When People Come First

By João Biehl & Adriana Petryna

The Global health community is an evolving and expanding field. Below, João Biehl and Adriana Petryna consider the importance of addressing the medical, social, political, and economic dimensions of the global health enterprise, and demonstrate the crucial role of ethnography as an empirical lantern in global health.

While global health initiatives and teaching programs are booming worldwide and have begun to displace earlier framings such as tropical medicine and international health, critical analyses of the social, political, and economic processes associated with this quickly evolving field are still few and far between. Our new book When People Come First is an empirical and theoretical investigation of the contemporary global health enterprise. It brings together an international and interdisciplinary group of scholars to address the actual impacts of global health interventions on care, health systems, governance and citizenship. Vivid case studies demonstrate the crucial role of ethnographic research as an empirical lantern in global health and, overall, the book argues for a more comprehensive, people-centered approach.

In the course of the twentieth century, innovations in public health and medicine helped to increase life expectancy at birth by almost thirty years in the United States and other rich countries. Meanwhile, mortality rates remained high and life expectancies short in poor countries. Advances in medical technology continue to give cause for hope, as does the substantial increase in funding available to address some of the world’s most pressing health challenges. New state policies, public-private partnerships, and multidisciplinary research collaborations are reshaping the field that has come to be known as global health and, in the process, transforming realities on the ground. In emerging democratic economies—such as Brazil, India, and South Africa—we see patients and activists engaging in struggles over access to high-quality care and, at a more fundamental level, debating the meaning and implications of health conceived as a right rather than a privilege or commodity alone.

[ms-protect-content id=”5662″]

New state policies, public-private partnerships, and multidisciplinary research collaborations are reshaping the field that has come to be known as global health.

Consider the story of Renilde who sued the southern Brazilian state of Rio Grande do Sul for a medicine to treat her pulmonary hypertension.1 She lives in the outskirts of the capital Porto Alegre, where she runs an informal bar on the porch of her brick shack. Renilde learned she was HIV positive in 2002. She does not have trouble accessing her high-cost AIDS treatment, which she receives for free at the local health post. But in 2009, Renilde began feeling out of breath. Unable to perform her duties as a janitor, she lost her job. A public doctor prescribed her a medicine for pulmonary hypertension. Unlike her AIDS therapies, the medicine was not offered through the public health care system at the time and cost about US$1000 a month.

Following the doctor’s advice, Renilde went to the public defender’s office. She qualified for free legal representation and sued the state for the medicine. Renilde lost the lawsuit but later won on appeal. A district judge issued a court injunction ordering the state to provide the medicine immediately, but when we interviewed a desperate Renilde in August 2009, several months had passed and she had yet to receive it. If she could get the medicine and improve her health, Renilde hoped to resume work and continue caring for her adopted teenage son.

Broader questions of access to technology and social justice are playing out in today’s rapidly changing public health contexts.

Renilde’s story is not unique. It reflects how broader questions of access to technology and social justice are playing out in today’s rapidly changing public health contexts.  In When People Come First, we argue that accounts based on the experiences of real people—stories that are often obscured by abstract and bureaucratic considerations of public policy—are essential for a more realistic analysis of the collision of a crushing burden of disease, emerging audit cultures, and new therapeutic regimes in which life chances unfold, as well as for crafting more comprehensive care.

 

Critical Studies in Global Health


Looking at international health interventions historically, we commonly find disjunctures between the design of campaigns and the complex ways in which they are implemented and critiqued. The political and economic requirements of the times and the ideological whims of the elites in charge determine how priorities are set and why they are abandoned. In the book’s first case study ‘A Return to the Magic Bullet?’ historian Marcos Cueto explores how institutional politics at the World Health Organization shaped failed malaria eradication campaigns into the late 1960s and how the eradication paradigm was revived as Roll Back Malaria sponsored by the Gates Foundation in the 2000s. Changes in goals (from eradication to control and back to eradication) lead to similarly circuitous changes in strategies (from spraying to treatment to vaccines; from prevention to treatment and back). As Cueto demonstrates, Roll Back Malaria had to fashion itself as a magic bullet in order to retain its position and funding.

In general, the global health community has overemphasised individual factors, ignoring how risks are shaped by law, politics, and practices ranging from industrial and agricultural policies to discrimination, violence, and lack of access to justice.

Magic-bullet approaches—the delivery of medical technologies that target one specific disease and without regard to the myriad societal, political, and economic factors that influence outcomes— have been the norm in international health for decades. There are, however, significant conceptual and practical downsides to this approach. Social scientists and health policy advocates caution that a narrow focus on the triad of technology delivery, patient compliance, and the basic science of disease (as important as they are) is insufficient. Also, unintended consequences may be unleashed by even the most carefully designed interventions.

