Fault Lines of Care: Gender, HIV, and Global Health in Bolivia

By Carina Heckert

The HIV epidemic in Bolivia has received little attention on a global scale in light of the country’s low HIV prevalence rate. However, by profiling the largest city in this land-locked Latin American country, Carina Heckert shows how global health-funded HIV care programs at times clash with local realities, which can have catastrophic effects for people living with HIV who must rely on global health resources to survive. These ethnographic insights, as a result, can be applied to AIDS programs across the globe.
 
In Fault Lines of Care, Heckert provides a detailed examination of the effects of global health and governmental policy decisions on the everyday lives of people living with HIV in Santa Cruz. She focuses on the gendered dynamics that play a role in the development and implementation of HIV care programs and shows how decisions made from above impact what happens on the ground.  

• Language: English
• Publisher: Rutgers University Press
• Release date: Jun 1, 2018
• ISBN: 9780813586922

Book preview

Fault Lines of Care

Medical Anthropology: Health, Inequality, and Social Justice

Series editor: Lenore Manderson

Books in the Medical Anthropology series are concerned with social patterns of and social responses to ill health, disease, and suffering and how social exclusion and social justice shape health and healing outcomes. The series is designed to reflect the diversity of contemporary medical anthropological research and writing and will offer scholars a forum to publish work that showcases the theoretical sophistication, methodological soundness, and ethnographic richness of the field.

Books in the series may include studies on the organization and movement of peoples, technologies, and treatments; how inequalities pattern access to these; and how individuals, communities and states respond to various assaults on well-being, including from illness, disaster, and violence.

Carina Heckert, Fault Lines of Care: Gender, HIV, and Global Health in Bolivia

Joel Christian Reed, Landscapes of Activism: Civil Society and HIV and AIDS Care in Northern Mozambique

Artistic depiction of Ana, a Bolivian woman living with HIV. Credit: Victoria De Anda.

Fault Lines of Care

Gender, HIV, and Global Health in Bolivia

Carina Heckert

Rutgers University Press

New Brunswick, Camden, and Newark, New Jersey, and London

Library of Congress Cataloging-in-Publication Data

Names: Heckert, Carina, 1983– author.

Title: Fault lines of care : gender, HIV, and global health in Bolivia / Carina Heckert.

Description: New Brunswick : Rutgers University Press, [2018] | Series: Medical anthropology: health, inequality, and social justice | Includes bibliographical references and index.

Identifiers: LCCN 2017054097| ISBN 9780813586915 (cloth : alk. paper) | ISBN 9780813586908 (paperback : alk. paper) | ISBN 9780813586922 (epub) | ISBN 9780813586939 (web pdf)

Subjects: LCSH: AIDS (Disease)—Bolivia. | HIV infections—Bolivia.

Classification: LCC RA643.86.B5 H43 2017 | DDC 362.19697/9200984—dc23

LC record available at https://lccn.loc.gov/2017054097

A British Cataloging-in-Publication record for this book is available from the British Library.

All photographs by author unless otherwise noted.

Copyright © 2018 by Carina Heckert

All rights reserved

No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, or by any information storage and retrieval system, without written permission from the publisher. Please contact Rutgers University Press, 106 Somerset Street, New Brunswick, NJ 08901. The only exception to this prohibition is fair use as defined by U.S. copyright law.

www.rutgersuniversitypress.org

Contents

Foreword by Lenore Manderson

Chapter 1. Fault Lines

Chapter 2. Decolonizing Bolivia

Chapter 3. When Care Is a Systematic Route of Torture

Chapter 4. Aiding Women

Chapter 5. Synergistic Silences

Chapter 6. Blaming Machismo

Chapter 7. The Biopolitical Drama of HIV Funding

Chapter 8. Decolonizing Global Health

Acknowledgments

Notes

References

Index

About the Author

Foreword

Lenore Manderson

Medical Anthropology: Health, Inequality, and Social Justice is a new series from Rutgers University Press designed to capture the diversity of contemporary medical anthropological research and writing. The beauty of ethnography is its capacity, through storytelling, to make sense of suffering as a social experience and to set it in context. Central to our focus in this series on health and social justice, therefore, is the way in which social structures and ideologies shape the likelihood and impact of infections and injuries, bodily ruptures and disease, chronic conditions and disability, treatment and care, social repair and death.

