FOREWORD In Memory of Paul Farmer, Who Believed the Future Could Be Different
Volume 24/1, June 2022, pp. 1-4 | PDF
Joseph J. Amon and Carmel Williams
On February 21, 2022, Health and Human Rights Journal’s editor-in-chief, Paul Farmer, died in his sleep while working in Rwanda.
In addition to his role at the journal, Paul was Kolokotrones University Professor and chair of the Department of Global Health and Social Medicine at Harvard Medical School, chief of the Division of Global Health Equity at Brigham and Women’s Hospital in Boston, and co-founder and chief strategist of Partners in Health.
Paul followed Jonathan Mann as the journal’s editor. Not long after taking on this role, he gave tribute to Mann by delivering the inaugural Jonathan Mann lecture at Drexel University, the journal’s co-publisher. The talk was introduced by Lydia Mann, Jonathan Mann’s daughter.
In her introduction, Lydia said that her father believed that becoming a public health professional
implicitly places you on the side of those who believe that the world can change. Every act challenges the apparent inevitability of the world as it is and the natural history of illness, disability and death. At a profound, even instinctual, level people become health professionals to struggle against the weight of human suffering and thereby place themselves among those who intervene in the present because they believe the future can be different.
This desire to fight against the “apparent inevitability” of the world, and against those who would deny the poor the right to health or access to medicines, was at the heart of Paul’s writing and work. He challenged global health leaders to answer why it was acceptable that some individuals had access to information, to prevention, and to the best care possible while others did not. Whether it was HIV, tuberculosis, or COVID-19—in Haiti, Rwanda, or the United States—Paul, like his predecessor, forced people to see not just the proximate determinants of health but also the underlying structural and political determinants that public health professionals often believe are beyond their scope of work.
For Paul, the notion that health is a human right was obvious. But it was also profound, and it had consequences for how he believed public health should be taught, how global health should be delivered, and how public health practitioners should engage individuals, communities, and policy makers. Paul’s writing over the past two years illustrates the current issues he was absorbed by and highlights his blunt assessment of where we are failing.
On COVID-19, Paul foresaw the massive challenge it would be to vaccinate the world. At the time of his death, only 12% of the population in low-income countries had received at least one dose of a vaccine. In high- and upper-middle-income countries, this figure was 79%.[1] Recognizing this, Paul advocated a temporary intellectual property waiver for COVID-19 vaccines. Paul and co-authors said, “The longer states stall, the more people die needlessly. COVID-19 has repeatedly shown that people without access to resources such as strong health systems, health workers, medicines, and vaccines will preferentially fall ill and die. For too long, this cycle has been ‘other people’s’ problem. It is not. It is our problem.”[2]
Paul also focused his attention on the patterns of racial disparities of COVID-19 in the United States. To address the structural racism causing these disparities, Paul and his co-authors advocated racial justice interventions and reparations for Black Americans that could decrease COVID-19 and other public health risks.[3] He wrote about the need to address the risk of COVID-19 in jails and prisons in the United States through vaccination and decarceration: “On the grounds of scientific evidence and our ethical responsibility to protect the vulnerable and the public at large, we can use our influence to demand” these changes.[4] He wrote, too, of the need to protect health workers, globally, from COVID-19 infection.[5]
Beyond the issue of COVID-19, Paul championed other health issues he believed received insufficient attention, including the capacity of the global health workforce, the long-term impact of Ebola in West Africa, and the myriad health consequences of poverty in Haiti.[6] He wrote of the millions of people globally who suffer needlessly from a lack of access to palliative care.[7] He also recognized what he referred to as “the moral case for global mental health delivery” and the structural violence that is often committed on people with mental illness, occurring at the intersection of deprivation, exclusion, and discrimination.[8]
Focusing too much on specific health issues, though, misses the important holistic view that Paul brought to public health. Paul was skeptical of what he described as “narrowly defined technological fixes,” which, while effective and affordable, are often put in silos and traded off against one another, a process that ultimately fails to deliver the comprehensive public health systems that communities need.
Under Paul’s editorship, the journal flourished, reflecting his wide interests and underlying belief in the importance of strong health systems. His influence expanded the readership beyond academic circles to practitioners and activists working in both the Global North and the Global South. He insisted the journal be open access to readers and contributors so that lack of financial resources could never stop good research from being published or read.
His leadership will be missed, but his legacy will continue. For years to come, his articles and books will remain prescribed reading in university courses. They will continue to inspire students and global health practitioners and leaders and will help guide those who hold governments to account for their human rights duties. In addition to remembering his hard work, dedication, sense of humility, humor, and optimism, we must emulate his spirit. Along with his innumerable colleagues, friends, and admirers around the world, in our sadness and shock at Paul’s sudden death, we strive to keep alive his belief that the future can be different.
Journal will draw on global expertise
At this time of change, the publishers of Health and Human Rights Journal—the François-Xavier Bagnoud Center for Health and Human Rights at Harvard University and the Dornsife School of Public Health at Drexel University—are welcoming an executive editorial committee to provide support, leadership, and guidance. The members of the committee have been selected to provide regional, ethnic, gender, and professional and academic diversity.
The journal’s subject, health and human rights, necessarily calls for interdisciplinary expertise, reflecting the indivisibility of human rights. Its commitment to publishing work that promotes equity in health both globally and nationally requires a deep understanding of public health, and its social determinants, as objects of social and economic rights. Global inequities, and local ones that manifest as a lack of access to health care and inadequate standards of living, reflect historic and ongoing power imbalances. Understanding and overcoming these human rights challenges requires research and advocacy that address legal, health, political, and economic determinants.
