Fault Lines of Care: Gender, HIV, and Global Health in Bolivia 9780813586939

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FAULT LINES OF C ARE

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 C ARE Gender, HIV, and Global Health in Bolivia

C a rin a Hec kert

Rutger s Uni v er sit y P r ess

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. The paper used in this publication meets the requirements of the American National Standard for Information Sciences—­Permanence of Paper for Printed Library Materials, ANSI Z39.48-­1992. www​.rutgersuniversitypress​.org Manufactured in the United States of America

CONTENTS

Foreword by Lenore Manderson

ix

1

Fault Lines

1

2

Decolonizing Bolivia

29

3

When Care Is a “Systematic Route of Torture”

50

4

Aiding Women

68

5

Synergistic Silences

88

6

Blaming Machismo 106

7

The Biopolitical Drama of HIV Funding

125

8

Decolonizing Global Health

145

Acknowledgments 159 Notes 163 References 169 Index 183

vii

FOREWORD Lenor e M a n der son

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. ix

x Foreword

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

Foreword xi

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.

FAULT LINES OF C ARE

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 1

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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.



Fault Lines 3

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

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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



Fault Lines 5

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.

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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 Global Fund between 2004 and 2016, with the aim of making universal treatment for HIV a reality (Global Fund 2017a). Massive funding for HIV in Bolivia was part of a larger global health effort to respond to HIV as an exceptional condition given the biological, social, and cultural contexts of the disease, which justified an exceptional response (Benton 2015). As a part of HIV exceptionalism, global governing bodies have set the lofty goal of ending AIDS by 2030, and the United Nations (U.N.) outlined mechanisms for achieving this goal in the



Fault Lines 7

2016 Political Declaration on HIV and AIDS (U.N. 2016). Yet Bolivia offers a disturbing example of why reaching the goal of ending AIDS by 2030 is simply not going to happen. Despite the legal right to care for people with HIV, the massive ARV rollout made available via support from the Global Fund, and a low disease burden, Bolivia has consistently had the lowest ARV coverage in the Americas.3 The most recent figures indicate that only 35 percent of individuals with advanced HIV infection were accessing ARVs (Medrano Llano 2014; PAHO 2012). Many activists and public health officials whom I met insisted that the percentage was actually far lower than this, referencing their experiential knowledge of large numbers of cases going unreported. One factor contributing to underreporting is that a positive test result has to be recorded at a public health facility in order for the case to be registered. People who receive a positive result at a private facility or in a massive testing campaign, such as at a health fair, are told to report to a public clinic for follow-­up care. Often, this never happens and the case goes unreported (Ramírez Hita 2013). Those who do not access care or fall out of care succumb to opportunistic infections and eventual death. Additionally, a significant percentage of newly registered cases of HIV in Bolivia are detected when the patient has already progressed to AIDS (Medrano Llano 2014).4 As was the case for Gabriela, by the time a patient has progressed to AIDS, there may not be enough time left for the ARVs to enable a person’s immune system to recover. The gap between lofty global health goals and the reality of people dying from AIDS in Bolivia points to the persistence of the fault lines that continue to drive the epidemic. This book is about the fault lines that produce AIDS-­related deaths like Gabriela’s in Bolivia at a time when an HIV diagnosis should no longer be a death sentence. By the late 1980s, scholars of HIV widely recognized that the disease was spreading along the fault lines of society (Bateson and Goldsby 1988; Fineberg 1988), as it most heavily affected social groups marginalized by structures of oppression (Parker 2001; Schoepf 2001). The fault lines generated by economic injustice, racial hierarchies, heteronormative expectations, and gender inequality are clearly relevant in Bolivia, which has long been one of the poorest countries in the Western Hemisphere and is characterized by deeply rooted racial hierarchies dating back to the Spanish conquest. While these dynamics of social oppression are central to understanding HIV in Bolivia, I expand upon the conceptualization of fault lines to interrogate how global health initiatives prioritize addressing some fault lines over others while generating a new system of fault lines in the process. I focus specifically on the fault lines of care—­the ways that the system of HIV care itself generates gaps in who accesses services, under what circumstances, and the ways that people experience care, stay in care, fall out of care, or avoid seeking care.

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International development agencies, including global health organizations, are keenly aware of certain forms of fault lines, especially those related to gender and poverty, and have attempted to address some aspects of social inequality as a part of HIV interventions. For example, beginning in the late 1990s, the World Bank began experimenting with financing cash-­transfer programs as both a poverty-­reduction and HIV-­prevention strategy. The underlying assumption was that with increased financial security, the beneficiaries of cash transfers would be less likely to engage in risky sexual behaviors. These interventions have had mixed results, with cash transfer programs resulting in reduced risk behaviors in some contexts while actually increasing risk behaviors in others (Kohler and Thornton 2011). In Bolivia, the World Food Programme financed a pilot livelihood intervention by integrating nutrition counseling and food supplement access into existing HIV treatment programs. An evaluation of this program found that patients felt the focus on nutrition alone was limiting because it did not capture the complexity of their livelihood needs, such as the need to migrate for work or the inability to take time off from work to go to the clinic (Palar et al. 2013). These examples illustrate that fault lines are complex and not easily alleviated by targeted and clearly defined interventions. Furthermore, as epidemiological evidence increasingly shows, the relationship between HIV and structural vulnerability is far from linear. Following the end of the civil war in Sierra Leone, public health officials expected to see high rates of HIV, yet the prevalence rate remained low (Benton 2015). Conversely, in Kenya, middle-­class individuals appear to be more vulnerable to HIV and less engaged in prevention and testing services than are Kenyans living in poverty (Moyer and Hardon 2014). It is with these points in mind that I interrogate the relationship between fault lines and HIV. In a geologic sense, fault lines rarely consist of clean fractures; more often, they are zones of tension with ragged edges. Some fault lines are clearly visible; others are deep within the earth’s surface, and their only evidence is seismic waves. Certain stressors, such as the movement of magma, can create enough pressure to generate new fault lines or weaken already existing fault lines. The fault lines of society are equally complex. The health effects of poverty, gender inequality, and racial inequality are often obvious. Less obvious are the ways that health interventions with good intentions can create rifts. For example, HIV interventions have at times generated new social inequalities by granting resources only to those who are HIV positive in contexts where almost everyone is struggling to survive (Kalofonos 2010). Despite this complexity, global health interventions too often conceptualize fault lines as clear-­cut rifts that can be fixed with enough resources. Over the past three decades, HIV has become a multi-­billion-­dollar industry that has given



Fault Lines 9

birth to global health bodies dedicated to fighting the epidemic, including the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the Global Fund. Jim Kim (2007), a medical anthropologist and physician who became president of the World Bank in 2012, described the decade preceding my fieldwork as the golden age of global health. Unprecedented global health investment in HIV programs and efforts to provide widespread access to lifesaving medications in resource-­poor settings characterized this era. As HIV funding has continued, in 2015 alone, global spending on HIV reached an estimated $19 billion (Kates et al. 2016). Bolivia has relied on these global health efforts, with the Global Fund providing more than 75 percent of all financing for HIV-­related programs in the country between 2004 and 2014 (Medrano Llano 2014; PAHO 2012). A central tenet of the U.N. Political Declaration on HIV and AIDS is a call for more funding (U.N. 2016), further indicating that some policy makers view funding as the magic bullet for ending HIV. Despite the massive funding efforts behind HIV, Gabriela fell through the cracks. After hearing about and watching similar circumstances unfold for other Bolivians with HIV, I began to understand the complexity of the fault lines behind Gabriela’s death. There were the commonly recognized disadvantages associated with being a poor woman in a poverty-­stricken country. The services provided by Epua sought to address these issues by offering Gabriela a place to stay, support in seeking care, and if she were to recover, job training opportunities. Yet the fault lines ran deeper than this; some of these are the product of the history of global health interventions in Bolivia.

Global Health Governance in Bolivia Gabriela’s experience crossing the city from an NGO to a public health clinic in search of care illuminates the fragmentation of Bolivia’s health care system, which is composed of an “unruly mélange” ( Janes and Corbett 2009, 175) of services that often have a disease-­specific focus. The public health care facilities in particular typically have long lines of poor patients waiting for care, while they are utterly avoided by those who can afford private clinics. It is a system where facilities are chronically understaffed, wait times can be disastrously long, employees are frequently on strike, and on some occasions, facilities do not even have a clean water supply5 (Castro 2016; Página Siete 2017; Ramírez Hita 2011). The Departmental Health Services (Bolivia has nine departments, or states) admits that the health care system is of such poor quality that it has “lost all credibility among the population” (SEDES 2014). On top of the poor quality of care, the health care system remains prohibitively expensive for most of the population. Fifty-­seven percent of Bolivians have no form of health insurance coverage (Ledo and Soria 2011) and nearly 40 percent live below the poverty

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line (World Bank 2015a). Prohibitive costs and poor-­quality services have created a scenario where patients like Gabriela wait until the last possible moment to seek care or, in other cases, do not seek care at all. The historical context of the current state of the Bolivian health care system, and the role of disease-­specific global health interventions within it, is important to consider. The AIDS epidemic has been described as emblematic of the ills of neoliberalism. The 1980s and 1990s saw the withdrawal of policies of redistribution and weakening of public health care infrastructures in the developing world. This was the result of the conditions for receiving loans from international lending giants such as the World Bank and International Monetary Fund (IMF), which limited government investment in public services in the name of promoting free-­market policies. It is within this context that HIV emerged, with steepening inequalities and insufficient access to health care fueling the epidemic (Comaroff 2007; Nguyen and Peschard 2003; Pfeiffer and Chapman 2010). Considering the connection between HIV and neoliberalism, and given that Bolivia was the darling of neoliberalism (Gill 2000), it is remarkable that the HIV prevalence rate is so low. In 1982, Bolivia emerged from a decades-­long series of right-­wing military dictatorships that had the clandestine support of the Central Intelligence Agency (CIA) of the United States (Dinges 2004). With the return to democracy, the national government began drawing up plans for a comprehensive primary health care system as a part of their vision of health as central to the progress of the nation. These plans fell apart in 1985 when the Bolivian economy collapsed, the government fell to the mercy of international lenders, and the IMF and World Bank mandated the adoption of economic restructuring policies as a condition of receiving loans (Molenaers and Renard 2003; Tejerina Silva et al. 2011). As a part of adopting World Bank policies, the government restructured the health care system in accordance with the USAID Health Sector Reform Initiative. Under this initiative, disease-­specific interventions replaced plans for a comprehensive primary health care system, and private investment in the health care sector received priority over the development of public health care infrastructures (Tejerina Silva et al. 2011). Alongside health system restructuring came a reliance on NGOs to provide health care services and other social programs financed by external aid agencies such as USAID. NGOs, as independent entities, could bypass weakened state infrastructures and were favored for receiving development funds. During the 1980s and 1990s, NGOs boomed throughout Bolivia (Gill 2000). Health-­related NGOs for the most part took on a disease-­specific focus, reflecting the goals of international aid programs. During this time, USAID emerged as a key player in the development of health programs, including those for HIV. When Bolivia’s Ministry of Health registered the first case of HIV in 1984, there was no national HIV/AIDS



Fault Lines 11

program or policy. In 1988, with a mere 13 registered cases of HIV (CDVIR 2006), USAID issued a $0.5 million grant for three years to begin the Proyecto contra el Sida (Project against AIDS). As a condition to receiving the grant, the Ministry of Health developed a national program with a strategy imported from USAID and Centers for Disease Control and Prevention (CDC) frameworks. As a result, this strategy drew heavily from a risk-­group focus that targeted sex workers and homosexual men (Wright 2006). This risk-­group focus had a lasting impact on HIV services in Bolivia. This is most evident in the system of CDVIRs (Centros de Control de Vigilencia y Referencia / Control, Surveillance, and Reference Centers) that exist in each of the country’s major municipalities. The Ministry of Health initially created the CDVIR system for registering and monitoring sex workers, who are required to report for a health check every two weeks or risk losing their work authorization. As a leader of the national sex worker union explained to me in an interview, “They are only interested in the vagina,” making sure that workers are free of STDs to receive work authorization. CDVIRs serve not only as the monitoring center for sex workers but also as the primary source of HIV testing and care. When Bolivia began to develop a national strategy to respond to HIV, with the USAID focus on risk groups, health authorities deemed it logical to house HIV services with pre-­existing services for sex workers. As poverty and employment flourished during the height of neoliberalism, social movements began to gain power. Such movements included challenges to the privatization of water (Olivera 2004); demands to end draconian, U.S.-­ led antinarcotic policies that harmed peasants (Gill 2004); and outcry over the exploitation of the country’s natural gas resources (Gustafson 2011). In 2005, the combined efforts of various social movements helped elect Evo Morales as the first indigenous president of a country in which a European and mestizo minority had long held power over what is a predominately indigenous population. President Morales’s political party, MAS (Movimiento al Socialismo / Movement toward Socialism), has maintained power in the Legislative Assembly, enabling the comprehensive implementation of the party’s agenda. Political, economic, and social transformations in more than a decade under Morales have included a new constitution, land reforms, nationalization of natural resources, and rejection of coca eradication programs financed by the U.S. In 2016, voters narrowly rejected a constitutional referendum that would have allowed Morales to run for another term in 2019, leading to speculation over the future of the politically polarized country. In the meantime, President Morales’s promises for a more just society have included a plan of decolonization, or undoing the systems of domination produced through colonialism and neocolonialism. Health care reform was central to this broader agenda. While the national government made it a goal to develop a single-­payer health care system based on a model

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of socialized medicine, which MAS called a communitarian health care system, the funds have remained unavailable to do so. Instead, patchwork efforts expanded insurance coverage for children, mothers, and the elderly ( Johnson 2010). In response to this gap, some local governments made attempts to provide greater health care coverage at the local level. In Santa Cruz, the city government announced in early 2014 that it would begin a plan to provide additional financing to municipally funded clinics and hospitals. This initiative eliminated user fees but still required patients to purchase all necessary medications and supplies (Ortiz 2014). In the case of conditions like HIV and tuberculosis, patients’ lives remain at the mercy of funding through global health programs, as health care costs would be prohibitively expensive for most citizens without this support. The Global Fund has been the most significant source of funding for these conditions. Established in 2002, the Global Fund transformed global health efforts by funneling an unprecedented amount of resources into expanding access to treatment and prevention for HIV, tuberculosis, and malaria. Since 2004, grants from the Global Fund have changed the nature of HIV initiatives in Bolivia. From 2004 to 2009, Bolivia received a grant of $16 million for HIV-­related projects, which, most significantly, enabled ARV rollout. In 2009, the Global Fund renewed the grant until 2015, committing a sum of $21 million for HIV-­related projects (Global Fund 2014). Apart from providing the funding for ARVs, Global Fund grants have been used for purchasing medications to treat the most common opportunistic infections, such as toxoplasmosis; lab supplies for CD4 and viral load testing; and hiring health care providers within the CDVIRs. Local HIV-­ related NGOs also received grants to operate peer educator programs, support groups, and prevention and testing outreach activities. In 2013, the Global Fund announced that it would be restructuring its grant process beginning in 2014. Under the new funding model, the primary goal was to maximize impact by reaching a higher number of people, setting the two most important factors in allocating funds as disease burden and a country’s economic status (Global Fund 2013). This announcement began to generate panic. Given Bolivia’s low rate of registered cases of HIV combined with the nation’s recent shift from a low-­income country to a lower-­middle-­income country, many HIV activists assumed that the country would lose Global Fund eligibility altogether. However, when the Global Fund announced its new eligibility criteria in 2014, it revealed that in the next funding cycle, to begin in 2016, Bolivia would maintain similar levels of funding to what it had received in the past. The fact that the Bolivian government was trying to move away from neoliberal policies during the same period it was the recipient of a massive influx of global health funding has generated tensions and contradictions. In 2013 and 2014, as a part of decolonization efforts, the national government expelled



Fault Lines 13

multiple international development agencies. Two of these—­IBIS and USAID— ­had played a central role in HIV programs throughout the country. Calling USAID “an instrument that still has a mentality of domination” with “political ends, not social ends,” President Morales explained his decision to expel the agency in May 2013 (El Deber 2013). The same rationale warranted the expulsion of the Danish agency IBIS in December 2013. The effect of IBIS’s expulsion was more profound for HIV, as it had been the Principal Recipient of HIV grants from the Global Fund. In this capacity, IBIS acted as an intermediary, monitoring and disbursing grant money from the Global Fund to local community organizations. In a dramatic continuation of this trend, in May 2014 the Ministry of Health announced that it would begin managing the Global Fund grants. The minister of health described the decision as coming “in the public’s best interest for their health, and for the state’s corresponding obligation to the health of the individual, the family, and the entire population.”6 This announcement came in a letter sent from the minister of health to the Country Coordinating Mechanism (CCM), a group of local stakeholders that includes people with HIV, representatives from NGOs, and Ministry of Health officials. The takeover of management of funds was in violation of Bolivia’s grant agreement with the Global Fund. This agreement states that the CCM must vote to determine what entity will manage the grant. While the Ministry of Health could theoretically manage funds, the power to do so could only be granted through a vote of the CCM. In violation of this mandate, the Global Fund froze Bolivia’s grant. When the Global Fund freezes grants, it continues to provide money for ARVs and lab supplies for up to two years, or until the country meets criteria to have funds unfrozen. During the period of the freeze, however, funds are not available for additional programs of support, care, and prevention. In the final months of my fieldwork in 2014, HIV-­related NGOs, HIV activists, people with HIV, and local public health officials entered a state of panic, organizing meetings and negotiations with the Ministry of Health in order to reestablish grant management procedures in accordance with Global Fund guidelines. In Santa Cruz, activists created a Regional Coordinating Mechanism (RCM) as a means to organize people with HIV and public health officials on a local level in the absence of a fully functioning CCM. At the national level, the CCM established an ad hoc committee that voted to make the minister of health the president of the CCM but did not make the Ministry of Health the Principal Recipient for HIV-­related grants. This decision appeased the Ministry of Health without turning over the management of funds to them. It took more than a year for Bolivia to regain its access to funding from the Global Fund, having funds reinstated in mid-­2015. This drama placed Bolivia in a liminal status in terms of funding for HIV programs during the height of my fieldwork.

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Although Bolivia regained access to its Global Fund grants in 2015, there continued to be a sense of uncertainty about future funding. As Bolivia’s GDP has increased, its World Bank classification has gone from that of a low-­income nation to a lower-­middle-­income nation, which comes with stricter limits on the amount of funding that Bolivia can receive from the Global Fund in the future. When the CCM reapplied for funding in 2016, it was awarded $8.7 million for HIV programs until mid-­2019 but was told that it would be expected to transition out of receiving Global Fund support. As a result, activists and civil society organizations have continued to scramble for other sources of HIV funding. This has included increasing pressure on the national and local governments to commit more funding to HIV—­a commitment that government authorities have been hesitant to make given that they view the disease-­specific approach to health to be a contradiction to the goal of developing a comprehensive communitarian health care system. The perceived incompatibility between earmarking funds for HIV and strengthening the overall health care system is a key issue. A central argument behind the push for massive investment in HIV was that these funding efforts could help strengthen primary health care infrastructures by driving funding to the health care system as a whole (Farmer 2003; Mann 1999). However, in many contexts, funding has gone to disease-­specific initiatives at the cost of failing to invest in other health challenges or social programs that would be beneficial to the overall health of a population (Benton 2015; England 2008; Pfeiffer et al. 2010). This critique is a primary concern in Bolivia, where HIV services are delivered largely via distinct health centers—­namely, CDVIRs and NGOs that focus exclusively on HIV. The broader public health care infrastructure has historically been poorly funded and poorly equipped to deal with an array of pressing health issues that have plagued Bolivia, including a high maternal and infant mortality rate, endemic Chagas disease, and one of the highest disease burdens of tuberculosis in the Americas (Bastien 1998; Tapias 2015; Zulawski 2007). On a global scale, well-­funded systems of care for HIV within contexts of otherwise struggling health care systems have emerged due to HIV exceptionalism. As the case of Bolivia demonstrates, HIV exceptionalism has had limited success in containing the epidemic and ensuring universal access to ARVs. There are multiple ways of thinking about this paradox. Some scholars argue that HIV remains exceptional because the social experience of the condition remains exceptional (Moyer and Hardon 2014). Others argue that HIV exceptionalism limits health care systems by funneling resources away from other pressing health conditions while further driving HIV-­related stigma and discrimination. Roger England (2008) goes as far as calling for the shutdown of UNAIDS. Adia Benton (2015) argues for somewhat of a middle ground, pointing to how HIV remains complex and challenging. The resulting attention, however, can draw



Fault Lines 15

resources away from other pressing health issues. Thus HIV exceptionalism has created a double bind (Benton 2012). This double bind has generated new fault lines in the HIV epidemic, not only with the potential to ignore other prevalent health issues, but also because of problematic methods of decision-­making about how HIV funding should be allocated. Countries that are recipients of global health dollars are under constant pressure to produce studies to justify the expenditure of resources and provide evidence that the resulting interventions were successful. The medical anthropologist Susana Ramírez Hita has been a part of various Bolivian research teams contracted by the Global Fund and the Pan American Health Organization (PAHO) and has been a vocal critic of the research methods used by these organizations. Citing Global Fund studies that have served as the basis for allocating HIV funding, she points to how the research instruments used in Bolivia were flawed because they failed to consider the particularities of the local context. Part of the problem lies in the reliance on Rapid Assessment Procedures, which are seen as efficient and cost-­effective but result in data that lack any sort of depth or contextualization (Ramírez Hita 2011, 2013). Ramírez Hita’s work points to a broader critique of global health’s reliance on metrics to develop programs and make funding decisions (Adams 2016; Erikson 2012; Sangaramoorthy 2014). Numbers have been given extraordinary power in the global health realm, allowing decisions from a distance (Latour 1987). When these numbers bypass local realities by assuming uniformity in diverse local contexts (Erikson 2016; Whiteford and Manderson 2000) and try to force local life onto a pre-­established international template (Pigg 2001), new fault lines emerge. In Bolivia, this is particularly evident in relation to gender.