The brief for this series is broad. The books are concerned with health and illness, healing practices, and access to care, but the authors also illustrate the importance of context—geography, physical condition, service availability, and income. Health and illness are social facts; the circumstances of the maintenance and loss of health are always and everywhere shaped by structural, global, and local relations. Society, culture, economy, and political organization as much as ecology shape the variance of illness, disability, and disadvantage. But as medical anthropologists have long illustrated, the relationships between social context and health status are complex. In addressing these questions, the authors in this series showcase the theoretical sophistication, methodological rigor, and empirical richness of the field while expanding a map of illness and social and institutional life to illustrate the effects of material conditions and social meanings in troubling and surprising ways.

The books in the series move across social circumstances, health conditions, and geography and their intersections and interactions to demonstrate how individuals, communities, and states manage assaults on well-being. The books reflect medical anthropology as a constantly changing field of scholarship drawing on diverse research in residential and virtual communities, clinics, laboratories, emergency care, and public health settings and with service providers, individual healers, households, social bodies, human bodies, and biologies. While medical anthropology once concentrated on systems of healing, particular diseases, and embodied experiences, today the field has expanded to include environmental disaster and war, science, technology and faith, gender-based violence, and forced migration. Curiosity about the body and its vicissitudes remains a pivot for our work, but our concerns are with the location of bodies in social life and with how social structures, temporal imperatives, and shifting exigencies shape life courses. This dynamic field reflects an ethics of the discipline to address these pressing issues of our time.

Globalization has contributed to and adds to the complexity of influences on health outcomes; it (re)produces social and economic relations that institutionalize poverty, unequal conditions of everyday life and work, and environments in which diseases increase or subside. Globalization patterns the movement and relations of peoples, technologies and knowledge, and programs and treatments; it shapes differences in health experiences and outcomes across space; it informs and amplifies inequalities at individual and country levels. Global forces and local inequalities compound and constantly impact individuals’ physical and mental health and their households and communities. At the same time, as the subtitle of this series indicates, we are concerned with questions of social exclusion and inclusion, social justice and repair, again both globally and in local settings. The books challenge readers to reflect not only on sickness and suffering, deficit and despair, but also on resistance and restitution—on how people respond to injustices and evade the fault lines that might seem to predetermine life outcomes. While not all the books take this direction, the aim is to widen the frame within which we conceptualize embodiment and suffering.

Carina Heckert’s book Fault Lines of Care: Gender, HIV, and Global Health in Bolivia is the first book in this series. The setting is the city of Santa Cruz, Bolivia; the key actors are poor women living with HIV; the backdrop is the agendas of global health agencies. Heckert is concerned with the uneven translation of global funding strategies. In Bolivia, enduring understandings and relations of sex and gender influence the possibility of HIV infection and access to treatment and shape the development and implementation of HIV care programs. Other local fault lines, including class and ethnicity, also complicate the rollout, accessibility, and acceptability of programs and so influence how people live with HIV.

Heckert offers us a compelling, nuanced, and provocative account of women—and men and children—subject to local HIV policies and programs. In writing this narrative, she interrogates the relationship between gender and the politics of both global health and life itself. HIV, we see, is everywhere entangled with gender. As Heckert illustrates—setting out a theme that will recur in later books in this series—infection, illness, treatment, and care are patterned by the complex interactions of individuals in communities and at state and global levels. In illustrating how HIV tracks social fault lines, Heckert insists that we maintain our engagement with the infection and resist yielding to a discourse that HIV has run its course. But she also illustrates, as will others whose work will appear in this series, how any infection, disease, or decline in capacity is inflected by social structures—class, gender, and race—and by the unevenness of power within and beyond nations.

1

Fault Lines

On October 2, 2013, I was just over a month into a 12-month stretch of fieldwork in Santa Cruz, Bolivia. Unlike the Andean region that people often associate with Bolivia, Santa Cruz is in the tropical lowlands and is hot and humid throughout most of the year. There is some relief from the heat in the winter months that comes from surazos, or cold Antarctic winds that make their way across the Argentinian Pampas and cause a sudden drop in temperature. That morning in October marked the end of what would be the last surazo of winter, and the temperature was just beginning to warm up. On this pleasant spring morning, I waited inside the main entrance of Epua Kuñatai¹ (or Epua for short), an NGO that provides social support for women and children affected by HIV.

