When People Come First

When People Come First: Critical Studies in Global Health

JOÃO BIEHL
ADRIANA PETRYNA
Copyright Date: 2013
Pages: 344
https://www.jstor.org/stable/j.ctt2jc895
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  • Book Info
    When People Come First
    Book Description:

    When People Come Firstcritically assesses the expanding field of global health. It brings together an international and interdisciplinary group of scholars to address the medical, social, political, and economic dimensions of the global health enterprise through vivid case studies and bold conceptual work. The book demonstrates the crucial role of ethnography as an empirical lantern in global health, arguing for a more comprehensive, people-centered approach.

    Topics include the limits of technological quick fixes in disease control, the moral economy of global health science, the unexpected effects of massive treatment rollouts in resource-poor contexts, and how right-to-health activism coalesces with the increased influence of the pharmaceutical industry on health care. The contributors explore the altered landscapes left behind after programs scale up, break down, or move on. We learn that disease is really never just one thing, technology delivery does not equate with care, and biology and technology interact in ways we cannot always predict. The most effective solutions may well be found in people themselves, who consistently exceed the projections of experts and the medical-scientific, political, and humanitarian frameworks in which they are cast.

    When People Come Firstsets a new research agenda in global health and social theory and challenges us to rethink the relationships between care, rights, health, and economic futures.

    eISBN: 978-1-4008-4680-1
    Subjects: Anthropology, Health Sciences, Political Science

Table of Contents

  1. Front Matter
    (pp. [i]-[iv])
  2. Table of Contents
    (pp. [v]-[viii])
  3. Critical Global Health
    (pp. 1-20)
    JOÃO BIEHL and ADRIANA PETRYNA

    Janira lies in bed at home while her mother, Carmen, visits the public defender’s office in Porto Alegre, Brazil. Carmen is filing a lawsuit to obtain the medicine that her daughter urgently needs to treat severe pulmonary hypertension. A heart attack the year before led to a loss of mobility, and Janira has not been able to resume work. Her doctor has prescribed six medicines; five are provided through Brazil’s universal health system, while the sixth, a high-cost vasodilator, is not. The doctor advised the lowincome family to seek free legal assistance at the public defender’s office.

    Carmen hands the...

  4. I EVIDENCE
    • Overview
      (pp. 23-29)
      João Biehl and Adriana Petryna

      Enter history and you find the missing politics, then and now. When we look at international health interventions historically, it becomes clear that the political and economic requirements of the day and the ideological whims of the elites in charge determine how priorities are set and why they are abandoned. As social scientists unearth the recent history that explains how people become target populations in global health, unexpected anthropological terrains come into view: we find ourselves face-to-face with profound disconnections between how campaigns are designed and the complex ways in which they are actually received and critiqued. The counterknowledge of...

    • 1 A Return to the Magic Bullet? Malaria and Global Health in the Twenty-First Century
      (pp. 30-53)
      MARCOS CUETO

      At the turn of the twenty-first century, international efforts to combat malaria, one of the deadliest and most insidious rural scourges in modern history, entered a new phase, marked by the emergence of new medical technologies and the greater involvement of global agencies and local health workers. Initially, these changes raised hopes that a holistic intervention against malaria would replace the “magic bullet” approach that was launched in the mid-1950s and put an end to the apathy that had followed the failure of that initiative to achieve results. However, after a few years of innovation it now appears that most...

    • 2 Evidence-Based Global Public Health Subjects, Profits, Erasures
      (pp. 54-90)
      VINCANNE ADAMS

      The topic of this chapter is the impact of “evidence-based medicine” (EBM) on global public health.¹ An epistemic transformation in the field of global health is underway, and I will argue that the impact of evidence-based medicine has been twofold: (1) the creation of an experimental metric as a means of providing health care (following Petryna 2009);² and (2) a shift in the priorities of caregiving practices in public health such that “people [no longer] come first.” The production of experimental research populations in and through EBM helps constitute larger fiscal transformations in how we do global health. Notably, EBM...

    • 3 The “Right to Know” or “Know Your Rights”? Human Rights and a People-Centered Approach to Health Policy
      (pp. 91-108)
      JOSEPH J. AMON

      Human rights abuses fuel vulnerability to HIV infection and act as barriers to universal access to prevention, treatment, and care. This has been recognized in numerous international declarations, and attention to human rights has been incorporated into the mission statements and work plans of grassroots groups and global organizations alike. Yethowrecognition of this relationship is translated into action varies, as do the ways in which thelanguageof human rights has been employed by HIV programs and campaigns.