The Gender of Fault Lines A major failure of public health institutions in the early years of the AIDS epidemic was the delay in recognizing women’s vulnerability to HIV. This was largely the result of a reliance on metrics. Initial epidemiological trends perpetuated a risk-­group focus, even after mounting evidence showed the flawed construction of these risk groups (Oppenheimer 1988). In retrospect, there is widespread agreement that ignoring women further perpetuated what was a growing public health crisis. Throughout the 1990s, it became increasingly clear that there was a need to address the HIV epidemic among women. Carol Bellamy, former director of UNICEF, captured this point at the 2002 International AIDS Conference when she stated in a speech, “AIDS has a woman’s face.” Global health documents, the media, HIV activists, and public health officials have now recited this phrase countless times. But what does it mean to say, “AIDS has a woman’s face”? The

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motive behind this mantra has been to bring attention and resources to women and HIV, and images of suffering women and children were central to generating the compassion needed to fuel global health responses to HIV (Fassin 2011). The focus on gender and HIV within global health emerged following decades of efforts to make gender a part of modern development discourse (Merry 2006). Various international declarations and agreements mandate a focus on gender within global health bodies and development organizations that are influential in the financing and development of HIV/AIDS programs. Through the Fourth World Conference on Women in Beijing (1995), U.N. General Assembly Declarations of Commitment on HIV/AIDS (2001 and 2006), and the Millennium Development Goals (2000), global governing bodies have publicly declared their commitment to addressing the gender inequalities driving the epidemic. Global health bodies have also taken up this task, as exemplified by the Global Fund. Through a human rights statement, the Global Fund declared its commitment to prioritizing vulnerable populations. It elaborated on this commitment in its Gender Equality Strategy, which encourages funding for “programs and activities that address gender inequalities and strengthen the response for women and girls,” citing the rationale that “harmful gender norms—­including those that reinforce the submissive role of women . . . are key drivers of the epidemic” (Global Fund n.d., 4–­5). My experiences watching women, including Gabriela, struggle to gain access to resources left me wondering—­were women really being prioritized in Bolivia? My answer to that question is no, despite appearances to the contrary. Two primary concerns have led me to this conclusion. First, despite its claims to prioritize programs aimed at women, the Global Fund has consistently denied funding for such programs in Bolivia. Second, the ways that global health bodies have approached gender draw on oversimplified, stereotypical understandings of gender that have led to an array of unintended consequences. The ways that the lived experiences of individuals conflict with gendered social imaginaries create fault lines (Smith 1990). To elaborate, the Global Fund has consistently denied funding to programs that would focus on women through claims that such interventions are not high-­ impact or cost-­effective. A clear example of this is from Bolivia’s 2012 Grant Renewal Scorecard. Grant Renewal Scorecards serve as monitoring tools to demonstrate that countries are using funds in accordance with grant agreements and to demonstrate that resulting programs are having the intended impact. As a part of the scorecard, the CCM must respond to a series of questions devised to reflect that they are fulfilling the mission of the Global Fund. The questions on the scorecard, and responses to them, are telling. One question asks, “Has the Country Coordinating Mechanism request considered issues of human rights and gender equality?” The CCM vaguely



Fault Lines 17

responded by saying it would use funds to support “activities promoting human rights of people with HIV and of key populations,” making no specific reference to gender (Global Fund 2012). This is followed by the question, “Are the activities to be funded in the next implementation period appropriate given the specific country and disease context?” The response is as follows: “Compared to Phase 1 and to the originally approved proposal, all preventive activities have been focused on most at risk groups and the activities targeting other groups (such as women, young people, and public drivers7) have been removed from the budget. Resources have been reprogrammed to increase funding for high-­impact interventions” (Global Fund 2012, 10, emphasis added). Examining these two questions in relation to one another illustrates a major contradiction. Despite repeating claims to “champion and fund proposals” that focus on gender-­related vulnerability (Global Fund n.d., 5), when the CCM proposed testing and prevention activities aimed at women, such activities were “removed from the budget.” The Global Fund’s funding strategy is essential for understanding this paradox. The funding strategy is based primarily on two factors—­a nation’s ability to pay for programs itself, defined in terms of GDP, and disease burden. Infection rates alone, however, do not define a disease burden. Having a concentrated epidemic among “high-­risk” populations such as injection drug users or men who have sex with men (MSM) also factors into a country’s disease burden. The Global Fund considers a 5 percent rate of infection among a subpopulation as a critical threshold for defining a local epidemic as a concentrated epidemic, with a country qualifying for grants if it can demonstrate infection rates at or above this threshold within a given risk group. Consequently, for Bolivia to maintain access to Global Fund grants given its low rate of infection among the general population, it is essential to demonstrate a concentrated epidemic within a risk group. The majority of funding then goes toward programs that target these risk groups. Since Bolivia has a concentrated epidemic only among the problematic epidemiological category of MSM, nearly all of the Global Fund grant money for HIV, with a few exceptions, is funneled to LGBT8 organizations. The interventions that reach women are limited in scope, and the groups of women who are the intended subjects of these interventions are telling—­namely, efforts to test pregnant women and sex workers consistently receive funding. Testing pregnant women has become widespread practice on a global scale as a means of achieving the Millennium Development Goal of eliminating mother-­to-­child transmission. In Bolivia, among sex workers, HIV rates have consistently been very low, at 0.57 percent in 2012 (Aguilera Hurtado 2014), and do not reach the 5 percent critical threshold defined by the Global Fund as a high-­impact intervention; however, sex workers are the only group of women consistently named as a target population in both testing and prevention

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efforts. Funding for women who are not pregnant or sex workers exists only for HIV treatment programs, when women have already tested positive for HIV. Thus the ways that programs aimed at women receive financial support hinges on a very limited understanding of women’s sexuality—­women are either mothers, having sex for reproduction, or whores, potential vectors of infection. In Bolivia, the CCM must work within the risk-­group language to maintain funding, even if this model ignores the complexity of women’s vulnerability and does not make sense within the local contours of the epidemic. Even epidemiological patterns indicate that the Global Fund’s approach is problematic in Bolivia. In 2005, the year after Bolivia’s first Global Fund grant went into effect, the Ministry of Health registered only 330 new cases of HIV. From 1984 to 2005, nearly 80 percent of registered cases of HIV were in men, primarily MSM (RedVihda 2005; Wright 2006), providing some justification for focusing prevention efforts on this group. However, in 2009, 43 percent of new cases were in women, marking a trend that has continued to the present day (CDVIR 2016). This shift in the sex ratio of new infections may in part be a reflection of global health programs in Bolivia as much as it is a reflection of epidemiological shifts. Beginning in 1988, USAID focused its efforts almost exclusively on MSM and sex workers. It was following the first grant from the Global Fund that epidemiological data began to show a dramatic increase in the number of new infections among women. With testing pregnant women as a major initiative as a means of preventing mother-­to-­child transmission, women were more systematically tested for HIV for the first time. Prior to the Global Fund grant, PAHO researchers estimated that HIV cases were underreported by 70  percent (Protto et al. 2008). Although this study did not look for gender biases, it is possible that cases among women were disproportionately underreported given the lack of attention to testing women. Whether or not earlier statistical data were flawed, the focus on MSM has always been problematic. Epidemiological studies suggest a prevalence rate of 11.6 percent among men who reported having sexual relationships with other men (Global Fund 2012). These studies group a diverse range of sexual identities under the category of MSM, failing to account for local constructions of sexuality. In Bolivia, there is a distinction among travestis (transgender women), maricones (or los gays), and other men of the ambiente. The term ambiente (literally “ambience”) refers to a subculture of men with same-­sex desires. Travestis often describe themselves as the only real homosexuals, fully embodying their sexuality through how they perform gender. Maricón, when not being used as a pejorative term, refers to a man who identifies as homosexual within the ambiente, although he might or might not actively embody this identity in all realms of life. Men of the ambiente who do not identify as gay also actively seek sex with



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other men but often perform heterosexuality both within and outside of the ambiente. Here, it is important to note that taking on the “active” role in sexual encounters allows a man to perform heteronormativity even when it involves sex with another man or a travesti.9 These men often have steady female partners. Similar trends have been observed in multiple contexts in the Americas (Carrillo 2002; Parker 1999). Given these dynamics, the focus on MSM while ignoring women overlooks one of the most fundamental aspects of sexual relations in the local context. Additionally, funneling money aimed at MSM through LGBT organizations can be ineffective and even counterproductive, since many men of the ambiente actively distance themselves from the LGBT label (Wright 2000). It is important to consider what the Global Fund’s funding strategy means for women like Gabriela. Gabriela was never the target of an HIV testing or prevention program and only had an HIV test when she began showing symptoms of tuberculosis. When she did test positive, access to the services available through Epua greatly facilitated her ability to navigate a fragmented and confusing health care system. However, Epua receives no funding from the Global Fund. Without access to Global Fund grants, Epua relies on piecing together grants from smaller donor agencies, and its primary source of funding comes from a Catholic charity. This leaves Epua in a perpetual state of funding insecurity, and two months following Gabriela’s death, Epua had to make substantial cuts to its acompañamiento program. Funding from a Catholic institution also has implications for prevention. Although I witnessed employees from Epua counsel women on condom use and birth control, they never provided condoms. Aside from the lack of resources to back up claims of focusing on gender, global health bodies often rely on essentialized understandings of gender (Bleiker and Kay 2007; Chong and Kvasny 2007; Fassin 2011; Le Marcis 2014; Seckinelgin 2011). Raewyn Connell (2012) makes similar observations of global governing bodies more broadly, pointing to portrayals of men and women as fixed categories. This categorical thinking about gender sees biology, gender roles, and social norms in essentialist terms, underplaying the diversity within gender categories (Connell 1987, 2012). This observation is striking in examining key global health documents.10 For example, the WHO’s (2009) toolkit “Integrating Gender in HIV/AIDS Programmes in the Health Sector” lays out four focus areas for responding to women’s needs—­HIV testing, prevention of mother-­to-­child transmission, treatment and care, and home-­based care. The categorization of these areas is telling. The only mention of prevention is preventing mother-­to-­child transmission. Further, the specific points and recommendations within each of these areas overwhelmingly portray women as passive, without agency, in their sexual relationships. One passage states, “Gender influences sexuality, sexual behavior, and the risk of HIV in several ways.

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This includes ideas that women have to remain pure and virginal until marriage” (WHO 2009, 3). Absent is any discussion of women having sex for pleasure; the emphasis is on sex as fulfilling a reproductive role for women. Men, on the other hand, are often framed as transmitters of infection within intimate relationships. Global health discourses, especially those originating from the WHO, become institutionalized within local HIV programs. In accordance with the Global Fund prerequisites for granting funds for a country, a National Strategic Plan for HIV that aligns with WHO guidelines must be in place. Gabriela’s death from AIDS highlights the fault lines that were ignored and new fault lines that have been produced via the Global Fund in Bolivia. Despite massive funding for HIV, the public health care system has remained of such low quality that patients use it as a last resort, contributing to late diagnoses of HIV. As a woman, Gabriela was not the subject of HIV interventions, despite a global health discourse that mandates a focus on gender. Gabriela did not even receive an HIV test while pregnant, even though testing pregnant women was one of the only major Global Fund HIV initiatives aimed at women in Bolivia. The fact that the father of Gabriela’s daughter reportedly tested negative for HIV is indicative of why assumptions that women are “pure and virginal” are problematic. It is possible that Gabriela’s partner lied about his result or had a false negative; neither of these scenarios is uncommon (Piwowar-­Manning et al. 2014; Rhine 2016; Whyte 2014). But it is also possible that Gabriela was infected otherwise, and the assumption of women as “pure and virginal” ignores the complexity of women’s sexual lives. As I will detail in chapter 4, it is common for women to test positive while their long-­term male partners test negative, yet this pattern has gone largely unacknowledged.

Global Health as a Politics of Life “Now everyone receives the medications for free, but it might be different in the future,” a psychologist with the CDVIR in Santa Cruz warned a group of patients who were required to participate in a group therapy session before beginning ARVs. The psychologist went on to explain that medications might not always be free in Bolivia, so in the future, “there might be stricter criteria. For example, during pregnancy women will always get the medications for free. If you abandon treatment, you might have to pay for it if you want to start again.” The psychologist’s attempt to encourage patients to take their medications hinted at a broader issue—­the ways that public health interventions involve decisions about whose lives are worth saving and on what grounds, creating fault lines of survival (Petryna and Follis 2015). To understand the processes behind these fault lines of survival, medical anthropologist Didier Fassin (2007a, 2009)



Fault Lines 21

has used the concept of “politics of life”11 as a framework for understanding how political decisions enacted via humanitarian interventions, immigration policies, global health interventions, and an array of other public policies involve decisions that can have life and death at stake. While such decisions are often framed as apolitical when humanitarian goals are at stake (Ferguson 1990), they are, in Vinh-­Kim Nguyen’s words (2010, 13), “political in the strongest sense, projecting the power of life or death.” Extending Foucault’s (1997) work on biopolitics, or ways that states exert control and power over populations, Fassin (2009) adds that meanings, values, and moral frameworks factor into policy decisions. Resulting policies, interventions, and resource allocations have the potential to generate inequalities by granting resources to some and denying them to others. Additionally, the bureaucratic public health institutions that wield power in implementing policies have consequences for individual action (Heyman 2004). The very stakes include life itself. Nguyen (2010) examines the ways that global health policies surrounding HIV/AIDS interventions in West Africa served as a politics of life by granting some people access to ARVs while systematically denying access to others. This was especially the case in the years immediately following the development of effective AIDS therapies when only a limited supply of the drugs was available. As activist organizations and ministries of health needed to provide body counts and the stories of lives saved to justify massive global health spending on AIDS therapies, individuals willing to disclose their HIV narrative gained access to medications more easily than those not in a position or unwilling to publically disclose their status. In this sense, illness narratives became a commodity that could attract donor investment for massive treatment campaigns. Those with the commodity, in return, gained access to lifesaving medication and care. In considering the politics of life, it is necessary to interrogate what counts as politics. In its most obvious sense, politics refers to the act of governing. Politics is also about the exercise of power, which includes social interactions and the debates and tensions that unfold as part of these interactions. It is rather obvious that the development and implementation of HIV interventions involve acts of governing at the global health and local levels and that resulting policies define what resources will be available and who can access these resources. Less obvious, but no less significant, are the latent ways that personal relationships and interactions factor into an individual’s ability and willingness to engage with HIV-­related services. Social hierarchies, gender ideologies, and the execution of global health agendas in the local context frame these everyday interactions that shape a person’s experiences of care (or not seeking care) and his or her illness experience. What Foucault (1976) called the micromechanics of power and others have called micropolitics (e.g., Waitzkin 1993) are useful

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for understanding how everyday interactions in medical encounters involve an exercise of power between individual subjects. These encounters occur within a social context produced by broader ideologies and systems of domination. Contradictions abound in global health policies, as official statements and policies suggest a moral agenda of prioritizing women and children while pressures of producing numbers of lives saved limits the allocation of resources. This becomes more complex as policies and funding filter through into the local level. Global health policies not only determine resource allocation; they also influence how health care workers imagine their patients. Health care workers receive training in line with guidelines and manuals produced by global health bodies, but these guides intersect with pre-­existing ideologies and understandings of the social order. Nowhere is this more problematic than in relation to gender. As a discourse of aiding women has become central to driving global HIV interventions, it is important to interrogate the relationship between gender and the politics of life. Gendered discourses of deservingness that hinge on images of women as victims of the AIDS epidemic have been central in generating the compassion behind massive funding for HIV/AIDS. As Miriam Ticktin (2011) shows in her research on asylum seekers in France, constructions of innocence, or morally legitimate suffering, are central in driving humanitarian compassion. While compassion has been a necessary force in generating the political and social will to make lifesaving HIV care widely available in resource-­poor settings, the narrative driving this compassion frames some individuals—­namely, children and some women—­as innocent, implying that others are not innocent. This framing has implications for how individuals experience care and, at times, feel and may be actively excluded from care. To understand how HIV interventions create systems of exclusion in relation to gender, the gendered politics of life is at the core of this book. Through an analysis of the gendered politics of life, I examine the ways that gender factors into not only the development and implementation of HIV programs but also the everyday experiences of individuals seeking care. Beyond insufficient resources for substantiating claims of prioritizing women, social imaginaries tied to gender shape interactions in the context of HIV interventions, playing a role in how individuals experience their illness and the care they receive for it. The illness narratives in this book provide a striking critique of the stereotypical discourses surrounding gender that frame the implementation of HIV programs. In this sense, illness narratives are political, transmitting the complexities of all that is “historical, social, gendered, ordinary” about one’s illness (Fassin 2007b, 25). In line with feminist theory on intersectionality (Crenshaw 1989; Collins 2000), the gendered politics of life is not exclusively about gender but about the ways that gender intersects with other systems of domination, such as class,



Fault Lines 23

ethnicity, race, and sexual identity. Hence I give attention to the ways that gender intersects with other axes of structural violence (Farmer 2003) and structural vulnerability (Quesada et al. 2011) for understanding how the politics of life shape illness experiences and experiences seeking care.

Conducting an Ethnography of Care Carolyn Nordstrom (2009, 63–­64) says of fault lines, “[They] do not reside within landmasses, but in certain political, economic, and ethical relations that span the world’s countries. Fault lines are flows—­often unrecorded—­of goods, services, monies, and people that precipitate unstable inequalities, uneven access to power, and unevenly distributed resources. They represent fissures in humanity.” Understanding the fault lines of care requires understanding care as a product of a complex global system that involves the exercise of power and systems of inequalities. To understand this complex system, I engaged in various levels of analysis that included a focus on individual experiences of care, perspectives of health care providers and public health officials, and analysis of global health policies. Along with others (such as Myers 2015), I call this approach an ethnography of care. While an ethnography of care involves multiple levels of analysis, I prioritized understanding care from the ground up, or from the perspective of those receiving care. Drawing inspiration from hospital ethnography (Long et al. 2008) and clinic-­based ethnography (Smith-­Morris et al. 2014), I used clinics and organizations such as Epua that provide support for people with HIV as a starting point for meeting people, arranging interviews, and conducting participant observation. My research often took me beyond these initial points of contact and into a much deeper nexus of care. With Gabriela, I joined in the frustrations of fighting traffic, being sent from one clinic to another, and partaking in what at times seemed like an endless wait for services—­aspects of care-­seeking that are central to illness experiences but that I would have never witnessed had I stayed inside clinic walls. At other times, people asked me to go with them to their doctor’s appointments, invited me into their homes, introduced me to family members, brought me to church with them, requested visits in the hospital or in drug rehabilitation centers, and introduced me to their friends from HIV support groups. I also accompanied health care workers, mainly social workers and peer educators, as they sought to provide care to patients outside of the clinical setting. By following individuals through their various realms of care, I sought to gain an in-­ depth, experience-­near understanding of their illness experiences (Kleinman 1997). However, an ethnography of care would have been difficult without first becoming a part of the institutions and organizations that provide care. Because

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of this, I used the CDVIR in Santa Cruz and several HIV-­related NGOs as launching points. The CDVIR in Santa Cruz is inside an old, deteriorating building on a heavily trafficked road that leads into the city’s largest market. Crossing the street to get to the clinic can be a daunting task. After getting off the bus, I often found myself dashing across the street, ducking my head down in the process to blind myself from the buses and cars that were racing toward me. Upon entering the gate that surrounds the building, a large sign reads CDVIR-­VIH, and patients refer to the clinic simply as CDVIR. The “VIH” (HIV) on the sign has spurred more than one passerby to comment, “This is the center where los sidosos go,” drawing on a derogatory term for people with HIV. There are usually dozens of people inside the building, waiting, at any given time. Many wear the face masks that mark them as having tuberculosis. Occasionally, sometimes assisted by a family member, patients like Gabriela are near death, having put off treatment or having received diagnoses when it was too late for ARVs to save them. Until 2009, in order to receive ARVs, patients were required to attend regular monthly appointments at CDVIR. Beginning in 2009, Santa Cruz began a decentralization12 process that focused on integrating HIV care into public clinics and hospitals throughout the city as opposed to only offering care through CDVIR. Despite this shift, roughly 90 percent of people with HIV in Santa Cruz who were in care during the time of my fieldwork went to CDVIR for HIV-­related services (CDVIR 2013), primarily because they felt discriminated against in other health care facilities where few doctors have had HIV-­ related training. Through my collaboration with CDVIR, I had regular hours when I had access to office space and could conduct interviews with patients who were sent my way by the psychologists and doctors at CDVIR or by those who had heard about me through the waiting room gossip chain. Sometimes, these interviews turned into something else—­an invitation to visit someone at home or a request for more information about support groups. I also collaborated with several HIV-­related NGOs and activist groups, including Epua. When I began my fieldwork, Epua operated a free childcare center; offered job training activities; had an artisanal co-­op where women made textiles, glass jewelry, and ceramics to sell; and had a social worker, psychologist, and peer educator who met with women at the center, made home visits, and conducted acompañamientos. By the time I completed my fieldwork, these activities were beginning to disappear as a result of funding cuts. Most significantly, the childcare center closed in January 2014. I also collaborated with RedVihda, the most well-­known HIV community organization in the country. RedVihda roughly translates to “HIV life network.” “Vihda” is an intentional misspelling of vida (life) as a way to evoke a double meaning, as Vih translates to HIV. RedVihda has consistently received funding from the Global Fund and



Fault Lines 25

other international organizations to host support groups for people with HIV, maintain an extensive peer educator program, provide legal support for cases of discrimination, and engage in quality-­of-­care initiatives, such as a campaign to train health care workers to be more sensitive to the needs of people with HIV. Part of RedVihda’s success in receiving funding has been a result of the organization’s flexibility in reframing its programs to fit within the goals of international funders such as the Global Fund. For example, by dedicating a substantial amount of work to LGBT outreach, RedVihda focuses on what the Global Fund refers to as a target population. Several other organizations that focus on LGBT rights more broadly, most notably Fundación Igualdad (Equality Foundation), have also successfully secured HIV funding as a part of its effort to reach the LGBT target population. I engaged in some activities with Fundación Igualdad, but not to the extent that I did with Epua and RedVihda. These NGOs are often included under the umbrella term civil society, but civil society also encompasses other community-­based organizations that do not necessarily benefit from international funding, as is the case of the Bolivian Network of People Living with HIV (RedBol). As an activist network, RedBol engages more in community organizing than in provision of services. Their community organizing efforts are closely tied to the work of NGOs, evidenced by the fact that RedBol and RedVihda often collaborated in organizing activities. Santa Cruz also has a small inpatient hospital on the outskirts of the city that provides care exclusively for patients with HIV. This hospital, Comunidad Encuentro, receives funding from a Catholic foundation, and two doctors work there on a volunteer basis. As a result, patients do not have to pay to stay at the hospital. Additionally, ARVs and other medications available via the Global Fund were free. However, a patient’s other needs, such as a blood transfusion or IV solution, are not free. Patients frequently go without recommended care if they do not have the necessary funds. Given the precarious status of the patients, it was never my intention to involve patients at Comunidad Encuentro in my research. That changed when José Luis, a patient whom I initially met at CDVIR, entered Comunidad Encuentro with a suspected case of tuberculosis. José Luis had no friends or family members to visit him. When the nurse asked if there was anyone she could call on his behalf, he gave her my card. After receiving a call from the nurse, I began to visit José Luis. During these visits, other patients became curious about what I was doing in Bolivia. Some saw my research as an opportunity to tell their stories. As a result, I interviewed a small number of patients whom I met at Comunidad Encuentro. Additionally, informal conversations with patients and family members informed my understanding of the ways people fall out of care or delay seeking care. Through these various organizations, I observed support groups, assisted with health fairs, and as in the case of Gabriela, joined health care workers in various

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types of support and outreach work. Through these activities, I met additional people who participated in interviews, some of whom invited me to learn more about them beyond a formal interview context. In all, I conducted formal interviews with 70 people with HIV and 16 health care workers while also regularly engaging in informal conversations and interactions with many of these people and their broader social networks. While I interviewed roughly equal numbers of men and women, in this book, I focus largely on women’s experiences. To a lesser extent, I also consider the experiences of men and those with diverse gender and sexual orientations (whether or not they identified as LGBT). In focusing on women, my intention is not to ignore other genders. Rather, I do not wish to duplicate the extraordinary work already done by Tim Wright (2000, 2006) on male sexuality and HIV in Bolivia. Additionally, as a part of interrogating the fault lines of care, the ways that women have been the subjects of global health interventions have produced a set of gendered fault lines that deserves particular attention. A few months into my fieldwork, I became an invited member of the Santa Cruz Social Control Committee for HIV (or simply Committee for HIV)—­a new group formed by members of activist groups and HIV-­related organizations. The goal of the Committee for HIV was to develop mechanisms for putting pressure on the national and local governments to respond to HIV in the absence of international support. My participation with this committee included attending meetings with government officials and representatives from international development agencies. It also allowed me to observe several RCM meetings. My involvement with this committee gave me greater insight into the execution of global health policies in the local context, along with the tensions that emerge as part of this process. After leaving Bolivia, I was able to access key documents produced by this group, such as notes from the CCM meetings, as a means to continue following the evolution of HIV interventions.