Epua’s social worker, Carmen, had requested my assistance with an acompañamiento, accompanying a patient in her quest for care. This service can help ensure that patients are able to find their doctors’ offices and understand the instructions for having lab work and taking medications and provide an overall source of support as patients navigate the health care system. According to my phone conversation with Carmen the night before, a young woman, Gabriela, had recently arrived from Puerto Suárez, a town that lies near Bolivia’s border with Brazil and is a 12-hour bus ride from Santa Cruz. Gabriela had traveled with her mother, Hilda, and her three-year-old daughter. Both Gabriela and her daughter had recently tested positive for HIV after Gabriela began showing symptoms of tuberculosis. Given the family’s lack of familiarity with the city and the number of places they needed to go that day, Carmen thought I could be of some assistance. Carmen arrived at Epua a few minutes after me, followed by Hilda and her cousin, Jimy, who lived in the city. Jimy had agreed to drive everyone around for the day in his 1970s Toyota sedan.

Upon Jimy’s arrival, Hilda went upstairs to help Gabriela. Gabriela had been staying in one of the extra rooms in Epua where women can stay if they have nowhere else to go. The image of Hilda struggling to help her adult daughter down the stairs seared itself into my memory. The moment captures the love that drives people to follow every possible route, often sacrificing their own well-being, to help a loved one survive. Gabriela’s physical state also struck me. Although she was bundled up, her baggy clothes hinted at wasting. Her eyes, sunken into the sockets, peered out above the face mask that marked her as having tuberculosis. The image was reminiscent of media portrayals of AIDS patients as suffering strangers (Butt 2002) prior to the availability of lifesaving antiretrovirals (ARVs). It was also an image I would become familiar with during my research, despite the availability of free ARVs.

Once everyone was in the car, Carmen gave Gabriela an extra blanket to stay warm even though it was a comfortable temperature for the rest of us. Gabriela revealed her pain as we drove toward the Red Cross clinic in the center of the city. She had not slept at all the night before. She moaned that she felt like her head was going to explode and that her heart was going to rupture, but it was her back that hurt the worst. Every few minutes, she moved her mask to the side, gasping for breath.

Until just before Gabriela’s arrival in Santa Cruz, the Red Cross clinic had been a primary center for tuberculosis testing and the initiation of treatment. When we arrived, Jimy and I helped Gabriela out of the car and into the waiting room while Carmen went to ask for an appointment at the front desk. Once we were finally seated, Carmen came back looking frustrated, saying, "We are going to have to go to the clinic in La Villa." Even though doctors typically referred patients who were exhibiting signs of tuberculosis to the Red Cross clinic, the nurses had told Carmen that because of a new protocol aimed at integrating tuberculosis care with other health care services, the clinic was now only testing and referring people to other health centers for treatment. Carmen had not known about this new protocol. If Gabriela wanted to start treatment quickly, she would need to go to a municipal health center instead. Carmen decided it would be best to go to the clinic 18 de Marzo in La Villa Primero de Mayo, a working-class neighborhood on the northeastern edge of the city, since that was where one of only two pediatric HIV specialists in the city worked. Carmen could take Gabriela’s daughter to the pediatrician while I accompanied Gabriela for her tuberculosis test.

As we fought traffic on the way to La Villa, Jimy vented his frustrations, yelling, Don’t they see her condition? She could die waiting! As we drove, we stopped in the market La Mutualista to pick up one of Jimy’s friends. So that Gabriela could sit comfortably up front, Carmen, Hilda, Jimy’s friend, and Gabriela’s daughter squeezed with me into the back seat, piling on top of each other. Although the rusted Toyota stalled several times along the way, we managed to make it to the clinic in La Villa.

We arrived to a crowded clinic, but a nurse quickly shuffled Gabriela toward the tuberculosis testing office. Once inside the office, the nurse explained that as a part of the tuberculosis test, Gabriela should also take an HIV test. An already weak Gabriela asked, Do you really need to take more blood? They already tested me, and it came back positive. The nurse insisted she should have the test done again. Gabriela rested her head in the palm of one hand as the nurse pricked a finger on her other hand and squeezed a drop of blood onto a small strip of paper. The HIV rapid test result would be available in minutes. Next, the nurse said she would need to take Gabriela’s weight and blood pressure. In pain, Gabriela stood up to walk to the scale—38 kilos (84 pounds), the nurse read.

