H. P. Selker (ed.), The Affordable Care Act as a National Experiment, https://doi.org/10.1007/978-3-030-66726-9_8

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Court (the final arbiter of the Constitution), and a second challenge to the law’s individual mandate for health insurance coverage was heard by the Court in 2020.

 ational Federation of Independent Business (NFIB) N v. Sebelius The first legal challenge to reach the Supreme Court, National Federation of Independent Business (NFIB) v. Sebelius1*, which consolidated the initial Florida case with others, was decided in 2012—a mere 27 months after the ACA was signed into law [9]. The historic ruling at once preserved and struck down parts of the statute and revolved around four legal issues. The first issue in NFIB v Sebelius concerned the constitutionality of the ACA’s individual mandate, which the court upheld based on differing interpretations of the statute among the justices. The provision establishing an individual mandate set an annual, uniform financial penalty for individuals who do not obtain health insurance. The penalty was to be regulated and assessed through the tax code by the Internal Revenue Service, yet text of the ACA referred to it as a “penalty.” (Some Democrats in Congress believed using the term penalty had the optics of being less onerous than a new tax because it could be avoided if an individual maintained health insurance coverage.) The distinction between a tax and a penalty is relevant to the scope of Congress’ authority to pass laws that include provisions like the individual mandate. The US Constitution clearly provides Congress with broad authority to establish taxes. The outer limit of Congress’ authority to regulate commerce through penalties, however, have been the topic of a long legal debate. States argued that designed as a penalty (and not a tax), the mandate exceeded Congress’s authority under the Article 1, Section 8, Clause 3 of the Constitution, referred to as the Commerce Clause, “to regulate Commerce … among the several States.” Conservatives on the court agreed with the challengers that the individual mandate was not a tax and, as designed, not permissible under the Commerce Clause. Chief Justice John Roberts disagreed, however, ruling the ACA mandate penalty functioned as a tax and thus is permissible as part of the Congress’ taxing power. Four liberal justices also upheld the constitutionality of the mandate on grounds different from that used by the Chief Justice, concluding that the Commerce Clause permitted Congress to enact the mandate as a penalty. Aside from the question of whether the mandate penalty is a tax, the justices explored whether Congress had power under the Commerce Clause to assess a penalty for not purchasing health insurance. A hypothetical came to embody the central question about this authority: if Congress could tell people to buy health insurance 1  The National Federation of Independent Business, a business lobbying group, and 26 states were the plaintiffs in the case, and Secretary of Health and Human Services Kathleen Sebelius, as the holder of the cabinet post whose responsibilities lay at the heart of the new law, was the nominal defendant.

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and penalize them if they don’t, could Congress likewise tell people to buy broccoli and penalize them if they don’t? The broccoli hypothetical—as it came to be known—was a surprisingly consistent presence in this case. All three opinions of the Supreme Court addressed the broccoli hypothetical; however, conservative and liberal justice opinions did not agree [11]. Conservative justices argued that there was no clear way of distinguishing a mandate to purchase health insurance from a mandate to purchase broccoli, which led them in part to their opinion that the use of the Commerce Clause to create the individual mandate for health insurance was an overreach and therefore unconstitutional. Liberal justices saw a clearer distinction between the markets for health insurance and broccoli, which led them in part to their opinion that applying the Commerce Clause to health insurance need not extend to broccoli, or vegetables for that matter, and was therefore constitutional [11]. While Chief Justices Robert’s opinion on the broccoli hypothetical was in line with the conservative justices, he ruled the mandate constitutional because he viewed the penalty as a tax—which the Constitution clearly authorizes Congress to establish. In the end, the Supreme Court upheld the individual mandate as designed in the ACA because a majority of justices held different views of Congress’ authority to enact it. The Chief Justice saw the mandate as a tax and within the taxing powers of Congress, while liberal justices saw the mandate as a penalty and within the Commerce Clause powers of Congress. Legal scholars point out that if the legislative text of the ACA had referred to the mandate simply as a tax, the first legal challenge of the provision likely would not have made its way to the Supreme Court. NFIB v Sebelius also challenged ACA provisions to expand health insurance coverage through the Medicaid program on the grounds that the provisions were impermissibly coercive. States that chose not to expand Medicaid according to the law faced a potential loss of federal matching funds for all their covered Medicaid populations. Most constitutional experts did not anticipate this challenge reaching the Supreme Court because federal courts had long recognized Congress’s authority to determine how federal matching funds under Medicaid could be used. Court briefs challenging the Medicaid provisions used powerful and colorful language to argue they represented an overreach of Congress’ power, comparing the federal government’s possible take back of federal funds under the Medicaid provisions like “a pickpocket who takes a wallet and gives the true owner the ‘option’ of agreeing to certain conditions to get it back or having it given to a stranger” [10]. Such language revealed deep-seated objections to the scope of the ACA Medicaid provisions. In a surprising outcome to many court observers, the Medicaid expansion was overturned. Chief Justice Roberts joined with Justice Kennedy and three other conservative justices to invalidate the provision allowing the federal government to withhold all federal Medicaid funds to states that did not accept the law’s Medicaid expansion. Congress had in the past attached requirements and conditional terms for states to receive federal matching funds to cover the cost of their Medicaid programs. The ruling changed the meaning of the ACA Medicaid provisions, giving states the option of accepting or turning down the ACA’s Medicaid coverage expansion without the consequence of losing federal funding for their pre-ACA programs.

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Some advocates and health care stakeholders believed more than a handful of states would not expand Medicaid as a result of this ruling, at least initially. Such an outcome would undercut the ACA’s goal of near universal coverage. (About half of the ACA coverage expansion over its first decade was expected to come within Medicaid, according to Congressional Budget Office estimates.) States choosing not to expand Medicaid rejected significant federal spending, estimated to be over $700 billion during the first decade [1]. Despite the court ruling, experience suggests that nearly all states will likely choose to take up the ACA Medicaid expansion over time because the provisions create both a strong moral and economic pull. States that do not take up the ACA Medicaid expansion leave a significant portion of their uninsured population with no viable source of health insurance coverage, while their residents’ federal tax dollars fund expanded Medicaid coverage in other states. Other legal issues were raised but not settled in NFIB v Sebelius. For instance, the issue of “severability” would have come into play if the Supreme Court had struck down the individual mandate rather than uphold it. If that ruling had come to pass, then the Court also would have had to determine whether the individual mandate serves as a stand-alone provision, that is, severable from the rest of the law, or represents an integral part of the law that could not be extracted from the rest of its provisions. If deemed unconstitutional and not severable, such a ruling on the individual mandate would have led the Supreme Court to invalidate all provisions of the ACA. By upholding the mandate, the Supreme Court averted the need to provide a ruling on severability. Recently, however, the issue of the constitutionality and severability of the individual mandate resurfaced in a lower court case, Texas v. U.S [6]. In this case, the lower court struck down the ACA in its entirety after ruling that the individual mandate—modified by a Republican Congress in 2017 to have $0 tax penalty—is unconstitutional and unseverable from the full law. The case wound its way through federal courts and to the Supreme Court, recast the individual mandate for health insurance coverage as an existential element of the ACA, and put the issue of severability back on the docket of the Supreme Court [8]. A notable feature of the case is that the California Attorney General stepped in as defendant when the federal government declined to defend the law under the Trump Administration. If the mandate is struck down by the Court, most analysts believe there will be little to no impact on the health insurance market because the mandate has not proven to be as integral as anticipated. If all or part of the law is struck down along with the mandate, it will have far-reaching consequences for the health system and nearly all Americans in some way. The fourth legal question in NFIB v Sebelius related to applicability of the Anti-­ Injunction Act (AIA), which states that no legal challenge can be made of a tax until it is actually collected. In another legal twist, the Court ruled that the ACA individual mandate is not a tax for purposes of applying the AIA, even though the Chief Justice ruled the mandate functioned as a tax for purposes of Congress’ authority to impose it. Thus, the Court had two different interpretations of the individual mandate as a tax in its ruling in NFIB v Sebelius.

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Other Challenges to the ACA Other ACA challenges that have been decided by the Supreme Court focused on a range of issues, such as the constitutionality of requiring insurers to cover women’s contraceptives in the cases of Burwell v Hobby Lobby in 2014 and Zubick v Burwell in 2016, and whether federal premium tax credits for individuals seeking to purchase ACA coverage can be offered in states where the Department of Health and Human Services established the health insurance exchange, in King v Burwell [4, 7]. King v Burwell was notable because while the justices found the language for the premium tax credits to be unclear, they also thought it should be interpreted as being “compatible with the rest of the law.” In other words, the Court reasserted that in the absence of clarity in the written text of a law the full meaning of a specific provision can be determined by looking at the meaning of other related provisions in the same law. Legislative language need not be perfectly clear for the meaning of a law’s provisions to be ascertained. Court challenges have not been the only test of the ACA since its passage. Republicans opposed to the ACA continued to seek its repeal, and most Republican candidates running for election or reelection in 2016 crafted policy platforms with the goal of undoing the law via legislative repeal or executive action. Republicans who opposed the law made clear in 2016 that if their party swept an election, by winning the White House and both houses of Congress, attempts to repeal the ACA in Congress and to unwind its regulatory impact via the executive branch would be guaranteed. In 2017, with Republican control of both chambers, the ACA coverage expansions provisions faced another existential threat through a budget reconciliation bill known as the American Health Care Act of 2017. Although not successful, due to a historic decision by Senator John McCain to oppose the bill, Republicans came within one vote of overturning ACA coverage programs and funding for 20 million who had gained health insurance coverage under the law. In addition to Senator McCain, divided government, where Republicans and Democrats split control of the legislative and executive branches, has also served to protect the law from full repeal. However, divided government has not been sufficient to thwart undoing of some elements of the coverage provisions through regulations finalized by the executive branch [5]. President Trump not only supported Congressional attempts to repeal all or parts of the ACA in 2017 (with all attempts failing), his administration has used the regulatory process to rollback and limit certain policies in the law. While presidents are permitted to issue regulations that reflect their interpretation of federal statutes, the courts can once again be called upon as a check on those powers. Just as courts can be asked to review the constitutionality of acts of Congress, courts can be asked to review an administration’s actions and judge whether they are consistent with the laws, including the Constitution. Despite over 60 attempts to repeal the law in Congress and some regulatory rollbacks, the vast majority of the ACA remains in force, thanks in large part to our system of checks and balances and the role of the courts in reviewing actions by Congress and the federal government.

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Whenever Congress undertakes major legislation, like the ACA, the fate of the policy innovation remains uncertain until the law is fully implemented, accepted by the public (i.e., not repealed), and reviewed by courts. Unlike a controlled experiment whose design is set and held firm, a law can be challenged and invalidated in whole or in part by courts, modified by future acts of Congress, or repealed if public sentiment is negative (see Medicare Catastrophic Coverage Act of 1988). The initial design of a law does not necessarily remain static. Yet Congress proceeds year after year in passing legislation despite the downstream risks that its products will be changed. Most members of Congress understand that a piece of legislation is rarely perfect or free of error—especially those with complex policy innovations like the ACA. Major laws often require technical adjustments down the road to fix drafting errors or address issues that were not foreseen. Moreover, the Founding Fathers created a system whereby congressional statutes and federal regulation may be subject to independent review and validation by the courts. New policy innovations, therefore, do not remain set in stone due to the careful design of our democracy.

References 1. Buettgens MB.  The combined effect of not expanding medicaid and losing marketplace assistance. 2015. Retrieved from The Urban Institute: rban.org/sites/default/files/ publication/52736/2000223-­The-­Combined-­Effect-­of-­Not-­Expanding-­Medicaid-­and-­Losing-­ Marketplace-­Assistance.pdf. 2. Florida Attorney General v. U.S. Department of Health and Human Services, Nos. 11–11021, 11–11067 (Eleventh Circuit Court of Appeals August 12, 2011). 3. Hamilton A. n.d.. The Federal Papers, No. 78. The Federalist. Clinton Rossiter (New York: New American Library, 1961). 4. Jost T.. What do the courts have in store for the ACA? An update on health reform lawsuits. 2019. Retrieved from The Commonwealth Fund: https://www.commonwealthfund.org/ blog/2019/what-­do-­courts-­have-­store-­aca-­update-­health-­reform-­lawsuits. 5. Keith K. Back in (regulatory) action. Health Aff. 2018; Retrieved from https://www.healthaffairs.org/doi/10.1377/hlthaff.2018.05223. 6. Keith K. Texas v. United States: where we are now and what could happen next. Health Affairs. 2019. Retrieved from Health Affairs Blog. 7. Keith K. ACA litigation round-up: a status check. 2020. Retrieved from Health Affairs Blog: Following the ACA: https://www.healthaffairs.org/do/10.1377/hblog20200129.210273/full/. 8. Keith K. Supreme court to hear challenge to ACA. 2020. Retrieved from Health Affairs Blog Series: Following the ACA: https://www.healthaffairs.org/do/10.1377/hblog20200302.149085/full/. 9. NFIB et al. v Sebelius, 567 US. 519 (Eleventh Circuit Court June 12, 2012). 10. Petitioners B. o. Florida v. U.S. Department of Health and Human Services. 132 S. Ct. 2566 No. 11–400). Brief of State Petitioners on Medicaid at 44, , 132 S.  Ct. 2566 (2012) (No. 11–400). 2012. 11. Rosen MA. Why broccoli? Limiting principles and popular constitutionalism in the health care case. UCLA L Rev. 2013;61:66.

