Reflections on Paul Farmer’s legacy: a clarion call for transformative human rights praxis in global health

Paul's work to advance global health equity was driven by his profound belief that  “the idea that some lives matter less is the root of all that is wrong with the world.”



Dr. Paul Farmer pictured at Koidu Government Hospital supported by Partners In Health in 2019. Photo by John Ra / PIH


Paul Farmer’s far-too-early passing on February 21, 2022 is an incalculable loss to those of us who knew and loved him, to students and patients around the globe, to the world of global health—and to the diverse tapestry of activists, practitioners, and scholars working to advance human rights in health.

When Paul was awarded the Berggruen Prize for Philosophy and Culture in 2020, the Chair of the Jury, Kwame Anthony Appiah, noted that he had “reshaped our understanding not just of what it means to be sick or healthy but also of what it means to treat health as a human right and the ethical and political obligations that follow.” 

It is impossible to do justice to Paul’s legacy in any of the spheres in which he worked. But, building on a piece we jointly authored here less than a year ago, I offer six lessons from his pioneering thinking and work, which could not be more urgent now.

 

The moral basis of the right to health, and its implications

Paul had a preternatural moral clarity; his work to advance global health equity was driven by his profound belief that “the idea that some lives matter less is the root of all that is wrong with the world.”  

Paul understood health as first and foremost a moral right because, to borrow from Amartya Sen, a friend and colleague at Harvard with whom Paul often taught, it is critical to enabling us to develop the functionings and capabilities that we value in life, and require to live with dignity. 

This stands in contrast to the increasing tendency toward positivism in health and human rights scholarship and advocacy, which suggests the existence and meaning of the right to health stems from inclusion in treaties and soft law. For Paul, identifying violations grounded in international law, without a searching analysis of the systemic drivers of deprivations of dignity, from colonialism to neoliberal economic ordering, was radically insufficient.

Paul’s profound commitment to the equal dignity of all people everywhere was materialized in practice through the ‘preferential option for the poor’ that guides the strategy and activities of Partners In Health (PIH), the global health justice organization he co-founded. 

For Paul, this was in no way a questioning of the need for a secular state. Rather, it was a reminder that “human rights abuses are most…accurately and comprehensively grasped from the point of view of the poor. … In no area is this [perspective] more needed than in health and human rights.” What Paul termed ‘structural violence’—the structural arrangements embedded in the political and economic organization of our social world that systematically perpetuate violence, causing injury and harm—overwhelmingly affects the poor. 

 

Inequality, not just poverty

Challenging the structural injustice that shapes “the conditions in which we are born, grow, work, live, and age and the wider set of forces and systems shaping the conditions of daily life” requires more than a feeble ‘sufficientarianism.’ Paul wanted destitute sick people in the poorest countries of the world to have the same access to care as patients at the Harvard teaching hospital in Boston where he also worked.  

That may seem “politically implausible” to many scholars and advocates even within the human rights field. But Paul was constantly inviting us to enlarge our imagination of what is possible—and what is required if we want to live in social and international orders in which everyone can enjoy all their rights, including the right to health. PIH has shown that such standards in medical care can be achieved, and as a result countless lives have been saved. 

Further, together with the leadership of PIH, Paul’s dogged commitment to making the impossible possible was instrumental in changing policies in the US government and international organizations regarding treatment for persons with multi-drug resistant tuberculosis and HIV/AIDS. As external critics as well as leading voices within the human rights field have noted, we would do well to follow Paul’s lead in setting our aspirations higher. 

In a world where almost 500 new billionaires were created during this pandemic while 160 million fell into poverty and lost livelihoods, homes and health, it is urgent that we shift from seeking to alleviate the extreme deprivation that results from the current institutional order to challenging the financialized globalization that continues to spawn ever-deepening inequalities within and between countries. 

 

(Re-)claiming the role of the state and public services

As opposed to the vast majority of organizations in the development and global health space, Paul and the rest of the leadership team ensured that PIH does not provide “technical assistance” from above—e.g., creating parallel systems that do nothing to strengthen national capacities. Rather, PIH works in partnership with health ministries, from health sector planning and strategy, to  deliver clinical care. That in turn can mean working alongside undemocratic regimes that enact discriminatory laws and repressive policies.

In this space it is not possible to share the nuanced reflections Paul had regarding these difficult choices. Moreover, each of us might reach different conclusions in specific cases. 

However, two points are worth underscoring. First, that commitment to partnership in no way implies a lack of understanding of how law, including criminal law, shapes the structural conditions under which people can enjoy their health and other rights. 

Indeed, PIH has a long history of working with incarcerated populations—populations that have borne a disproportionate brunt of abuse for dissenting from autocratic regimes, deviating from social norms, or simply because their poverty was criminalized. During the pandemic, when SARS-CoV-2, the virus that causes COVID-19, swept through prisons, PIH became increasingly active in working with advocacy groups and openly advocating decarceration in the United States.

Second, the larger point is that government administrations come and go; as leading figures in human rights have also emphasized, Paul recognized that enhancing the capacity of the state is essential to the institutional arrangements necessary to provide economic and social rights, from education to health.