In general, the global health community has overemphasised individual factors, ignoring how risks are shaped by law, politics, and practices ranging from industrial and agricultural policies to discrimination, violence, and lack of access to justice. We need to better attend to breakdowns in public health infrastructures and to the many social determinants of health (such as education, water, sanitation, vector control, air pollution, and accident prevention) that make people vulnerable to disease and injury in the first place. Given the extreme inequalities that are so intricately woven into the current international order as well as into the fabric of countries and regions, we need integrated approaches that recognise the profound interdependence of health, economic development, good governance, and human rights. Any sustainable development has to reach and improve the conditions of the poorest and most marginalised groups carrying the highest burdens of ill health.

Moreover, as evident in Renilde’s case, disease is never just one thing, technology delivery does not automatically translate into patient care, and biology and technology interact in ways we cannot always predict. So the case studies in When People Come First consider what really happens when new treatments are introduced into epidemiologically diverse and variable social worlds. How is care organised by providers and by state and nongovernmental organisations? By what trajectories and means do the people who desperately need care access it (or fail to access it)? And how can the stories of real people dealing with insecurities of all kinds find their way into and improve current practices in global health?

 

Improvised Care and People as Agents of Health


Multiple actors now compete in the field of global health, each seeking to be a relevant and influential player. Ranging from the Gates Foundation to pharmaceutical company drug donation programs and PEPFAR (the [US] President’s Emergency Plan for AIDS Relief), to research initiatives, South-South cooperation and myriad rights-based pilot projects, these diverse agents are setting new norms for institutional response, sometimes providing the public health resources that states and markets cannot or have failed to furnish. We are left with an ‘open-source anarchy’2 around global health problems—a policy space in which new strategies, rules, distributive schemes, and the practical ethics of health care are being assembled, experimented with, and improvised by a wide array of deeply unequal stakeholders.

Locally, such multiple and fragmentary global health interventions consolidate what anthropologist Susan Reynolds Whyte and her colleagues call ‘projectified’ landscapes of care in the book’s case study which focuses on the first generation of patients with access to life-saving AIDS therapies in Uganda. After the civil war, the country’s government seized on specific health problems to bolster its legitimacy at home and abroad. At least as it relates to AIDS, the Ugandan health system is almost exclusively dependent on international aid, with myriad overlapping providers delivering drugs and services. Reynolds Whyte and colleagues describe those who benefit from these health initiatives as ‘clients’, a term that can be understood in two complementary senses. The first points to the ways people must seek out patrons better positioned within the world of health care in order to gain access for themselves and their relatives. The second refers to people as consumers of a product (in this case heath care). Here health is not a ‘right’ available to all citizens, but a thing available to those well-connected. ‘Good’ clients are expected to be faithful to their programs and help foster their growth. This ‘therapeutic clientship’ becomes a survival mechanism that extends well-beyond drugs to include possible employment, food, and education. Anthropologists see people not just as targets or numbers, but as embedded actors moving within complex social, political and economic networks in which health and health care are brokered.

Despite the deluge of monies and organisations flowing into resource-poor settings worldwide, local health systems continue to be woefully inadequate. In the book, James Pfeiffer explores the system of health care that has emerged in Mozambique after the arrival of PEPFAR.  Amid the country’s neoliberal dogged rejection of public-sector expenditures, Pfeiffer documents a fractured and uneven health system in which state-of-the-art facilities for HIV/AIDS testing and treatment coexist with all-but-dilapidated state hospitals, where wealthy donors create showcase clinics in one region while health centers in a neighboring region atrophy and their long-term sustainability is always in question. In this makeshift system, the focus is squarely at the clinical level where outcomes can be tallied. Health professionals are also in short supply as nongovernmental organisations pay them more. Here a poor national infrastructure and terrible economic hardships intersect with everyday social patterns to hinder AIDS treatment adherence, especially among pregnant women. Pregnant women are at higher risk of being ‘lost to follow up’. Faced with hunger, difficulties in accessing transportation, the severe side effects of medication, and the stigma associated with AIDS, too many pregnant women drop out of programs.

Thus, the rich case studies that compose When People Come First vindicate the role of ethnography in policy and medicine. First, field-based accounts allow for a telling juxtaposition of scales (ranging geographically, from a perspective at the level of the patient and the community to a much broader view of the impact of structural and economic factors on treatment and disease). Second, statistical and quantitative data can be productively reconciled with qualitative approaches. If ‘lost to follow up’ is viewed not just as a metric for judging the success or failure of a given intervention but is instead used as a starting point for looking beyond the limits such an evaluation imposes and into the confluence of other factors on the lives of the HIV-positive, then new ways of envisioning care and accountability might result. Ethnographic evidence can unleash new plans of action.

Public Values
While acknowledging that the biological and medical sciences have greatly contributed to today’s therapeutic armamentarium, the book also shows how evidence-based medicine (EBM) has steadily become the default language in the identification of global health problems and the measurement of program outcomes. Amid fluctuations in funding, the field of global health has been driven by scientifically based schemes of evaluation revolving around natural experiments, randomised controlled trials (RCTs), and statistical significance.

The field of global health has been driven by scientifically based schemes of evaluation revolving around natural experiments, and randomised controlled trials (RCTs).