Chapter 9

The Center for Medicare and Medicaid Innovation – A Decade of Experimentation and Continued Evolution Purva Rawal

Over the last decade, the Center for Medicare and Medicaid Innovation (CMMI or the “Innovation Center”) has lived up to its charge from the Affordable Care Act (ACA) to “test innovative payment and services delivery models” [1]. CMMI was appropriated $10 billion of mandatory funding during 2010–2019, which will continue unless Congress amends the law, and these resources have been used to launch numerous models that are increasing in scope and reach. In 2016–2018 alone, CMMI announced or tested 36 models [2]. In 2019, major new initiatives were announced that stretch across the care continuum with direct contracting (DC) models that build on accountable care organizations (ACOs), primary care first (PCF) models, radiation oncology bundles, end-stage renal disease (ESRD) models, and even a low-acuity ambulance triage model. CMMI’s work has spanned Democratic and Republican administrations and Congresses, signaling bipartisan support for the entity and its mission. The most telling data to illustrate the reach of CMMI’s experimentation are the numbers of providers and patients participating in or receiving care through its initiatives. The Centers for Medicare and Medicaid Services (CMS) estimates that 26.7 million Medicare and Medicaid beneficiaries and patients with commercial insurance are or will be receiving care through a CMMI initiative [2]. These numbers are only expected to grow with CMS projecting that 25% of all Medicare fee-­ for-­service (FFS) beneficiaries  – or 11 million individuals  – could receive care through the new primary care initiatives alone [3]. Providers are also participating in CMMI initiatives in large numbers, with CMS estimating 967,800 in new payment and delivery models [2]. Last, CMMI initiatives target nearly all parts of the healthcare continuum, including payers, underscoring how the experimentation is extending into all parts of the healthcare system (see Fig. 9.1). CMMI categorizes its initiatives (which can include individual models) into seven categories (see Table  9.1). In some cases, they are focused on specific P. Rawal (*) CapView Strategies and Adjunct Assistant Professor, Georgetown University, Washington, DC, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 H. P. Selker (ed.), The Affordable Care Act as a National Experiment, https://doi.org/10.1007/978-3-030-66726-9_9

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Fig. 9.1  CMMI initiatives target full care continuum

Hospitals/ Health Systems Health Plans

Physicians

CMMI

Post-Acute Care Providers

Ambulance Providers

Home Health

Behavioral Health

Table 9.1  CMMI initiatives and models CMMI initiative Accountable care

Brief description Includes ACO and similar models that create accountability among a group of providers for a patient population; incentivizes investments in infrastructure and care delivery to create coordinated, high-quality, and efficient care Episode-based Group of providers accountable for cost and quality of care payment patients receive during a defined initiatives period (e.g., 90 days) starting with an episode of care (e.g., hospitalization for joint replacement, start of chemotherapy) Primary care Strengthen and increase access transformation to primary care to improve health and reduce system costs; develop advanced primary care practices that use team-based care, emphasize prevention, use HIT, coordinate care, and use shared decision-making with patients Initiatives administered by Medicaid– participating states for Medicaid CHIP and/or CHIP beneficiaries initiatives

Current models Medicare Shared Savings Program, Next Generation, ACO Investment Model, Vermont All-Payer ACO, Comprehensive ESRD Model

Anticipated models Voluntary kidney models

BPCI Models 2-4, BPCI Advanced, CJR, Oncology Care Model

ESRD Treatment Choices (ETC) Model, Radiation Oncology Model

CPC+, Independence at Home, Transforming Clinical Practice Initiative

Primary Care First (PCF), Direct Contracting

Medicaid Innovation Accelerator Program

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Table 9.1 (continued) CMMI initiative Medicare-­ Medicaid enrollee initiatives

Development and testing of new payment and service delivery models

Initiatives to speed best practice adoption

Brief description Focused on dual eligible populations, creating fully integrated person-centered systems of care to serve beneficiaries with high-quality, cost-effective care Local and regional partnerships to test innovations

Current models Financial Alignment Demonstration, Integrated Care for Kids Model, Maternal Opioid Misuse Model

Accountable Health Communities, Artificial Intelligence Health Outcomes Challenge, Health Care Innovation Awards (Round 2), Home Health Value-Based Purchasing Model, Maryland All-Payer Model, Medicare Advantage VBID Model, Medicare Care Choices Model, Part D Enhanced MTM Model, Part D Payment Modernization Model, Pennsylvania Rural Health Model, Rural Community Hospital Demonstration, State Innovation Model Testing models for disseminating Health Care Payment and Learning Action Network, and adopting evidence-based Hispanic Health Services best practices Research Grant Program, HBCU Research Grant Program, MDPP Expanded Model, Million Hearts Initiative, Partnership for Patients

Anticipated models

Emergency Triage, Transport and Treat Model (ET3)

ACO Accountable Care Organization, BPCI Bundled Payments for Care Improvement, CHIP Children’s Health Insurance Program, CPC+ Comprehensive Primary Care Plus, ESRD End-stage renal disease, ETC ESRD Treatment Choices, ET3 Emergency Triage, Transport and Treat Model, HBCU Historically Black Colleges and Universities, HIT Health information technology, MDPP Medicare Diabetes Prevention Program, MTM Medication Therapy Management, PCF Primary Care First, VBID Value-based Insurance Design

payment and delivery models, while others focus on populations or dissemination. CMMI has been active across all of their initiative types, with more initiatives and individual models anticipated in the future. The ACA also gave unprecedented authority to the Secretary of Health and Human Services (HHS) to expand CMMI models that are certified by the CMS Office of the Actuary to reduce costs while at least maintaining or improving quality. Only two programs have met this bar and been expanded nationally: the Pioneer

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Accountable Care Organization (ACO) program and the Diabetes Prevention Program (DPP). In its second decade, CMMI faces the next set of challenges, which include testing how models can impact or manage total cost of care and evaluating the increasing number and growing reach of often overlapping models.

A Decade of Models and Results While CMMI’s reach extends across nearly all healthcare sectors and providers, priority payment and delivery models emerge based on the agency’s emphasis on these models and provider interest in participation: ACOs, advanced primary care, and bundled or episode-of-care payments. These models have evolved considerably over the past decade – a clear illustration of how CMMI is driving the national payment and delivery reform experiment.

Accountable Care Organizations The ACA authorized the Medicare Shared Savings Program (MSSP), which remains the flagship model at CMMI, and has undergone several rounds of changes via rulemaking beginning in 2011 [4]. Most recently, CMS made significant changes to the program through the “Pathways to Success” rule that will move existing ACOs and more providers into risk-based options more quickly [5]. In 2018, there were 561 ACOs across the country, with 10.5 million Medicare FFS beneficiaries attributed to these organizations. In 2018, the MSSP generated $739.4 million in net savings, primarily through reductions in inpatient, emergency room, and post-acute care costs [6]. Over 90% of MSSP ACOs earned quality improvement reward points, and those that started in the program in 2016 and 2017 improved their performance by 27% on average in 2018 [6]. CMS noted that ACOs showed the most significant improvements in preventive health measures [6]. Multiyear results now show when quality improvement accelerates and where it can occur, as well as how sustainable savings can be generated. One of the most significant success stories from CMMI has been the Pioneer ACO program, which was launched in 2012. The program began with 32 ACOs with more sophisticated delivery systems that had the experience and capabilities to coordinate care across settings [7]. In 2015, the model was certified by the CMS Office of the Actuary (OACT) to have met the ACA criteria for expansion [8]. CMS then incorporated key features of the Pioneer ACO model into the national MSSP program, showing for the first time how experimentation and evaluation can have broader impacts on the Medicare program. CMMI also recognized that many organizations do not have the resources required to succeed in the ACO program and, in 2015, launched the ACO Investment

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Model (AIM) to provide upfront payments to support ACOs in rural and underserved areas. In 2017, 67.9% of AIM ACOs operated in rural areas, 75.6% included safety net providers, and 53.3% included a critical access hospital [9]. Second-year performance results were promising with AIM ACO per beneficiary per month costs $36.94 lower than FFS beneficiaries, resulting in 3% lower costs to Medicare [9]. At the same time, quality was maintained with some improvements seen in preventive health measures [9]. The AIM is another example of how CMMI is building on existing models to test how to expand provider participation and model penetration across the country.

Advanced Primary Care CMMI has also made significant financial and resource investments in testing and modifying advanced primary care models. Its largest effort began with the Comprehensive Primary Care (CPC) initiative, which provided care management fees and shared savings opportunities. The model was associated with a 1% reduction in spending, but no net savings were achieved after accounting for care management fees [2]. There were also no statistically significant differences on quality measures included in the program or patient experience [10]. However, evaluators concluded that over the five years in the model, participating practices did engage in transformation and improvements in care delivery, such as risk-stratified care management and improved access to and continuity of care [10]. The lessons learned from CPC led to the Comprehensive Primary Care Plus (CPC+) program, which was launched in 2017. The CPC+ program made several changes relative to CPC, including stronger care delivery and health information technology requirements and a hybrid payment to transition practices away from FFS payments. The model is significant in scope, extending across 18 regions, 3,000 practices, over 17,500 participating providers, and 1.8 million attributed beneficiaries [10]. The first year results show small differences in service use and quality, and a 2–3% increase in Medicare expenditures. However, additional savings and improvements may be seen in subsequent evaluations as care delivery and other changes take root [11]. CMMI has also announced new models to further drive primary care transformation, including the PCF and the DC models. PCF is expected to build on CPC+ with a mix of population-based payments and flat visit fees to further move primary care practices away from FFS payments. The DC model is intended to be more population-­based and will offer partial to full capitation options for participants. These models are showing how CMMI is iterating on its flagship efforts to increase the scope of models and to test capitated payment models that hold providers accountable for total cost of care. A recent analysis of 13 advanced APMs found that over half – or seven – were or would be testing partially to full capitation payment models [12].

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Bundled Payments The third major category of CMMI initiatives falls into bundled or episode-of-care payments. CMMI’s first bundled payment program, the Bundled Payment for Care Improvement (BPCI) Initiative, was launched in 2013. Learnings from this initial program informed the development of future bundled payment models such as the comprehensive joint replacement (CJR) and the BPCI advanced models. The original BPCI program reduced costs for most of the episodes included in the program due to reductions in post-acute care use; however, savings were not statistically significant and did not make measurable changes in quality of care [13]. The Oncology Care Model (OCM), which includes 175 participating practices and 10 payers, is another bundled payment initiative that is closely watched by stakeholders [14]. In the first six-month performance period, the model included 140,000 clinical episodes for 21 types of cancer [15]. Early evaluation indicates that the program is not yet producing cost savings when additional care coordination payments are taken into account, or measurable impact on quality [15]. However, given the impact of cancer on Medicare beneficiaries and costs, CMMI is continuing work in the oncology space with recently announced radiation oncology bundle and an anticipated next generation OCM when this model draws to a close. Of note, CJR was the first mandatory CMMI initiative, and was transitioned to a voluntary program under the Trump administration. However, mandatory bundles are reemerging with recently announced radiation oncology episodes where enough participants are required to evaluate a model’s impacts. Bundled payment models will continue to be a focus at CMMI, especially as more physicians and providers in specialties seek to join APMs. Health Promotion and System Transformation CMMI has also tested initiatives to support broad-scale transformation of health systems. An example of the latter includes the State Innovation Model (SIM) that provided states with a range of grants to advance multi-payer payment and delivery reform. Over 34 states received some level of grant support, but states that received testing awards implemented payment and delivery reforms on a broader scale. Evaluations found that states used the grants to support provider participation in Medicaid APMs and allowed greater accountability for high-cost populations and downside risk [16]. States did not necessarily realize savings, but improved inpatient utilization and improved care, and many models are continuing as a result of changes states made to their Medicaid programs [16]. The movement to value has opened the door to a larger conversation in healthcare about the role of social risk factors – and the social determinants of health – in health outcomes. Housing, food security, transportation, safety, and level of education and income, among other factors, influence health outcomes. As providers assume risk for quality and patient outcomes, there is a growing interest and

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imperative to address the social determinants of health to improve health status and outcomes. CMMI’s Accountable Health Communities (ACH) model is testing how identifying and addressing “health-related social needs” of Medicare and Medicaid beneficiaries by linking them to community-based services can reduce healthcare utilization and costs [17].

Second Decade of Innovation, Opportunities, and Challenges CMMI has demonstrated that providers – and plans – can engage in value-based payment arrangements, including APMs. However, the fiscal challenges facing the US health system continue to mount. First, an aging demographic will place unique pressures on the Medicare program. An estimated 20% of the US population will be over 65  years of age by 2029 [18]. Second, healthcare cost growth continues to outpace inflation and consumes an ever-increasing percentage of our Gross Domestic Product (GDP). National health spending is projected to grow at 5.5% per year for the next decade – totaling $6 trillion and 19.4% of GDP by 2027 [19]. These broader challenges make CMMI’s work even more critical.

