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Democratizing Health Systems to Advance Health Justice


Alicia Ely Yamin is Lecturer on Law (2020-21) and Senior Fellow on Global Health and Rights at the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics at Harvard Law School, and Senior Advisor on Human Rights at Partners in Health.

Tara Boghosian is a recent graduate of Harvard Law School.

The staggeringly disproportionate ravages of the COVID-19 pandemic among people of color, juxtaposed with the summer’s wave of protest against police violence against Black people in the United States, make clear that population health is bound up with existing patterns of social subordination. This reality transcends presidencies and pandemics—even in “normal” times, race, gender, and income play outsize roles in predicting health outcomes in this country. Yet, while the health system is a profoundly important social institution that often determines who lives and who dies, it has rarely been subject to the same level of scrutiny that has been directed at other systems we consider integral to how our democracy functions, such as the justice and electoral systems. In our recent piece, “Democracy and Health: Situating Health Rights within a Republic of Reasons,” we set out the contours of a health system that is grounded in an understanding of entitlements to health (public health and care) as assets of social citizenship. These contours include (1) public participation; (2) fair financing; (3) transparent and fair priority-setting processes; (4) universally acceptable, accessible, and adequate care; and (5) enforceable rights.

As Professor Angela P. Harris and Aysha Pamukcu have written here, public health practitioners and social movements have long understood that subordination is a key cause of ill health. As early as the nineteenth century, Rudolf Virchow’s work underscored the social origins of disease and the need to address epidemics through political and not merely medical means. Social determinants, the “conditions in which people are born, grow, live, work, and age,” from air quality to housing discrimination, play a far larger role than medical care in determining health outcomes. Harris and Pamukcu’s article introducing the concept of “civil rights of health” builds on this concept, arguing that lawyers, health workers, and affected communities should work together to use legal means to redress the health disparities that are driven by social determinants. This idea is groundbreaking in the U.S. context, where health rights and entitlements have typically been construed narrowly and negatively. Indeed, even the U.S. health system is less of a cohesive institution than a patchwork of financing and delivery structures based largely on insurance markets—a fact that COVID-19 has laid bare.

We argue that as well as redressing socially driven health disparities through legal means, it is imperative to recognize that the health system itself is an institution that undergirds meaningful participation in political and social life. Our article sets out the contours of a health system that is understood as a core social institution and grounded in human rights, including civil rights protections but also, centrally, the right to health. First, democratizing health systems requires that the diverse people whose lives are affected be informed and empowered as active participants in personal and policy decisions. Indeed, as Harris and Pamukcu describe, lack of individual and collective agency increases risks of ill health. Their description of a movement for health justice—one that is led by impacted communities and draws on legal practitioners’ and policymakers’ skills—is an example of what active and meaningful participation in health decisions could look like. Public participation should occur through both “official” channels, including consultation and deliberation in priority-setting, as well as health-related social activism.

Second, health systems cannot be structured around ability to pay if they are to be premised on democratic values of inclusion, solidarity, and equity. Neoliberal laws privileging privatization and market solutions, as is well-documented, exacerbate health inequities. For example, U.S. health spending absorbs far more GDP than countries, like Canada, that utilize single-payer healthcare. Yet 27.9 million nonelderly individuals were uninsured in 2018, and health outcomes are measurably worse. Fair financing is best achieved through progressive taxation, which is one of the most equitable ways to finance health systems and care; is subject to the political process; and historically has dovetailed with the adoption of universal healthcare.

Even where public health measures and healthcare receive robust public financing, not everyone will receive all services for everything. Therefore, there must be priority-setting processes at all levels to ensure that health resources are available without discrimination and on an equitable basis. The contestation over COVID-19 vaccine allocation and distribution both within countries and around the globe, as well as accessibility to intellectual property, have underscored that when we fail to acknowledge the need for priority-setting processes that can be scrutinized against transparent criteria and values, those with systemic privilege will be the ones who access health resources. This implicit rationing contributes to the unequal health outcomes that stem from population, place, and access to power as upstream decisions affect downstream embodied inequalities. For example, unequal allocation of limited healthcare resources among New Orleans hospitals during COVID-19 led to a higher percentage of poor Black patients dying at home without access to potentially lifesaving interventions nor palliative care.

Health systems must also be organized to ensure that health goods and services are scientifically, ethically, and culturally acceptable and of adequate quality. To use yet another COVID-19 example, the health system must ensure regulatory oversight to guarantee the forthcoming vaccine is safe and effective, and to address public skepticism and distrust. This distrust often stems from structural racism, although disinformation also plays a role. Moreover, services should be provided in a way that recognizes the inherent dignity of both the service recipient and provider, which is difficult to achieve in the context of wider societal subordination. For example, a health system is unlikely to prioritize patients’ dignity if workers in the system are not fairly compensated; or are not meaningfully protected from harassment and discrimination at work. It is therefore crucial to recognize that the formal and informal norms that permeate health systems from macro- to micro-levels are bound up with other struggles.

Finally, judicial oversight of the normative commitments reflected in health systems, which inevitably refract broader societal values, is imperative for a health system construed as a social institution, as opposed to a technocratic apparatus for the delivery of goods and services. Here, we can glean lessons for the U.S. from international and comparative perspectives. In the last three to four decades, countries across the globe with varying income levels have taken steps to enshrine health-related rights in domestic law. These countries have recognized that health systems should respond to health rights, in much the same way as equal rights to due process and political participation should structure justice and electoral systems, respectively.

However, litigation for individual entitlements, which is common across Latin America, often does not change structural issues (such as budgets). At times it may merely reinforce health inequity by conceding privileges to those who can afford to litigate. Yet, some apex courts, in Latin America and beyond, have used a “weak” form of judicial review, in Mark Tushnet’s phrase, to create dialogue with the political organs of government and catalyze political action with respect to structural issues involving environmental health as well as the health system itself. For example, in South Africa, litigation under the constitutional right to health at the height of the HIV/AIDS crisis forced the government to expand Nevirapine access and devise a national policy on the prevention of mother-to-child HIV transmission. Thus, as Professor Harris and Aysha Pamukcu set forth in the “Civil Rights of Health”, in the U.S., fighting against subordination requires novel litigation strategies—primarily at the state and local levels—that mobilize knowledge of health disparities to achieve structural change.

Ultimately, democratizing health systems requires changing how health issues are framed in legal and policy analysis, in the United States and elsewhere. As Professors Britton-Purdy, Singh Grewal, Kapczynski, and Rahman suggest, in addition to analyzing who wins and who loses from any particular policy we must demand institutional action to tackle structural forms of subordination and exclusion that invariably affect distributions of health and ill-health. As has been brutally evidenced in this pandemic, health, perhaps more dramatically than any other area of law and policy, involves what these scholars refer to as “the need for political judgments about the gravest questions: who should exercise power, of what sort, and over whom? What should count as a human need, and what claims should politically recognized needs give us against the state and thus against one another? Whose dreams come true, and who is enlisted in the realization of others’ schemes?”