The demands imposed by EBM can transform not only the evaluation of interventions, but also their methods, goals, and very subjects. Book contributor Vincanne Adams studied a resiliency-training program for children in post-Katrina New Orleans and a safe-motherhood training program for Tibetan health workers. The New Orleans program could only be deemed reliable and, ultimately, fundable, through the acquisition of commercially produced and internationally standardised assessment tools. In Tibet, the original project had to be changed because, according to sponsors, it was not possible to determine whether the intervention was more effective than chance because ‘not enough women’ died to produce a statistical effect. Following the advice of a US-based research consortium, the program-turned-study was made more ‘scientific’ and allegedly more generalisable by abandoning training in maternal health and focusing instead on infant mortality for which ‘better numbers’ were available.

Multi-dimensional empirical knowledge is crucial to the development of a patient-centered care delivery framework. This alternative knowledge can and should challenge the reductive frameworks that tend to inform donors’ priorities and funding decisions.

Global health data-making has become a profitable business. Abandoned in this new landscape of evaluation are the experiences of the nominal targets of intervention. The focus is not necessarily on the most pressing needs of local communities, nor is much consideration given to the long-standing effects of programs on the lives of people and on public institutions. As economist Angus Deaton states ‘randomised controlled trials have been given a free pass in the name of rigor. But there are no magic bullets and there are no gold standards’.3 With the hegemony of this theoretical and technical fix, the kinds of data we collect and our capacity to apprehend heterogeneity are compromised. Moreover, biosocial approaches to disease and health that could help to specify dynamic causal connections and local politics are relegated to the low-authority category of ‘soft’ science with little significance.

Needless to say, current technocratic approaches in global health perpetuate a limited understanding of narrowly conceptualised problems and support a rhetoric that offers only temporary control over isolated aspects of a given disease—a rhetoric that is aligned with the demands of funding organisations for immediate technical solutions. Global health thus mirrors the limitations of health care delivery in the United States and is ‘stuck in an access and volume mindset, rather than focusing on the value delivered to patients’, in the words of business scholar Michael E. Porter.4 Along with Jim Yong Kim and Paul Farmer, Porter is championing a new science of global health delivery that reaches the patients in need and attends to their full cycle of care and health outcomes.5 The focus must be primarily on the value of an intervention for patients over time (measured in survival rates and in the degree and sustainability of recovery) and not on a program’s success (measured, for example, by compliance with standardised guidelines or the number of drugs distributed).

A more holistic understanding of health is called for. As When People Come First shows, diverse disciplines must be engaged as we seek to understand the complexities of the context and content of interventions as well as the trial and error, the endless tinkering, of real people in specific circumstances trying to figure out what works for them. Such multi-dimensional empirical knowledge is crucial to the development of a patient-centered care delivery framework. This alternative knowledge can and should challenge the reductive frameworks that tend to inform donors’ priorities and funding decisions as well as global health evaluation schemes.

The focus of global health care delivery must be primarily on the value of an intervention for patients over time, and not on a program’s success.

Epistemological breakthroughs do not belong to experts and analysts alone. The unpredictable and cumulative experiences of people navigating health and humanitarian interventions and their aftermaths can also produce breakthroughs that demand recognition. This practical knowledge compels us to think of people not just as problems or victims, but also as agents of health. If this kind of engagement leads to the subtraction of quick-fix theories and policies, and to the advent of new ways of theorising and reconstructing worlds, so much the better.

This article is adapted from ‘Critical Global Health’ in Biehl, J. and Petryna, A (2013) When People Come First: Critical Studies in Global Health (New Jersey: Princeton University Press, 2013)

www.whenpeoplecomefirst.com

About the Authors


João Biehl is Susan Dod Brown Professor of Anthropology at Princeton University, where he also directs the Program in Global Health and Health Policy.

Adriana Petryna is Edmund J. and Louise W. Kahn Term Professor in Anthropology at the University of Pennsylvania.

References


1. Biehl, João, Joseph J. Amon, Mariana P. Socal, and Adriana Petryna. 2012. “Between the Court and the Clinic: Lawsuits for Medicines and the Right to Health in Brazil.” Health and Human Rights: An International Journal 14(1): 1–17.


2. Fiddler, David. 2007. “Architecture amidst Anarchy: Global Health’s Quest for Governance.” Global Health Governance 1(1): 1–17. http://diplomacy.shu.edu/academics/global health/journal/PDF/Fidler-article.pdf.


3. Deaton, Angus. 2012. Lecture: “How Can We Learn What Works in Health and Development?” Global Health Colloquium, Princeton University, October 5.


4. Porter, Michael. 2010. “Redefining Global Health Delivery.” Lecture at the Global Health Colloquium, Princeton University, September 24.


5. Kim, Jim Yong, Paul Farmer, and Michael Porter. 2013. “Redefining Global Health-Care Delivery.” The Lancet, Early Online Publication, 20 May 2013.

[/ms-protect-content]