      “Treatment” activists, human rights advocates, and HIV programs of varying types (from evangelical and other faith-based organizations to youth groups...

    • 4 Children as Victims The Moral Economy of Childhood in the Times of AIDS
      (pp. 109-130)
      DIDIER FASSIN

      The “invention of childhood” in the West (Cunningham 1995), which has generated a considerable amount of debate among historians since the publication of Philippe Ariès’s influential book (1965), appears likely to be not only an ethnocentric view (Pollock 1983), but also a deceptively homogeneous concept (Bellingham 1988). The constructivist approach to childhood in fact comprises at least three main theoretical orientations. First, it posits a historical transformation of sentiments, asserting that until the sixteenth century childhood did not exist as a stage of life clearly distinguished from adulthood, and mothers had neither feelings of empathy toward nor attitudes conducive to...

  5. II INTERVENTIONS
    • Overview
      (pp. 133-139)
      João Biehl and Adriana Petryna

      A critical ethnography of global health must attend to the granular ways in which interventions (multiple and fragmentary and tied to neoliberal principles and strategies) become part and parcel of public health landscapes and social relations in resource-poor settings. The chapter by Susan Reynolds Whyte, Michael Whyte, Lotte Meinert, and Jenipher Twebaze focuses on the micropolitics of HIV/AIDS care in Uganda—the ways in which social networks are produced, expanded, and cultivated in efforts to access health programs and the associated benefits they confer—and how the roles of the state and ideas of political belonging are being transformed by...

    • 5 Therapeutic Clientship Belonging in Uganda’s Projectified Landscape of AIDS Care
      (pp. 140-165)
      SUSAN REYNOLDS WHYTE, MICHAEL A. WHYTE, LOTTE MEINERT and JENIPHER TWEBAZE

      When we first met Saddam in December 2005, he had come with another soldier, also on antiretroviral therapy (ART), to pick up antiretroviral medicines. In civilian clothes, they sat together on the bench waiting to see the clinical officer, chatting in Kiswahili and English. They shared lodgings in the barracks and sometimes made the 15-km journey together to Mukuju, where they were enrolled in an ART program at the government health center. Mukuju was not the nearest source of antiretroviral drugs (ARVs) for Saddam, but it was there he belonged as a client through the eighteen months we followed him....

    • 6 The Struggle for a Public Sector PEPFAR in Mozambique
      (pp. 166-181)
      JAMES PFEIFFER

      The President’s Emergency Program for AIDS Relief (PEPFAR) has significantly transformed the global health landscape by injecting US$15 billion into HIV/AIDS care and treatment programs in twenty countries between 2004–2010. In Mozambique, PEPFAR funds constituted nearly 60 percent of all health sector planned spending by 2008 (HPG 2007). While debates about PEPFAR’s restrictions on condom promotion, sex worker education programs, and abortion/reproductive health have dominated critiques of the program, perhaps the single most important aspect of PEPFAR’s rollout has largely escaped scrutiny in the wider global discussion: PEPFAR funding, by design, does not directly flow through the public sector....

    • 7 The Next Epidemic Pain and the Politics of Relief in Botswana’s Cancer Ward
      (pp. 182-206)
      JULIE LIVINGSTON

      This chapter looks closely at some of the more fine-grained processes of clinical care in order to suggest how cancer, as an emergent issue in African public health, forces longstanding questions of palliation to the foreground and highlights the intensely social nature of pain.¹ I will explore the conditions that facilitate the marginalization of pain and palliation in African clinical practice and in global health more widely, and I will examine the contemporary clinical dynamics that engender this marginalization in the specific context of oncology, where many patients suffer severe and intractable pain, as a result either of their illness...

    • 8 A Salvage Ethnography of the Guinea Worm Witchcraft, Oracles and Magic in a Disease Eradication Program
      (pp. 207-240)
      AMY MORAN-THOMAS

      This is a story about a hard-fought health campaign against a centuries-old pathogen, a program now nearing its final goal of global eradication. Yet it is also a story full of conflicting priorities and values, and the laden paradoxes of humanitarianism at play as medicine breaches boundaries not normally thought of as permeable.¹

      Or at least, that is one way of saying that on the morning when the Ghana Guinea Worm Eradication Program sent two team members to a small dam in the village of Taha to put treatment chemicals in the community’s drinking water—hoping to interrupt the plague...