Emphasizing Accountability and Managing Total Cost of Care While hundreds of thousands of providers and millions of beneficiaries and patients are in CMMI models, moving providers to risk-bearing models voluntarily has proven more difficult. In this second decade of testing, evolving, and hopefully expanding, successful models, CMS and CMMI are placing a greater emphasis on accountability and managing the total cost of care. Evidence of this can be seen with the changes in the MSSP ACO program that will require participants to move to risk-bearing track and introduction of partial to full capitation models such as PCF and DC. Another change has been the return to mandatory models, which started with CJR and have been proposed with other episode-based payment models to support evaluation. Mandatory models have sparked controversy, but both Democratic and Republican administrations have moved certain models in this direction.

Improving How Models Are Designed and Tested The proliferation and overlap of CMMI models make it difficult to isolate the impact of individual models on quality, outcomes, and costs. For instance, MSSP ACOs and CPC+ initiatives are operating in many of the same parts of the country, or participants in the ACO program can also be participants in CMMI’s bundled payment initiatives. In addition, regulatory requirements are also changing for many models,

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such as the MSSP ACOs, which further complicates evaluations. In essence, CMMI is conducting natural experiments – not randomized controlled trials – that require identification of comparison groups. As CMMI moves forward, it should be a priority to consider the scope of models, geographic areas where models would be tested, and how models are designed to identify a comparison group for evaluation proposes.

Building the Evidence for Expansion and Dissemination While the ACA criteria for expanding new models are simple on the surface, they have proven to be a high bar. Only two models – the Pioneer ACO and the DPP— have met the requirements. The MDPP is a structured clinical intervention for Medicare beneficiaries at high risk of developing type 2 diabetes that OACT certified for expansion [20]. The program was expanded nationally as a preventive benefit under Medicare Part B in April 2018 for eligible Medicare beneficiaries [21]. However, uptake appears to be slow with news reports indicating that only 200 beneficiaries used the program in 2018 [22]. This suggests that CMMI may also face future challenges of scaling and disseminating successful programs.

Moving Private Payers into Value-Based Payment Models CMMI was intended to use Medicare as a lever to catalyze payment and delivery reform across all payers. While private payers have lagged Medicare, there is evidence that CMMI (and other policy changes) are moving private payers into value-­ based payment models. For instance, the Health Care Transformation Task Force is a coalition of over 40 members that have pledged to have 75% of their payments in value-based arrangements by 2020. In their annual outcomes survey, they have seen steady increases toward this ambitious goal. In 2015, approximately 30% of payments were in value-based arrangements – most recently increasing to 52% in 2018 [23]. CMMI will likely continue to lead this movement across payers.

Continuing to Test and Evaluate Models Unlike other parts of the ACA, CMMI has generally enjoyed bipartisan support. There has also been more continuity with models and their design than perhaps originally anticipated across administrations and political parties. Looking forward, there are three key factors that will shape CMMI’s approach to testing and evaluating models:

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1. MACRA. The Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) created new financial incentives for physicians to participate in APMs. As a result, CMMI is under increasing pressure to create more opportunities for providers to participate in APMs to earn bonuses (or face potential negative payment reductions in other payment tracks). 2. Social determinants of health. There is growing realization in the medical community that social risk factors such as housing, transportation, food security, and safety contribute to health outcomes. This is largely driven by the movement to value where providers are held accountable for quality of care, patient outcomes, and costs. CMMI’s ACH model  – coupled with the development of more population-­based models – are indications that more work on payment and support for addressing the social determinants of health in value-based care and payment models may be around the corner. 3. New populations. CMMI has largely focused on the Medicare program and beneficiaries, but its reach is expanding to new populations with unmet needs. For instance, the Maternal Opioid Misuse (MOM) and the Integrated Care for Kids (InCK) models indicate a greater focus on high-need populations. Moving into its second decade, CMMI remains a powerful example of how bipartisan support can create the conditions for experimentation, evolution, and advancement in health policy.

References 1. Patient Protection and Affordable Care Act of 2010. Accessed 15 Oct 2019. 2. Center for Medicare and Medicaid Services, Center for Medicare and Medicaid Innovation. 2018 report to congress. 2018. Accessed 15 Oct 2019. 3. Department of Health and Human Services. HHS To deliver value-based transformation in primary care. 2019. Accessed 15 Oct 2019. 4. Federal Register. 42 CFR Part 425 Medicare program; Medicare shared savings program: accountable care organizations; final rule. 2011. Accessed 30 Oct 2019. 5. Federal Register. Medicare program; Medicare shared savings program; accountable care organizations—pathways to success and extreme and uncontrollable circumstances policies for performance year 2017. 2018. Accessed 30 Oct 2019. 6. Verma S. Interest in ‘pathways to success’ grows: 2018 ACO results show trends supporting program redesign continue. Health Affairs Blog. 2019. Accessed 21 Oct 2019. 7. Center for Medicare and Medicaid Services, Center for Medicare and Medicaid Innovation. 2018 report to congress. 2018. Accessed 21 Oct 2019. 8. CMS, Office of the Actuary. Certification of pioneer model savings. 2015. Accessed 21 Oct 2019. 9. Centers for Medicare and Medicaid Services, Center for Medicare and Medicaid Innovation. ACO Investment Model (AIM): evaluation of the first two AIM performance years. 2019. Accessed 30 Oct 2019. 10. Centers for Medicare and Medicaid Services, Center for Medicare and Medicaid Innovation. 2018 report to congress. 2018. Accessed 15 Oct 2019.

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11. Centers for Medicare and Medicaid Services, Center for Medicare and Medicaid Innovation. Evaluation of the comprehensive primary care plus initiative (CPC+). 2019. Accessed 30 Oct 2019. 12. CapView Strategies Analysis. 2019. 13. Lewin Group. CMS BPCI models 2-4: year 5 evaluation and monitoring annual report. 2018. Accessed 23 Oct 2019. 14. Centers for Medicare and Medicaid Services, Center for Medicare and Medicaid Innovation. Oncology care model. 2019. Accessed 30 Oct 2019. 15. Centers for Medicare and Medicaid Services, Center for Medicare and Medicaid Innovation. Evaluation of the oncology care model: performance period one. 2018. Accessed 30 Oct 2019. 16. Centers for Medicare and Medicaid Services, Center for Medicare and Medicaid Innovation. State innovation models round 1 model test: fifth annual evaluation report. 2018. Accessed 30 Oct 2019. 17. Centers for Medicare and Medicaid Services, Center for Medicare and Medicaid Innovation. Accountable health communities model. 2019. Accessed 30 Oct 2019. 18. Colby S, Ortman J. The baby boom cohort in the United States: 2012 to 2060. The U.S. Census Bureau. 2014. Accessed 24 Oct 2019. 19. Centers for Medicare and Medicaid Services. National health expenditure projections 2018–2027: forecast summary. 2019. Accessed 24 Oct 2019. 20. Centers for Medicare and Medicaid Services, Office of the Actuary. Certification of Medicare diabetes prevention program. 2016. Accessed October 30, 2019. 21. Centers for Medicare and Medicaid Services, Center for Medicare and Medicaid Innovation. Expanded model fact sheet. Accessed 30 Oct 2019. 22. Tahir D Medicare diabetes prevention program helps a few hundred instead of hundreds of thousands. Politico. . 2019. Accessed 30 Oct 2019. 23. Health Care Transformation Task Force. 2019. 2018 member transformation measurement reporting. Accessed 30 Oct 2019.

Chapter 10

Social Determinants: Working Upstream to Solve Health Problems Before They Start Sarah Bliss Matousek and Niko Lehman-White

If you were a resident of Cuba, your doctor would come by your house at least once a year. You would not make an appointment or necessarily want them there, but they would nonetheless keep dropping by, doggedly pursuing you for an annual checkup. During this visit, the provider would talk to your whole family, note your living situation, and ask you questions about your life. They wouldn’t be interested only in the obvious connections to your health such as diet and exercise. They would also be curious about the less obvious connections such as your home itself, your work, family, travel, and social life [1]. You can tell a lot about someone’s health by visiting where they live and engaging in a conversation. Indications of unhealthy habits (i.e., empty alcohol bottles, used ashtrays), the level of cleanliness, and interpersonal dynamics lend important clues into someone’s health. That is why these annual checkups are the cornerstone of the Cuban healthcare system. Cuba’s GDP per capita has varied between a tenth and a twentieth of that of the United States over the past 50 years [2]. The country can’t afford lots of large hospitals with new equipment. But it turns out that their healthcare delivery system, which costs a tenth as much per person as it does in the United States, is working. The Cuban infant mortality rate is 3.7 deaths per thousand births. In the United States, that rate is 5.6 [3]. Cuban life expectancy is 79.6 years. In the United States, it’s 78.5 [4]. It appears that in-depth conversations with patients and their families benefit a population’s overall health more than hi-tech equipment. Hence the Cuban saying that they “live like the poor and die like the rich” [5]. This is not to say that Cuba doesn’t have lots of problems, including within its health system. But Cuba is able to achieve a high level of success by expanding the scope of its healthcare

S. B. Matousek · N. Lehman-White (*) Day Health Strategies, Somerville, MA, USA e-mail: [email protected]; [email protected] © Springer Nature Switzerland AG 2021 H. P. Selker (ed.), The Affordable Care Act as a National Experiment, https://doi.org/10.1007/978-3-030-66726-9_10

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professionals to look further upstream, at the social issues which cause health problems. These are called “social determinants of health.”

Social Determinants: A Primer Until recently, US health providers have paid little attention to patients after they leave their facility doors. In a way, it’s as though for decades, starting long before the Affordable Care Act (ACA) was enacted, Americans have been part of a separate, long-term, large-scale social experiment, one that’s showing us the impacts of healthcare administered in isolation. But common sense tells us that health is intrinsically linked with the rest of our lives, and research tells us that most of our nation’s health is determined beyond the walls of a healthcare facility. In fact, environmental, social, behavioral, and economic factors determine upwards of 70% of health outcomes [6]. Social determinants affect health in three primary ways: through access to insurance coverage, access to healthcare services, and by affecting health outcomes directly. A single social determinant of health can affect one or more of these factors. Take, for example, race, an extremely influential social determinant of health. We can visualize this cause-and-effect chain like this (see Fig. 10.1): Fig. 10.1  The cause-and-­ effect chain of a single social determinant of health, race

Race

Coverage Access

Health Care Access

Health Outcomes

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In the United States, there are large disparities in health coverage by race. Health coverage then affects access to care, which then affects outcomes. But access to care is also directly affected by race, as are health outcomes. The disparate health outcomes we see in the United States are the result of a compounding effect of race’s influence through multiple paths. To complicate things further, race also affects other social determinants, which have their own ways of affecting health. A complex interplay of factors ultimately determines health outcomes. Take this example, in which race also affects employment prospects and anxiety, which in turn can affect each other and affect coverage, care, and outcomes (see Fig. 10.2): Here are a few example scenarios of how this can play out: • Someone has worse employment prospects because they belong to a racial minority group and experience hiring prejudice. Because they cannot find a job, they do not have access to employer-sponsored coverage and cannot afford an individual market plan without an income. This means they don’t see a doctor regularly, which means they don’t receive proper care for their diabetes and are at higher risk of complications. • Someone experiences anxiety when their teacher treats them differently because they are black. This anxiety causes the adverse health outcome of psychological stress. • Someone who is employed in a high-stress job feels pressure and anxiety because of their work responsibilities. This anxiety makes them not want to receive their regular mammogram because they don’t want to deal with the added stress of interacting with the healthcare system on their busy schedule. As a result, they are at a higher risk of developing late-stage breast cancer. Fig. 10.2  The complex interplay of the social determinants of health

Coverage Access

Race

Anxiety

Employ ment Health Care Access

Health Outcomes

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The World Health Organization defines social determinants of health as “the conditions in which people are born, grow, live, work, and age,” and these circumstances are “shaped by the distribution of money, power, and resources at the global, national and local levels.” The definition is broad, but what it’s really getting at is the fact that nonmedical factors like the neighborhood you live in can affect your health in profound ways. The US Office of Disease Prevention and Health Promotion’s Healthy People 2020 framework organizes social determinants of health into five main categories [7]: • • • • •

Economic stability Education Social and community context Neighborhood and built environment Health and health care

Peoples’ lives are a complex web of behaviors and situations that can ultimately impact their health in circuitous and sometimes perplexing ways. Literacy affects employment, which affects housing, which affects social support networks. Race affects employment, which affects social support networks. Documentation status affects location, which affects social support networks, which affects literacy, which affects employment. And all of them affect health. The best way to make an impact on health is to figure out which strands of the web to pull and how to pull them. Thoughtful interventions can create ripple effects that eventually lead to better health outcomes and have the added benefit of improving other aspects of lives. This is what the Cuban system tries to do, and finally, after decades of rising spending with little to show for it, health providers in the United States are coming around.

Examples of Social Determinants of Health Let’s explore more social determinants of health using the Healthy People 2020 framework. This is only a partial list, one that skims the surface of the incalculable ways our health is determined by social factors.