Overview of Chapters I have structured this book to interrogate the various dimensions of the fault lines of HIV care in Bolivia. In chapter 2, I move into a more detailed discussion of the local context. This context includes a history of social hierarchies tied to race, class, and gender. Since 2005, political transformations have attempted to break down some of these hierarchies as a part of the process of decolonization. However, decolonization is filled with paradoxes, and this is especially clear in attempts to decolonize the health care system. As Bolivia tries to move away from a neoliberal model that relies on international funding, the country continues to lack the necessary resources to provide health care for all. This creates tensions that have the potential to upset the structure of HIV care.



Fault Lines 27

The ways that social hierarchies create fault lines in care is crystallized in chapter 3 through the illness narrative of one woman, Magaly. After Magaly’s daughter was born with HIV, Magaly became the first person with HIV in Bolivia to file charges of medical negligence against anyone in the health care system. Magaly’s status as a poor, indigenous woman, and her mistreatment within the health care system, reveal how long-­standing social hierarchies contribute to widespread medical negligence and discrimination within the health care system. The normalization of medical negligence highlights the ways that people with HIV continue to be excluded from care despite the existence of free services for HIV. In chapter 4, I turn to a greater focus on gender, using the illness narratives of several women to challenge the global health imaginary surrounding women. I show how many women’s experiences run contrary to the ways that women are imagined within HIV interventions, showing how stereotypical constructions of women within global health allow gendered fault lines to persist. In chapter 5, I draw on the stories of two people—­Cassandra and Carlos—­ who both have secrets. Through these secrets, I interrogate the significance of various forms of silence surrounding sexuality. In Santa Cruz, in certain realms, there is substantial silence surrounding both female sexuality and male same-­ sex relations. Silence and secrets offer protection for those who have something to lose if those secrets come out. This local enactment of silence, however, reinforces stereotypical assumptions about sexuality that abound in the global health realm. The global health failure to acknowledge the realities and complexities of local sexualities is effectively a form of silence. In this respect, local silences and global health silences reinforce one another synergistically. Chapter 6 continues with the focus on gender as a part of the global health imaginary, but here, I turn my focus to men. A discourse that blames machismo for HIV has emerged at the intersections of global health policy and local gender ideologies. In this chapter, I break down the ways that HIV-­positive men experience care in light of often feeling that they are targets of blame. In chapter 7, I delve into the drama surrounding the freezing of Bolivia’s Global Fund grant. I look specifically at the tensions that exist among the Global Fund, the Bolivian Ministry of Health, and civil society organizations. With large amounts of money at stake and disagreements over the appropriate use of funds, biopolitical dramas begin to unfold at the local level. I use the term biopolitical drama to describe the friction that emerges as civil society organizations, governmental bodies, and international bodies generate policies and regulations that guide HIV interventions and the allocation of grant money. Resulting interventions ultimately define the fault lines of survival. I conclude by reflecting on ways that both global bodies and local actors can think about addressing the fault lines of care. In order to address fault lines, it is essential for global health bodies to recognize the unequal power dynamics that

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they have created and to renew calls for using HIV funding as a way to develop public health care infrastructures. Gabriela’s death is a stark reminder that the fault lines of care are ultimately about life and death. Short of a cure for HIV, existing medications offer the potential for people with HIV to live a healthy life. They also serve as a powerful form of prevention, as ARVs reduce a patient’s viral load, lowering the risk of transmission (WHO 2011). Thus the technological tools exist for ending HIV. However, as the individual experiences that form the core of this book demonstrate, consistent and timely access to care remains out of reach for many Bolivians with HIV.

2 • DECOLONIZING BOLIVIA

In January 2010, I made my first trip to Santa Cruz, Bolivia. The American Airlines overnight flight departing from Miami made a one-­hour stop at the La Paz–­El Alto airport and then continued on to Santa Cruz. La Paz and El Alto are sister cities, with populations of roughly 800,000 and 900,000, respectively, in 2016 (INE 2012). El Alto sits at a higher elevation, overlooking the bustling center of commerce and government buildings in La Paz. The airport is located in the heart of El Alto. With an elevation of 13,325 feet, it is the highest international airport in the world. During the short stopover, the sun was just beginning to rise. Looking out of the window, I could make out the sea of small redbrick houses that made up the urban sprawl. Illimani, the second highest mountain in Bolivia, towered in the distance. As the plane took off for Santa Cruz, we floated above the glacier-­capped peaks of the Andes. My husband fidgeted anxiously in the seat next to me. Bolivian by birth, he had immigrated to the United States with his parents and younger sister when he was 14 years old, becoming one out of roughly 1.6 million Bolivians living outside of the country (International Organization for Migration 2016). In a country of roughly 11 million inhabitants (INE 2012), migration has served as an economic survival strategy to cope with a struggling economy and limited employment opportunities. For migrants who return to Bolivia, the money saved working abroad can offer social mobility that would have been unattainable without migration. This was my husband’s first time returning to Bolivia since he had left more than a decade earlier. For both of us, this trip was exclusively to visit family, but I would return the following summer to conduct preliminary research for my dissertation. In less than an hour, we began our descent into Santa Cruz. The rocky peaks of the Andes first transformed into lush rolling hills before opening up to the endless plains of the Santa Cruz department. Santa Cruz de la Sierra is the full name of the department’s capital city, but locals shorten the name to Santa Cruz, 29

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sometimes creating confusion as to whether someone is talking about the city or the department. Locals joke that their city is the heart of South America, referencing the city monument that marks the geographic center of the continent. The land below us consisted of vast landholdings belonging to the region’s elite. Cattle ranches, along with sugar cane, soy, and cotton crops, power the agro-­industrial hub of the nation. Santa Cruz’s Viru-­Viru International Airport lies on the northern edge of the city, so planes arriving from La Paz do not fly

Map 2.1. Bolivia, the heart of South America. Source: CIA World Factbook.



Decolonizing Bolivia 31

over the city. Had we flown in from a different direction, I would have been able to see the urban sprawl of 1.6 million residents in a city that in 1976 had a population of only 256,000 (Kirshner 2013). The peri-­urban areas and satellite cities surrounding Santa Cruz had also experienced rapid population growth, with the satellite city of La Guardia undergoing an 802 percent population increase between 2001 and 2012 (INE 2012). Rural-­to-­urban migration has spurred this population boom. An aerial view of the city would have also offered me an introduction to the city’s layout, which consists of a city center that spreads outward in concentric circles called anillos (rings). Older residents speak of a time when the city only had four rings, with the fourth ring consisting of mostly open land with a sparse number of houses. There are now twice as many distinct rings, although the Piraí River creates a geographical barrier on the northwestern edge of the city that prevents any ring after the fourth from forming a complete circle. Because of this, the urban sprawl is concentrated in the eastern half of the city. Within this sprawl, the rings begin to disappear. Historically, middle-­and upper-­class residents have occupied the three innermost rings, with the neighborhoods becoming increasingly poorer the farther one moves away from the city center. This pattern has shifted over the past decade, however, with gated neighborhoods sprouting up on the outskirts of the city. Most notably, on the western side of the Piraí River, Urubo has become the city’s most exclusive neighborhood, boasting its own country club. Furthermore, in recent decades, increased opportunities for social mobility as a result of the economic boom from an illicit cocaine industry, money saved working abroad, and increased access to education have created a new middle class (Shakow 2014). Some members of the new middle class have remained in historically working-­class sectors of the city, resulting in a growing number of larger houses in the middle of poor and working-­class neighborhoods on the urban periphery. After our plane landed and we made our way through customs, we were greeted by nearly 30 friends and family members. Amid the chaos of emotional relatives, an aunt adorned each of our heads with a saó, a traditional straw hat that is a symbol of regional pride. Someone draped the Santa Cruz flag over my husband’s shoulders as we posed for pictures. As we made our way outside, I was immediately caught off guard by the suffocating humidity; the change in hemispheres had taken us from winter to the dead heat of summer. We climbed into a car with two of my husband’s male cousins, who blasted cumbia music as we drove toward the home of my husband’s grandparents. I quickly became distracted by the messages in the city’s rampant political graffiti. Messages of Evo cumple (“Evo fulfills”) and fuera el imperialismo (“out with imperialism”) stood in contrast to No MAS Evo (“no more Evo,” evoking a double meaning with the acronym for the political party MAS) and Evo = Narcotraficante (“Evo = narcotrafficker”),

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reflecting a deep political divide in the city. Days later, I would see a taxi with a swastika painted on the rear windshield. The driver was possibly a member of the UJC (Unión Juvenil Cruceñista / Santa Cruz Youth Union), the strong arm of the right-­wing group of business elites that form the Santa Cruz Civic Committee. The UJC has violently expressed opposition to the MAS political party, and at one point, they publicly beat indigenous leaders. Its members occasionally wear armbands with swastikas (Fabricant 2009; Miranda 2012). My first impression of Bolivia made it clear to me what outsiders have frequently noted—­it is a land of contrasts and contradictions. With 36 ethnic groups, Bolivia has tremendous linguistic and cultural diversity. Although a majority of the population is of indigenous descent, with Aymara and Quechua being the largest indigenous groups, the European and mestizo minority held economic and political power at the national level until the 2005 election of Evo Morales. Leading up to the election of Morales, there has been a long history of indigenous resistance (Ari 2014; Kohl et al. 2011; Reinaga 1970; Rivera Cusicanqui 2011). The elites’ struggle to maintain power in spite of this resistance has contributed to persistent political divides that have triggered more than 150 coups or attempted coups since Bolivia gained its independence from Spain in 1825. Bolivians themselves make fun of this aspect of their country’s history, pointing out that they even went on to elect a former dictator as president. General Hugo Banzer, who led a violent coup that brought him to power as a dictator from 1970 to 1978, was elected president in 1997. My arrival in 2010 followed a series of mass protests that had culminated in the most recent attempted coup. These protests, concentrated in the country’s eastern region known as the media luna (half moon), had erupted surrounding the passage of a new constitution. It was a constitution that upset the old structure of power by granting greater protections to historically marginalized groups, limiting the amount of land individuals could own, increasing the role of the state in the economy, and granting the state authority over the use of natural resources. The region’s political elite managed to gain substantial popular support in protesting the new constitution, even among the working class, by framing the region’s problems as a result of neglect on the part of the national government (Fabricant 2009). At the height of the protests, a group of wealthy businessmen and ranchers brought in mercenaries and intended to organize a militia separatist movement. Plans unraveled when police uncovered an assassination plot against President Morales as a part of this attempted coup (Miranda 2012). The wave of violence and use of mercenaries backfired on the opposition leaders, as it caused the opposition to lose support from the local population. However, the sense of regional pride invigorated by the protests (Fabricant 2009) continued to linger, reflected through symbols such as the straw hats with which my husband’s relatives had greeted us.



Decolonizing Bolivia 33

To understand the tumultuous political climate I had entered, it is helpful to turn to Bolivia’s history. Colonial domination under Spanish rule followed by a system of internal domination characterized by persistent racial and class hierarchies mark the nation’s history. The United States played a crucial role in upholding this internal domination through its clandestine support of right-­ wing regimes (Dinges 2004; Dorn 2011). However, there has also been a history of resistance to these hierarchies, contributing to periods of revolution. At the heart of this resistance has been a push for decolonization, or an undoing of colonial and postcolonial hierarchies. For many Bolivians, the 2005 election of Evo Morales symbolized one of the most important achievements in the path to decolonizing Bolivia (Ticona 2011). Resulting political transformations, however, generated a new wave of tensions.

Colonial and Postcolonial Structures of Power The Cerro Rico (Rich Mountain) mine made Potosí, Bolivia, one of the most important cities in the New World for nearly 200 years. Beginning in the mid-­ 1500s, Cerro Rico enriched the Spanish Empire with its vast silver deposits. Although Cerro Rico has been depleted of silver since the early 1800s, Bolivians have continued mining it for tin in unsafe and toxic conditions (Nash 1979; Perreault 2013). Miners refer to Cerro Rico as “the mountain that eats men,” in response to the number of deaths that have occurred in the mine as a result of accidents as well as long-­term health problems such as lung disease (Nash 1979). Popular legend claims that the Spaniards took enough silver from Cerro Rico to build a bridge of silver from Potosí to Spain and that enough indigenous people died working in the mine to build a bridge of bones back. The Uruguayan writer Eduardo Galeano put the number of Bolivians who died in Cerro Rico under the Spanish Crown at 8 million (Galeano 1971), although some historians dispute this claim (Bakewell 2010). To many Bolivians, the number of deaths is less important than the history of exploitation represented by the mine. This history of colonial exploitation remains meaningful on multiple levels. The colonial centers of the Spanish Empire are now the least developed regions of Latin America. Sociologist James Mahoney (2003, 2010) argues that this is in part because systems of extractive wealth led to the consolidation of wealth and land among an elite class. To maintain their privileges, the elite class relied on racial distinctions to justify forced and coerced labor. The maintenance of these hierarchies rested on limited investment in public goods that would have benefitted the indigenous population. This underdevelopment limited social mobility and perpetuated colonial racial hierarchies even after independence from Spain. The Bolivian indigenous intellectual Fausto Reinaga (1970) described how this continued subjugation of indigenous people created two Bolivias—­one of the

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mestizo-­European and one of the indigenous people.1 In these two Bolivias, social class remained closely tied to race. Although indigenous groups are often described as ethnic groups, the Aymaran scholar Waskar Ari (2014) describes indigeneity in Bolivia as the basis for a racial classification system. The term ethnicity implies a shared cultural heritage, whereas race is a social construct tied to perceived differences that can be used to justify social hierarchies that benefit the dominant group. Perceived differences between indigenous and nonindigenous people have been used as a justification for social oppression throughout Bolivia’s history. Apart from the perpetuation of racial hierarchies, the mining industry enabled the vast accumulation of wealth among a small number of families. As silver was depleted from the mines, three families began to turn toward mining tin. By the early twentieth century, three Bolivian tin barons—­Simón Patiño, Moritz Hochschild, and Carlos Aramayo—­controlled more than half of all tin extraction in the world. This economic power translated into political power, as the tin barons held significant sway in national politics and flexed this power by financing coups against presidents whom they saw as threats to their monopoly (Dorn 2011). Because of this, scholars often describe Bolivia as an oligarchy until the 1952 revolution (Barragán 2009; Nash 1979). While mining played a central role in the sociopolitical history at a national level, mining was never a feature of Santa Cruz’s local economy, and the region remained relatively isolated until the mid-­twentieth century. As an agricultural hub, control over land played a critical role in reproducing social hierarchies. Additionally, two major indigenous groups—­the Aymara and Quechua— ­occupied the western highlands. The eastern lowlands had a larger number of distinct indigenous groups with smaller populations. In 1561, the Spanish conquistador Ñuflo de  Chavez established the city of Santa Cruz. Resistance from local tribes, most notably the Chiriguano (or Guaraní),2 characterized the early colonial era. Over the next two centuries, the conquistadors eventually gained control over several of the most significant indigenous groups. Under the Spanish Crown, the encomienda system granted Spaniards labor from conquered groups. This system viewed indigenous people as vassals of Spain who were expected to pay tribute taxes in the form of gold or labor. The Spaniards who were granted labor under the encomienda system were expected to civilize the indigenous people on behalf of Spain, thereby justifying forced and coerced labor as a civilizing process. Some indigenous populations, especially in more isolated areas, were able to maintain their territories and some degree of autonomy (Laguna 2013). These conditions produced what the Bolivian sociologist Arian Laguna (2013) described as two images of the indio (a derogatory term for an indigenous person)—­the “savage,” uncolonized indio and the “good savage” who labored for the Europeans and converted to Christianity.



Decolonizing Bolivia 35

Under the encomienda system, indigenous people could gain rights to communal lands if they paid tribute taxes. In theory, this system offered some semblance of independence, but in reality, indigenous people were often forced to labor in order to pay the taxes (Postero 2007). In 1720, the encomienda system came to a legal end, and the Spanish Crown mandated that laborers receive pay for their work. Landowners, however, still had large land holdings and continued exploiting indigenous people for labor in various ways. Even in the twenty-­first century, there have been accounts of Guaraní people working in debt bondage in eastern Bolivia (Gustafson 2010; Laguna 2013). The conditions of the colonial era had a profound effect on the health of indigenous populations. Traditional healing practices could not counteract the death toll and ill health that resulted from exposure to new diseases like smallpox, changes in dietary patterns, and the physical toll of forced labor. Even access to health care became a tool of conquest as health posts established by religious orders simultaneously acted as charities and institutions that promoted conversion to Catholicism (Cueto and Palmer 2015). Following independence from Spain on August 6, 1825, the national government focused on the mining-­rich western region, resulting in the continued isolation of Santa Cruz. However, land policies at the national level were influential in reinforcing social hierarchies, since only landholders were citizens. Under land reforms in 1874, communal properties held by indigenous people during the colonial era became state property. Individuals could then purchase land titles to state land, but most indigenous people did not have the means to buy back their land. Instead, wealthier landowners were able to purchase massive plots of land. To survive, poor indigenous people often became laborers and, without land ownership, were denied the rights of citizenship (Postero 2007). In the early postindependence period, there was little investment in health as a public good, despite the widespread existence of debilitating conditions such as tuberculosis and Chagas disease and high infant and maternal mortality rates (Zulawski 2007). It was not until the early 1900s that politicians began grappling with how to address health as a part of nation-­building. According to medical historian Ann Zulawski (2007), the development of the health care system during the early twentieth century served to perpetuate social hierarchies, especially along the lines of race. The push toward developing a public health care system was rooted in elite fears of contagion that blamed indigenous people for the health problems that were stunting economic growth and progress at a national level. Thus the early foundations of public health in Bolivia sprung out of racism. In the 1930s, Santa Cruz became more significant on a national level when Bolivia went to war with Paraguay in a border dispute over the oil-­rich Gran Chaco region of the Santa Cruz department. The Chaco War brought in a wave of migration to the area. The war ended with the nationalization of oil reserves,

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which the U.S. company Standard Oil held at the time. With an economic interest in Bolivia’s tin, the United States responded with a plan aimed at ensuring a favorable trade agreement with Bolivia. This plan granted $25 million to Bolivia and put economist Mervin Bohan in charge of grant oversight. The resulting Bohan Plan focused on the agricultural potential of Santa Cruz as a means to diversify the national economy (Sandoval et al. 2003). As a result, funds went toward industrializing farmland, with the greatest impact on the sugar cane industry. Landowners became owners of agro-­capitalist enterprises, with new roads and access to credit made available through the Bohan Plan facilitating entry into markets. Thus the Bohan Plan transformed landowners into a new capitalist elite, further exacerbating local structures of inequality (Laguna 2013). As the Bohan Plan was unfolding, social unrest was growing in response to economic turmoil and high inflation at the national level. Between 1935 and 1952, a series of coups from both conservative and liberal factions resulted in failed social reforms. In the meantime, the MNR (Movimiento Nacional Revolucionario / National Revolutionary Movement) began developing an alliance of middle-­class and working-­class Bolivians. In 1952, the MNR took power in a military coup. Land reform, universal suffrage, health care reform, and nationalization of the mines followed. Land reform focused first on lands in the western part of the country, barely touching the eastern part of the country before the revolutionary reforms lost power (Fabricant 2012). Further, land redistribution focused on unproductive lands, allowing land “modernized” under the Bohan Plan to remain in the hands of the new capitalist elite. Concurrent health care reforms that established the state’s obligation for providing medical care also proved to have limited reach. This is primarily because internal factions within the revolutionary party resulted in the MNR shifting from a revolutionary party to a center-­right party. As a result, the Bolivian Revolution was an incomplete revolution (Laguna 2013). Party factions also contributed to a coup in 1964. From 1964 to 1982, a series of right-­wing military dictators held power, and despite the widespread suppression of political dissent, organized efforts of resistance persisted. This was especially true in the mining sector, where many workers joined the Communist Party (Kohl et al. 2011). In 1966, the legendary Latin American revolutionary Che Guevara arrived in Bolivia with the goal of organizing a guerilla force and spurring another revolution. The following year, the Bolivian military captured and executed Che near Vallegrande, a small town in the Santa Cruz department. General Hugo Banzer, a member of the landholding elite of Santa Cruz, was to become the most notorious of Bolivia’s dictators from 1971 to 1978. In addition to overseeing the tortures, disappearances, forced exile, and imprisonment of thousands of Bolivians, General Banzer also made it his mission to favor the Santa Cruz elite. Undoing land reform efforts, he granted national loans to



Decolonizing Bolivia 37

landowners in Santa Cruz, with most of the loans never repaid. Loan recipients often bought up large amounts of land, further consolidating land ownership among a small percentage of the population. Thus the national government subsidized capitalist enterprises that further concentrated resources among the elite while peasants controlled a meager 7 percent of all land within Bolivia (Laguna 2013). Despite the atrocities that occurred under the Banzer regime, he served as a democratically elected president from 1997 to 2001, highlighting the persistent power of the conservative elite in Bolivia. A growing economic crisis marked Bolivia’s return to democracy in 1982. Hampered by loans during the military dictatorships that did little to develop social programs and a crash in tin prices in 1985, Bolivia fell to the mercy of the IMF and World Bank to stabilize the economy. In line with structural adjustments imposed by these lending institutions, government expenditures on health, housing, education, and sanitation plummeted throughout the 1980s and 1990s. The imposition of World Bank and IMF policies created a neoliberal crisis in the health care sector. Services were of such poor quality and so expensive that individuals began to view the formal health care system as a last resort. The reappearance of cholera in 1991 dramatically exemplified the devastating health consequences of neoliberalism. Within this context of a weakened public health care system, NGOs became the preferred method for international development organizations to implement local programs, bypassing the state (Gill 2000). The first HIV-­related organizations in Bolivia emerged as a part of this booming NGO industry. The economic crisis generated by neoliberalism perpetuated a reliance on NGOs in place of publically financed services. It also displaced and dispossessed rural peasants, spurring rapid urban migration. With limited options in Bolivian cities and growing poverty, the poor and working class began to organize and develop new strategies for confronting poverty, inequalities, and unemployment. In this sense, neoliberalism gave birth to more powerful social movements that had a new vision for Bolivia (Fabricant 2012). In the late 1990s and early 2000s, various social movements joined forces to help bring the political party MAS to power. The 2005 election of Evo Morales marked a new era for Bolivia. However, political transformations do not imply immediate transformations in social hierarchies. Bolivia’s history of conquest, colonialism, and postcolonialism included systems of land ownership, labor exploitation, and citizenship rights rooted in perceived racial differences, serving to perpetuate class hierarchies based on race (Fabricant 2012; Farthing and Kohl 2014; Laguna 2013; Nash 1979; Postero 2007). While the old racial hierarchy is beginning to disappear and there is now greater social mobility, racial categorizations remain a salient feature of life, especially in Santa Cruz, as it is the center of the opposition movement.