In health specifically, public financing and public provision of care increases overall equity and establishes the health system as a key social institution to reflect and refract back societal commitments to equal dignity. It is simply not possible to deliver effective enjoyment of the right to health without investment in public resources and capacity, which have been systematically hollowed out by decades of neoliberal privatization, labor deregulation, and the like.

Focus on the conditions for effective enjoyment of health rights

Paul understood that a more transformative human rights movement, as Amy Kapczynski argues, “requires attention to the structural changes that are needed to reform our political economy, and to provide the infrastructure for fair provision, locally and globally, that neoliberal legality has steadfastly opposed.” The effective enjoyment of the right to health calls for broader work on the social determinants of health. But it also requires integrated, comprehensive health systems where all levels of care—from primary to more advanced care—and the full range of necessary services for diversely situated populations are available through a universal system financed through pooled public funding. 

Paul insisted that financing should be enough to allow for integrated delivery systems to meet all health needs of a patient, known as the “5S’s” in PIH’s model (Staff, Stuff, Space, Systems, and Social Supports). Every aspect of each of those components had to be addressed, from referral networks, to social support offered through contact tracing, to the flow and design of spaces that would promote dignity and healing at the same time. 

For many low and lower-middle income countries, however, there is simply not enough tax capacity to mobilize the resources required to achieve comprehensive public health or health care. Paul was deeply committed to increased cooperation, especially multilateral cooperation,  for public health and health systems. And for the past several years, PIH has been deeply involved in steering an initiative to transform the broken aid system and promote increased and democratized Global Public Investment for health and beyond.

At the same time, Paul continually underscored that international assistance was radically insufficient to bring about global health justice. The Global South loses billions more each year than it receives due to conditions of unequal exchange and neoliberal economic strictures, from intellectual property regimes to odious debt to fiscal consolidation, all of which shackle the resources available to lower-income countries to invest in resilient universal health systems that include both public health and care.

Evidence, expertise and truth claims

The corollary to understanding that those who have lived experience are best placed to understand the meaning of health rights is that claims to objective truth from (self-) anointed experts often produce ‘blinkered analyses’

With the initial team Paul assembled when he was named Editor-in-Chief of the Harvard Health and Human Rights Journal 15 years ago, we agreed that knowledge in relation to applying rights to health needed to be far more accessible, and so the journal not only went online, but was an early adopter of making its scholarship completely open access. Recognizing the barriers language presented, we included articles in other languages, together with translations. 

We also dedicated one of two principal sections to writing “from practice.” The other principal section highlighted critical concepts, as well as contestations, to inform reflective and innovative practice. 

It was no surprise to Paul that during Covid, the statistical models designed to predict infections and mortality were wrong as often as they were correct because one of the foundational lessons of social medicine is that health cannot be abstracted from the social and material worlds we inhabit. Thus, in pandemic and ‘normal’ times, critically important questions cannot be addressed by technical experts with conventional tools of prediction and what he called ‘timid’ claims of causality.

And despite the vast number of patients he saw over the course of his career, Paul treated each individual as if they contained the whole world within them.

As Paul’s scholarly work from HIV/AIDS in Haiti to Ebola in West Africa showed, questions about who gets sick or dies, and under what conditions, are wrapped in layered histories of colonial extraction and exploitation, “where veiled alliances form a bridge between aggressors and victims.” 

Just as in medicine and public health, a praxis of human rights concerned with using the law in the service of democratic social change should be especially skeptical of technologies of knowledge, such as compliance indicators in the SDGs and beyond, that are disconnected from the contexts in which institutional actors need to be mapped, relations need to be (re)shaped, and politics need to be contested.

Accompaniment and pragmatic solidarity

Paul used to like to quote the line from Rudolf Virchow, father of social medicine, that “physicians are the attorneys of the poor.” Of course he understood that legal attorneys work alongside the poor as well. But as others have pointed out in this forum, we would be well advised to continually reflect on our own actions and motivations, to ensure that we are indeed empowering and  accompanying those on whose behalf we purport to act.

Paul began from the premise that it was the failure of the provider or the system, and not the patient, if treatment regimens did not work. And despite the vast number of patients he saw over the course of his career, Paul treated each individual as if they contained the whole world within them.  

If that seems emotionally unattainable, perhaps the most important lesson I learned from Paul is that the real antidote to burnout in the Sisyphean struggle for social justice is not mindfulness apps or self-care rituals, although those can be helpful; the real antidote to burnout is caring more—and finding others who do as well with whom to share the exuberance of triumphs and lighten the despondency of losses.

Paul had an extraordinary impact on everyone he touched in every corner of the globe, whether through his healing hands, his mentorship and friendship, or his inspirational writing. He literally connected the world through his work and his life, and continually showed us our common destiny and shared humanity. 

At a time when the world seems so broken, it could not be more urgent to carry forward Paul’s vision for human rights.

 

ORIGINALLY PUBLISHED: March 4, 2022

Alicia Ely Yamin is a lecturer on Law and senior fellow at the Petrie-Flom Center at Harvard Law School and senior advisor on Human Rights and Health Policy with Partners In Health.


 

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