Economic Stability Employment  The income that employment generates affects nearly all aspects of our health, from what we eat to gym memberships to home security to paying for care in our mostly privatized healthcare system. Half of Americans receive health insurance through their employer, and employment status has important effects on mental health. Even the unemployed who do have health insurance are nearly twice

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as likely to delay or forego needed care because of cost (14.7%) than the employed (8.7%) [8]. Employment also has important psychological benefits.

Education Literacy  Reading and writing ability and command of spoken language are critical to effectively interacting with the healthcare system and understanding healthy behaviors. Low literacy was projected by the American Journal of Public Health to add $230 billion in healthcare costs every year [9]. Health literacy, which is understanding of words and topics related to healthcare, is also important, as is numeracy, which consists of math skills and the ability to do household budgets or choose from different health plans. Low health literacy is associated with more hospitalizations; greater use of emergency care; lower receipt of mammography screening and influenza vaccine; poorer ability to demonstrate taking medications appropriately; and poorer ability to interpret labels and health messages [10].

Social and Community Context Documentation status  Undocumented immigrants have much lower rates of health insurance, as they face eligibility barriers. However, even citizen children of undocumented immigrants often face barriers to coverage because of fear that seeking care or coverage will target the family for deportation, make them ineligible for legal status, or that they will have to pay the government back later. Race and ethnicity  Historical barriers and active racism affect health in myriad ways, from doctors being less likely to prescribe pain medication to African Americans [11] to minority groups being targeted disproportionately by fast food chains [12], to discriminatory hiring practices. Social support networks  Social life is very important to health. Some research has even suggested that it is a more important contributor than physical activity [13]. People receive social feedback about their health from their families and communities, which can be a good thing or a bad thing. Many people neglect to take care of conditions associated with stigma, such as mental health or diabetes. Others are encouraged to do so. Social supports can encourage ineffective treatments, or point people in the right direction. It can be an incredible asset to health, or a powerful hindrance. Language  Patients with language barriers are less likely to have a usual source of care and receive preventive services [14]. Although many providers try to hire bilin-

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gual staff or provide translation services, the availability of translation is not universal, and several non-English speakers experience reduced access as a result.

Neighborhood and Built Environment Location and transportation  Being able to get to places like grocery stores, banks, clinics, or YMCAs has an important impact on the ability to be active and engaged in a community, and to manage health. Location  The neighborhood someone lives in determines what kinds of resources are available for healthcare and also impacts exposure to health-related factors such as violence, pollution, and drug use. Hospitals are often built in areas where potential customers have commercial insurance, not in places where residents are covered by Medicaid, which pays lower rates, or are uninsured, in which case they might be unable to pay for the services they receive. Areas that lack adequate health resources are called medically underserved areas. Housing  Access to safe housing is essential for health. Extreme low and high temperatures have been associated with increased mortality, especially among vulnerable populations such as the elderly. Injuries occurring at home result in an estimated four million emergency department visits and 70,000 hospital admissions per year. Residential crowding is linked with tuberculosis and respiratory infections and psychological distress among both adults and children. Lead poisoning irreversibly affects brain and nervous system development, and an estimated 310,000 children ages one to five in the United States have elevated blood lead levels. Substandard housing conditions such as water leaks, poor ventilation, dirty carpets, and pest infestation can lead to an increase in mold, mites, and other allergens [15].

Health and Healthcare The ACA and social determinants of health  Several provisions of the ACA created a positive environment for addressing social determinants of health issues and testing which initiatives have the most impact. The law established the first National Prevention Council, including the heads of 17 different federal agencies that represent areas impacting health (transportation, justice, education, etc.). The Council created a National Prevention Strategy that includes tactics for shifting the focus away from healthcare for disease and toward prevention and wellness [16].

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Within the health system, payment reforms, partially incentivized by the ACA, are gradually broadening the focus of our healthcare system to look at social determinants. This is largely due to the shift toward healthcare payers holding providers accountable for patient health and healthcare costs, and even linking payments to health outcomes. The Medicare Accountable Care Organizations (ACOs) created by the ACA numbered more than 600 in 2018 with about 12 million attributed lives [17]. These groups of provider organizations working together to lower costs and improve quality of care have often accomplished this by spending resources on population health efforts to address social determinants. The result has been stronger integration of health services and community-based services that help with social needs such as housing, nutrition, and addiction treatment. ACOs are increasingly using social determinants of health data gathered about the populations they serve to target interventions for high-cost, high-need patients [18]. The last decade has seen this model replicated by state Medicaid departments, often by states exercising their right to be creative with their Medicaid dollars using Section 1115 waivers (part of the Social Security Act). Minnesota and Rhode Island implemented ACO programs for their Medicaid populations, and their programs are considered some of the best examples of health systems helping to address social determinants of health. Both states tie payments to their accountable care health systems to quality metrics that include measures related to social determinants of health. In this way, they are incentivizing the system to address these issues at the local level, but are accomplishing change at scale [19]. Some of the measures being used include the number of people referred for and receiving supplemental nutrition support, developmental screenings in the first three years of life (recognizing that many issues stem from childhood traumas), childhood and adolescent counseling rates and depression screening, and housing costs exceeding 30% of income. There are currently several accepted tools for social determinants of health measurement, with the Health Leads Screening Toolkit, the Accountable Heath CommunitiesHealth-­Related Social Needs Screening Tool, and the Protocol for Responding to and Assessing Patients’ Assets, Risks, and Experiences (PRAPARE) topping the list. In 2017, the National Quality Forum in collaboration with CMS recommended that states and health systems work to consolidate and standardize tools and metrics for social determinants of health assessment, so we expect to see the list of tools and measures to narrow [19]. Other notable ways the ACA has aimed to affect social determinants of health include funding for safety net institutions, like community health centers, funding for community-based collaborative networks, and the State Innovation Model (SIM) program, which provides considerable funding for 11 participating states to support healthcare payment and delivery system reform efforts. Many of the resulting programs have included projects that enhance the ability of healthcare institutions to link patients to social services [20].

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 he Difference Between Addressing Social Determinants T of Health and Addressing Individual Social Needs Public health professionals distinguish short-term problems requiring immediate solutions from long-term problems requiring systemic solutions by using different terminology. Many interventions have been characterized as addressing “social determinants of health” when they are really addressing individual’s “health-related social needs” [21]. Take economic instability, for example. Addressing economic instability at the social needs level might involve a social worker helping with housing or food support applications to get a person through a tough time. Alternatively, addressing an upstream social determinant of health related to economic stability might involve advocating for a policy that promotes housing or food stability more broadly. Advocates for widespread SNAP, WIC, and housing programs, for example, are working to ensure that services are available for populations rather than providing access to those programs for individuals. The graphic below describes the critical differences between interventions that address social determinants of health, social risk factors, and social needs [22].

• Economic stability: Advocate for policy that promotes housing stability SDOH

including affordability, quality, support services to protect tenancy and availability; and food security (e.g., supporting federal nutrition programs, advocating for expansion of healthy food access and nutrition education programs).

• Food and housing insecurity: Implement housing and food insecurity Social Risk Factors

screening tools in provider settings.

• Food and housing need: Refer individuals to community health workers, Social Needs

social workers, or housing advocates to help people in need completed SNAP/WIC/housing applications and/or collaborate with communitybased organizations that can provide needed resources.

Fig. 10.3  Examples of interventions across the continuum of social determinants of health (SDOH), social risk factors, and social needs

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One important reason to clarify the distinction between interventions that address individual social needs and those that address the upstream social determinants of health is that scaling successful interventions depends greatly on the intended impact. Scaling an intervention at the policy level differs significantly from interventions at the individual level (see Fig. 10.3).

Social Determinants Programs in the United States  ealth System Programs Addressing Health-Related H Social Needs The US health system has somewhat of a disconnect between public social welfare programs and health systems because the entities that financially benefit from these programs (namely, insurers) aren’t the ones who are paying for them. In countries in which the government is largely or entirely responsible for paying for healthcare, there is a clear link between investing in social determinants and saving money down the road. In the United States’ multi-factored health insurance system, the link is far less apparent. That is why programs funded by the healthcare system tend to address the more immediate health-related social needs rather than deep-rooted social determinants of health. But that’s not to say that programs funded by the healthcare system can’t make a huge impact. Here are a few examples: Boston Medical Center’s Housing Initiative Boston Medical Center, a safety net hospital located in Boston’s south end, invested $6.5 million in affordable housing for its patients, 25% of whom are homeless [23]. The investment included a loan to build a market, grants to community organizations that help families avoid eviction, and a housing stabilization program for patients with complex conditions. Although housing may seem like a strange way for a safety net hospital to spend its preciously small budget, homeless people are five times as likely to make an expensive emergency department visit. Providing the homeless with a warm, stable place to stay can save money in the long run, as it drastically improves their economic stability as well as their neighborhood and built environment.

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MANNA’s Nutrition Program In the Philadelphia area, a nonprofit organization called the Metropolitan Area Neighborhood Nutrition Alliance (MANNA) provides three healthy meals a day to patients with HIV/AIDS, chronic pulmonary disease, and cancer and who are at nutritional risk, often because of their social and community context and education. Patients who had a stable supply of healthy food had half as many hospital admissions, 37% shorter hospital stays, and a drop in monthly healthcare costs from $39,000 to $28,000 [23]. REACH’s Mammograms In Albuquerque, NM, a project called REACH worked with the local Navajo tribe to address the rising incidence of breast and cervical cancer among Navajo women. The program provided health materials reflecting their language and culture and trained local health leaders in public health topics and cancer screening techniques. It also drove the women to the hospital 45 miles away as a group so that they could receive their screenings in the comfort of their peer group—a great example of incorporating social and community context into the provision of care. Many of these programs are made possible by payment reform catalyzed by the ACA. But they aren’t tied directly to it, or dependent on it. Instead, as results are reported and awareness about the benefits of addressing social determinants of health grows, successful models are likely to spread, driven partially by a desire to make people healthy and partially by a desire to improve financial margins.

Public Programs Addressing Social Determinants of Health A number of well-known publicly funded programs address social determinants and have made an incredible difference in the lives and health of those who have benefited. SNAP One major success story has been through food stamps (now called Supplemental Nutrition Assistance Program or SNAP). Peoples’ ability to buy food is affected by their economic stability, education, social and community context, and neighborhood and built environment, and food has an enormous impact on health. SNAP benefits cost the government approximately $1,548 per year per individual, but participation in the program is associated with a $1,409 decrease in average annual healthcare costs [24].

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Public Housing Public housing provides stability in economic circumstances and neighborhood and built environment. This intervention is particularly impactful for people with complex health needs, especially severe mental illness and co-occurring substance use disorders, as they experience greater difficulty maintaining housing, including housing subsidized by the government [25]. Unfortunately, units are only available for about a third of people who qualify for them. Buying or subsidizing housing units is expensive, especially in urban areas, but pales in comparison to the cost of processing the homeless through health and law enforcement systems, which runs between $35,000 and $150,000 per person per year [26]. And while it’s nice that housing programs are more cost-effective to the taxpayer, there is evidence that they also improve health. One study in Toronto found that housing the homeless resulted in a significant reduction in alcohol-use disorders in the population who received the benefit [27]. Public Education Education does more than lead to higher paychecks, although that certainly helps with health. It is a key to enabling people to understand their own health and the health system with which they interact. And it connects people to social networks. Thus, programs that seek to improve education have evidence to support the benefit they provide to the health of individuals and populations. High school graduates live on average six years longer than dropouts. College graduates live six years longer than high school graduates [28].

Think Globally, Act Locally A three-year directive to “gather and review evidence on what needs to be done to reduce health inequalities within and between countries and to report its recommendations for action” was given to the World Health Organization’s (WHO) Commission on Social Determinants of Health (CSDH) in 2005 [29]. In 2009, the World Health Assembly passed a resolution that called on the WHO and all Member States to act on the social determinants of health. Just a few years later, actions were being taken by multiple countries to implement policies and programs to address social determinants. India fully embraced the idea, adopting policy initiatives like rural employment guarantees, food security, universal health care, education, and others to impact health equity [30]. In 2011, a total of 125 member states adopted the Rio Political Declaration on Social Determinants of Health at a WHO World Conference. In the same year, the United Nations General Assembly adopted a declaration to develop multisectoral approaches to address social determinants of health. Subsequent actions by major

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Upstream

Societal/Structural Factors Improve community conditions through laws, policies and regulations

Midstream

Social Services Address individuals’ social needs like housing and food

Health Care Provide clinical care and medical interventions Downstream “Meeting Individual Social Needs Falls Short Of Addressing Social Determinants Of Health, " Health Affairs Blog, January 16, 2019.DOI: 10.1377/hblog20190115.234942

Fig. 10.4  Social determinants and social needs: Moving beyond midstream

global organizations and individual nations largely centered around studying avenues to reduce health inequities through multisectoral policy actions. Canada has led the way, with social determinants of health being a major priority for the Federal and Provincial governments [31]. The impacts of these initiatives on the health of populations will take many years to study and understand; however, there is a common strategy that is being deployed in many countries. The strategy is to create multisectional coordinated policy efforts to address all five social determinant categories described above, often in the form of experiments, like what the United States has done with ACA-enacted programs. That these issues are now a global priority is encouraging. And as we evaluate solutions and their impact on the health of populations, we will get better at implementing successful interventions both at the policy level and at the local grassroots level here in the United States (see Fig. 10.4).