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Because of this, it is important to break down how this racial categorization system operates. The traditional elite has historically drawn a distinction between indios and mestizos/Europeans, with mestizos and Europeans taking on a racial categorization of “white.” While this is a seemingly simple dichotomy, it is actually remarkably complex. This is in part because Bolivia has a long history of whitening efforts, many of which have been state sanctioned, whereby dominant society has encouraged individuals of an indigenous background to shed markers of indigenous identity (Ari 2014). For example, the education system has been used as a way to train indigenous Bolivians to become modern citizens, with “modern” signaling a distinction from traditional/indigenous (Luykx 1999). Further, past policies of segregation included banning those dressed in indigenous clothing from streetcars and city plazas (Ari 2014). As scholars of indigeneity in Latin America have noted, individuals are keen to abandon markers of indigeneity for social mobility, embody markers of indigeneity for group solidarity, or create some blend of the two extremes (Cope 1994; Lagos 1994; Postero 2007). This can make it difficult to easily place people within an ethnic category. Even Evo Morales, hailed as the first indigenous president, has had his indigeneity questioned and has been criticized for a lack of fluency in the Aymara language (Canessa 2007). In the decade preceding my fieldwork, there was a downward trend in the number of individuals self-­identifying as indigenous. In the 2001 census, 66.4 percent of Bolivians self-­identified as part of an indigenous group. In the 2012 census, this figure dropped to 48 percent. Out of those who did identify as indigenous, 80 percent identified as Aymara or Quechua (INE 2012). This shift in numbers suggests not necessarily that there are fewer individuals with indigenous heritage but rather that individuals are beginning to define their ethnicity differently. This trend may in part have to do with rural-­to-­urban migration. As rural residents migrate to urban centers, there is a tendency for the children of the original migrants (but not necessarily the original migrants themselves) to draw less upon the indigenous language, dress, and identity of their parents. Racial hierarchies in lowland Bolivia have a distinct dynamic. In Santa Cruz, individuals frequently draw on a colla/camba dichotomy in everyday discourse, and the use of these terms is often contradictory and inconsistent. The term colla typically refers to indigenous people from the highlands and has taken on a derogatory tone. The meaning of camba, a Guaraní term meaning “friend,” has shifted over time. Whites historically used the term to differentiate between indigenous people from the lowlands and those of the highlands. Over the years, camba has shifted to a term more generally meaning someone from the lowlands, losing its association with indigenous people. Lowland mestizos and whites now use camba as a source of regional pride and to differentiate themselves from



Decolonizing Bolivia 39

those whom they perceive as more indigenous. Despite the apparently straightforward meanings of colla and camba, contradictions abound in their everyday use. Whites often use colla as a general insult aimed at anyone perceived as being of a lower racial or social status. Even poorer, darker-­skinned individuals from the lowlands, who might be referred to as colla by a higher-­status person, will use colla to differentiate themselves from recent migrants to Santa Cruz. The continued salience of racial hierarchies has profound health consequences. The othering involved in the perpetuation of racial differentiation shapes social interactions. Medical anthropologists working in all regions of Bolivia have noted that the poor treatment of patients from subaltern classes3 has contributed to patients’ care-­seeking patterns (Bastien 1998; Crandon-­ Malamud 1991; Ramírez Hita 2011). Additionally, racial hierarchies remain interwoven with class, and poverty shapes vulnerability to an array of diseases and access to health care.

Figure 2.1. “Down with the colla,” engraved on the sidewalk in a middle-­class

neighborhood.

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Fault Lines of C a re

Gendered Dynamics of Power It would be a mistake to assume the existence of a uniform pattern of gender hegemony in Bolivia given the country’s diversity. However, women have systematically been in a position subordinate to men across class and ethnic groups and throughout the nation’s history. Thus it is useful to think about the diversity of gender ideologies in Bolivia as existing within multiple forms of patriarchy. There is a tendency to romanticize gender relations as being more egalitarian within indigenous groups (Fabricant 2012). This is particularly true in relation to Andean indigenous groups that view the genders as complementary, whereby male and female gender roles complement each other. However, this is far from an egalitarian structure, instead existing within a structure of male dominance (Ari 2014; Ticona 2011), as evidenced by high rates of intimate partner violence (Van Vleet 2002) and the limited participation of women in community decision-­making (Ticona 2011). Further, the colonial and postcolonial eras resulted in the intersection of different forms of patriarchy. For example, following the 1952 revolution, the government mandated that peasant union representatives were to be led by men and rejected official union documents if they had women’s names on them (Ari 2014). Even within resistance movements that have worked toward achieving greater social equality, women have consistently had their work undervalued and their voices marginalized, despite being responsible for a majority of the invisible labor, such as organizing roadblocks (Barrios de Chungara 1978; Fabricant 2012; Kohl et al. 2011). The machismo concept permeates local discourse across ethnic boundaries as a way to explain male dominance. In an interview with an activist from a feminist organization in Santa Cruz, I noticed a yellow sign taped to the wall that said, “el machismo mata” (machismo kills). Referencing the sign, I asked her how she defined machismo. The middle-­class woman responded, “It’s the result of a patriarchal system that is taken as normal but that puts women at a level lower than men.” Not only middle-­class women see machismo as permeating gender relations. A research project led by women from the Chiquitano indigenous group of the Santa Cruz department resulted in a publication on violence and HIV that explained to the target audience of other Chiquitana women, “Violence is a product of machismo, and in our communities, we don’t criticize machismo, we see it as something natural . . . Machismo is the cause of violence and is a barrier for preventing STDs and HIV” (CICHAR n.d., 12). Using machismo to explain the existence of gender inequality is problematic, as it fails to give attention to the diverse ways that men construct their masculinities. Yet the pervasiveness of this concept in public discourse indicates that machismo is critical to the social imaginary across different social groups. I return to this theme in more detail in chapter 6.



Decolonizing Bolivia 41

Throughout Bolivia’s history, public health interventions have approached gender in problematic ways, in some cases reinforcing gender inequalities. Women and children were the subjects of the earliest state-­sponsored public health interventions in the first part of the twentieth century in response to the high maternal and infant mortality rates. Within these efforts, there was a salient theme of blaming women for the nation’s ills, as botched abortions, too many children, and prostitution were framed as the consequences of women’s deviation from domestic roles rather than the result of social injustices (Zulawski 2007). Various programs implemented throughout the second half of the twentieth century continued to focus on women’s reproductive capacities, with these initiatives reinforced by international health efforts focused on family planning (Paulson 1998). One of the most recent iterations of gender-­specific public health initiatives was the SUMI (Seguro Universal Materno Infantil / Universal Maternal and Child Insurance) Law, which provides state-­sponsored health care coverage for children under the age of five and some forms of reproductive health care for women. SUMI was first introduced in 1996 and has since undergone various changes in name, services provided, and funding schemes. Originally financed through a World Bank loan for health care reform, it is now central to state-­sponsored public health efforts. In 2006, the government expanded the services offered under SUMI, yet critics point to how this program continues to reinforce gender inequalities by focusing almost exclusively on women’s reproductive capacities (Pooley et al. 2008). As in other parts of the world, pervasive gender inequalities characterize Bolivian society. These inequalities generate fault lines and contribute to health disparities tied to gender, race, and class, with the public health infrastructure ill equipped to respond to these health consequences. The national government and international development organizations have engaged in efforts to address gendered fault lines that contribute to poor health outcomes, yet they have focused almost exclusively on reproductive health. This trend has continued even throughout the era of decolonization.

The Era of Decolonization Since 2005, political, economic, and social shifts have transformed Bolivia. Some of the major changes that have occurred include a new constitution, land reform, nationalization of natural resources, and rejection of U.S.-­led coca eradication programs. Earth Politics has played an influential role in many policies; this ideology has roots in indigenous intellectualism and promotes the use of Andean religious and political traditions as a part of developing policies. For example, Earth Politics was influential in developing the Vivir Bien (well-­being)

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law that envisions a model for development that emphasizes solidarity and harmony while rejecting capitalist models of development that are harmful to the environment and the poor. Earth Politics involves a decolonizing agenda, which seeks to undo the systems of gender, class, and racial domination that have persisted since the colonial era (Ari 2014; Johnson 2010; Mignolo 2001). In the name of decolonization, the MAS government has implemented sweeping political changes under a political platform that simultaneously draws on a global human rights framework, neo-­Marxist political ideologies, principles of a participatory democracy, and liberal ideologies of liberty and equality (Goodale 2006, 2009). The new constitution passed in 2009 is one of the most progressive and human-­rights-­oriented constitutions in the world, with language that seeks to empower historically marginalized groups (Albro 2010).4 The new constitution offers the potential for greater gender equality and focuses on the political participation of women by establishing gender quotas at all levels of government. Latching onto constitutional promises for greater equality, feminist organizations are actively fighting for laws and policies as a means for institutionalizing gender equality. Recent legislation includes a law that recognizes and seeks to eliminate 13 forms of violence against women, land reform efforts that have included issuing more than 10,000 land grants to women, and protections based on gender identity and sexual orientation within the Law against Racism and All Forms of Discrimination. Policy changes do not necessarily imply radical changes in gender ideologies or gender relations. The case of Minister of Rural Development Nemecia Achacollo clearly illustrates this; her husband burned her official documents out of anger that she was not at home enough (Villarroel 2011). Despite the limited reach of legislative changes, state-­level transformations offer individuals new routes for exerting agency and contesting the daily manifestations of gender inequalities that permeate their lives (Parson 2013). The LGBT rights movement has also gained force during the era of decolonization. Ironically, it was the neoliberal era that gave birth to LGBT activism, as Bolivia’s first gay men’s outreach center was a USAID invention aimed at preventing HIV (Wright 2000, 2006). LGBT organizations that have now benefitted from decades of foreign financing now see that a government that prides itself on an image of promoting greater social equality is taking their demands and activism seriously, although response to these demands has been inconsistent and at times contradictory. For example, the new constitution banned same-­sex marriage, yet in 2016, the Plurinational Assembly passed the Gender Identity Law, which allows individuals to legally change their gender. Backlash to the law included a coalition of religious groups and conservative elites.



Decolonizing Bolivia 43

Decolonization efforts have generated internal and external tensions. In Santa Cruz, the local political agenda remains at odds with the national government. Further, the process of challenging neoliberalism and imperialism has generated tension with more powerful nations that have historically held sway over the Bolivian government. For example, Bolivia’s rejection of U.S. Drug War policies contributed to conflict between the two nations. This reached a climax in 2008 after U.S. Fulbright scholars and Peace Corps volunteers reported to the press that the U.S. embassy in La Paz had asked them to act as spies. In the wake of the media attention, Bolivia expelled U.S. ambassador Philip Goldberg, declaring him a persona non grata. In return, the U.S. expelled Bolivia’s ambassador. The two nations have yet to restore diplomatic relations. In an attempt to break away from the neoliberal model propagated by North American and European development agencies, Bolivia has generated new south-­south alliances. Following Morales’s election, Cuba and Venezuela began sending health brigades. In a less likely alliance, Iran funded a new hospital in El Alto. These alliances have not gone unchallenged, as evidenced by the public outrage that occurred after the press published photos of Bolivian nurses appearing in veils during the opening ceremony of the new hospital (Centellas 2015). While the tension surrounding decolonization plays out on various levels, the health care system, particularly in the realm of HIV care, represents a focal point in relation to the process of decolonization. The National Development Plan, issued following the passage of the new constitution in 2009, describes the health system as a vestige of colonialism and proposes removing market-­driven and neoliberal components and replacing them with a single-­payer communitarian health system. Initially, there were plans to fund this system through revenue generated from nationalizing the country’s natural gas resources. However, this revenue has only been sufficient to expand previously existing smaller social insurance programs, such as programs covered by SUMI, and health care for senior citizens ( Johnson 2010). There is substantial popular support for a national health care system, even among the political opposition. However, the national government’s strategy for reforming the health care system is at odds with the funding mechanisms for HIV care, as international donors represent the vestiges of neoliberalism that the National Development Plan describes. The expulsion of USAID and IBIS, described earlier, and the freezing of Bolivia’s Global Fund grant generated a sense of crisis within the HIV community. The health care system as it exists now is unable to replace the services for HIV that were dependent on foreign support. A law aimed at regulating NGOs, passed in 2013, further perpetuated feelings of anxiety. This law requires the registration of NGOs and grants the government the ability to dissolve them. In 2015, the national government used

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this power to dissolve four prominent NGOs for “political meddling”—­a claim that a group of Bolivian leftist intellectuals said was unsubstantiated (Achtenberg 2015), illuminating how criticism of the strategies of decolonization is not limited to conservative opposition movements. Although health care reform is gradually increasing access to health care, the focus has been on expanding primary health care infrastructure, especially for mothers and children. Because of the legacy of disease-­specific global health interventions, HIV care remains, for the most part, in a distinct realm. As global health funding disappears, sources of HIV care also disappear. Compounding fears of vanishing funding is anxiety over the potential closure of NGOs that have provided HIV-­related services. Thus HIV care offers a window into understanding the paradoxes produced in decolonizing Bolivia and the fault lines that have emerged alongside this paradox.

The Myth of Free Care On a Tuesday afternoon in the dead heat of summer, I was observing a group therapy session at CDVIR. All the participants were there as a requirement before beginning ARVs. One woman, who appeared to be in her mid-­20s, had brought her two children with her. One was an infant, and the other was about six years old. Minutes into the session, a commotion broke out on the couch. I looked over to see the woman trying to contain the diarrhea that was leaking from her baby’s clothes onto her pants and the couch. She quickly wrapped a blanket around the baby’s bottom, and the older child carried the baby out of the room. The mother tried desperately to clean the mess before rushing out. The audience politely watched. The smell was terrible. After the woman left, someone flipped over the couch cushion before the session resumed. Weeks later, the stain was still on the couch. It was clear no one had tried to clean it. I never saw that woman again, so I cannot pretend to know anything about her situation. However, it struck me as significant that the reason the diarrhea had made such a mess was because the baby was not wearing a diaper. The typical cost for one disposable diaper was 2 bolivianos (Bs), or about $0.30, which was the same cost as bus fare. I would be jumping to conclusions to assume that the mother had forgone using a diaper to afford bus fare to CDVIR, but the possibility of this scenario illuminates the sacrifices people have to make to seek care. The national government legally guarantees free health services for HIV. As a result, the medications, laboratory tests, and doctors’ appointments associated with HIV care are free. However, there is still a high cost of seeking care in relation to people’s incomes. In 2014, the minimum wage was 1,488 Bs ($215)



Decolonizing Bolivia 45

per month, or approximately $7 per day. However, a majority of Bolivians work in the informal economy, which involves self-­employed activities such as operating a market stall or working as a street vendor (Goldstein 2016). Informal economic activities have no guaranteed salary or benefits. As a result, incomes often fall below the minimum wage. In 2012, 24  percent of the population earned less than $4 per day, 35.5 percent earned between $4 and $10 per day, and 38.6 percent earned between $10 and $50 per day. Less than 2 percent of the population earned more than $50 per day (Castellani and Zenteno 2015). To make ends meet, people engage in strategies to reduce costs of living such as residing with extended family or caring for the children of family members who have sought work in other countries, with the expectation that they will receive remittances in exchange. However, relying on social networks is not always a viable economic strategy. The Ministry of Health does not record information on the economic situation of people with HIV, but multiple studies highlight the salience of economic struggles among this population. Of the people I formally interviewed, 66 percent described their economic situation as difficult or very difficult. Another study found that 63 percent of HIV-­positive respondents to a survey in Santa Cruz reported severe food insecurity (Palar et al. 2013). Comparing incomes to expenses illuminates the economic struggles that many face. Renting a room on the urban periphery could easily cost 500 Bs ($72) per month. If a single mother were living on $4 a day, this would leave her roughly $50 for monthly expenses other than rent. While rent is cheaper on the urban periphery, it comes with higher transportation costs. Although bus fare was a flat 2 Bs in 2014 for any distance on a bus, living farther from the city center comes with the need to take multiple bus lines to reach a destination. Most of the people I interviewed reported taking two buses each way to travel to CDVIR, with a round-­trip cost of 8 Bs ($1.16). Initiating ARV treatment involves multiple trips to CDVIR in a short span of time to meet the requirements of attending three support group sessions as a condition to beginning medication, the initial doctor’s appointment, and a lab work appointment for viral load and CD4 testing. Apart from the transportation costs, because of long wait times, patients typically had to request the entire day off from work for their appointments at CDVIR. CDVIR was not the only location where people went for care, as the doctors there dealt exclusively with treating HIV. For example, if a patient had a suspected case of tuberculosis or toxoplasmosis, he or she had to be referred elsewhere for testing and treatment. Map 2.2 illustrates the long distances that some patients must travel. The map shows CDVIR in the center of the city, which can involve an hour of travel on a city bus from the population-­ dense neighborhoods of the far eastern part of the city. The NGOs Epua and RedVihda are near the city center, but not within walking distance of CDVIR.

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Fault Lines of C a re

Map 2.2. Locations of HIV-­related NGOs and public health centers. Map by Abigail

Fisher.

Municipal health centers, such as 18 de Marzo, where Gabriela sought care, are spread throughout the city and can offer easier health care access for health conditions other than HIV. However, wait times can be disastrously long at these centers. Funding through the Global Fund has ensured that ARVs and medications for select opportunistic infections are available for free. However, this does not mean that all health costs are covered for people with HIV. In my observations between doctors and patients at CDVIR, I frequently watched doctors list the lab tests a patient should take in response to reported symptoms. Stool samples, urine tests, and blood tests all came at a cost. Positive test results on any of these implied a need to purchase medications. Thus making ARVs free only relieves one of many economic barriers to living healthy with HIV. Apart from economic struggles, an array of other factors can make seeking care difficult. During the rainy season, torrential rains flood drainage canals and turn unpaved roads into mud, making many roads in poor sectors of the city impassable. In a country with a history of rebellion, the most common protest strategy is roadblocks on major transportation routes. Near-­weekly roadblocks can disrupt bus routes and thereby prevent people from making their



Decolonizing Bolivia 47

appointments. The employees of CDVIR also engage in protests in the form of strikes to demand higher salaries, more secure benefits, and better working conditions. Two strikes occurred during my year of research, and the strikes were poorly communicated to patients, who showed up for their scheduled appointments only to have to return another day. The ethnographic context that makes free ARVs inaccessible often becomes muddled in the global health realm. Global health bodies use quantitative indicators such as GDP and poverty rates to determine what countries qualify for funding. As the rate of poverty reduction in Bolivia has been quite remarkable, funders are beginning to see it as a less lucrative country to fund. Between 2005 and 2014, the poverty rate fell from 59 percent to 39.3 percent, and the extreme poverty rate fell from 35 percent to 17.3 percent (World Bank 2015a). As a result of these trends, Bolivia is expected to receive less support from the Global Fund in the future, and other financers are beginning to scale back their support as well. This actually complements the national government’s strategy of decolonization that views international agencies as a source of imperialism. However, amid these changes, people with HIV are still struggling to access care, and the sources of care that are available are beginning to disappear.

The Labyrinth of Decolonization The structure of care at CDVIR highlights the specific ways that HIV care is disappearing alongside decolonization. The first Global Fund grant financed lab equipment, ARV purchases, and salaries for CDVIR employees. Within Bolivia’s grant agreement, there is the expectation that the responsibility for funding specific aspects of HIV care will eventually transition from the Global Fund to the government. This has at times come with resistance from the national government, which has in some cases led to a loss of services rather than the clean transition of funding services envisioned by the grant agreement. When I began fieldwork in August 2013, the CDVIR staff included four doctors, four psychologists, a nurse assigned to each of the doctors, two additional nurses who oversaw patient intake, two lab technicians, a pharmacist, and several other support staff. CDVIR also housed the Regional HIV/AIDS Program, which included the director of the program and his support staff. Additionally, university students studying each of these occupations often completed their internships at CDVIR. At any given time, there were several interns at CDVIR who were often given full duties with patients with minimal supervision. The logic behind this structure of care was to provide various aspects of care—­biomedical care, emotional support, and pharmacy access—­at the same location. In reality, the emotional support was limited to ARV adherence counseling, the pharmacy only supplied medications available through Global Fund

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support, and biomedical support included prescribing ARVs and testing CD4 and viral loads. By mid-­2014, the situation at CDVIR was beginning to change. In accordance with the Global Fund grant agreement, the national government took over purchasing ARVs. The grant agreement also dictated that the Global Fund would terminate funding for six staff positions by July 2014, with the expectation that funding for these positions would continue via the national government. However, the national government failed to uphold this part of the agreement, resulting in the loss of these positions. A top Ministry of Health official justified this decision by saying that CDVIR was a barbaridad de sucia (savage filth) and that money could be better invested elsewhere. Funding from the Global Fund also went toward testing and prevention activities administered by LGBT organizations in addition to peer educator and support group programs provided by NGOs such as RedVihda. The peer educator programs typically operated through a referral system in which a doctor or psychologist at CDVIR would request support for a patient whom they saw as at risk of abandoning treatment. In speaking with a psychologist about how she made referral decisions, she explained that most patients would benefit from a peer educator. However, with limited support for these programs, she only made referrals for the most difficult patients. Although RedVihda was able to hire a few full-­time peer educators, they also relied on nearly a dozen volunteer peer educators. As volunteers, the peer educators were given a small stipend per visit with a patient. One peer educator expressed his frustration with this arrangement, saying that most of the stipend went to cover transportation costs. Further, a patient’s signature verifying the visit was necessary to receive the stipend. If a patient was not at home for a scheduled visit, the peer educator would not even receive reimbursement for bus fare. Despite problems with the structure of peer educator programs, many people who received this form of support described it as essential in helping them learn to manage living with HIV. Peer educator programs operated via NGOs received their funding exclusively through external organizations. Thus decolonization put peer educator programs at risk, as they would cease to exist in the absence of international funding. Decolonization has inadvertently contributed to gaps in care for people with HIV. Although poverty has been decreasing, health care services often remain inaccessible to a large portion of the population. HIV care has become a point of tension as a part of the larger struggle to reform the health care system. The organizations that the national government views as vestiges of colonialism allow for the existence of services that would not otherwise be available. Care for people with HIV is not something easily absorbed by the broader health care system, and instead, services simply disappear in the absence of international support.