As this was being done, another nurse asked Hilda for Gabriela’s carnet, or national ID card. Before passing the nurse the ID, Hilda showed me the healthy, vibrant young woman in the photo, lamenting, She was always a good weight. She wasn’t fat, but like you. Gabriela then struggled over to a chair, gasping for air and begging for water. I walked over to a water stand, noting a faded United States Agency for International Development (USAID) sticker on the tank as I poured a small cup of water. The USAID sticker served as a reminder that the clinic had been established in partnership with the international development agency. Just months before, the Bolivian government had expelled USAID as a part of broader efforts to distance the country from what it described as agents of imperialism.

The nurse then came over, giving me two small specimen cups, explaining that someone would need to collect two sputum samples the following morning—one at 5:00 a.m. and one at 7:00 a.m. Then someone would need to bring the specimen cups back to the clinic before 8:00 a.m. to complete the full test. After that, it would still take several days to have the results. Although Gabriela exhibited all the classic symptoms of tuberculosis and had received a positive test result in Puerto Suárez, her results were meaningless in Santa Cruz. The Ministry of Health² protocol for treating tuberculosis prevented her from starting treatment until the health center where she would receive care had confirmed a positive test result. The purpose of following this protocol, developed in line with the World Health Organization (WHO) guidelines, was to ensure that patients began a drug regimen appropriate for the tuberculosis strain with which they were infected in order to avoid potential development of drug resistance. However, this protocol can prolong the wait before a patient begins treatment, especially when there is a lack of coordination among the various health centers where a patient may seek care.

As Hilda helped Gabriela back to the car, I found Carmen sitting on a bench outside of the pediatrician’s office with Gabriela’s daughter on her lap. I explained to Carmen the protocol for the sputum cups. We began to speculate that we thought Gabriela had a good chance of recovery, especially with so much help from her family. At that point, the pediatrician stepped out of his office. The doctor, a short, silver-haired man with a potbelly, bellowed to the mothers with crying children, None of you are feeding your children correctly. Before I will see anyone else today, you must all go to a nutrition consultation. He declared that an intern from the university would start the demonstration in an hour. He would take no other patients until after the nutrition session.

Carmen’s face dropped. You aren’t in a hurry, are you? she asked me, explaining that she could not possibly wait, as she needed to return to Epua to prepare the materials for an employment skills training session she was in charge of in the afternoon. I agreed to wait with Hilda and the child while Jimy drove Carmen and Gabriela back to Epua.

After I sat with Hilda and her granddaughter for more than an hour in the crowded waiting area, a student intern led the line of mothers and restless children into an empty room filled with desks. The nutrition session consisted of the student intern teaching the mothers two recipes for healthy baby food, using a blender and foods that included liquid yogurt, cooked vegetables, and rice. Hilda was an eager student, asking many questions and requesting that I write down the recipes for her. Following this session, we went back to the waiting area, where we waited. And waited. And waited. During the wait, Hilda began to peel and slice several apples that she had in her purse, forcing her grandchild to eat. As she did so, she told me about her life and Gabriela’s illness.

Hilda was a domestic worker, but she requested the week off to bring her daughter to Santa Cruz, where she thought the medical care would be better. The trip had wiped out her savings; at one point she commented, Everything costs something. Gabriela had worked as a street vendor selling prepaid phone cards for cell phones. Hilda attributed the tuberculosis to this line of work, saying that all the dust from the street had damaged Gabriela’s lungs. Gabriela had been losing weight for about a year, but she did not seek medical care until about six weeks prior to her trip to Santa Cruz, when her health began to deteriorate more rapidly. According to Hilda, Gabriela had feared how much it would cost to see a doctor, and at one point, she had started to feel better. At the time, Gabriela was unaware that she had HIV and that there were free medications to treat it. Following her HIV diagnosis, Gabriela disclosed her status to her daughter’s father, and he blamed her for it. According to him, his own test had come back negative. Hilda looked upset and became quiet as she recounted this detail. I found Hilda’s unfaltering support for her daughter touching, and I could not imagine someone in Gabriela’s condition being able to survive without that kind of support.

Is she going to die? Hilda asked me at one point.

Finally, we saw the pediatrician. He asked many questions: Will she be staying here or returning to Puerto Suárez? What tests have been done so far? Did they give you her CD4 count? Hilda looked ashamed, as she was unable to answer these questions. No one had given me any of the child’s medical paperwork, nor had I thought to ask for it, and I felt impotent as the doctor looked at me, expecting me to answer on Hilda’s behalf. The doctor then examined the child quickly, commenting, She has intestinal bugs. At the end of the session, the doctor rattled off a list of medications he was prescribing and gave instructions for lab work.