References 1. Hill F. Prevention better than cure in Cuban healthcare system. BBC News. 2015; 2. GDP Per Capita – Cuba. The World Bank 2017. 3. Mortality rate, infant – Cuba, United States. The World Bank 2018. 4. Life Expectancy at Birth – Cuba, United States. The World Bank 2017. 5. Hamblin J. How Cubans live as long as Americans at a tenth of the cost. The Atlantic. 2016; 6. McGinnis JMW-RP, Knickman JR. The case for more active policy attention to health promotion. Health Aff. 2002:78–93. 7. About Social Determinants of Health. World Health Organization.

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8. 2020 HP. Social Determinants of Health. Healthy People 2020. 9. Anne K, Driscoll DPH, Bernstein AB.  Health and Access to Care Among Employed and Unemployed Adults: United States, 2009–2010: Center for Disease Control; 2012. 10. 241 R. Crisis Point: The State of Literacy in America. Room 2412018. 11. Meghani SH, Byun E, Gallagher RM. Time to take stock: A meta-analysis and systematic review of analgesic treatment disparities for pain in the United States. Pain med. 2012. 12. Khazan O. Being black in America can be hazardous to your health. The Atlantic. 2018. 13. Nancy D, Berkman P, Sheridan SL, Donahue KE, Halpern DJ, Karen Crotty P. Low health literacy and health outcomes: an updated systematic review. Ann Int Med. 2011; 14. Julianne Holt-Lunstad TS, Layton JB. Social relationships and mortality risk: a meta-analytic review. Plos Rev. 2010; 15. Exploring the social determinants of health: Housing and health. Robert Wood Johnson Foundation. 2017. 16. Flores G. Language barriers to health care in the United States. N Engl J Med. 2006; 17. Housing and Health. Robert Wood Johnson Foundation. 18. Donkin A, Goldblatt P, Allen J, Nathanson V, Marmot M. Global action on the social determinants of health. BMJ Glob Health. 2018;3 19. Morino R. Three ways ACOs can use social determinants of health to survive, and maybe succeed: LexisNexis Blog; 2019. 20. Matulis R. Prioritizing social determinants of health in medicaid ACO programs: a conversation with two pioneering states: Center for Health Care Strategies; 2018. 21. Forum NQ. A framework for Medicaid programs to address social determinants of health: food insecurity and housing instability. Washington, DC; 2017. 22. Policy AfH. Chapter 7: social determinants of health. Sourcebook-reference for journalists and policy makers: alliance for health policy; 2018. 23. Zook KGaM. When talking about social determinants, precision matters. Health Affairs. 2019. 24. Boston Medical Center to Invest $6.5 Million in Affordable Housing to Improve Community Health and Patient Outcomes, Reduce Medical Costs. Boston Medical Center. 2017. 25. Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty N. Examining health care costs among MANNA clients and a comparison group. J Primary Care Community Health. 2013; 26. Berkowitz SA, Seligman HK, Joseph Rigdon P, et  al. Supplemental Nutrition Assistance Program (SNAP) participation and health care expenditures among low-income adults. JAMA Int Med. 2017; 27. Housing and Homelessness as a Public Health Issue. American Public Health Association. 2017. 28. Benjamin F. Henwood et al. The grand challenge of ending homelessness 2015. 29. Maritt Kirst SZ, Misir V, Hwang S, Stergiopoulos V. The impact of a Housing First randomized controlled trial on substance use problems among homeless individuals with mental illness. Drug Alcohol Depend. 2015:24–9. 30. RHAE H. The effect of educational attainment on adult mortality in the U.S. PRB. 31. WHO | The Commission on Social Determinants of Health  – what, why and how? World Health Organization. 2008.

Chapter 11

Stories of the Uninsured Rosemarie Day and Niko Lehman-White

All of the stories featured in this chapter are real, with names changed in some cases to protect identities. We would like to thank all of those who have shared their stories, and those who documented them in an effort to improve health care in the US. *** “Living in America without insurance brings with it the kind of fear that makes you avoid taking the bus because you fear catching a cold, which might turn into a respiratory infection, which could then become a stubborn pneumonia requiring an overnight hospital stay, which can cost the equivalent of several months’ rent. Because when you’re already skipping medications to feed yourself, every cough threatens such morbid calculation [1].” – Holly Wood, formerly uninsured student

There are twenty-nine million Americans who face the fear and uncertainty of being uninsured. No American wants to be sick but falling sick without insurance in America is an especially dire situation. Uninsured Americans are twice as likely to become bankrupt [2]. They are also at 40% greater risk of death [3]. America has a larger uninsured population than any other industrialized country, but the precarious situations and tragic stories of the uninsured often go unnoticed by many Americans for whom this segment of the population remains out of sight and out of mind. The Affordable Care Act (ACA) was intended to ensure that nearly everyone in the country had health insurance, yet people like Holly manage to slip through the cracks every year. Where are these cracks? And how do people end up falling through them? This chapter will address some of the many reasons why people in the United States are uninsured. This book is filled with quantitative data illustrating how effective the ACA has been in reducing the number of uninsured people, as well as where it has fallen short. But quantitative data don’t always capture the difficult choices that R. Day · N. Lehman-White (*) Day Health Strategies, Somerville, MA, USA e-mail: [email protected]; [email protected] © Springer Nature Switzerland AG 2021 H. P. Selker (ed.), The Affordable Care Act as a National Experiment, https://doi.org/10.1007/978-3-030-66726-9_11

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people like Holly face, the experiences they have, and their barriers to getting health insurance. Qualitative data complete this picture. It helps us better understand not only more straightforward issues with the insurance market, like affordability, but also the social barriers to coverage, like unstable employment and low levels of education and literacy, which stand in the way of coverage for millions. These social determinants of health are exacerbated by complex public program rules and people’s ever-shifting circumstances that, again, can be difficult to capture using traditional metrics.

Coverage Gaps Ana was the daughter of Mexican immigrants and lived in Texas. She moved from job to job, working in retail, as well as serving as a seamstress, a belly dance instructor, and a house sitter. Most of her jobs did not offer health insurance. Even though Ana had prediabetes, she wasn’t treating the condition because she couldn’t afford the $75 doctor visits without insurance. Eventually, she found a county safety net program called Hays County Indigent Care. This program was only available to patients earning less than $300 a month which meant that she would lose her coverage if she got a job and worked more than about 20 hours per month. As Ana said, “I don’t pay a dime, but I do pay a price. They want you to stay down because if you advance, you’re not worthy of that coverage [4].”

Ana’s story describes what sociologists call a “poverty trap,” where any step out of poverty is blocked by the sacrificing of important benefits. Poverty traps are created when public insurance eligibility is tied to an income cut-off. While it is the most straightforward way to make sure that public programs benefit those with the greatest needs, such targeted benefits have downsides. In Ana’s case, she was torn between obtaining needed healthcare and pursuing employment. Making things even more difficult was the fact that her mother had developed dementia and needed caretaking. So, Ana made the decision to forgo sufficient paid employment and remain poor. In most states, Ana would have been insured by Medicaid. But Ana lived in Texas, a state that did not expand the Medicaid program, and she fell into what is called the “coverage gap.” Texas does not offer Medicaid coverage to single adults; only parents, pregnant women, the blind or disabled, and the elderly are eligible. Even for those who are parents, the eligibility threshold is extremely low – parents in a family of three can make no more than $3,533 per year to qualify. Ana also wouldn’t have any viable way to pay for a health plan on the individual market, because she would have to make at least $12,140 to qualify for exchange subsidies. (This is because the original ACA expected everyone who made less than that sum to qualify for Medicaid, but this was overturned in the Supreme Court case NFIB v Sebelius.) The cheapest individual market plans are about $5,000 per year, meaning that by definition someone in the coverage gap would need to spend nearly half or more of their income on health insurance, then be faced with up to $8,200 of cost-sharing per year. Realistically, there is no way for them to afford health insurance except through a job that offers it. And those jobs are few and far between the lower one is on the pay scale.

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Coverage Churn Income cut-offs have another effect: they contribute to coverage churn. Coverage churn is when people lose, gain, or change their health insurance, often as a result of change in employment. Churn has been tied to worse medication adherence, more emergency department use, more hospitalizations, and delays in the detection and treatment of cancer [5]. Jillian became ineligible for Medicaid when she took in a roommate in her house. So, she went to her state’s health insurance exchange and found an individual marketplace plan, which was mostly subsidized. Then, a few months later, her roommate moved out, and Jillian again became eligible for Medicaid. She returned to her state marketplace website, reported her change in income, and enrolled in Medicaid. There was a slight hiccup when she was enrolled in both Medicaid and a private plan, costing her a month’s premium. But she was able to switch fairly easily between individual insurance and Medicaid using one website [6]. Not everyone is so lucky, however. Bridget became ineligible for Medicaid when she went to prison. She had been eligible because she was a parent, but lost custody of her child and, consequently, lost eligibility when she was convicted. After leaving prison, she became pregnant again but didn’t get Medicaid. She wasn’t sure if she had made an error during the registration process, if the person she spoke to at the hospital didn’t realize that pregnancy makes one eligible for Medicaid, or if the clerk failed to register her for the program for another reason [7]. In the end, Bridget did not receive prenatal treatment and had a miscarriage.

Determining eligibility for Medicaid through changes in income and family status can be tricky. Many low-income people who are eligible for Medicaid lack the social and technological resources or knowledge of the public benefit systems to keep track of and address changing eligibility status. Fortunately, some states are making this easier, with navigators who help people through the process and websites that can communicate with other government systems to help determine eligibility. But this “churning” in and out of insurance can make it very difficult to maintain continuous care.

Citizenship Status The question of eligibility for public coverage programs like Medicaid is perhaps most confusing for families whose members are not US citizens, especially if they are undocumented. Lisa grew up as an American citizen in a mixed-status family: Her parents were undocumented but she, being born in the US, was a citizen. Enrolling her in Medicaid was a difficult decision for her family, who had concerns about having to pay the government back for Medicaid, or that accepting government assistance would put them on a list that would prevent them from ever being naturalized as citizens [8]. The fact that neither of these beliefs were true was inconsequential. Families across the country have misunderstandings about the program rules and often receive false or misleading information about eligibility. As a result, many eligible people are left uncovered. Fortunately for Lisa, her family decided to enroll her despite the perceived risk.

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Work Requirements As if Medicaid eligibility weren’t confusing enough, some states are pursuing Medicaid work requirements, in which residents must demonstrate that they are working, in school, or otherwise unable to work in order to remain covered. The few states which require people to report working in order to remain eligible for Medicaid have shown particularly high churn rates. Nannette is one such example. Nannette lived in Arkansas, the first state to impose work requirements in its Medicaid program. She found out about it through a notice she received in the mail but was unconcerned—she was employed at a restaurant and figured she could simply follow the instructions in the notice and keep her coverage. Instead, she got the full bureaucracy experience. Nannette tried to enter her information online but the website on her letter was a voter registration page. She navigated through multiple menus and created an account but ultimately couldn’t figure out how to register. She tried to fax her information in, but the fax didn’t go through. She tried calling but got a voicemail. She even traveled to the Department of Human Services, but nobody was there. Eventually she gave up and became one of the Arkansas residents who lost their coverage because of the program [9].

It turns out that 75% of those required to report hours in Arkansas’ work requirements program failed to do so, even though the vast majority were working, in school, or doing another activity that was supposed to keep them safe from dropped coverage. There have been multiple court challenges to these state-imposed Medicaid work requirements, and a federal judge has halted their implementation while the cases are working their way through the courts. Fortunately, some states are making the Medicaid eligibility and enrollment process easier. One way they do this is called Express Lane Eligibility, in which Medicaid uses data from other agencies like the state department of revenue, Supplemental Nutrition Assistance Program (SNAP), Temporary Assistance for Needy Families (TANF), Head Start, and the National School Lunch Program. Instead of relying on people to sign up, they use existing data to automatically enroll them.

Being Uninsured Affects All Income Levels Many middle- and upper-income people are affected by the same issues described above, including churn and income eligibility limits. Churn is not exclusive to Medicaid and other means-tested health insurance  – it is something most people experience when they change jobs. Lindsay had a job working at a nonprofit but lined up a better position at another nearby one. Her last day was April 26th, then she flew home to visit her parents for a week before starting the new job on May 3rd. Unfortunately, her insurance didn’t kick in until July 1st because she had unknowingly missed an internal deadline. Lindsey went without insurance for two months. During this period, she didn’t see her therapist because she couldn’t afford

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to pay for visits out of pocket and was discharged from therapy. Being discharged meant her mental health services would stop renewing her prescription, so she went off her antidepressants for two months. She was able to resume her treatment only after her new insurance kicked in.