Decolonizing Bolivia 49

Performing Decolonization In June 2014, Bolivian government officials ordered the reversing of the numerals on the clock of the Congress building that forms part of La Paz’s famous Plaza Murillo. A smaller decolonized clock, as it was later called in the press, was also given as a gift to each of the delegates of the G-77 conference that Bolivia hosted in 2014. The G-77 is a coalition within the U.N. that began with the goal of promoting the interests of developing nations. As host to the conference, some Bolivians saw reversing the numerals on the clock as a symbolic act of contesting global hierarchies of power. The shadow of the sundial (the first clock) runs clockwise in the Northern Hemisphere but counterclockwise in the Southern Hemisphere. The very definition of clockwise and assumptions that clocks should run clockwise reflect a global center of power in the Northern Hemisphere and Bolivia’s status as a nation dominated by northern powers. Various media outlets quoted the president of Congress as describing the reversal of the clock as “a clear expression of decolonization.” Political rivals mocked the gesture, with one politician from an opposition party telling the press, “To pretend to change the universal laws of time is ridiculous” (El Día 2014). The decolonized clock embodies the critique that under Morales, decolonization has been largely performative and therefore an ineffective means of undoing social hierarchies (Howard 2010; Rivera Cusicanqui 2011). The performance of decolonization has resulted in the expulsion of key global health actors and tension with the Global Fund, putting funding for HIV care at risk. Beyond this, a rhetoric of decolonization cannot replace concrete actions that would improve the lives of the population. While the Bolivian Constitution defines health care as a fundamental right and mandates that the state provide universal health insurance, 57 percent of the population continues to have no health insurance (Ledo and Soria 2011). An agenda of decolonization does not imply immediate changes in how people think and interact with one another, and the colonial habitus (Rivera Cusicanqui 1993) continues to structure social relations. Undoing this internal domination has been met with resistance, making decolonization an ongoing, complicated process (Viaña et al. 2010). In the next chapter, I turn to Magaly. Her experiences as a poor woman who migrated to Santa Cruz from a rural area prior to her HIV diagnosis illuminate the ways that social hierarchies shape people’s experiences in the health care system, showing the limitations of decolonization and the continued production of fault lines in HIV care.

3 • WHEN C ARE IS A “SYSTEM ATIC ROUTE OF TORTURE”

On August  2, 2005, the nine-­months-­pregnant Magaly Chacón1 awoke before dawn upon feeling her water break. She took a taxi to the public hospital in Montero, a satellite city about an hour’s drive from the center of Santa Cruz. A doctor in Montero then called an ambulance to rush her to Santa Cruz. According to Magaly, she arrived at the public maternity hospital, Percy Boland Women’s Hospital (Hospital de la Mujer Dr. Percy Boland Rodriguez), at 7:00 a.m. The ambulance driver left Magaly in the hands of Dr. Escalante, an OBGYN at Percy Boland who at the time was also the director of CDVIR.2 Through tears, Magaly narrated to me the events that followed: When I arrived at 7:00 in the morning, he [Dr. Escalante] told me not to worry, that everything would be OK, that they had the antiretrovirals and that they would operate on me at 1:00 in the afternoon. Then they left me in the waiting area, where they put all the other women who were in labor. At 2:00 or 3:00 in the afternoon, the doctor returned to tell me that they didn’t receive the antiretrovirals, and they would operate at 6:00 in the evening, since they had to do other cesareans before they could operate on me. At 5:00 in the evening, they operated on me. The entire time that I was in the waiting area, I saw the inhumane treatment of women who are in labor. They just left me there, alone. I knew I needed the cesarean, but I was in labor for hours. When they took me in for the cesarean, I told the doctor that they had to give me the medication so that I wouldn’t transmit anything to my baby. He didn’t say anything but performed the operation. After the operation, they put me in an isolated room where everyone knew my HIV status. The pediatrician arrived six hours 50



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later but never gave medications to my daughter to prevent transmission. I was terrified.

Magaly’s description of what she needed as appropriate care to protect her daughter was in line with what local public health officials promoted as optimal practice to prevent mother-­to-­child transmission at the time—­a standard of care that her doctor at CDVIR assured her she would receive. When Magaly was pregnant, people with HIV in Bolivia were just beginning to gain access to ARVs. ARVs had arrived in Bolivia years later than they had in other resource-­ poor countries, as HIV received little local attention in light of the low rate of reported cases. In the early 2000s, a small number of Bolivians with HIV were able to gain inconsistent access to ARVs through donated medications from Brazil (Aguilera Hurtado 2014), but it took a grant from the Global Fund to enable more widespread access to the lifesaving drugs. In April 2005, the Bolivian Ministry of Health had just purchased the first stock of ARVs with its first grant from the Global Fund, but full ARV rollout was not in effect until 2006. However, with the prevention of mother-­to-­child transmission as a priority under global and national health policies, local doctors had the ability to perform cesareans, administer Nevirapine during delivery, and provide ARVs to newborns.3 Magaly, it seems, was well aware of this protocol. On three separate occasions, she had tried to schedule a cesarean before going into labor. Each time, she brought with her the necessary paperwork from CDVIR showing that a cesarean was medically necessary. Only able to schedule a cesarean three days prior to the procedure, she initially tried to schedule it for July 22 and then July 25, but she was told that the doctor in charge of cesareans had no openings. When she finally found an opening, the hospital sent her to a lab to have blood work done before they would give her the appointment. Even after going to CDVIR on August 1, with complaints of feeling ill and weak, she was not given an appointment for a cesarean at Percy Boland until August 3. However, her daughter did not wait that long. Throughout her pregnancy, Magaly’s doctor at CDVIR, Dr. Morón, assured her that her daughter could be born healthy, without HIV. Since CDVIR stocked the necessary medications, it was up to them to coordinate with local hospitals when they knew that an HIV-­positive mother would be delivering there. Due to an error later blamed on an intern, the medications had not arrived at Percy Boland when Magaly arrived there in labor. According to one doctor familiar with the case, “The doctors decided to do nothing. No one knew what to do, so they thought it was better to not do anything.” In the months following the delivery of her daughter, Magaly began to learn the details of what happened and why. Despite the known benefits of postexposure prophylaxis (Chi et al. 2013), Magaly’s daughter did not receive

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medications until she became very ill at four months old. From Magaly’s point of view, the doctors would have had to acknowledge their failure to provide appropriate care for preventing mother-­to-­child transmission had they followed up with treatment after the child’s birth. Between the ages of four and eight months, the infant was hospitalized, and in Magaly’s words, she was “all skin and bones.” Fortunately, with the medications finally available, the child recovered. But in the following years, she struggled to stay healthy, falling ill with fevers, tuberculosis, and frequent infections. When she was four years old, her condition progressed to AIDS. After two years, she was able to revert out of the AIDS stage and was an active eight-­year-­old when I first met her, although she walked with a limp and was hearing impaired as a consequence of a high fever during one of her illnesses. Shortly after Magaly gave birth, the local HIV activist organization RedVihda approached her. As an organization dedicated to providing a range of services to people with HIV, RedVihda offered to provide legal representation if she wanted to pursue charges against the doctors involved. At first, she declined out of fear of everyone knowing about her condition. However, by the time her daughter was eight months old, Magaly had decided she wanted to seek justice for her daughter’s sake. She became the first HIV-­positive person in Bolivia to file criminal charges of medical negligence against anyone in the health care system and remains the only person with HIV in Bolivia who has successfully brought a case of medical negligence to court. In the aftermath, Magaly experienced a flood of media attention. “My name was in all the newspapers, on all the news programs,” she said. Her testimony appeared in a PAHO report on HIV in Bolivia (Ross 2007). Over the years, reference to Magaly’s case has continued to occasionally appear in the media, and just before I left Bolivia in August 2014, a TV station invited Magaly to appear on a news segment highlighting a spike in new cases of HIV. I first met Magaly at a job skills training session offered by Epua in October 2013. During a break, Magaly introduced herself to me. I already knew of her case, but I had not realized until then who this woman was. She asked me, “Are you still doing interviews?” and proceeded to give me detailed instructions on how to get to her house. The following week, I made my first of many trips to Magaly’s home in a poor neighborhood on the southeastern edge of the city. At the time, Magaly was still fighting her case, after years of experiencing judicial barriers and RedVihda eventually abandoning her case. La Casa de la Mujer, a local feminist organization, was planning to reopen the case and agreed to provide free legal counsel. In the months that followed, the court granted Magaly multiple legal hearings, only to postpone the hearings on several occasions. On the advice of her lawyer, and feeling as if she had no other options for justice, Magaly decided to enter a conciliación, an out-­of-­court mediation. After



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negotiations with the doctors, Magaly agreed to drop criminal charges for a payment of $4,000—­$2,000 from each of the two doctors she named in her charges of negligence. One was Dr. Escalante, the director of CDVIR, and the other was Dr. Morón, the doctor who oversaw her care for five months before the birth of her daughter. Magaly found the settlement humiliating, as the doctors demanded that she put a price on her daughter’s life like she was “a piece of meat” at a time when she was in the midst of an economic crisis and barely able to pay for the bus fare to meet with her lawyer. There are multiple layers to Magaly’s accusations of medical negligence. The year that Magaly gave birth to her daughter—­2005—­was a turning point in Bolivia’s history. It was the year that Evo Morales would be elected as the first indigenous president of Bolivia. Part of President Morales’s promises for a more just society included plans to transform the health care system into a system that would be accessible to all. The year 2005 was also a turning point for HIV care in Bolivia, with the initiation of the country’s first grant from the Global Fund. Magaly’s experiences of care between 2005 and 2014, coupled with her attempts to use the legal system to demand a higher standard of care, illuminate the challenges of decolonizing the health care system and creating a system that is widely accessible to all Bolivians. Magaly’s illness narratives, and those of others with HIV, demonstrate that a primary challenge to improving HIV care, and the health care system more broadly, lies in the social hierarchies embedded within the health care system. The resistance to restructuring these hierarchies is a reflection of broader social tensions that exist in Bolivia. Thus it is important to interrogate the production and persistence of these hierarchies and the role they play in producing medical negligence. While unique situations frame Magaly’s narrative, her experiences are a window into understanding the systematic discrimination and humiliation that HIV-­positive patients in Bolivia experience. Individuals working within the health care system were a part of producing Magaly’s poor treatment. While her doctors may have been correct in asserting that they could do nothing to prevent the transmission of HIV to her daughter given the constraints they faced, Magaly also experienced humiliation and disregard during her delivery and in the years that followed as she fought her case. Similar accounts of negligence permeate the experiences of other people with HIV whom I interviewed. Other scholars working in Bolivia have noted similar patterns, going as far as referring to the mistreatment of patients as violence (Ramírez Hita 2011). Magaly’s experiences illuminate why it is important to interrogate acts of medical negligence as a form of violence. In this chapter, I analyze Magaly’s case by drawing on the idea of a continuum of violence (Bourgois 2001; Holmes 2013), examining how structural violence intersects with symbolic violence in the production of medical negligence. Ultimately, structural constraints significantly limit the ability

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of health care practitioners to provide the highest standard of care, even when resources are available via global health initiatives. This allows health care workers to shift blame to the failings of the health care system, distancing themselves from their personal responsibilities toward patients. This shedding of personal responsibility toward patients enables medical negligence to become a normalized aspect of the public health care system. Furthermore, social hierarchies make the poor health outcomes of patients from subaltern classes appear normal, further distancing health care workers from their responsibility for patient outcomes. Bringing attention to cases of medical negligence, as Magaly fought to do, serves to challenge the normalized disregard for the lives of marginalized patients. Woven throughout Magaly’s narrative are the ways that mothers with HIV have become a part of global and national HIV policies. Unequal access to care characterizes a colonized health care system, as those with economic and social privileges have greater access to a higher standard of care. Thus when care is unequal, who is prioritized for receiving resources made available through global health initiatives? Public health policies reinforce the notion of unborn children as innocent victims, reflected in the fact that the prevention of mother-­to-­child transmission became the primary goal for using limited ARVs when they first became available. As Magaly’s experiences demonstrate, these efforts did not include a focus on protecting the mothers, and Magaly became the object of blame when her daughter was born with HIV. In her subsequent legal battle, one of her doctors asserted, “I did not give your daughter HIV. You were the one with HIV, and you transmitted it to your daughter!” Such claims detract from the social inequities that led to Magaly not receiving optimal care. These inequities reinforce blame, particularly toward poor women of children born with HIV. As wealthier women have greater access to the highest standard of care that can be bought, they are less likely to undergo the same experiences as poor women with HIV. Magaly’s experiences illuminate the complex and intersecting factors that underlie the politics of life. Global health bodies and a national agenda of decolonization include policies aimed at fostering greater access to health care, including services for HIV. The enactment of these policies, however, involves the micropolitics of everyday interactions within the health care system. Social hierarchies frame these interactions and shape perceptions of who is worthy of what forms of care, generating fault lines within the system of care for HIV.

Situating Magaly’s Case From the perspective of civil society organizations and other people with HIV, Magaly’s case represented the failures of the Bolivian health care system to



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provide an adequate response to and compassionate care for people with HIV. Her case foregrounds the failing public health care infrastructure that, through externally funded vertical health interventions, enabled medications to be available to prevent mother-­to-­child transmission while simultaneously failing to ensure that these medications were accessible when needed. Her case also highlights the extent of inequities within the local health care system, as her multiple requests to schedule a cesarean were denied in a country where 47.1 percent of mothers in the richest quintile have cesareans (INE 2012). The WHO considers a cesarean rate above 15  percent as indicative of unnecessary procedures (Gibbons et al. 2010), and the high rate of cesareans among wealthy women in Bolivia is largely due to elective procedures. Wealthier women whom I spoke with about this issue explained their choice of cesarean in terms of a desire to avoid the pain of a parto normal (natural birth) and fears of bodily trauma. For those working within the health care system, Magaly’s case evoked a different set of responses. Doctors viewed her case as emblematic not of their own shortcomings in treating patients but of the systemic failures within the health care system that fail not only patients but also health care practitioners who do not have the public health resources available to provide patients with optimal care. While I do not intend to dismiss the structural constraints faced by health care providers in resource-­poor settings, such constraints often serve to make invisible the local hierarchies and symbolic violence that further perpetuate avoidable suffering and disregard of individual lives. In other words, it is easy to explain away poor patient outcomes as the result of an underfunded and understaffed medical system, but focusing purely on structural conditions ignores the ways that individuals play a role in patient outcomes. In Magaly’s case, it became difficult for her doctors to blame a shortage of resources when a representative from RedVihda reported that the necessary medications were in stock at CDVIR. As this detail put individual responsibility into question, the doctors shifted the blame to Magaly, reflecting how health care practitioners often blame patients when they experience poor health outcomes. Experiences like Magaly’s are commonplace in Bolivia, and in many instances, patients even expect such tragedies to occur. While Magaly specifically pointed to medical negligence, the broader issue of discrimination within the health care system perpetuates systematic negligence. Of the 70 people with HIV whom I interviewed, 48 reported experiences of feeling discriminated against within the health care system, and every patient reported having witnessed or heard of at least one incident of someone with HIV who felt mistreated while seeking care. Health care workers themselves readily acknowledge widespread patient mistreatment. Doctors who specialize in HIV commented on the negative manner in which some of their colleagues treat people with HIV. Dr. Ribera, who oversees care for patients with HIV at a major public hospital in Santa Cruz, said

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that he has become so infuriated with such acts that he was considering filing criminal charges against the neurologists in his own hospital because they often refused to treat his patients. More broadly, an evaluation of human rights in Bolivia indicates that people with HIV are the group who feel most discriminated against by society (Defensor del Pueblo 2007). Acts of negligence and mistreatment of people with HIV in Santa Cruz are part of a broader trend in Latin America. A recent survey of young people between the ages of 15 and 29 with HIV in Latin America shows that nearly 70 percent of participants reported experiencing discrimination in either a clinic or a hospital. This same study found that rates of discrimination were higher in hospitals and clinics than in any other realm of daily life, including among friends, at work, and within the family (UNAIDS 2013b). The mistreatment of patients is a regular practice, often amplified when a patient has HIV. A patient’s socioeconomic status, race, social capital, and sexual identity all influence his or her treatment in the health care system, and cases of medical negligence are widespread. For example, the Violence against Women Platform of Santa Cruz declared in a public speech that Percy Boland Women’s Hospital, the public hospital where Magaly had delivered her daughter, was “an enemy of women” and a “systematic route of torture,” highlighting the conditions that poor women face during childbirth. This extends beyond Santa Cruz. A study of obstetric emergencies in La Paz showed that women often delayed seeking medical assistance for birth complications, preferring to give birth at home, in part because of past mistreatment by hospital staff (Rööst et al. 2009). Since early 2012, there has been an ongoing debate in Bolivia surrounding attempts to pass a law to sanction medical malpractice in light of recent accusations of medical negligence that received significant media attention yet went unpunished (El Deber 2014). Officially reported cases of medical negligence remain low, with the national ombudsmen’s office recording roughly 1,000 cases per year but estimating that only about 10 percent of cases are documented, primarily because patients have insufficient routes for reporting such cases (Claure 2007). Magaly only decided to take legal action after she was encouraged to do so by activists with RedVihda, who promised her free legal support from the organization. At a national level, efforts to create a law sanctioning medical malpractice have come during a time of rapid political change that includes proposed health care reforms. However, medical professionals are responding with strong resistance to the proposed sanctions. Between 2012 and 2014, the Bolivian Cámara de Diputados (House of Representatives) drafted four versions of a Law against Medical Malpractice. The Bolivian Medical Association and the union of public health care workers actively fought against its passage, staging strikes and



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protests in response to it. Media outlets reported that doctors resisted the law because it failed to account for other factors that led to poor patient outcomes, such as patients putting off seeking care and substandard medical facilities (Opinión 2015). To date, the law has not passed. In the absence of legal sanctions for medical malpractice, Bolivia does not have a well-­developed framework for dealing with accusations of medical negligence (Claure 2007). However, there is a Law of Medical Professional Conduct, passed in 2005 (Congreso Nacional 2005) and cited in Magaly’s case. Further, the Law for the Prevention of HIV and Protection of Human Rights and Comprehensive Care for People Living with HIV/AIDS (also known as the HIV Law) passed in 2007 (Congreso Nacional 2007). This law legally guarantees people with HIV the right to comprehensive treatment for HIV, a right to confidentiality of one’s HIV status, and protection from discrimination. It also specifies that health care providers are required to offer pregnant women an HIV test as a part of prenatal appointments and guarantees access to measures to prevent mother-­to-­child transmission. Although this law was not applicable to Magaly’s case, since it went into effect after she gave birth, representatives from civil society frequently mentioned this law in the conciliación. This presents a question: Why would Magaly’s lawyers argue medical negligence when no laws existed to support her claims? According to one RedVihda representative, the organization’s goal was to use her case to establish precedence. In a country undergoing rapid transformations, activists saw an opportunity to build law from the ground up. In fact, using activism to pressure the government into passing laws has become a primary mechanism for spurring reforms under the MAS government. Under Bolivia’s new constitution, multiple mechanisms exist for community organizations to draft laws and put pressure on the national and local governments to enact public policies (Farthing and Kohl 2014). Magaly’s case presented an opportunity to develop precedence for people with HIV to have legal recourse when they felt harmed by the health care system. A primary obstacle that Magaly faced during her legal battle was proving that her failure to receive care to prevent mother-­to-­child transmission was the result of medical negligence. Thus I turn attention to the issue of medical negligence and the social context that produced the actions and inactions that Magaly claimed were negligent.

Negligence and Disregard João Biehl (2012, 248) describes care as “intimately bound to the possibility of disregard” and explains that “clinical medicine and psychiatry—­disciplines that pledge to do no harm, at the very least—­are made instrumental in blaming victims for their own suffering and disqualifying them from care and human

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connection.” But when and how is disregard a form of medical negligence? The disregard Biehl describes is often labeled as medical negligence when it happens to those with resources in wealthy countries. In many poor countries, patients have come to expect a poor standard of care. The ability to make claims of medical negligence is a double-­edged sword. On the one hand, it assumes that patients should receive recourse when harmed and offers mechanisms for doing so. However, it also creates the potential for overreliance on claims of negligence that place a significant emotional and financial burden on individual practitioners when patients experience poor outcomes, as evidenced by the crisis in liability in the United States (DelVecchio Good 1995). While claims of medical negligence are widespread in the United States, anthropologists rarely frame the experiences of poor patients in resource-­poor settings as medical negligence. Fassin (2015, 334) notes that “distinct normative foundations for medicine in rich and poor countries” create different sets of ethics. Underlying this distinction is a focus on the structural constraints that limit optimal care in resource-­poor settings. While it is certainly necessary to recognize structural constraints, Magaly’s case demonstrates the need to disentangle structural constraints from blatant acts of disregard. A substantial body of research across academic disciplines points to the ways that structural constraints in resource-­poor settings limit the effectiveness of global health programs. However, focusing exclusively on structural constraints detracts attention from how social hierarchies, as they function in the health care system, produce traumatic experiences of care and poor patient outcomes. It would be easy to focus on Magaly’s experiences in relation to the structural violence of poverty, inequality, and decades of neoliberal health care reforms that produced a failing public health care infrastructure ill equipped to provide optimal care for an HIV-­positive mother. Yet by digging deeper into the details of the years Magaly spent fighting her case, a more complex picture emerges— ­one that demonstrates a need to focus not only on structural conditions but also on the ways that local hierarchies produce and make invisible the disregard for individual lives. By taking a disease-­specific focus, global health interventions fail to address this broader context of how the health care system can further marginalize those who are already on the margins of society. This generates a paradox for HIV care where lifesaving medications paid for by the Global Fund are in theory available to everyone who needs them, but social hierarchies perpetuate substandard care for and limit access to those seeking these resources. A failure to call out acts of negligence deepens the double standard in medicine that enables patients with resources to access a higher standard of care and normalizes substandard care for others. Magaly forced me to consider how defining acts of disregard as negligent can help generate accountability for the



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widespread mistreatment of patients. However, this presents some conundrums: Is it possible to distinguish between substandard care that is a result of negligence and that which is a result of insufficient resources to provide adequate care? Is it fair to hold individual practitioners accountable when structural constraints at times leave no options for optimal care? To explore these issues, it is useful to investigate how symbolic violence plays a role in producing medical negligence by naturalizing the suffering of marginalized patients (Holmes 2013).

Symbolic Violence and the Normalization of Medical Negligence The discrimination faced by patients with HIV in the Bolivian health care system has been so pervasive that the Catholic foundation Comunidad Encuentro dedicated a hospital exclusively to people with HIV in need of inpatient care. Patients at Comunidad Encuentro often arrive in advanced stages of infection; many die there. When I was visiting the hospital one day, a patient, Armando, called me over to his hospital bed, telling me that I needed to tell people in the United States how much discrimination there is against people with HIV in Bolivia. Armando then proceeded to tell me a story about an experience he had at a clinic in Plan 3000, a sprawling poor and working-­class neighborhood on the eastern side of the city: When I started to get really sick, I went to the clinic near my house in the Plan. I experienced a lot of discrimination there. No one wanted to attend to me—­the nurses, the doctors—­they said they wouldn’t see me. It’s because I told them what I have. I thought that they needed to know about the HIV to help me, but instead, they didn’t want to attend to me. I was very weak, so I begged them to at least give me an IV. When I sat down in the waiting area and couldn’t stand back up, finally they gave me an IV, but they put me by myself in a room where they kept all the things to clean. I was next to brooms and buckets. Finally, there was a doctor who came to see me. He told me they needed to take fluid from my back. He did the procedure right there. He came in with a cart with his instruments, and there was no one there to help him. So that was my experience of how they treat you if they know you have HIV. But I have experienced a lot of discrimination in my life. I have suffered a lot. The next hospital I went to, I didn’t tell them what I have. I didn’t want to experience that again . . . [pausing for a moment]. Do you think that was normal what they did to me?