Our newly appointed editorial committee reflects this breadth of expertise. Consisting of Tlaleng Mofokeng, Sharifah Sekalala, Anand Grover, and Varun Gauri, the committee brings a wealth of practical, theoretical, and grassroots knowledge to the journal. They join at a time when the journal seeks to reach out to more readers and authors, especially those from the Global South.
Tlaleng Mofokeng from South Africa is the fourth and current United Nations Special Rapporteur on the right to health, the first woman to hold this position. Known for her advocacy for universal health access (especially for rural women whose access to holistic quality health care is limited), sexual and reproductive health rights (including safe abortion), and inclusive gender-affirming health, Tlaleng also implements “advocacy-in-practice” training for health care professionals. As a medical practitioner herself, her areas of focus have been on gender equality, health policy, health systems, and the politics of health. In her words, “I have a goal of realising substantive equality through addressing structural and indirect discrimination and identifying the power dynamics that have perpetuated the systems and patterns of privilege and disadvantage that outlives formal colonialism.”
Sharifah Sekalala, a professor of law at Warwick University, United Kingdom, is an interdisciplinary researcher working at the intersection of international law, public policy, and global health. Sharifah uses a human rights lens to focus on intersectional vulnerabilities, including in a current project on the transnational movement of digital health data and how African states can ensure future rights to data from digital health applications. Her vision is influenced by Paul Farmer’s early work: “Unlike a lot of the earlier work on rights, it was very applied and focused on the right to health as a specific right. For me, as a scholar from the Global South, this was nearer to my lived experiences of rights and enabled me to redirect my academic focus.”
Varun Gauri, a senior fellow in the Global Economy and Development program at Brookings and a lecturer of public and international affairs at Princeton University, describes Paul’s work on HIV medications as inspiring: “He changed the world by showing that AIDS treatment was possible in low-income settings at a time when many individuals and large organizations were deeply skeptical. It gave those of us who hoped for a better, more encompassing solidarity something to point to, strive for, and remember.”
Anand Grover was the second person to hold the aforementioned Special Rapporteur mandate (2008–2014). He co-founded a nongovernmental organization in India, the Lawyers Collective, which promotes human rights, especially on issues relating to women’s rights, HIV, tobacco, LGBT rights, sex workers’ rights, drug users’ rights, and access to medicines. He has argued several landmark cases in the field of human rights law, including cases related to mass eviction, the environment, HIV, LGBT rights, and opposition to patents for essential life-saving drugs. Anand also brings publishing experience to this position, having been a founding editor of a constitutional law and human rights online publication in India, The Leaflet.[9] He supports the range of article formats offered by the journal and hopes to increase its diversity of contributors and board members.
We look forward to working with the new committee to expand our readership and the journal’s accessibility to researchers, activists, health workers, and lawyers working globally to promote the right to health.
Joseph J. Amon is senior editor of Health and Human Rights Journal, as well as director of the Office of Global Health and a clinical professor at Drexel University Dornsife School of Public Health, Philadelphia, USA.
Carmel Williams is executive director of Health and Human Rights Journal, FXB Center for Health and Human Rights, Harvard University, Boston, USA.
References
[1] J. Holder, “Tracking coronavirus vaccinations around the world,” New York Times (February 23, 2022). Available at https://www.nytimes.com/interactive/2021/world/covid-vaccinations-tracker.html.
[2] P. Erfani, A. Binagwaho, M. J. Jalloh, et al., “Intellectual property waiver for COVID-19 vaccines will advance global health equity,” BMJ 374 (2021).
[3] E. T. Richardson, M. M. Malik, W. A. Darity, et al., “Reparations for Black American descendants of persons enslaved in the US and their potential impact on SARS-CoV-2 transmission,” Social Science and Medicine 276 (2021).
[4] B. A. Barsky, P. Farmer, and S. Keshavjee, “Vaccination plus decarceration: Stopping COVID-19 in jails and prisons,” New England Journal of Medicine 384/17 (2021) pp. 1583–1585.
[5] Y. Zhao, C. Cui, K. Zhang, et al., “COVID19: A systematic approach to early identification and healthcare worker protection,” Frontiers in Public Health 8 (2020), p. 205.
[6] D. E. Berry, J. C. Bavinger, A. Fernandes, et al., “Posterior segment ophthalmic manifestations in Ebola survivors, Sierra Leone,” Ophthalmology 128/9 (2021), pp. 1371–1373; C. Millien, A. Manzi, A. M. Katz, et al., “Assessing burden, risk factors, and perceived impact of uterine fibroids on women’s lives in rural Haiti: Implications for advancing a health equity agenda, a mixed methods study,” International Journal for Equity in Health 20/1 (2021) pp. 1–17.
[7] W. E. Rosa, A. Parekh de Campos, N. C. Abedini, et al., “Optimizing the global nursing workforce to ensure universal palliative care access and alleviate serious health-related suffering worldwide,” Journal of Pain and Symptom Management 63/2 (2022), pp. e224–e236.
[8] V. Patel and P. E. Farmer, “The moral case for global mental health delivery,” Lancet 395/10218 (2020), pp. 108–109.
[9] See The Leaflet. Available at https://theleaflet.in/.