Another major way that middle- and upper-income people can be uninsured is by choosing to “self-insure,” which means they take the full risk of paying for their health care – they pay for all their health care expenses out-of-pocket, rather than paying premiums. Unfortunately, many of these people do not have the resources to cover a catastrophic health event, so they aren’t truly self-insured. This is common among those who earn just enough to no longer qualify for subsidies in the individual market. Subsidies are only available to those who earn less than 400% of the Federal Poverty Level (FPL), ($48,560 for a single person and $83,120 for a family of three). The average health plan for an individual costs about $7,344 per year, varying by factors like age, location, network, and cost-sharing. Depending on these factors, unsubsidized premiums can take up a quarter of one’s income, and sometimes more [10]. This is especially difficult for older people, who can legally be charged up to  three times as much for premiums as their younger counterparts. Many people, faced with this enormous expense, decide they would rather go without health insurance and hope for the best. Cate and her husband did not have access to employer-sponsored health insurance, and their income was too high to qualify for subsidies. They looked at the numbers and realized that they would have to spend more than their monthly mortgage payment for their health insurance premiums. So, they decided to “self-insure.” They were healthy and would take their chances and pay for their healthcare out of pocket only when they needed it. Cate worried about what would happen if a family member had an unexpected high medical expense. But she also knew that buying an insurance plan for her healthy family was far more likely to cost her money rather than save it. When Cate became pregnant, however, the value equation changed, and she purchased a plan on the exchange.

Being Underinsured While more attention needs to be paid to the problems of the uninsured, the underinsured in the United States are also placed in a precarious situation. Being underinsured means you spend at least 5–10% of your income on cost-sharing like deductibles and copays (depending on how wealthy you are). You’re covered, but not very well. Over 40 million people in the United States are underinsured and the number is growing [11]. To help address underinsurance, the ACA set out-of-pocket maximums for health plans which limit the amount you must pay in any year for cost-sharing. The maximum limit grows annually and was $8,200 in 2020. This provision went a long way in reducing the burden of underinsurance, but it still persists, especially in health plans that are noncompliant with the ACA. Health plans sold in the individual market that are noncompliant with the ACA are known as Short-Term Limited Duration Insurance (STLDI). They are minimally

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regulated and usually offer inadequate coverage, frequently excluding or capping expenditures on things like prescription drugs, maternity care, and serious illnesses. Their availability has been expanded by the Trump administration as a more affordable health insurance option. However, they are fraught with problems that most consumers are not aware of. For example, despite the fact that the ACA outlawed preexisting condition rejections, they still exist in plans that are being sold outside of ACA exchanges, such as STLDI. These are the only types of plans still legal in the United States in which you can be denied coverage or charged more because you have a preexisting condition. Jane and her husband were self-employed and bought a short-term health plan (STLDI) because it was a more affordable health insurance option than ACA-compliant coverage. In May 2018, Jane’s gastroenterologist discovered a polyp during her colonoscopy, requiring surgical removal. Unbeknownst to her, Jane’s STLDI plan, which expired at the end of the month, would no longer cover her surgery if renewed because it considered the polyp a “pre-existing condition.” Jane had to pay out of pocket, leaving the family $68,000  in debt [12].

Preexisiting Conditions Before the ACA The ACA’s protections for people with preexisting conditions are some of the law’s most popular provisions. Before the ACA, Americans with illnesses (and even some who did not) were dealing with a private insurance system that simply did not want to cover them. Jerry left the safety of his old job to become an entrepreneur. But pursuing his dream came at a cost. He was able to keep his family on his previous employer’s health insurance through COBRA, but this expired after 18 months. When it expired, his wife was uninsurable because she had been recently treated for cervical cancer and was also pregnant. Jerry had to stop building his business and took a job for which he was overqualified because the job had health insurance. This turned out to be the right choice for his family – his newborn son needed ten days of care in the NICU after his birth, and had the family not been insured they would have gone bankrupt [13].

Preexisting condition discrimination caused, in Jerry’s case, something called job lock. Jerry had to postpone his entrepreneurial dreams and take a less fulfilling job so that he could get health insurance for his family. Job lock didn’t only harm Jerry, it is also bad for the economy. To avoid becoming uninsured, people work jobs that aren’t well-suited to their skills, abilities, and ambitions, and society is less productive as a result. The most sinister way that preexisting condition discrimination played itself out was through a little-known practice called rescission. Rescission occurs when a person’s insurance company combs through their health history as soon as they get seriously ill to find an excuse to drop their coverage. It was perhaps the most shocking and devastating insurance industry practice before the ACA. Just ten short years ago, many Americans who paid for their insurance and believed they were covered

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were finding that as soon as they come down with an illness that generated expensive medical claims, they were on their own. Otto applied for insurance in 2003 and on his application indicated that he had kidney stones and smoked. The insurance company accepted the application. He was insured and paying premiums to them for a year before he received the devastating news that he had Stage IV non-Hodgkin’s-type Lymphoma. Otto underwent high-dose chemotherapy to prepare him for a stem cell transplant, but halfway through treatment, his insurer notified him that they had cancelled his policy. His insurer rescinded the coverage back to before he was diagnosed with cancer but didn’t reimburse him for the premiums he had already paid. In addition, they would cover neither the chemotherapy he had already received nor the stem cell transplant. The reason they cited was that Otto had received a CT scan in 2000 which showed a small aneurysm and insignificant gallstones. These findings had never been revealed to Otto because of their insignificance and he had never experienced symptoms related to them, yet his insurer claimed he had lied on his application and used this as justification to rescind his policy [14].

Twenty-Eight Million Americans Are Uninsured The ACA went a long way toward covering more Americans, but the country is still far from having universal coverage. When President Obama signed the law on March 23, 2010, there were 47 million uninsured Americans. In 2018, there were 28 million. Paul was one of the 20 million Americans who were able to get insurance because of the ACA. He was born with a medical condition that required him to have nine kidney surgeries before he turned five. This was before the law was passed, so his preexisting condition made him uninsurable and with no way to pay for a needed $79,000 kidney transplant. In 2008, he was diagnosed with late-stage kidney failure, but managed to hold on until he was finally able to obtain insurance after the ACA was passed. A few years later, Paul had a son who also had a kidney condition and needed surgery at a young age [15]. But thanks to the ACA, Paul’s son will never have to go through what he went through, nor will millions of others.

Nonetheless, a growing number of Americans still face the possibility, every day, of bankruptcy and completely avoidable illness or death. They include the wealthy, the middle class, and the poor, the employed and the unemployed. They include people from urban and rural areas, as well as every state in the country. Most Americans want to be insured, and thanks to the ACA egregious insurance market practices like rescission are now outlawed. But our national experiment continues, and the difficulties that many people have with obtaining and maintaining health insurance coverage persist. Whether the problem is affordability for people like Cate, a confusing public insurance system like the one Bridget experienced, or health plans with inadequate coverage like the one Jane bought, the United States will never be able to achieve universal coverage unless coverage is made more seamless and affordable for all. ***

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Citations for individual interviews: Holly: Wood, Holly, “Unless You’ve Lived Without Health Insurance, You Have No Ideas How Scary it is,” Vox, June 22, 2017, https://www.vox.com/first-­ person/2017/3/14/14907348/health-­insurance-­uninsured-­ahca-­obamacare. Ana, Bridget, Lisa, Cate: Mulligan, Jessica M. & Castañeda, Heide, Unequal Coverage: The Experience of Health Care Reform in the United States, (New York: New  York University Press, 2018). Jillian: Andrews, Michelle, “Shift in Earnings for Consumers Near Medicaid Line Can Threaten Coverage,” Kaiser Health News, April 7, 2015, https://khn.org/news/ shifts-­in-­earnings-­for-­consumers-­near-­medicaid-­line-­can-­threaten-­coverage/. Nannette: Hardy, Benjamin, “Locked out of Medicaid,” Arkansas Times, November 19, 2018, https://arktimes.com/news/cover-­stories/2018/11/19/locked-­out-­of-­ medicaid-­2?oid=25890378. Jane: “Senate Bill 35 – Short-term, Limited Duration Health Plans Testimony - Opponent Senate Financial Institutions and Insurance Committee,” Community Care Network of Kansas, February 6, 2019, http://www.kslegislature.org/li/b2019_20/committees/ctte_s_fin_inst_ins_1/documents/testimony/20190206_04.pdf. Jerry: “Pre-Existing Condition Stories,” Protect Our Care, June 29, 2017, http://protectourcare.us/stories/pre-­existing-­condition-­stories/. Otto: “Hearing Before the Subcommittee on Oversight and Investigations of the Committee on Energy and Commerce,” June 16, 2009, https://www.govinfo.gov/ content/pkg/CHRG-­111hhrg73743/html/CHRG-­111hhrg73743.htm. Paul: Paul Gibbs, Utah, FAMILIESUSA, https://familiesusa.org/stories/paul-­gibbs-­utah/.

References 1. Wood H. Unless you’ve lived without health insurance, you have no ideas how scary it is. Vox. 2017;22. https://www.vox.com/first-­person/2017/3/14/14907348/health-­insurance-­uninsured-­ ahca-­obamacare. 2. Keshner A.  This all-too common life event can double your risk of filing for bankruptcy. MarketWatch. 2019;2. www.marketwatch.com/story/this-­all-­too-­common-­life-­event-­can-­ double-­your-­chances-­of-­bankruptcy-­2019-­08-­07.

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3. Wilper AP, Woolhandler S, Lasser KE, McCormick D, Bor DH, Himmelstein DU.  Health insurance and mortality in US adults. Am J Public Health. 2009;99(12):2289–95. 4. Mulligan JM, Castañeda H.  Unequal coverage: the experience of health care reform in the United States. New York: New York University Press; 2018. 5. Johnson T.  Congress reintroduces bill addressing Medicaid ‘churn,’ a major issue for health plans. Gorman Health Group. 2017. www.gormanhealthgroup.com/blog/congress-­ reintroduces-­bill-­addressing-­medicaid-­churn-­a-­major-­issue-­for-­health-­plans/. 6. Andrews M. Shifts in earnings for consumers near Medicaid line can threaten coverage. Kaiser Health News. 2015. khn.org/news/shifts-­in-­earnings-­for-­consumers-­near-­medicaid-­line-­can-­ threaten-­coverage/. 7. Unequal Coverage, p.157. 8. Unequal Coverage, p.43. 9. Hardy B. Locked out of medicaid. Arkansas Times. 2018. https://arktimes.com/news/cover-­ stories/2018/11/19/locked-­out-­of-­medicaid-­2?oid=25890378. 10. Benefit Breakdown: Beware the Subsidy Cliff. Quotebroker. 2013. www.quotebroker.com/ benefit-­breakdown-­beware-­the-­subsidy-­cliff/. 11. Collins S, et al. How well does insurance coverage protect consumers from health care costs? 2017. www.commonwealthfund.org/sites/default/files/documents/___media_files_publications_issue_brief_2017_oct_collins_underinsured_biennial_ib.pdf. 12. Senate Bill 35  – Short-term, Limited duration health plans testimony  - opponent senate financial institutions and insurance committee. Community Care Network of Kansas. 2019. http://www.kslegislature.org/li/b2019_20/committees/ctte_s_fin_inst_ins_1/documents/testimony/20190206_04.pdf. 13. Pre-existing condition stories. Protect Our Care. 2017. http://protectourcare.us/stories/pre-­ existing-­condition-­stories/. 14. Hearing before the subcommittee on oversight and investigations of the committee on energy and commerce. 2009. https://www.govinfo.gov/content/pkg/CHRG-­111hhrg73743/html/ CHRG-­111hhrg73743.htm. 15. Paul Gibbs, Utah, FAMILIESUSA. https://familiesusa.org/stories/paul-­gibbs-­utah/.

Chapter 12

Can Fifty-One Laboratories Cure What Ails the Individual Health Insurance Markets? Rosemarie Day and Niko Lehman-White

The United States’ individual health insurance markets have long been fraught with problems. Before the Affordable Care Act (ACA), these markets were almost entirely regulated by states, the vast majority of which did not protect people with preexisting conditions. In addition, consumers went separately to brokers, agents, and insurance companies to buy their health insurance plans, making it difficult to comparison shop and often leading to confusion about what was covered. One of the goals of the ACA was to fix these problems, and a key measure of its success has been how well the individual market has fared since. The ACA has allowed consumers to enjoy more protections overall, as well as a more convenient shopping experience through its online exchange marketplaces. But prices, especially for those who are ineligible for subsidies, have continued to be a barrier to many. Soon after the law created the online marketplaces, both sellers and buyers on these platforms went on a turbulent ride, with some large national insurers initially underestimating the risk of enrollees and losing billions of dollars, which they then recouped by drastically raising premiums, only to realize in 2019 that they had gone too far and needed to lower them again. The ACA increased federal involvement in states’ individual health insurance markets. Yet the success of these markets remains largely determined by state regulatory choices and local market dynamics, in part because the Trump administration subsequently weakened the federal government’s role. Although unsuccessful in its attempts to repeal the ACA, the Trump administration found other ways to undermine the law, including slashing navigator budgets, eliminating individual mandate penalties, allowing more sales of unregulated sub-standard insurance plans, eliminating cost-sharing reduction payments, and shortening the open enrollment period. State regulators are increasingly realizing the onus is on them to ensure their individual health insurance market is healthy and affordable. R. Day · N. Lehman-White (*) Day Health Strategies, Somerville, MA, USA e-mail: [email protected]; [email protected] © Springer Nature Switzerland AG 2021 H. P. Selker (ed.), The Affordable Care Act as a National Experiment, https://doi.org/10.1007/978-3-030-66726-9_12

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Unfortunately, “affordable” is probably the last word anyone would choose to describe individual market plans. But states have been willing to experiment with ways to build affordable and stabilized individual insurance markets, and each time they do, they expand the knowledge base of what works, and what doesn’t. In fact, that is one of the key benefits of having states regulate their insurance markets— they can act as laboratories to figure out what’s effective, as they do in numerous other policy spheres. These state experiments can then be tweaked and replicated elsewhere. Over the years, we have seen that there are three important characteristics of a stabilized health insurance market. The first is a large risk pool with a good balance of healthy and sick people. The second is multiple participating insurance carriers. And the third, which is the most important for consumers as well as the most politically salient, is steady premiums. These characteristics are closely intertwined: a larger and healthier risk pool means less risk for insurers, which means more carriers are willing to participate in the markets, which tends to keep premiums lower for consumers. Conversely, spiking premiums means a sicker risk pool, which means more risk for insurers, which leads to even more spiking premiums (this is known as a “death spiral”). This chapter will explore the most important policy levers states can use to promote market stability and thereby improve health insurance affordability and increase the number of insured residents.