When I met Armando, I had heard enough stories like his to know that, in the context of the Bolivian health care system, his experience was normal, even

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though it was illegal following the 2007 HIV Law. As I explained this to him, I added, “You know, there are organizations that will help you file charges against the clinic, if that is something you want to do.” Armando responded, “Are you crazy?! Nothing will happen, and everyone will know what I have.” As we continued talking, he lamented that I was returning to the United States soon and there was not enough time for him to recount to me all his tales of suffering. While Magaly fought back against medical negligence, Armando’s response was more typical. Armando had come to expect mistreatment while seeking care, viewing it as normal and “the way things are.” His experiences point to a need to interrogate the relationship between symbolic violence and medical negligence. Symbolic violence is “a gentle violence, imperceptible and invisible even to its victims, exerted for the most part through the purely symbolic channels of communication and cognition” (Bourdieu 2001, 1). It involves the imposition of categories of social differentiation that justify social hierarchies and inequalities. The rationalization of systems of inequalities as the natural order of things perpetuates systems of domination, contributing to the invisibility of symbolic violence and the misrecognition of the effects of such violence as the result of individual failures on the part of the dominated (Bourgois and Schonberg 2009). Both the dominated and the dominant reproduce and internalize these inequalities. In the context of care for people with HIV in Bolivia, this involves patients viewing their mistreatment within the health care system as normal and health care practitioners failing to recognize the hierarchies and power dynamics that shape their interactions with patients. In analyzing the reproduction of symbolic violence, it is useful to think about symbolic capital (Bourdieu 1986), or the resources available to individuals based on their social status. Symbolic violence results from the use of symbolic capital as a form of power. In health care systems, physicians hold symbolic and material power through control over distributing lifesaving medications and care. The abuse of this power can result in harm to a patient. Some scholars (Liederback et al. 2001) have gone as far as saying that medical negligence is a neutral term that distracts from the fact that people are injured and die, suggesting that physician violence is a more appropriate term to apply to such situations. Despite this strong language to describe the harm enacted on patients’ bodies, within the context of the Bolivian health care system, people with HIV rarely contest the medical negligence and discrimination that characterizes their experiences, highlighting the normalization of this experience. As Armando’s response to my suggestion of seeking legal recourse demonstrates, multiple factors constrain an individual’s ability to actively contest systems of domination within the health care system. Convinced that the judicial system would fail him as it failed Magaly, Armando



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feared that speaking out would only lead to a public disclosure of his HIV status, ultimately harming him more than it would help him. An essential element of symbolic violence is the existence of social differentiation, expressed via social hierarchies. In Bolivia, despite widespread social and political changes since 2005, the public health care sector remains the most hierarchical of all state apparatuses ( Johnson 2010). The ways that ethnocentrism, racism, and classism have historically structured the local sociocultural hierarchy are reflected within the public health care system as patients from subaltern classes encounter doctors and other health care professionals from more privileged backgrounds.4 Within the framework of local hierarchies, those at the top of the medical hierarchy view it as rational and normal to treat patients of a lower social status as inferior and undeserving of the free services available to people with HIV through international aid. While a goal driving the distribution of resources for HIV in resource-­poor settings has been to ameliorate the inequalities faced by poor people, a subsequent shift in thinking among local health care workers has not occurred. The social hierarchies that exist in broader society are reproduced in the context of doctor-­patient interactions, as reflected in one interchange between Magaly and Dr.  Morón during the conciliación. Magaly was rattling off the costs and expenses of having a child with HIV—­late-­night trips to the hospital when her daughter awoke with a high fever, medications to treat infections that did not fall under the official category of opportunistic infections for which the Global Fund provided resources, and bus and taxi fares to the never-­ending doctor’s appointments. Dr. Morón interrupted Magaly to explain, “With the medication, sometimes you just take one pill or some pills until you feel better, without taking all the pills prescribed. Then you develop resistance. That’s why you must always take all the pills, so you don’t develop resistance and keep getting sick.” While I observed similar interactions between poor patients and their doctors that often involved the patient remaining quiet and accepting the misplaced guidance, Magaly refused to stay quiet. She shot back: “Excuse me, Doctor. I’m poor, but I’m not stupid.” There are various factors enabling the reproduction of hierarchies within the health care system despite widespread social reforms. Significant is the failure to shift from a neoliberal, market-­driven model for health care to the state-­ sponsored communal health care system envisioned in the National Development Plan of 2006 ( Johnson 2010). This allows for competing private and public health care systems, with the public system largely underfinanced and under­ developed. Doctors who work in the public health care system have successfully retained the right to a six-­hour workday, often giving them the freedom to operate a private practice on the side. Patients frequently said they felt as if the doctors did not care about patients unless they were making money from them.

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As mandated by the HIV Law of 2007, people with HIV have a right to regular health care appointments, basic lab analyses, and free ARVs. One doctor within the public health care system commented that since people with HIV were not paying for these services, many of his colleagues did not view these patients as a source of capital within the health care system and systematically undervalued their lives. However, the treatment of people with HIV in the health care system is not uniform. I met several doctors who worked tirelessly on behalf of their HIV-­positive patients. Some patients even referred to one doctor at CDVIR as “Doctor Hugs.” However, while there was one Doctor Hugs at CDVIR, two doctors operated private practices on the side and systematically left their shifts at the public clinic early. On a typical day, these two doctors worked only from 1:00 p.m. to 4:00 or 5:00 p.m., leaving hours before their shifts officially ended at 7:00 p.m. If patients tried to seek care between the hours of 4:00 and 7:00 p.m., even though the clinic was still officially open, they were most often told to come back another day. Further, while medical negligence is a normalized phenomenon, this does not imply an absence of agency among individuals seeking care. Systems of domination may constrain individual actions, but there is room for spontaneity (Bourdieu and Wacquant 1992), such as Magaly’s unexpected charges of negligence against her doctors. What happens when a woman like Magaly challenges the social hierarchies that guide the health care system?

Professional Dominance Professional dominance, when applied to medicine, implies that physicians hold a special place within the health care system, granting them authority in the delivery of health care (Freidson 1970). Professional dominance is a hegemonic force in medicine, meaning that individuals and institutions are constantly granting consent, albeit in indirect ways, to medical professionals to control the practice of medicine, even in light of the limitations of biomedicine (Marjori­ banks et al. 1996). Viewing professional dominance as a hegemonic force fosters an understanding of how and why medical practitioners respond in certain ways to claims of medical malpractice that challenge their professional authority and competence. No doctor in Santa Cruz who regularly cared for patients with HIV denied the widespread discrimination toward people with HIV within the health care system. In fact, this issue was often at the center of their concerns. However, these same doctors had strong responses to Magaly’s claims of negligence, which they felt were misplaced; they saw the failing health care infrastructure as the source of negligence. Dr. Ribera, who worked at a major public hospital but completed his residency at CDVIR, explained his perspective to me. I asked



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him about Magaly’s case after he had vented his anger over how some doctors at his own hospital treated his patients. I was mistaken to think he might be sympathetic. He responded, annoyed: “Her case has no grounds. It was 2005. The HIV Law was in development, but there were no standards or guides for providing care until 2009. At that time, if the medications weren’t there, doctors didn’t have an established protocol. Instead of acting and possibly acting wrong, they thought it was better to do nothing. I can think of five other cases like hers from the same year.” He continued by explaining that if her case established a precedent, it could be dangerous for doctors. He viewed Magaly’s case as reflecting a systemic problem that could not be blamed on individual doctors. He maintained that negligence toward people with HIV was a rampant problem but that Magaly’s case was not one of negligence. Dr. Ribera was correct in asserting that Magaly’s case reflected a broader pattern: prior to 2006, only 4  percent of HIV-­positive pregnant women in Bolivia received prophylaxis (Protto et al. 2008). Dr.  Ribera also described the doctors charged with negligence as part of a small number of doctors competent in providing care for people with HIV in Santa Cruz at the time. Venting his own frustrations, he explained that he was recently in charge of a workshop to train doctors from different public health centers in the city over a period of six Saturdays. The first week, only two doctors came. The second week, there was a decent turnout. On the third Saturday, no one came. He felt like he was wasting his time, so he canceled the other three sessions. He viewed the failure of health care practitioners to participate in this training as a reflection of discrimination against patients with HIV. This is made worse by discrimination against poor patients, since most people with HIV who seek care through the public system are also poor. This highlights the intersecting forms of differentiation that normalize the mistreatment of people with HIV within the health care system. Although Magaly’s charges were against two of the small number of doctors in Santa Cruz deemed as competent by their colleagues in treating people with HIV, her charges threatened all doctors who treat people with HIV within a constrained system. As several health care workers explained, this left them feeling impotente (powerless).

The Injustice of Bolivia’s Justice System It was a hot day in early November 2013 as I sat next to Magaly in her cramped bedroom that also functioned as a living room and eating area. She placed several faded, light-­blue cardboard binders in front of me. The legal paperwork she had spent the past eight years collecting filled each of the binders. As she opened the first binder, she lamented over the stained and wrinkled pages, damaged by rainwater that had leaked through the roof of her house during a storm.

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“Right here,” she pointed out to me, “the statement from Percy Boland says that I arrived at the hospital at 4:00 in the afternoon, but that is a lie. I arrived at 7:00 in the morning. They are trying to hide how long I was there, waiting.” I wiped sweat from my face as I leaned in to read the testimony, noticing that it said it was her first time at the hospital, leaving out the three previous times she went in to try to schedule her cesarean. Flipping to another page, she pointed out the testimony that the doctor from Montero provided: “Everything here is correct, and it shows that they called an ambulance for me at 6:00 in the morning. If I left Montero at 6:00 in the morning, how could I not have arrived at the hospital until 4:00 in the afternoon?” Magaly then switched binders, showing me two small pieces of paper from CDVIR. Both had the heading “Medical History Number.” “This was my first medical history number,” she explained, pointing to one of the papers. “There is no longer any record of this medical history at CDVIR, even though I went there every week for five months.” Pointing to the other number, she said, “This is my number now. This medical history begins in September of 2005. Do you understand what they did? They destroyed my first medical history to make it look like I never went there. To make it look like I was the negligent one, so they could wipe their hands clean.” For the next hour, we sipped on cold somo, a traditional drink made from corn and cinnamon, made by a neighbor, as Magaly recounted the various levels involved in covering up the details of her case. Aside from the misstated facts in the sworn statement from Percy Boland, the hospital had “lost” her medical files, erasing all written documentation of the events that transpired there. On two separate occasions, she received notices that granted her legal hearings, only for the Palacio de Justicia (courthouse) to “lose” her files the first time and the judge to resign himself from the case after she resubmitted all the lost paperwork. After Casa de  la  Mujer agreed to reopen her case, her original witnesses no longer expressed an interest in testifying on her behalf, with her expert witness not even responding to her requests. “I don’t know what to do,” Magaly sighed. “I keep fighting because I want justice for my daughter, but there will never be justice. In Bolivia, no one will ever go to jail because of someone with HIV . . . I’m so tired of fighting.” In March 2014, Magaly decided to accept an offer of a conciliación, a process that involved two short out-­of-­court sessions about a week apart, with the goal of coming to an agreement on how to settle the case. On the date of the second session, I arrived punctually, which in Bolivian time translates as inappropriately early. A representative from the local ombudsman’s office who was serving as a moderator for the conciliación also arrived on time and began to ask me questions about what I thought of the case. As I expressed my concern over Magaly’s evidence of the cover-­ups involved, he proceeded to explain to me how justice



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works in Bolivia. He explained how the courts rarely function in your favor unless you have the resources to make sure everything is processed correctly and on time, and to a certain extent, justice is about who you know and who can grant you favors. Ideally, legal systems offer a potential route for contesting hierarchies and tensions between social groups (Comaroff 1994). The injustice experienced by Magaly, not only due to medical negligence but also due to the apparent cover­up involved in her case, suggests that the legal system merely reinforced social hierarchies as Magaly pursued her case, allowing the doctors and hospitals with symbolic capital to circumvent justice. However, as I began to learn more about Magaly, interview doctors and activists about her case, and watch her continued pursuit of justice, I discovered that Magaly had in some respects helped transform certain aspects of the medical system as it existed for people with HIV. Magaly upset the normal hierarchy in which patients, especially poor patients, accept the ways that individuals with a higher social status treat them within the health care system. No one in the Bolivian health care system expects patients to fight back—­when a death or other catastrophe happens, it is seen as part of a failing system in which blame is constantly shifted among actors. No one expected Magaly to fight back, but she did. While she did not find the justice she sought, she did contest the normalized mistreatment of people with HIV. Magaly’s legal claims reflect part of a global trend in using the judicial system to make claims to health rights and to allow the disadvantaged to seek relief in their struggles (Biehl 2015). Health rights have only recently come into play in Bolivia, with 2009 marking the year that the country constitutionally declared the right to health. More cases like Magaly’s may emerge, as individuals demand legal force and resources to uphold this constitutional right. However, the use of conciliación practices is worrisome. Historically, Bolivia’s formal justice system has only been accessible to a minority of the population, leaving those marginalized by class and racial hierarchies without state-­sponsored law enforcement and judicial recourse (Goldstein 2004). In line with recent judicial reforms aimed at promoting more widespread access to legal remedies, there has been a surge in the use of dispute mediation practices throughout Bolivia. However, such practices often remain ineffective at dealing with the social and economic inequalities underlying many cases (Ellison 2013). Cases such as Magaly’s that include pronounced inequalities between the parties involved raise concerns that the conciliación process limits the ability of the most marginalized to use the formal judicial system as a means for making their demands and spurring larger changes. Magaly only agreed to a conciliación because she was in a precarious position and felt that the judicial system favored the doctors and would never work to her benefit. Thus while the legal realm offers a means for seeking justice, access to this realm remains limited among those from subaltern classes.

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Processes such as the conciliación, which aim to give individuals an additional means of seeking legal remedy, can serve to reinforce the social hierarchies that contributed to the harm in the first place.

The Lasting Impacts of Magaly’s Case In my borrowed office space at CDVIR one day, I sat interviewing Mariana, another woman who had received her HIV diagnosis while pregnant. Like Magaly, she described the poor treatment she received while in labor at Percy Boland, saying that a nurse even refused her a blanket at one point. Unlike Magaly, she explained that her demands, and those of her husband, were taken seriously. She said, “They didn’t want to attend to me at Percy Boland. My husband had to threaten the doctor to attend to me, to give me the cesarean . . . He said, ‘I will call the press right now!’ After that, they took care of me. They said, ‘OK! OK! So that this doesn’t become a scandal, we will do the surgery.’ This was how I had my daughter. But if he [my husband] had not made the threat, my daughter would be dead.” The experience that Mariana described occurred just after Magaly filed charges of medical negligence. While Magaly ended her case saying, “There will never be justice!” her case did trigger changes within the health care system. Health care professionals took seriously the threats from Mariana’s husband. On a broader scale, when the Ministry of Health developed guidelines for the treatment and prevention of HIV/AIDS, the guidelines included the obligation of doctors to offer an HIV test to all pregnant women and the mandate that all public hospitals remain stocked with ARVs. Dr. Escalante, who became sympathetic to Magaly’s need to continue with her case, even though her charges were against him, at one point told Magaly: “Thanks to your fight, all pregnant women are offered an HIV test and hospitals have the medications in stock.” Magaly replied, “Yes, but it is thanks to your recklessness too.” Magaly’s case followed a messy trajectory, showing the complexity of defining accountability for the disregard of patients in resource-­poor settings. However, Magaly experienced a violation of the confidentiality of her HIV status, was denied care on multiple occasions when she attempted to schedule her cesarean, and was denied the medication that was readily available at a nearby clinic. In other instances, health care workers deny care to people with HIV, isolate patients in broom closets, and refuse to touch HIV-­positive patients, making patients feel worthless because of their HIV status. A struggling health care system cannot explain away many of these individual acts. Instead, it is necessary to understand the production of local hierarchies that perpetuate patient mistreatment. Decolonization, as a political agenda, seeks to undo these hierarchies. Yet as Magaly and others demonstrate, institutional agendas do not create immediate



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changes in the everyday reality of people’s lives. Internal decolonization must involve the re-­creation of everyday practices and the transformation of social hierarchies. Symbolic acts of expelling international donors do little to alleviate the systematic mistreatment experienced by people with HIV, especially when decolonization is an idea that the elite in Santa Cruz reject and often mock. The negligence that Magaly faced is the product of this colonized system and illuminates the limitations of and challenges to decolonizing the health care system. Magaly’s case also sheds light on how fault lines tied to gender, class, and race persist despite global health funding that seeks to provide resources for those most marginalized in society. In the following chapter, I further describe and interrogate the production of gendered fault lines of care.

4 • AIDING WOMEN

I sat next to Cassandra as her doctor rattled off the list of prescriptions she was writing: “A protein powder to help with weight gain, an intravenous drip with vitamin solution, fluco1 for the fungus in your throat, an antibiotic for the diarrhea, and the TEL.2 You need to have your stool sampled for parasites, but you can’t do that here. You will have to go to a lab to pay for it.” The doctor continued: “Your diarrhea hasn’t stopped because you are not eating well. You have to stop eating condiments and fried food. And wash everything.” “Yes, I do all that; she can tell you. I made her lunch last week,” Cassandra interjected, motioning toward me. As I began to support Cassandra’s claims, her doctor interrupted me to hurry us out of the office for the next patient. Cassandra and I headed upstairs to the pharmacy to fill her prescriptions. Upstairs, the pharmacist begrudgingly tossed the medications on the table in front of us. Although Cassandra never went to school and is illiterate, she received no explanation about which pills were which or when she should take them. The packaging for the ARV, TEL, had recently changed, so Cassandra asked the pharmacist, “Which one is the TEL?” He responded, “That one. If you have any questions about your pills, go downstairs and ask your doctor.” As I looked down at the pile, I noticed that there was no IV. When I asked about it, he said: “It is out. You can’t get it here. You can buy it at whatever pharmacy for 8 pesos.”3 As we left, I realized that the pharmacist also failed to give Cassandra the monthly supply of 20 condoms that all patients were supposed to receive when they refilled their medications. I had met Cassandra the week before at CDVIR. As I was leaving for the day, she approached me, saying that she recognized me from the group session she attended months before. She had been sitting in the waiting area for hours, told that she would be the last patient of the day, since she had come on the wrong day. She held a tattered appointment slip in her hand that indicated she was indeed scheduled on a different day. The problem was that she could not read the 68



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paper and could not ask a family member for help without too many questions. Remembering my introduction at the group session, she asked if we could talk more sometime. Wanting a more private space to speak, she invited me to her home, about an hour’s bus ride south of Santa Cruz. While she had the option of going to a clinic only a short bus ride from her home to pick up her medications, she preferred the anonymity in Santa Cruz. On my first visit to Cassandra’s house, we sat and talked for several hours as we prepared lunch for her children, who would be arriving home from school hungry. She told me about her childhood in Vallegrande, a small town in the fertile valley region that is about a five-­hour drive from Santa Cruz. Although she did not know her exact age, she thinks she was about eight years old when the CIA assisted Bolivian officials in tracking down and killing Che Guevara near Vallegrande, which would have made her about 54 years old when I met her. Perhaps it was true, or perhaps it was a result of the legends that still circulate in the area, but she recalls meeting Che, saying that her father had lent him horses. According to Cassandra, her family has a picture somewhere of her on a horse with Che. As Cassandra chopped onions and I peeled carrots for locro, a soup with rice and an assortment of chicken parts, she explained how no one in her family knew what she had. She invented a story that I was a volunteer with an NGO that was helping her buy her medications. No one ever questioned or asked me about this, even months later when I came over to prepare food for Cassandra’s family when she was too weak with chronic diarrhea to engage in her normal work around the house. While I fully respected Cassandra’s secret, I did express concern about her husband. “If he has it too, the medications can help keep him healthy,” I reminded her. Knowing that her husband was the primary source of income for their family, I asked, “If he gets too sick to work, what will happen to your family?” Cassandra feared telling him mainly because she knew without a doubt that she did not get HIV from her husband. While they had been together for years and she was always faithful to him, she decided to take an HIV test when she heard about the death of an ex-­boyfriend whom she had been with before meeting her husband. The rumor was that he had died of AIDS. Fear and anxiety consumed Cassandra as she thought about her husband’s potential reaction to the possibility that she had transmitted the virus to him. Given the stories of abuse and accusations that numerous women told me about following their disclosure of their HIV status to male partners, Cassandra expressed well-­grounded fears. Unsure of the correct response—­if a correct response even exists in such scenarios—­I suggested that Cassandra meet with a peer educator at Epua. She liked the idea, saying, “I know I need to tell him, but I don’t know how to explain everything so that he understands.” Upon Cassandra’s request, I met her

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at CDVIR the following week to accompany her to her appointment—­“in case I have any problems,” she said. It was only when I sat with her in the doctor’s office and accompanied her to the pharmacy that I understood what she meant by “problems.” Following the appointment, we rode the bus to Epua so that she would not get lost trying to find the building, which was hidden down a side street in a middle-­class neighborhood in a sector of the city with which Cassandra was not familiar. I left her with Juana, a peer educator. Juana’s own situation had been similar to Cassandra’s. When I first met Juana three years earlier while conducting preliminary fieldwork, she was working in the artisanal co-­op, barely scraping enough together to support herself and her daughter following her husband’s death. When she received her own diagnosis, she had known little about HIV or how she would have been at risk. Trying to prevent women from experiencing the confusion and despair she felt following her own diagnosis, Juana took gratification in counseling women like Cassandra, despite the fact that she was constantly overworked and sometimes the only peer educator at Epua, depending on their funding cycles. It was not until I sat with Cassandra in the doctor’s office that I realized how overwhelming the past several months must have been for her. Throughout her months of interactions with her doctor, psychologists, and the pharmacist, no one offered to link her to any other forms of support, even though such services existed. If HIV interventions prioritized women, as multiple global health bodies operating in Bolivia claimed, how could it be that a woman so clearly desiring and in need of additional support was falling through the cracks? And why was Juana one of only a few women in the entire city who was employed to work closely with such women in need? Cassandra’s story was not unique. I met dozens of women in similar situations, in need of additional support but not knowing where to go or who to ask to find this support. Within Bolivia, the HIV activist Violeta Ross constantly criticizes local and global responses to HIV/AIDS that she claims ignore women, only targeting pregnant women and mothers (Ross 2012). Examination of the allocation of Global Fund resources confirms Ross’s allegation that these programs are failing to reach women. Instead, women are only the targets of HIV interventions as sex workers, mothers, or when they already have HIV. For women with HIV, the services funded by the Global Fund are almost exclusively biomedical interventions. However, through a smaller amount of funding, none of which comes from the Global Fund, Epua is able to provide some women with more comprehensive forms of support, although these services are limited. The paradox between claims of prioritizing women and insufficient resources available to women brings up several questions. With limited HIV resources dedicated to women, what services do exist for women and on what grounds? Of the services that exist for women, how does a global health discourse of aiding



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women, as it intersects with local gender ideologies, shape the experiences of the women who engage in these programs? In exploring these questions, I interrogate the illness experiences of three women in relation to the categorization of women as targets of HIV interventions. I draw on the experiences of a former sex worker, a woman diagnosed with HIV while pregnant, and a woman who knew little about HIV until she tested positive for it. Each woman’s experience offers a critique of how the construction of target populations is often inadequate to capture the complexity of how gender inequalities factor into women’s lives, contribute to their risk for HIV, and shape their experiences living with the condition.