  6. III MARKETS
    • Overview
      (pp. 243-251)
      João Biehl and Adriana Petryna

      Various movements are afoot in the field of global health: from the collective control of epidemics to the personalization of disease; from trial and error to the standardization of evidence and policy; from health as a public good to the pharmaceuticalization of health care; from governmental detachment to the industrialization of the nongovernmental sector and a privatized politics of survival. Alongside them, critical questions abound: Has the biopolitical morphed into a multilevel turf war of private versus public stakeholders battling over the utility of government? Where does this leave the majority and the “surplus” poor and diseased subjects who are...

    • 9 Public-Private Mixes The Market for Anti-Tuberculosis Drugs in India
      (pp. 252-275)
      STEFAN ECKS and IAN HARPER

      Ten years ago, Paul Farmer called tuberculosis the “forgotten plague” (Farmer 2000:185). While millions of people were dying every year of TB, the disease had become invisible for people living in rich countries. When the disease was rampant in the richer industrialized countries, it was at the forefront of public interest, but when, thanks to better nutrition, healthier living conditions, and more effective drugs, TB “ceased to bother the wealthy,” it faded from sight (ibid.). Against this forgetfulness, Farmer urged anthropologists to listen to the voices of the poor and to record their stories of deprivation and discrimination. But he...

    • 10 Labor Instability and Community Mental Health The Work of Pharmaceuticals in Santiago, Chile
      (pp. 276-301)
      CLARA HAN

      “If I give money, I exist,” said Violeta. It was October 2004, and Violeta had hardly eaten for the past week. I came to visit her in her small shack situated behind her parents’ house. Although it was a pleasantly cool night, she was wrapped in wool sweaters and had heaped blankets on top of herself. All I could see as she spoke to me was a pair of intense brown-black eyes, peering out from under the covers. Sparked by a violent argument with her parents over her need to contribute monetarily to the home, Violeta had attempted suicide by...

    • 11 The Ascetic Subject of Compliance The Turn to Chronic Diseases in Global Health
      (pp. 302-324)
      IAN WHITMARSH

      In 2002 the World Health Organization issued a World Health Report that focused on noninfectious chronic diseases (2002c). The report noted that diseases such as heart disease, diabetes, cancer, and asthma were increasing globally. This attention to chronic conditions marks a departure from a focus on the urgent communicable diseases that have historically been the objects of global public health initiatives. In this new arena, there are no infections to prevent, no contagion to stanch, no immunizations or treatments to make mandatory. I explore here the medical subject that emerges out of this twenty-first-century global health focus on diseases of...

    • 12 Legal Remedies Therapeutic Markets and the Judicialization of the Right to Health
      (pp. 325-346)
      JOÃO BIEHL and ADRIANA PETRYNA

      Seven children lie in a hospital room, each hooked up to an intravenous drip.² Their parents stand near them, bantering with each other and with the doctors who circulate in and out. Every week these parents bring their young children, who suffer from a disorder called mucopolysaccharidosis (MPS) here, to the Research Unit of Hospital Universitário, a public teaching hospital in Porto Alegre, the capital of the southern state of Rio Grande do Sul, Brazil.³ The children are receiving enzyme replacement therapy (ERT), which can cost up to US$200,000 dollars per year per patient.⁴

      MPS encompasses a group of inherited...

  7. Afterword The Peopling of Technologies
    (pp. 347-374)
    MICHAEL M. J. FISCHER

    I want to explore the remarkable array of ethnographic case studies in this book by readingfor the peopleand readingfor the bioecologies at play. I use the term “ecologies” as a means of probing for the proper identifications and scales of interactions in global health, particularly at biochemical, molecular, computational, and informatics granularities that previously have not been accessible. We are arguably undergoing one or more epistemic revolutions, all too slow for the desperately ill, but stunningly fast in terms of the pedagogies in which we have been trained and in which we still too often think. Two...

  8. Contributors
    (pp. 375-380)
  9. Acknowledgments
    (pp. 381-384)
  10. References
    (pp. 385-424)
  11. Index
    (pp. 425-446)