Switching to a State-Based Marketplace One way for states to stabilize their markets is to establish their own health insurance exchanges. Every state must offer a subsidized individual marketplace (also known as a health insurance exchange) to residents, but there are different options for how to provide it. Some run their own state-based marketplace (SBM) independently of the federal government—they conduct their own marketing and operate the website and call center platforms through which plans are sold (Fig.  12.1). Others use the federally facilitated marketplace (FFM) website platform known as healthcare.gov for which they pay a fee. Some states use a combination of the two. Although relatively few states currently run their own subsidized marketplace, a combination of factors is making this option more appealing. States have to pay fees to use the federal platform (calculated as a percent of total premiums): FFM states will pay 3% of premiums to use the platform in 2020, and SBMs using the platform and partnership states will pay 2.5% [2]. While these fees have been reduced by half of a percentage point from previous years, rising premiums still mean that fees paid to the federal platform rise in tandem, since they are paid on a percentage basis. And since the FFM under the Trump administration has reduced its services by cutting back on outreach and shrinking the open enrollment period, even with the fee reduction, many states are frustrated, feeling they are getting less value for their payments. Moreover, freeing up these federal fee payments provides extra resources that states can use to stabilize their markets. For example, since SBMs conduct their own

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Fig. 12.1  As of August 2019, 12 states run their own marketplaces and platform, 4 run their own marketplaces but use the federal platform, 6 use a partnership model, 1 runs its own small business health options (SHOP) marketplace but uses the federal individual platform, and twenty-eight rely solely on the federal platform [1]

marketing and outreach and set their own budgets, they can use their freed-up resources for enhanced outreach efforts to increase enrollment. SBMs can also customize policies to meet the needs of their constituents rather than having to go along with the “one-size-fits-all” approach of the federal government. For example, FFM states have an annual open enrollment period from November 1 to December 15 (shortened under the Trump administration from its original length, which ran into late January) [3]. However, SBMs have the freedom to determine their own open enrollment periods, and six states allow sign-ups through January [4]. SBMs also have access to enrollment data—this information can be used for targeting their marketing efforts and is not available to non-SBM states. Evolving technical capabilities are also making SBMs more viable. Early exchange marketplaces had issues with eligibility and enrollment systems, causing frustration among consumers. But exchanges learned from these mistakes, and exchange operators, which are the private companies that provide the technical infrastructure underlying exchange marketplaces, have grown more sophisticated. Being able to rely on tested vendors and learn from other states’ experiences has made running an SBM far more reliable and less risky than it was in past years. High fees and fewer federal services, combined with improved SBM efficiency and lower operating costs, are changing the value equation for state marketplaces. Administrators at Nevada Health Link, the marketplace for the state of Nevada, estimated that it would cost $13.2 million to continue to operate on the federal platform in 2020, and so they have decided to run their own marketplace at a cost of $5.1 million [5]. Likewise, Pennsylvania and New Jersey announced in 2019 that they plan to switch to running their own SBMs, and several other states are exploring this option as well. This cheaper option is also yielding better results. Over the past three  years, SBM enrollment grew 2.4% while their counterparts’ shrunk 13.5% (Fig. 12.2) [6].

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SBM vs. Non-SBM Enrollment (thousands) 14,000 12,000 10,000 8,000 6,000 4,000 2,000 -

9,720

9,202

8,744

8,412

2,962

3,014

3,007

3,033

2016

2017

2018

2019

SBMs

Non-SBMs

Fig. 12.2  State-based marketplaces have increased enrollment since 2016, while non-SBMs have experienced a decrease

(Non-SBM models include state-based marketplaces on the federal platform, statefederal partnerships, SHOP/individual marketplace split, and full reliance on the FFM.)

Establishing a State Reinsurance Program Another important policy lever that states can use to stabilize their individual marketplace is to establish a state reinsurance program. Reinsurance programs are pools of funds that reimburse health insurers for large claims, shielding them from risk and allowing them to offer premiums at a lower rate. According to the Center on Budget and Policy Priorities, a $100 million reinsurance program should be able to reduce premiums by approximately 10% in a state where premiums total $1 billion (a smaller size state). Reinsurance programs also increase enrollment (and thus the size and health of risk pools) and encourage insurers to participate in the individual market by reducing their risk [7]. Reinsurance is particularly helpful for people who purchase individual market plans without a subsidy (which is approximately 40% of individual marketplace purchasers: 10% purchase plans through health insurance exchanges and don’t meet the income eligibility criteria, and up to 30% purchase plans off the exchange where subsidies are not available) [8]. Many of these people are middle-income people and can struggle to afford health insurance; some can pay 23% of their income or more for an averagepriced plan [9]. Moreover, there are people who have remained uninsured who might purchase through the individual market if it were more affordable (Fig. 12.3). In order to implement a reinsurance program, states must submit what’s known as a “Section 1332 waiver” to the Center for Medicare and Medicaid Services (CMS) [11]. These waivers, authorized by section 1332 of the ACA, allow states to waive requirements of the law in order to “pursue innovative strategies for providing

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$1,200 Subsidy Cutoff ($48,560 income)

$1,100 $1,000

25%

$900

21%

Lowest Cost Plan Premium

$800

20%

19% 17%

$700 16%

15%

$600 $500 $400 8% $300

10%

8%

6% 5%

$200 $100

8%

Lowest-Cost Plan as Percent of Income

23%

5%

3%

0%

$0

$20K $25K

$30K

$35K

$40K

$45K $50K Income

$55K

$60K

$65K

$70K

Fig. 12.3  Single Americans of age 60 and over who make just over 400% FPL have to pay, on average, 23% of their income to purchase the cheapest silver plan available. Americans in this category at age 40 would pay 11% of their income, and at age 27 would pay 9% [9]

their residents with access to high quality, affordable health insurance while retaining the basic protections of the ACA.” There are restrictions, however; the states must provide equally comprehensive coverage to a comparable number of state residents, and not increase the federal deficit [12]. Section 1332 waivers are one of the most important ways in which states can experiment with their individual markets, and when successful (as many reinsurance programs have been), they serve as evidence of a path forward for other states. As of 2019, reinsurance programs have been approved in eleven states (Alaska, Colorado, Delaware, Maine, Maryland, Minnesota, Montana, New Jersey, North Dakota, Oregon, and Wisconsin) [13]. The Trump administration has demonstrated that it is willing to approve such waivers, and Seema Verma, head of CMS, called these programs “an important tool to reduce premiums [14].” The pace has picked up: Eight reinsurance waivers were approved in 2018 and 2019 [14]. A 2019 analysis found that reinsurance programs reduced premiums by an average of 19.9%, at an average cost of $141.5 million [15]. Program costs borne by states have varied from miniscule (2.5%) to significant (51.7%) (Fig. 12.4).

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AK (2017)

Percent Change in Average Individual Market Premiums -34.7%

$58.5M

$1.5M

2.5%

14,200

MN (2018)

-20%

$131M

$140M

51.7%

106,500

OR (2018)

-6%

$54.5M

$35.5M

39.4%

143,200

ME (2019)

-9.4%

$65.3M

$27.7M

29.8%

62,100

MD (2019)

-43.4%

$373.4M

$88.6M

19.2%

181,500

NJ (2019)

-15.1%

$180.2M

$143.5M

44.3%

331,000

WI (2019)

-10.6%

$127.7M

$72.3M

36.1%

203,000

State Average

-19.9%

$141.5M

$72.7M

31.9%

148,800

Total

--

$990.6M

$509.1M

--

--

State (Date of Enactment)

Federal Pass-Through Funding (millions)

State Reinsurance Funding (millions)

Percent of Program Cost Born by State

Enrollment in Year of Enactment

Fig. 12.4  Estimated individual market impact of state reinsurance programs in year of enactment [15]

 estricting the Sale of Individual Health Insurance That Is R Non-compliant with the ACA After the Trump administration loosened certain restrictions, two types of plans reemerged in the individual health insurance market: Association Health Plans (AHPs) and Short-Term Limited Duration Insurance (STLDI). AHPs and STLDI are cheaper alternatives to individual marketplace plans, and they may draw healthy people out of the ACA-compliant individual market risk pools. Because the rules are new and being challenged in court, neither AHPs nor STLDI has attained significant market penetration, although that may change with time and depending on certain legal and regulatory outcomes. States have the opportunity to ensure that the individual marketplace health insurance plans sold in their state comply with the original intent of the ACA, thereby mitigating the potential effects of the Trump administration’s loosened restrictions. AHPs are sold by employers who band together to purchase an insurance plan similar to those purchased on the large group market. In the past, they had to be linked by a common interest beyond providing health insurance benefits, but the Trump administration issued a rule allowing AHPs to be created for the sole purpose of providing health insurance. Some experts are concerned about this new development because in the past, certain AHPs had issues with their reserve funding and failed to pay out claims for which they were responsible. These plans also do not have to adhere to the ACA’s “Ten Essential Health Benefits” requirements for plans sold on the individual market, but they do have to adhere to the “minimum value” large group plan requirements, which include a minimum 60% actuarial value and substantial coverage for inpatient and physician services [16]. These standards aren’t quite as robust as the essential health benefits but do lend themselves to

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quality insurance and provide an affordable option for small businesses. Rules regarding AHPs have been embroiled in a legal challenge anticipated to be heard in the DC appellate courts. If the courts side with challengers, AHPs will revert to their old rules [17, 18]. States can regulate AHP insurance via a variety of policy options, including prohibiting self-funded AHPs, requiring AHPs to be formed for a purpose other than providing insurance, “look through” laws to examine AHPs and determine their appropriate insurance classification, prohibiting sole proprietors from joining, and requiring AHPs to meet the same licensure and financial standards as commercial insurers [19]. Short-term limited duration insurance (STLDI) is even less compliant with the ACA (and therefore less robust) than AHP insurance. These plans were originally intended to fill temporary gaps in insurance coverage, but the Trump administration released a rule allowing people to purchase them for a full year’s time. These plans usually don’t cover certain essential health benefits like pregnancy and prescription drugs. They also feature deductibles as high as $25,000 [20]. These shortcomings with plan designs are sometimes deceptively marketed, leading to potentially big surprises for policyholders when they fall ill. Another drawback of STLDI plans is that they have very low medical loss ratios, meaning they pay out around half to 60% of their premiums in claims, whereas ACA-compliant plans are required to pay out 80%. This means that despite their low premiums, their value for the dollar is relatively poor. California, Massachusetts, New Jersey, and New York have already banned the sale of STLDI plans. But there are less extreme policy options that states can pursue. These include limiting plan duration to something much less than 12 months, outlawing discrimination based on preexisting conditions, requiring coverage of certain benefits, requiring minimum medical loss ratios, limiting who can enroll in plans, or requiring consumer disclosures [20]. States can choose any of these options or combine several for greater impact.

Enacting State Individual Mandates States have the ability to enact their own individual mandates requiring residents to buy health insurance, which is an important tool to maintain a balanced risk pool in the individual insurance market. Congress eliminated the federal individual mandate penalty at the end of 2017, which went into effect in January 2019. (Technically, the penalty is still in existence, but it is now $0.) The rationale was that the government doesn’t have the right to force its citizens to make purchases and was part of a larger Republican strategy to dismantle the ACA. Without the penalty, there was concern that healthy people would stop buying insurance, triggering a death spiral in the market. The actual drop in enrollment was less dire than predicted (the CBO was estimating a 10% drop and the actual drop was 3%) [21]. However, the concern persists, and some states are considering establishing their own penalties.