Of Vectors and Victims: Sex Work and the Double Bind of Women’s Sexuality I sat with Valeria in the back room of her apartment, located on the urban periphery a few blocks from a major transportation route to and from the city. Her partner, Paulino, made us a breakfast of boiled potatoes and hard-­boiled eggs as Valeria and I watched TV and talked about how her daughter was doing in school. Valeria was extremely proud that her daughter had postponed getting married and having children young, as many of her classmates had done, in order to study at the public university, with dreams of becoming a social worker. Once we began to eat, Valeria commented, motioning toward Paulino, “My sugar was high at my last [doctor’s] visit. He is very strict about what I can eat. No bread, no sweets.” Paulino had taken up most of the household duties when Valeria had fallen ill and had become so weak that she had to relearn how to walk. He merely grunted and smiled in response to Valeria’s complaints. Valeria and I took our time eating, while Paulino ate quickly and was off to his job as a construction worker. As Valeria and I continued with our breakfast and cleaning up the dishes, the morning news programs played in the background. From the back room of her rented apartment, which simultaneously functioned as a kitchen, living room, and bedroom, we could hear if anyone came by the storefront window she operated from the front room of her apartment. As we waited for customers to come ask for toilet paper or little sweets, Valeria began to tell me about her past relation­ship. She said, “I lived with the father of my two daughters for some 10 years. He drank a lot and went out with other women. He always treated me badly. I stayed with him. It wasn’t out of love—­I didn’t love him—­but I didn’t know what else to do. When my daughters were older, the oldest told me, ‘Mami, you should leave. You don’t have to live like this. You can find a new life.’” She went on to tell me about her eventual decision to leave her small town of Vallegrande, the same town Cassandra was from, for Santa Cruz. In Vallegrande,

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Valeria saw a newspaper ad seeking women to work in the city. She had never been to Santa Cruz before, but she took her daughters with her, responding to the ad when she arrived. Valeria spoke in vague terms about her work, using coded language, as do most women who engage in transactional sex when they speak about their work. Occasionally, she would interject with, “Me entiendes?” (Do you understand?) to gauge if I understood her references. Valeria continued the conversation by explaining where she worked. “I worked in various places around the fourth ring, between Paragua and Mutualista, where they have all the rockolas and clubs. Do you know that area?” Valeria asked. I did know the area, which is well known as a place where sex workers congregate to find customers. “I switch buses there when I go between my house and the Los Chacos neighborhood. How long did you work there?” I asked. “Until I got sick. Then I had to stop working,” Valeria explained, referring to the obligatory HIV testing that registered sex workers undergo every six months. In addition to regular HIV testing, sex workers must also comply with regular STD checks in order to keep their Sanitary ID card valid as a part of Bolivia’s efforts to register and regulate sex workers. In the event of a positive HIV test, a sex worker has his or her Sanitary ID card revoked and can no longer work legally. Many continue working in a clandestine manner, putting them at greater risk of abuse by law enforcement, and if they work in brothels, it is an excuse for brothel owners to pay them less. At that point, it dawned on me that Valeria had received her HIV diagnosis a few years earlier than she told me when I had first met her. Piecing together the sequence of events, I realized that Valeria had received her diagnosis just before she moved to the current room she was renting and opened her store with the money she had spent years saving. It was after moving that Valeria met Paulino, whom she had been with for two and a half years when I met them. According to Paulino, Valeria received her diagnosis only recently, after her health began to worsen. According to him, Valeria’s downward spiral started the previous year, beginning with chronic diarrhea and fatigue. When the diarrhea persisted, he urged her to seek medical care. By the time the positive test result came back, Valeria’s condition had deteriorated so much that she had to go to Comunidad Encuentro. She weighed less than 40 kilos (88 pounds) when she arrived. After I met Valeria at Comunidad Encuentro, she invited me to come visit her once she returned home. Throughout the first half of 2014, I would stop in to visit Valeria every couple of weeks. I witnessed her frustration as she slowly regained strength in her legs and could finally painfully walk back and forth to her store window when customers came by. On a day when Paulino was gone, Valeria confessed, “I was scared to take the test, in denial about what I had. I preferred to die than for anyone to know I had HIV. I was scared how my family would react, that they would reject me.”



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Valeria’s coded language for talking about sex work, her utter fear over what an HIV diagnosis would mean in terms of her familial relationships and her relationship with Paulino, and local laws regulating sex work are situated within a broader context of contradictions surrounding women’s status in society and how sexuality factors into that status. Amid the rapid sociopolitical changes taking place in Bolivia, the status of and expectations for women are changing, generating competing discourses about women’s roles, including their sexual and reproductive roles. A primary goal in the first years of the MAS government was to rewrite Bolivia’s constitution. Following a process that began in 2006, on January  25, 2009, Bolivian citizens voted in favor of a new constitution that included granting women more rights, protection, autonomy, and promises of greater political representation. Alliances between indigenous women who were a part of male-­ dominated indigenous movements and feminist organizations that had historically been dominated by urban middle-­class women were crucial in achieving these gains for women. These gains also opened up space for further strengthening the feminist movement (Rousseau 2011). However, a growing feminist movement does not imply immediate changes in the everyday lives of women. Reflecting gender inequalities, statistics regarding femicides, sexual violence, and domestic violence remain stark; a PAHO study (Bott et al. 2013) showed that 52.5 percent of women in Bolivia had experienced physical violence from an intimate partner, and 70  percent had experienced some form of physical, sexual, or emotional abuse. Despite recent laws that established gender quotas at all levels of government as a way to ensure the political involvement of women, women are still fighting a constant battle against gender inequalities in the political realm. For example, a 2014 senate candidate responded to a high-­profile rape/murder of a Santa Cruz socialite by saying, “We need to teach women how to conduct themselves to avoid femicides.” Further, the mayor of Santa Cruz has come under fire throughout his years in office for his continued verbal harassment and unwanted groping of women, including journalists who caught him on camera. Despite these actions and the negative publicity that followed, he easily won reelection in 2015. Coalitions of women from different backgrounds have been critical in generating legal and institutional changes aimed at improving the status of women. These coalitions, however, do not come without disagreements. This issue is clear when it comes to debates over the sexual and reproductive rights of women. Currently, abortion is illegal in Bolivia, except in cases of rape or incest or if the mother’s health is at risk. A primary point of contestation on abortion occurred during the process of writing the new constitution. This debate unfolded between the female leaders of indigenous movements and the leaders of radical feminist organizations who have historically been urban, white, and

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middle and upper class. Some radical feminist organizations, such as Colectivo Rebeldía in Santa Cruz, have made the decriminalization of abortion a fundamental part of their institutional goals. Indigenous-­led organizations that were a central element of MAS support and that remained critical in the rewriting of the constitution, however, were at times ambivalent and at other times rejected this step outright. At one point, MAS leaders even proposed including the protection of life beginning at conception within the constitution. To successfully achieve other gains for women, feminist organizations dropped attempts to decriminalize abortion through the constitution (Rousseau 2011). Women’s organizations that include a focus on HIV further complicate the debate over women’s sexual and reproductive rights, and international development agencies have played a role in funding multiple agendas related to women’s reproduction and sexuality. For example, the ONAEM (National Organization of Activists for the Emancipation of Women / Organización Nacional de Activistas por la Emancipación de la Mujer), which is an organization of sex workers, receives international funding4 to engage in HIV testing and prevention efforts among sex workers. Part of their mission has involved pushing for laws that guarantee labor rights as well as public health policies that promote the overall health of sex workers instead of policies that focus on sex workers as transmitters of STDs. Alternatively, the organization Levántate Mujer (Stand Up Women), the umbrella organization that supports Epua, receives its funding primarily through a Catholic organization. As an institution, Epua has decided to remain uninvolved in debates over abortion and sex work, although its members have been vocal in supporting other issues of reproductive rights, such as contraception. Despite this institutional stance, several employees of the organization expressed to me different opinions on these issues, demonstrating significant variation even within the same organization. These examples highlight that there is not a singular vision in terms of the sexual and reproductive rights of women. They also reflect a larger issue—­the contradictions and ambiguities tied to women’s sexuality and reproductive roles. Bolivian women are constantly bombarded with contradictory messages regarding their sexuality, generating tensions that they must navigate. The strong influence of Catholicism has perpetuated stereotypical portrayals of the ideal woman as a mujer abnegada, or a self-­sacrificing and pious woman who does not give into sexual temptation. Since the 1960s, increasing numbers of Bolivians have been converting to Evangelicalism (Gill 1993), which often appears preoccupied with the sinfulness of sex outside of marriage. These religious messages unfold within a society that frequently portrays women as sexual objects on television, in advertisements, and even in children’s toys (Canessa 2008). At the same time, a growing feminist movement has women’s sexual liberation as a part of its agenda. Complicating matters is the way that race factors into perceptions



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of a woman’s sexuality. As I discussed in chapter 2, whitening efforts have characterized racial dynamics in Bolivia. Such whitening efforts have included the ideology that white men have a racial duty to have sex with indigenous women as a mechanism for whitening the population. The perceived lack of power of indigenous women contributes to the perception that they are sexually accessible. Conversely, material culture portrays feminine beauty as white. Thus indigenous and white women are sexualized in different ways: indigenous women as sexually available and white women as objects of sexual desire (Canessa 2008). The obsession with beauty pageants in Santa Cruz highlights this contrast, as pageant participants are often white women wearing scanty replicas of indigenous dress (Gustafson 2006). Religious frameworks have contributed to a good woman / bad woman dichotomy that pervades social constructions of women throughout Latin America (Gaspar de  Alba 2014; Gregg 2003; Montoya 2002; Navarro 2002). This dichotomy emphasizes the importance of a woman’s virginity until marriage and eternal fidelity if she is to be regarded as a good woman. Gaspar de  Alba (2014) further elaborates on this, pointing to a tres Marias (three Marys) syndrome, where women are either virgins (good women), mothers (good women, but not virgins), or whores (bad women). Openly violating the expectations of a good woman is seen as shameful and something only a “bad woman” would do. However, women are constantly pushing the boundaries that frame this dichotomy, reinventing what it means to be a good woman and sometimes even embracing the bad woman category. For example, Jessica Gregg (2003) discusses the ways that women in a Brazilian shantytown created new definitions of virginity, allowing them to maintain an identity as a good woman. In Bolivia, sometimes it is unclear what constitutes a good woman. One teenage girl explained to me how teachers at her school regularly told the girls to “not provoke the boys” with flirtations or revealing clothing. She went on to complain how family members often heavily monitored her actions and whereabouts. However, she was simultaneously confronted in her everyday life with images from a beauty pageant culture that presented the ideal woman as a sexualized object (Canessa 2008; Gustafson 2006). Institutional transformations related to the status of women, a good woman / bad woman dichotomy that pervades the social imaginary, and contradictions over what constitutes a good woman create a set of complexities that women must navigate in making sense of their sexuality. The silence and coded language surrounding sex work are mechanisms that enable women to avoid the label and stigma of being a bad woman. If no one knows that a woman is or was a sex worker, she can avoid the stigma. Making sex workers a target population in HIV interventions is problematic in relation to the ways that women seek to avoid the stigma of a bad woman. As

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Veronica Pérez, a leader with the ONAEM, told me, “We have a double life. We leave our houses saying that we are going to work cleaning, washing clothes, as nannies. Not even our family knows what we do at work.” Further, sex work is at times a fluid line of employment—­a woman might engage in sex work occasionally for an additional source of income or when other work is hard to find. In such cases, women might not even identify as sex workers and are less likely to be subjected to (and have access to) the public health surveillance system that monitors the STD and HIV status of those who are registered. While Pérez believes in actively working to make sex work a legitimate line of employment, where labor laws protect women and allow them to work without constant harassment, she recognizes the source of protection that secrecy offers for women who engage in this work. Although she critiques public health initiatives that “see us only as a vagina,” she also sees public health initiatives as playing a central role in the health of sex workers. She commented, “The majority of workers want to be tested for HIV, once we explain to them the risks.” I accompanied Pérez and her team in the mobile HIV testing unit one night and observed this pattern as we circulated through several brothels, some of which were not in red-­light districts. The goal was to target the smaller, more informal brothels that typically see higher levels of unregistered sex workers who would be less likely to have regular HIV tests. When a sex worker does test positive for HIV, the social imaginary of the good woman / bad woman and how this intersects with global health discourse may play a role in that person’s reaction. As already indicated, the target populations of HIV testing programs—­pregnant women and sex workers—­feed into a good woman / bad woman dichotomy. A pregnant woman who tests positive can easily be perceived as a good woman, as an innocent victim of her male partner. For a sex worker, however, an HIV diagnosis might make visible her sexual transgressions. Of course, there are women whose experiences do not fit into this dichotomy, complicating how they make sense of their HIV diagnosis. Over the course of watching numerous telenovelas with Valeria in her store, she slowly and carefully began to reveal bits of her life history to me. These bits illustrated how the potential of being found out as a former sex worker magnified the gender inequalities that marked her life, contributing to her delay in seeking care and almost dying of AIDS. Caught in an abusive relationship, she sought whatever employment she could find to become self-­sufficient and able to start over in a new city. Sex work enabled her to save enough money to eventually start her own business and assist her daughters so that they could continue their education. Yet her line of work involved significant social risks and health risks. When she did test positive for HIV, she did not seek care, for what she perceived as the social risks of anyone knowing her HIV status outweighed the health risks for a condition that would not immediately cause a deterioration of her health.



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Despite the gender inequalities that framed Valeria’s life, because she had been a sex worker, she did not see herself as a victim. Although global health discourse often frames sex workers as victims of structural violence (Le Marcis 2014), in Bolivia, society continues to frame sex workers as potential vectors of infection. Valeria’s inability to identify with the victim label made it more difficult for her to disclose her HIV status to her family and Paulino. Instead, stigma and shame characterized her understanding of her infection and unfolding illness. These feelings ultimately shaped her decision to hide her HIV status from Paulino for years, a detail that put their lives together at risk. Valeria’s decision to keep her HIV status a secret from Paulino for more than two years is not atypical. Of the 70 individuals I interviewed, I cannot say with certainty how many had disclosed their status to long-­term partners. Early in my research, I often asked, “How did your partner react when you told them about your condition?” Women often responded to this question with silence. I eventually realized the question I should have been asking was, “Does your partner know about your condition?” I began to record examples of partner nondisclosure that came up in interviews and through my other interactions with patients. Of the cases I noted, 11 involved a woman not telling her long-­term male partner about her HIV status and only one involved a man not telling his long-­term female partner about his HIV status. Additionally, two women reported suspicions that their long-­term male partners knew of their diagnosis for an extended period before telling them. Doctors and peer educators commented on this trend. One female doctor said, “Women less often tell their partners because with the man, there is more concern that he will leave, but women have to suffer and forgive. It’s because of machismo.” The doctor’s assertion that women’s nondisclosure is “because of machismo” is problematic, and it oversimplifies the ways that society reproduces male domination. Even so, it is clear that gender inequalities shape women’s decisions surrounding disclosure. Women discussed legitimate fears of abuse and accusations resulting from disclosing their status, and the legitimate fear of a male partner’s response permeated women’s decisions. Many women reported that disclosing their status to a male partner caused or contributed to their separation. In one instance, a woman did not tell her partner because she was actively trying to escape an abusive relationship and feared for her life were she to tell him of her status. In some instances, women experienced blame and accusations. Other times, however, they experienced love and support following their disclosure. When Valeria’s health began to deteriorate, Paulino responded with support, taking over the cooking, cleaning, and household errands as she recovered. He became careful about cooking healthy food and monitoring her diet. However, her diagnosis did not come without a strain on their relationship, with Valeria saying that their relationship was “sometimes like a telenovela.” Although she

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maintained that Paulino was never abusive, she found herself frustrated with his opinionated nature and his apparent need to control her decisions for what he saw to be for the sake of her health. She reported that she often found herself staying quiet even when she disagreed to avoid fighting, wondering aloud, “What good is it to stay in a relationship when you are always fighting?” She attributed much of the tension in their relationship to her condition and her inability to work around the house and in her store. With this loss of independence came a reliance on her partner. Further, the framing of women with HIV as mothers and wives or whores, reinforced through both local gender ideologies and global health programs, shaped women’s access to resources for HIV. HIV interventions did reach Valeria when she was a sex worker, but only through testing. The focus on testing reflects the assumption that sex workers are potential transmitters of HIV to a larger population. This approach failed to offer Valeria the tools she needed to feel like she could confront her diagnosis, in part because such interventions failed to recognize the agency that women exert in their sexual lives. Society labels sex workers as bad women, yet women who have engaged in this line of work have actively found ways to avoid this label. For women like Valeria, caught in this double bind, secrecy is essential. Within the health care system, women are typically presumed innocent until evidence says otherwise. Women themselves make this assumption, with one woman saying, “When I found out, I blamed my husband right away. But then his test came back negative, and the blame changed.” By disclosing their HIV status, women risk divulging that they are not archetypal good women, and this often comes at a high social cost. Pregnant women in particular have been framed as innocent victims within global health discourse, yet as illustrated by Magaly’s experience, this framing is insufficient to provide pregnant women with the care they need. But what happens when this innocent victim label does not resonate with the experiences of pregnant women with HIV?

Pregnant Women as Perfect Victims? “I’m not a victim!” Magaly asserted to me on multiple occasions. Often, she said this as she reflected on her frustrations in her quest for justice for what happened to her daughter. This was the case one day as I sat with her in the sewing workshop that she had set up inside her house. The workshop included several sewing machines, decades old, hooked up to an overfilled extension cord. Piled up on tables were the stacks of clothing Magaly had sewn to take to a stall in the local market to sell. When business was slow in the local market, she would embark on a trip to the countryside, where she would sell her clothing in bulk to local vendors. While she was able to sell larger quantities like this, it involved a cut



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in her profits. When she became desperate for money, which often happened when her daughter had a medical emergency, she would sell the clothing without a profit, only making back the money she had invested so that funds were immediately available. Magaly had been showing me how she used fabric scraps to make anything from throw rugs to headbands so that she would never waste anything. She was sorting through a pile of fabric scraps when she came across a stack of photos. Several of the photographs were of her daughter during one of her many hospitalizations, revealing an emaciated toddler hooked up to an IV. In one photo, the child’s father had her small hand in the palm of his own, prompting Magaly to comment, “He always stayed in her life. He feels more like a brother to me now. He is with his wife, and they have kids, and I am with my partner, but we see him once or twice a year. I have had to ask him for help before. I don’t like it, and his wife does not like if he helps, but when it was really bad, I asked and he helped us.” Magaly continued: “It was when she was in the hospital, and I was sick too, that I started sewing. I started sewing in my hospital bed, working como una china (like a Chinese woman) to be able to have something. The medications, the doctor’s visits, taking a taxi from here in the middle of the night, like I did one night when she had a fever, it is all so expensive. But I am not a victim. I do what I have to do.” Despite Magaly’s insistence that she is not a victim, the civil society organizations involved in her case frequently framed her as a victim whom they helped to rescue by offering her legal services and employment training opportunities. Two organizations have featured her in promotional materials. One organization, in a pamphlet put together for its funders, refers to supporting Magaly, “a housewife, diagnosed with HIV while pregnant.” Another organization’s informational brochure highlights the stories of individuals whom they have helped and refers to Magaly as an example of the fact that most women with HIV in Bolivia are housewives, not sex workers. Both organizations have strategically framed Magaly stereotypically as a vulnerable woman, even though this framing does not resonate with Magaly’s own experiences. In particular, referring to Magaly as a housewife misrepresents that she has continuously been self-­employed, piecing together work in the informal economy as do the majority of Bolivians (Goldstein 2016).5 Yet civil society organizations continue to latch onto Magaly’s case as a way of generating support for their work. In this endeavor, the representation of the individuals that benefit from resources that potential donors will provide is essential, since this representation can help generate compassion. The initial involvement of civil society organizations in Magaly’s case involved strategic measures. As Magaly’s case unfolded when treatment was just

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becoming available on a large scale globally, civil society organizations saw an opportunity to use her to garner support for their cause in making HIV-­related resources more widely available. Throughout the history of the AIDS epidemic, the tales of innocent victims were most effective in challenging reigning policies. In the United States, the stories of hemophiliacs, who framed themselves as innocent victims of the epidemic, helped generate moral outrage over the lack of government investment in AIDS research during the early years of the epidemic. This change in perception translated into tangible resources. More than 25 years after the death of Ryan White, a hemophiliac boy who contracted HIV through a blood transfusion, the largest source of public funds for HIV care in the United States is available through the Ryan White Care Act. In drawing a distinction between the innocent and those blamed as responsible for the epidemic, the demands of the innocent have received attention and compassion (Kleinman 2000). In particular, images of mothers and children with HIV have been central in fueling the compassion for funding global HIV interventions, with resulting interventions deeming mothers and children as worthy recipients of resources. As such, using a clear case of injustice, particularly one that highlighted the vulnerability of innocent children, has been an effective legal tool for fighting to secure resources for people with HIV. For example, the Treatment Action Campaign in South Africa focused its earliest legal fights on securing access to medications to prevent mother-­to-­child transmission of HIV (Fassin 2015; Forbath et al. 2011). At first glance, Magaly appeared to be a perfect victim who could potentially generate the necessary compassion to win a tough legal battle. However, one fact disrupted the image of Magaly as the perfect victim. Following her HIV diagnosis when she was four months pregnant, her partner’s HIV test came back negative. Magaly herself had assumed that she had contracted HIV from him. Before her diagnosis, she knew little about HIV. All she knew was what she had seen on television. In 2005, when she received her diagnosis, the media was still portraying gays and sex workers as the risk groups for HIV (Wright 2006). She thought maybe her partner had been with a sex worker. When his test came back negative, Magaly was overwhelmed with guilt, confusion, and shame. Thinking that she would inevitably die a quick death, she told her partner to leave her, “so that he could have a normal life,” she explained. While he did end their relation­ship, he has maintained a limited presence in the lives of Magaly and their daughter. When Magaly was unable to uphold the image of the perfect victim, her ability to receive support for fighting her case hinged on her identity as the mother of an innocent child. However, this put her mothering capabilities under scrutiny. The former director of RedVihda told me, “Magaly doesn’t make it easy—­she’s not totally innocent,” and went on to list the various aspects of



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Magaly’s life that made it difficult for them to have a successful outcome with her case. This included questions about Magaly’s ability to be a mother, because she had left her daughter in the hospital for an extended period of time when the child’s condition progressed to AIDS. At the time, Magaly was also sick, was facing an economic crisis, and received only limited support from the child’s father. In light of these challenges, she felt like she could not care for her child at home. Magaly expressed extreme emotional pain when she described having to leave her daughter, going to visit her whenever possible, and in the meantime trying to earn enough to pay for her daughter’s medical needs. However, one activist described Magaly as “abandoning her daughter” because of this, using it as an excuse to explain why RedVihda had eventually dropped their legal support for the case. At one point, a child protection agency became involved and brought up the possibility of taking the child out of Magaly’s care, a suggestion that infuriated Magaly. Unable to fully enact the mother role as civil society organizations saw fit, she struggled to maintain their full support and even risked losing her child. In this sense, civil society organizations reinforced the social ideology that places a value on women based on their abilities to fulfill the roles of motherhood. Although Magaly felt like civil society organizations failed her and used her case to further their own institutional goals, she found it necessary to stay involved with them in order to pursue her case. Through this involvement, she has become a part of the Feminist Platform (La Plataforma Feminista) in Santa Cruz and a spokesperson on women’s rights issues. She frequently appears in media outlets, sharing her story with the public. She now refers to herself as a guerilla feminista (feminist fighter) who wants to continue fighting for women’s rights. While civil society organizations inadvertently reinforced gendered stereo­types through how they handled Magaly and her case, they also simultaneously helped Magaly put a new language to the gender-­based suffering she has experienced, transforming her into a feminist fighter. Magaly’s experiences point to broader issues that are at stake in making pregnant women a universal target population for HIV testing. Focusing on pregnant women does not come without complications. Magaly, as well as other women I met who received an HIV diagnosis while pregnant, reported knowing minimal information about HIV when they received their diagnosis. Pregnancy can be one of the most difficult times for a woman to receive such a diagnosis and can unleash an array of emotions. Several other women I interviewed who had received their HIV diagnosis while pregnant opted for a clandestine abortion because they thought their futures were inevitably doomed. Framing pregnant women as vulnerable subjects also implies that they are innocent victims if they do test positive for HIV. However, as Magaly highlights, women’s experiences often do not easily align with this victim imagery.