On the bus ride back to Epua, Hilda’s granddaughter fell asleep in her arms. The young child’s stomach, bloated from parasites, poked out from under a shirt she had long outgrown. Back at Epua, I helped carry the child to Gabriela’s room. Gabriela was sitting upright on the bed, shirtless. She was heaving in pain and drenched in a feverish sweat.

Two weeks later, Gabriela died in Puerto Suárez. Before her death, her tuberculosis test came back negative. The doctors immediately suspected a false negative, but the clinic’s protocol required that she wait at least two weeks before taking another test. Smear testing of sputum samples, the type of testing Gabriela received, remains an imprecise means of detecting tuberculosis, especially for patients coinfected with HIV (Steingart et al. 2012). Use of sputum testing alone detects roughly 59.6 percent of positive cases, with this number dropping to 47 percent for patients with HIV (WHO 2010). Beginning in 2010, WHO guidelines began recommending the use of a new rapid test for tuberculosis (the Xpert test) based on evidence that it detects more than 91 percent of tuberculosis positive cases, with HIV coinfection not significantly impacting the test’s validity. A comparison of data from several countries indicates that when a smear test yields a false negative, the additional use of the Xpert test results in an average wait time of four days before beginning tuberculosis treatment. Without this additional test, the average wait time before beginning treatment is 58 days (WHO 2010). For patients like Gabriela, a 58-day wait is a death sentence. Despite the fact that Bolivia has one of the highest rates of tuberculosis infection in the Western Hemisphere and received more than $10 million specifically for tuberculosis testing and treatment from 2004 to 2013 from the Global Fund to Fight AIDS, Tuberculosis, and Malaria (or simply the Global Fund; Global Fund 2017a), the Xpert test was unavailable.

Following Gabriela’s test results, Hilda had to make a decision. Should Hilda wait in Santa Cruz with Gabriela until she could take another tuberculosis test and risk losing her job in Puerto Suárez? Should she leave Gabriela in Santa Cruz with no family to look after her? In the end, Gabriela, her mother, and her daughter returned to Puerto Suárez together. Gabriela died at home with her mother caring for her.

Upset by the circumstances of Gabriela’s death, I spent the remainder of my time in Bolivia seeking to understand why events had unfolded the way they did. Hilda’s question, Is she going to die?, and my response to her question continue to haunt me. I began my research with a sense of optimism about the role that ARV rollout had played in saving lives around the world. In my graduate training in medical anthropology, I read a heavy dose of the work of medical anthropologist and physician Paul Farmer. This included looking at his photos of the Lazarus effect of ARVs in Haiti (Farmer 2010)—before-and-after images of individuals on the verge of death who had regained their health in a span of months after beginning ARVs. With these images in mind, I responded to Hilda’s question with a confident No, she will get better and proceeded to explain to her how the ARVs could help rebuild Gabriela’s immune system. Hilda responded quietly, My son died last year in an accident. I can’t lose another child.

Gabriela’s death was the first AIDS-related death I witnessed in Bolivia during a period of fieldwork that spanned 12 consecutive months in 2013 and 2014. In my remaining time in the field, more than a dozen people whom I would come to know, some more closely than others, died from AIDS-related causes. After returning to the United States, I continued to receive updates about my interlocutors, some of whom had become friends, who had died from AIDS. During a return trip in the summer of 2016, I learned of yet others who had died. Most of these deaths occurred because the person fell out of care, did not seek care, or sought care when it was too late.

These deaths are a part of a larger pattern in Bolivia and bring to light the need to interrogate the ways that HIV interventions continue to leave people behind. At first glance, it is easy to assume that the HIV epidemic in Bolivia is rather unremarkable in relation to the epidemic on a global scale. The 17,334 cases of HIV registered in the country between 1984 and October 2016 (CDVIR 2016) pale in comparison to the 78 million cases of HIV documented globally (UNAIDS 2016). With an estimated HIV prevalence rate of 0.15 percent, Bolivia has one of the lowest rates of HIV in Latin America (Medrano Llano 2014). Although the overall rate of infection in Bolivia is low, more than half of all reported cases have consistently been in Santa Cruz.

Under pressure from HIV activists, the national government declared access to free and comprehensive care for HIV a legal right in 2007. Further, treatment and prevention programs received $42.8 million in funding from the