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Only a few states have individual mandates (also known as “shared responsibility provisions”) in place. Massachusetts has had an individual mandate since 2006, when Governor Romney included it as part of his health reform legislation. California, New Jersey, Rhode Island, Vermont, and Washington, DC, passed their own individual mandate laws, which closely resemble the eliminated federal penalty law [22]. Connecticut, Hawaii, Minnesota, and Washington states are considering or are in the process of passing them [23]. Increasing enrollment and improving the overall health of individual market risk pools are the most commonly known and cited reasons for establishing an individual mandate, but it isn’t the only benefit. According to a report by the Brookings Institute, such laws can help limit the spread of substandard coverage like STLDI [22]. States can also use data about their uninsured to conduct outreach, including providing personally relevant information such as subsidy eligibility to encourage people to sign up. The mandate penalty can also ensure the flow of federal funding into a state in the form of individual market subsidies, and the penalties themselves serve as a source of revenue (albeit relatively small) that states can use to offset the cost of other health insurance marketplace initiatives.

Expanding Subsidies States can improve the stability of individual market health insurance by offering additional subsidies which “wrap around” the Advance Premium Tax Credit (APTC) subsidies provided by the federal government (see Table 12.1). Massachusetts and Vermont currently provide such wraparound subsidies to people with incomes up to 300% of the federal poverty level (FPL) (APTC subsidies go up to 400% FPL), making individual health insurance even more affordable for their lowest-income residents [24]. APTC subsidies have mostly shielded those eligible for them from premium increases because the credits are attached to the prices of local plans. Those who are ineligible for APTCs, on the other hand, have borne the full brunt of these premium increases, and attention has increasingly turned to those just out of eligibility range who pay a large percentage of their income on premiums. California is planning to provide subsidies for people with incomes up to 600% FPL for plan years 2020 and 2021, and Washington State is implementing a similar program for people with incomes up to 500% FPL. This population has been abandoning the individual marketplace in the face of rising premiums. But they will also be more likely to re-­enter it when premiums become more affordable. Table 12.1  Federal poverty income level (%) compared to a family of three’s annual income ($) Federal poverty level 100% 200% 300% 400% 500% 600% Annual income (family of three) $21,330 $42,660 $63,990 $85,320 $106,650 $127,980

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Implementing a Public Option Buy-In Program Public options are government-sponsored insurance plans that the general public can purchase, which is why these plans are also sometimes called “buy-in programs.” Medicare and Medicaid are public insurance programs that are currently only available to people who meet age, income, or disability-based criteria. But a public option plan can be purchased by anyone; a billionaire like Bill Gates could be on Medicaid public option plan if he wanted to. The public option is a potential solution to increase the number of affordable insurance plans in a market, but it has not yet been tested. The idea was included in early versions of the ACA but was later removed from the bill in order to appeal to moderate lawmakers. However, due to a number of 2020 Democratic presidential candidates proposing the idea, the concept of Medicare buy-in has increasingly entered the public lexicon if not the actual lawbooks. Many conservatives criticize buy-in systems, saying the government’s unfair market advantage could lead to a single-payer system; many liberal proponents laud buy-ins for the same reason. Although proposed national buy-in programs built on Medicare are more well known, states can create their own programs, built on their Medicaid infrastructure. In March 2019, the state of Washington passed the country’s first public option bill (Nevada passed one in 2017 but it was vetoed)—it is scheduled to go live in 2021. The plan will be administered by the state’s Medicaid agency and offered by private insurers, and it will be sold on its state-based marketplace similar to Medicaid Managed Care. The rates paid to healthcare providers are capped at 160% of Medicare levels [25]. They will also improve consumer choice, an especially important benefit to those who live in rating areas with only one insurer. Washington State’s public option plan may not be a game-changer. Many think the state should have set the rate cap more aggressively (at less than 160% of Medicare rates) so that consumers could save more money. That said, by operating the public option through private insurers for whom participation is optional, Washington’s plan avoids one common criticism of public options, which is that it’s “socialized medicine.” No matter what happens, officials from other states will be watching closely and thinking about whether and how they should introduce their own public option. Was 160% of Medicare rates the right reimbursement level, or should they be more (or less) aggressive? Should the plan be sold by private insurers, as it will be in Washington, or should the state’s Medicaid agency design and sell the plan, like it would have in Nevada’s vetoed buy-in bill? Should carrier participation be voluntary, as it is in Washington, or mandatory, as it is in a draft plan recently proposed by Colorado? Medicaid buy-in plans are not currently a hot political topic. But, just like reinsurance programs, once a few states have tested the waters, that could change. Being the first state to initiate a major program can have its drawbacks, and venturing into uncharted waters will always come with its risks. But once states have a better idea

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of what they are getting into, and especially when they see other states succeed, not only will state policymakers feel that buy-ins are a less risky venture but the public will also be calling for these changes.

Conclusion Most Americans can agree that consumers buying health insurance plans on the individual market need cost relief, particularly if they are receiving no (or low) subsidies. Whether it be through encouraging carrier participation, increasing enrollment, or improving affordability, state policymakers owe it to their constituents to evaluate the options described above, all of which can help stabilize their individual health insurance market. We are already seeing improved access to affordable health coverage as a result of these policies, and as states continue to create, copy, and tweak these programs, the markets, including the consumers who buy plans in them, will be put on the road to health.

References 1. State health insurance marketplace types, 2020. The Henry J.  Kaiser Family Foundation, 4 Nov 2019. www.kff.org/health-­reform/state-­indicator/state-­health-­insurance-­marketplace-­typ es/?currentTimeframe=0&sortModel=%7B%22colId%22%3A%22Location%22%2C%22sor t%22%3A%22asc%22%7D. 2. Morse S. APR 18, 2019MORE ON MEDICARE & MEDICAIDCMS reduces exchange user fees, changes coupon policy for brand name drugs in 2020 final rule. Healthcare Finance News, 18 Apr 2019. www.healthcarefinancenews.com/news/cms-­reduces-­exchange-­user-­fees-­ changes-­coupon-­policy-­brand-­name-­drugs-­2020-­final-­rule. 3. Explaining the 2015 open enrollment period. Kaiser Family Foundation, 6 Nov 2014. www. kff.org/health-­reform/issue-­brief/explaining-­the-­2015-­open-­enrollment-­period/. 4. When is open enrollment for 2020? Health Markets, 2020. www.healthmarkets.com/resources/ health-­insurance/open-­enrollment/. 5. Nevada Health Link Awards contract for state-based exchange. Nevada Appeal. 16 Aug 2018. https://www.nevadaappeal.com/news/local/nevada-­health-­link-­awards-­contract-­for-­state-­ based-­exchange/. 6. UPDATE: where things stand, final 2019 OEP edition: 11.44 million QHPs. ACASignups. net, 15 Feb 2019. acasignups.net/19/08/01/update-­where-­things-­stand-­final-­2019-­oep-­ edition-­1144-­million-­qhps. 7. Lueck S.. Reinsurance basics: Considerations as states look to reduce private market premiums. Center on Budget and Policy Priorities, 3 Apr 2019. www.cbpp.org/research/health/ reinsurance-­basics-­considerations-­as-­states-­look-­to-­reduce-­private-­market-­premiumswww. cbpp.org/research/health/reinsurance-­basics-­considerations-­as-­states-­look-­to-­reduce-­private-­ market-­premiums. 8. Fehr R., et al. Data Note: Changes in Enrollment in the Individual Health Insurance Market through Early 2019. Kaiser Family Foundation, 21 Aug 2019. www.kff.org/private-­insurance/ issue-­brief/data-­note-­changes-­in-­enrollment-­in-­the-­individual-­health-­insurance-­market-­ through-­early-­2019/.

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9. Fehr R., et al. How affordable are 2019 ACA premiums for middle-income people? Kaiser Family Foundation, 5 Mar 2019. www.kff.org/health-­reform/issue-­brief/how-­affordable-­ are-­2019-­aca-­premiums-­for-­middle-­income-­people/. 10. Section 1332: state innovation waivers. CMS. www.cms.gov/cciio/programs-­and-­initiatives/state-­ innovation-­waivers/section_1332_state_innovation_waivers-­.html#targetText=Section%20 1332%20of%20the%20Affordable,basic%20protections%20of%20the%20ACA. 11. Keith K. CMS releases new info on state reinsurance funding. Health Affairs, 4 Mar 2019. www.healthaffairs.org/do/10.1377/hblog20190304.112399/full/. 12. Tracking section 1332 state innovation waivers. Kaiser Family Foundation, 7 Jan 2020. www. kff.org/health-­reform/fact-­sheet/tracking-­section-­1332-­state-­innovation-­waivers/. 13. Speech: remarks by administrator Seema Verma at the CMS National Forum on state relief and empowerment waivers. CMS, 23 Apr 2019. www.cms.gov/newsroom/press-­ releases/speech-­remarks-­administrator-­seema-­verma-­cms-­national-­forum-­state-­relief-­and-­ empowerment-­waivers. 14. State-run reinsurance programs reduce ACA premiums by 19.9% on average. Avalere, 13 Mar 2019. www.avalere.com/press-­releases/state-­run-­reinsurance-­programs-­reduce-­aca-­ premiums-­by-­19-­9-­on-­average. 15. Jost T.  Implementing health reform: ‘minimum value’ plans must have hospital and physician coverage. Health Affairs, 4 Nov 2014. www.healthaffairs.org/do/10.1377/ hblog20141104.042482/full/. 16. Keith K. Court invalidates rule on association health plans. Health Affairs, 29 Mar 2019. www. healthaffairs.org/do/10.1377/hblog20190329.393236/full/. 17. Porter S. Association health plans ruling appealed as lawsuit over short-term plans proceeds. Health Leaders, 30 Apr 2019. www.healthleadersmedia.com/strategy/association-­health-­ plans-­ruling-­appealed-­lawsuit-­over-­short-­term-­plans-­proceeds. 18. Lucia K, et al. In the wake of new association health plan standards, states are exercising authority to protect consumers, providers, and markets. The Commonwealth Fund, 27 Nov 2018. www.commonwealthfund.org/blog/2018/initial-­state-­approaches-­association-­health-­plans. 19. Palanker Dania, et al. States step up to protect insurance markets and consumers from short-­ term health plans. The Commonwealth Fund, 2 May 2019. www.commonwealthfund.org/publications/issue-­briefs/2019/may/states-­step-­up-­protect-­markets-­consumers-­short-­term-­plans. 20. Repealing the individual health insurance mandate: an updated estimate. Congressional Budget Office, Nov. 2017. www.cbo.gov/system/files/115th-­congress-­2017-­2018/reports/53300-­ individualmandate.pdf. 21. Levitis J. State individual mandates. Brookings, Oct 2018. www.brookings.edu/wp-­content/ uploads/2018/10/Levitis_State-­Individual-­Mandates_10.29.18.pdf. 22. Sheen, Robert. Is Maryland the next state to approve an individual mandate? The ACA Times, 13 Mar. 2019., www.acatimes.com/is-­maryland-­the-­next-­state-­to-­approve-­an-­individual-­mandate/. 23. Tolbert J, et al. State actions to improve the affordability of health insurance in the individual market. Kaiser Family Foundation, 17 July 2019. www.kff.org/health-­reform/issue-­brief/state-­ actions-­to-­improve-­the-­affordability-­of-­health-­insurance-­in-­the-­individual-­market/. 24. Jenkins A. Will Washington State’s new ‘public option’ plan reduce health care costs? NPR, 16 May 2019. www.npr.org/sections/health-­shots/2019/05/16/723843559/will-­washington-­ states-­new-­public-­option-­plan-­reduce-­heath-­care-­costs 25. Kliff S. The lessons of Washington state’s watered down ‘public option.’ The New York Times, 27 June, 2019.

Chapter 13

What’s Next: The Push for Universal Healthcare Rosemarie Day

The Affordable Care Act (ACA) is one of the most significant pieces of healthcare legislation to be enacted since the passage of Medicare and Medicaid in 1965, and it is credited with expanding coverage to over 20 million people. That said, the ACA did not achieve its full promise or potential. Using a similar model, Massachusetts was able to achieve “near universal” coverage, reducing its uninsured population to 2%. The US as a whole did not come close to that—as of 2019, 11% of the population (29 million people) is uninsured and, sadly, the number is growing again, after significant reductions by the ACA (Fig. 13.1). In addition to the rising number of uninsured, Americans are increasingly underinsured, meaning that they have health insurance, but because their out-of-pocket expenses are so high, they struggle to afford prescription drugs or treatments.

Uncovered: The Remaining Uninsured—Who Are They? The 29 million people who remain uninsured tend to be lower income (close to half have incomes below 200% federal poverty level (FPL)) and are disproportionately likely to be people of color—that said, 41% of the remaining uninsured are white. (Fig.  13.2.) The vast majority of the uninsured are in a family with at least one worker, but that worker either doesn’t have access to employer-based coverage or can’t afford it [1]. When the uninsured are surveyed about why they don’t have coverage, most say they can’t afford it—even though over half are eligible for ACA-related funding assistance, either through Medicaid or the exchanges (via tax credits) (Fig. 13.3). For many, the subsidies aren’t large enough to make health insurance affordable. A R. Day (*) Day Health Strategies, Somerville, MA, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 H. P. Selker (ed.), The Affordable Care Act as a National Experiment, https://doi.org/10.1007/978-3-030-66726-9_13

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Fig. 13.1  Uninsured trends [1]

Characteristics of the Nonelderly Uninsured, 2017 Family Income (%Federal Poverty Level)

400% FPL 18%

200-399% FPL 35%