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Finally, focusing specifically on pregnant women means that information on HIV prevention inevitably fails to reach women before they begin engaging in sexual activity. The only time HIV interventions reach women on a large scale, not just as sex workers or pregnant women, is when they have tested positive for HIV. At this point, public discourse and the media have largely contributed to what women know and do not know about HIV. Thus the larger social imaginary surrounding HIV plays a significant role in how a woman subjectively experiences her diagnosis and her subsequent interactions within the health care system.

The Epidemiology of Victimhood and Internalization of Discourses of Innocence I sat in a white plastic chair facing Belén in a corner room at CDVIR that was used for holding support groups and other meetings. Although Belén appeared frail and tired, she had clearly put effort into her appearance before coming to meet me. Her hair was neatly styled and makeup meticulously applied. The gold necklaces that hung from her neck and her stylish clothing suggested a comfortable economic situation, which was rare among the patients that I met. Belén sat across from me on a lumpy, worn-­out black couch. Mariana, a psychologist at CDVIR, had helped coordinate my meeting with Belén, telling me, “There is a woman who wants to talk to you. She abandoned treatment a few years ago—­well, three times she has abandoned treatment—­but she is back again. Maybe you can reinforce the importance of adherence?” After I introduced myself to Belén, she asked, “Can we turn the air conditioner off? The cold air isn’t good for me right now.” It was a sweltering summer day, already humid and in the 90s by midmorning, and the newspapers predicted a week of calor insoportable (unbearable heat). However, in a context where air-­ conditioning is a luxury, many people view that luxury as bad for ailments. I obliged Belén’s request, walking over to the window air-­conditioning unit and switching it off. After I returned to my plastic chair, Belén began: I wanted to kill myself at first. I almost died. I weighed 43 kilos [95 pounds] and could not get out of bed. Before, I weighed 75 kilos [165 pounds] . . . I couldn’t suffer the loneliness and the shame of waking up and being scared of what was going to happen to me . . . My husband, his test came back negative; he has been very worried. He hired a nurse to take care of me at home. A doctor, who has her office on Avenida Alemana [a road that runs through an upper-­middle-­class part of the city], she would get my medications for me and bring them to me. I’m starting to gain weight, I want to live, but my life has totally changed.



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Belén went on to tell me about what her life was like before her diagnosis: “I liked to work. I was successful. When I left my job, I felt worthless . . . I was a very social person. Now I don’t want to see anyone. I don’t have the energy like before.” As Belén continued her narrative, self-­blame and references to wanting to die filled her story. “It took away my desire to live. I didn’t want to live. I wanted to kill myself. Day and night, I suffered because I could not accept that I had this terrible disease,” she said at one point. The fact that her husband had tested negative struck me as potentially significant in how Belén had internalized her own diagnosis. Wanting to ask her more about this, but worried that she would take the question as an accusation, I finally asked, “You mentioned that your husband is negative?” “Yes,” Belén responded. “Let me tell you what happened.” She paused for a moment to take a sip from the juice I had brought for her and continued: My husband and I were separated. I felt so deceived. I began going out a lot drinking. I drank a lot. I met a young guy who I had known for years before. A young, blond, blue-­eyed man. It never crossed my mind that he had this disease. I went out with him, but we were never together until we got really drunk, then we were together. What had to happen, happened. A while after, I saw him. He was so skinny . . . But then I stopped seeing him because my husband wanted to come back. So I didn’t want anything with the younger guy anymore, but then I heard a rumor that he was sick with AIDS. And he called me on the phone to tell me, “I have AIDS.” At that moment, I went and took the test and it came back positive  .  .  . Returning to my husband and telling him, that was another pain, more suffering. This is how I got it, from one time, and it ruined my life, and the young guy died.

Belén explained that before her and her husband separated, “there was a lot of deception on his part.” When they separated, Belén was heartbroken. She coped by trying to have a good time by going to parties and hanging out with a younger, attractive man, not thinking that HIV would ever be the result. When her husband wanted to get back together with her, Belén says, “He asked for my forgiveness, saying he was a changed man.” Not knowing that she had HIV, Belén decided to forgive her husband. When Belén received her diagnosis and told him everything, she found acceptance. She said, “My husband is very loving now. He didn’t blame me. He loves me. He is at my side . . . My relationship is much better. My husband changed a lot . . . When he found out, he wanted us to get married again.” The shame and guilt that Belén felt in relation to her diagnosis contributed to her desire to die and her falling out of care multiple times. While clearly many

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factors shaped her emotions in relation to having HIV, gender ideologies played a particular role in her subjective experience of her condition. Both local gender ideologies and global health bodies reinforce the assumption that men bring HIV into a relationship. When that is not the case, a woman’s feelings of guilt and blame may intensify. Belén clearly did not see herself as a victim. Instead, she felt as though she only had herself to blame for what happened to her. Several men also expressed extreme levels of self-­blame upon discovering that they had contracted HIV and exposed their long-­term female partners to the virus. One man, Raúl, began sobbing as he explained to me his past infidelities that led to his HIV infection: “[My wife] has suffered so much because of me. She is a good woman and forgave me for everything, but she suffered so much. I thank God that I did not transmit it to her.” While self-­blame characterizes the experiences of many men and women, this blame unfolds in gendered ways. There is an expectation that men are to blame, and with this, there is an expectation that women will forgive men for their shortcomings. Women, on the other hand, do not expect forgiveness from men, although some women, like Belén, do receive forgiveness. Although Belén blamed herself for what happened and for exposing her husband to HIV, his tests had come back negative, and he was understanding of the fact that she had engaged in another relationship while they were separated. However, I met many women whose HIV diagnosis effectively ended their long-­term relationships. Belén’s experience of not feeling like a victim is not an isolated case. Of the 34 women I interviewed, only 9 felt certain that they had contracted HIV from a long-­term male partner with whom they were in a relationship at the time of their diagnosis. In other words, the experiences of roughly only a quarter of the women fell in line with the stereotypical portrayal of women as passive subjects, victims of men’s actions. The experiences of the other women were much more complex. Veronica, for example, said that she and her boyfriend had decided to get tested when a health fair came to their university. “I was in total shock when I got my diagnosis. Total shock. His test came back negative, and I had only been with one other person before I met him. Never in my life did I imagine that I would have this,” she explained. Veronica and her boyfriend remained together for several years, “but eventually this made things too complicated. He never contracted it, but it contributed to problems.” Further, many women expressed ambiguity and uncertainty in relation to their diagnosis. Eugenia, for example, explained that she had tested positive while pregnant, and following her diagnosis, her partner tested positive as well: “We have only been together for two years. I was with others before him, and the same for him. It could have been either one of us who gave it to the other.” Epidemiological research highlights similar trends in other contexts. For example, a meta-­analysis of more than 13,000 serodiscordant couples in



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sub-­Saharan Africa found that among these couples, women were equally as likely as men to be the partner with HIV. Despite this finding, perceptions persist within global health agencies that men are the source of HIV infection within relationships (Eyawo et al. 2010). Thus the “innocent victim” discourse that permeates global and local portrayals of women and HIV is not representative of the dominant trend I found or trends that researchers have noted in other contexts. According to Fassin (2011), when contradictory assumptions surrounding women’s sexuality in relation to HIV exist, this creates an innocent victim and stigmatized/promiscuous woman dichotomy. When women do not identify with the “innocent victim” category, this can increase the degree of stigma they feel in relation to having HIV. Belén’s narrative also exposes the dangers of assuming that women lack agency in regard to their sexuality. Assumptions that women are “pure and virginal” outside of marriage, as stated in a WHO document on gender and HIV (WHO 2009, 3), contribute to a lack of discussion in the global health arena of how to more effectively reach women with prevention efforts. Because Belén was not part of a risk group or the target of testing initiatives as a pregnant woman, HIV prevention messages never reached her. Belén reported that prior to her diagnosis, she knew little about the risks, although she now blames herself for this. “Because of my naivety, I didn’t know to protect myself. But I didn’t think . . . ,” she said, trailing off at the end. Most of the women I met did not feel strong social pressures to remain virgins or save themselves for future husbands. To portray women as passive and vulnerable in their sexual relationships, as is often done in the global health realm, is to ignore the complexity of women’s lives and the ways that women exert agency despite the gender inequalities that mark their lives. The women I met actively made decisions in relation to their sexual relationships, even if significant inequalities sometimes framed these decisions, leading to transactional sex, survival sex, and violent relationships. When global health agencies develop HIV interventions with the assumption that women lack control over their sexuality, the result is that women are less often given the information and resources they need. This problematic framing of women can have life and death consequences. Following our conversation, Belén and I walked together to the intersection where we would get on our respective buses to head home. Before we parted, she gave me her phone number, hoping that we could meet again. “It helped me to talk about this,” she said. “Maybe next time you can come to my house.” The following week, I responded to her request. When I called her cell phone, her husband picked up. Belén had evidently told him about me, and he explained that Belén had fallen ill again and was in the hospital. She had been in a slow state of recovery, but having fallen out of care for so long, her immune system was weak.

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Reframing Women’s Risk More than two decades ago, Ruth Behar (1993, 272) made a plea for feminist anthropologists “to go beyond first world representations of third world women as passive, subservient, and lacking in creativity . . . to listen well to the stories that other women have to tell.” Listening to the stories of the women in this chapter shows the complexity of women’s lives. Magaly, the self-­identified feminist guerilla, is anything but passive. Valeria felt pressure to aguantar, to suffer, with her past partner, but her daughter influenced her decision to start a new life in the city. Even if gender inequalities continued to mark her new life, she found ways to become economically independent and build a life for herself. Belén took an active role in making decisions about her sexual relation­ ships. These women’s lives stand in contradiction to both local and global health representations of women as passive subjects. Yet simplistic representations of women persist. In Santa Cruz, although competing discourses present dramatically different possibilities and expectations for women, there is a common theme of low expectations of men. This is especially the case in relation to the expected infidelity of men and women’s vulnerability to HIV because of men’s actions, giving power to both global health and local narratives of women’s passivity. The portrayal of women as victims is appealing and to some extent makes sense in a context of extreme gender inequality, where women routinely experience gender-­based violence and other gendered forms of suffering. Actions and discourses at the local level reinforce stereotypical portrayals of women in global health interventions. In local policy development, civil society representatives and public health officials often referenced stereotypical images of men and women in the development of local HIV plans of action. According to Global Fund guidelines, the participation of key populations, including women, is an essential part of the CCM. Yet when women demand more resources for programs aimed at women, such programs are removed from the budget. At the same time, as a result of the mandate for participation of key populations, there is significant representation from LGBT and feminist organizations. Within these organizations, a primary goal is to contest the patriarchal ideologies and gender inequalities that subjugate women and individuals who identify as LGBT. To these groups, stories of innocent victims are attractive because these stories most clearly demonstrate the harms of patriarchy and gender inequalities. Public health officials are not necessarily motivated to fight patriarchy, and many officials have benefited from this system, as older white men fill the public health offices in Santa Cruz. However, these individuals latch onto innocent victim stories as well, responding paternalistically with a focus on programs that target women as mothers and keepers of the home.



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In some ways, framing women as victims has brought necessary attention to women, who for too long were neglected in responses to HIV/AIDS. However, neglecting to engage with the realities and complexities of women’s sexual lives is failing women. Yes, women are victims of rape, intimate partner violence, and other inequalities that make them vulnerable to HIV. However, these vulnerabilities often unfold in complex ways. Further, women also make active decisions about their sexual relationships. Without recognizing this agency, it is impossible to provide women with adequate resources to prevent HIV and stay healthy with the disease. In rethinking possibilities for more effectively reaching women, expanding testing and prevention initiatives for women beyond pregnant women and sex workers is particularly important. The current approach to testing reinforces stereotypical assumptions of women’s sexuality that frame women as valuable for their reproductive capabilities or as promiscuous and potential vectors of infection. In some regards, testing women during pregnancy makes sense beyond the goal of preventing mother-­to-­child transmission. In Bolivia, a large segment of the population lacks consistent access to health care services. With social insurance programs that provide pregnant women with health care coverage, pregnancy is often one of the only times when a woman has access to health services. However, targeting women during pregnancy inevitably produces dilemmas for women who do test positive. To address such problems, the CCM has proposed expanding testing and prevention efforts among women, but the Global Fund has removed such initiatives from proposed budgets and has not provided financing for them (Global Fund 2012, 10). As Cassandra’s experiences in particular highlight, peer educators can potentially play a transformational role in helping women live healthy lives with HIV. Aside from counseling Cassandra on how to speak with her husband about her diagnosis, Epua’s peer educator also spent hours with Cassandra, teaching her how to identify her different medications based on the colors of the packaging and size of the pills. These sessions also provided Cassandra with a sense of social support that she had been missing. While Cassandra’s experiences suggest a need for expanding peer educator programs, these programs are time intensive and fail to reach a large number of individuals, leading some funders to view them as an inefficient use of funds. As such, Epua’s peer educator program experienced substantial cuts to its funding during my time in Bolivia. Another gap between global health goals and the realities of the local context illuminated through ethnography relates to the issue of silence. As Cassandra’s and Valeria’s experiences demonstrated, secrecy surrounding their HIV status became one tool that women used to navigate the gender inequalities that marked their lives. In the following chapter, I attend to the role of secrecy and how the silence that upholds secrecy is at odds with global health imperatives that promote breaking the silence.

5 • SYNERGISTIC SILENCES

Although it was my third visit to Cassandra’s home, I had trouble remembering the route between the bus stop and her house. I found myself at the dead end of a dirt road lined with modest, brightly painted cement homes. Many of the homes had small yards with some combination of livestock, mostly chickens, that people raised for food or to sell. Cassandra’s home was at a dead end, but not this one. I should have paid better attention last time, I thought to myself. I considered stopping at a venta, a small storefront out of someone’s home, to ask for directions, but doing so would have been unlikely to help in a neighborhood where streets have no names and people navigate their daily travels based on landmarks as opposed to clearly marked streets with numbered houses. I also thought about calling Cassandra, but from our phone conversation the night before, I knew she was weak. The very purpose of my visit was to come help her do chores around the house. I did not want her to feel obligated to come find me. Instead, I retraced my steps. With my bag of groceries, I walked back to the faded green Herbalife sign where I had gotten off the bus from the hour-­long crowded trip from Santa Cruz. In returning to the Herbalife sign, I realized where I had made my earlier mistake by turning left a block too soon. After making a left at the correct intersection, I walked one more block before turning at a venta with “Crush” painted in bright orange on the front of the house, advertising the orange soda. I then continued uphill to the end of the road, grateful to finally see Cassandra’s yellow cement house ahead of me. Cassandra’s home was part of a larger compound the landlord had divided into two rental properties. There was an open entryway area dividing the two sides, with a tall fence connecting the sides of the two buildings and separating the entryway from the road. A tin roof offered a comfortable shaded area and connected the two units, creating a shared outdoor living space. 88



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Cassandra was sitting on a wooden bench in the entryway, wrapped in a blanket and drinking a cup of Nescafé instant coffee. She got up to greet me with a smile and a kiss on the cheek. I glanced at the neighbor’s side, grateful to see that it was empty so that Cassandra and I could speak more freely, without worry over who might hear us. “I’m feeling better today, but I’m very weak,” Cassandra said. I was relieved to see her looking better than I had anticipated, given our telephone conversation the night before. She insisted that I sit down in the plastic chair next to her and join her in drinking a cup of Nescafé. As we drank the instant coffee, we began to catch up on the events of the past several weeks, since the last time I had seen her. At one point she said, “It’s been very difficult that my family doesn’t know. My daughter, the one who lives in Switzerland, she called me last week asking for help, but I couldn’t help her. She has four children with her husband—­he is Swiss—­and she is working and going back to school. She asked me if the kids could come live with me for a year, but I told her no.” Cassandra paused for a minute before continuing: “I can’t even take care of myself right now. How can I take care of the kids? She doesn’t know why though. That’s what pains me.” I thought about Cassandra’s statement for a moment. In certain respects, she wanted some members of her family to know about her condition so she would no longer have the stress of hiding a secret from them. However, she feared the consequences that might come with the relief of disclosure. What if family members failed to understand her condition and rejected her? What if her husband decided to leave her? Even if these extreme fears did not become reality, she was worried about the potential gossip and about putting additional stress on her family. Knowing that Cassandra was close to one of her sisters, I asked, “What about your sister?” “My sister, the one who came yesterday to make lunch, I have thought of telling her. Out of all of my brothers and sisters, she is the only one I would tell. She has always helped me, and right now she is worried,” Cassandra explained. “It is my husband I need to tell. He knows I am taking medicine, but I told him that it is for anemia, that anemia is the reason I have no energy. I hide the TEL in the drawer under the television in our bedroom so he cannot see what it is . . . The other day he told me to stop taking the pills because it was making my breath smell bad.”1 I listened, uncertain of what words of support I could offer. As I took another sip of Nescafé, Cassandra confessed, “The other day, he asked me if this is what I have. He has a friend who died of this, so he knows the symptoms. He asked me, ‘Is it AIDS?’ I couldn’t get it out. I told him I was waiting for results from my last appointment. I don’t know why I couldn’t tell him . . . He is a good man, and he wouldn’t hurt me, but I worry that I won’t explain it well and he won’t

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understand. I don’t know if he would go to the doctor. He will not go to the doctor for anything.” Feeling conflicted over the ethical dilemma presented by Cassandra’s secret, I suggested that she meet with the peer educator at Epua again for advice. I could tell she was tiring of the conversation, so I changed the subject. “What do you want to eat?” I asked, offering to start making lunch. “Do you know how to make salpicón? I don’t know why, but I am craving salpicón.” “Of course,” I said, grateful that I had learned to make the chicken salad years ago from my Bolivian mother-­in-­law. Cassandra moved her chair to the kitchen to keep me company as I boiled chicken and potatoes, peeled the shells off hardboiled eggs, and chopped carrots and green beans. Just as I had finished shredding the chicken and mixing it with the vegetables and a heavy dose of mayonnaise and mustard, Cassandra’s two sons arrived home from school. Behind them was Cassandra’s sister, who was stopping in to check on her. The three of them gave me curious glances as we ate, asking me questions about life in the United States but remaining silent about my reasons for being in Bolivia. Cassandra had maintained the story that I was a volunteer with a local NGO that was helping her purchase her medications. Her explanation was met with silence. As an anthropologist with an ethical imperative to maintain Cassandra’s confidentiality, I also remained silent. On the bus ride on my way home that day, I continued to think about the reverberations of silence. There was Cassandra’s silence as she attempted to keep her HIV diagnosis a secret, and there was also the silence of her family— ­suspicious that Cassandra was hiding something but responding to her silence with another layer of silence. It was not just Cassandra’s silence that had perplexed me. During my research, I encountered other attempts to keep a secret that forced me to think about the pervasiveness of silence among people with HIV. Like Cassandra, there was also Isabel, who knew of her HIV status for years without telling her long-­term partner whom she had met after she tested positive. Isabel’s partner found out about her HIV status when they both ended up hospitalized at Comunidad Encuentro at the same time. Isabel had arrived first, telling me that she became ill after she stopped taking her ARVs during a bout of depression following the death of her sister. Her partner arrived weeks later after he had fallen ill with tuberculosis and tested positive for HIV. In a distinctly different enactment of silence, there was Álvaro, who worked for an LGBT activist organization. His decision to work for this organization came after his HIV diagnosis motivated him to become involved in HIV prevention efforts as a peer educator. When I first met Álvaro, I assumed he was openly gay, as he told me about dressing in drag and marching in Santa Cruz’s gay pride celebration. However, Álvaro confessed to having two Facebook pages.



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On one page, his profile picture is of him dressed in drag; he limits his friend requests to those he knows from his work as an activist. On his other Facebook page, he maintains a heteronormative appearance and posts pictures of himself with girls, “for my family and all the friends of the family,” he explained. He says that no one in his family knows he is gay, not even his mother. He went on to explain that maybe people suspect, but no one really knows. In a similar attempt to keep secrets, Pablo engaged in various strategies to hide his sexual escapades with other men. Having spent his life in destitute poverty, first in a Guaraní village and then on the urban periphery, the twenty-­year-­old enjoyed the economic perks that resulted from his relationships with wealthier men and foreign men whom he met at gay bars. He tested positive for HIV after one of his steady partners whom he had met at a club died from AIDS. While Pablo described to me the affectionate ties he felt for this man, he never used the words gay or bisexual to describe his identity and maintained steady relationships with women. After leaving the field, Pablo communicated to me through social media that his girlfriend was pregnant. According to Pablo, the mother of his child knew about his HIV status. He told her he had contracted it from a sex worker, as he had told me when we first met. He only recounted the details of his sexual escapades after he found me reading a book titled Diverse Sexualities and Genders in Indigenous Villages in the Bolivian Orient as I waited for him on a park bench one afternoon. Amid these different enactments of silence, two themes emerge. First, there are silences in relation to women’s sexuality. An HIV diagnosis can give away too much information about a woman’s sexual history, especially if she is certain she has contracted HIV from someone who was not a long-­term partner at the time of her diagnosis. A woman’s need to maintain silence surrounding her sexuality can manifest itself in nondisclosure of her HIV status (Rhine 2016). It would be far too simplistic to say that speaking openly about sex is taboo for Bolivian women. Instead, there are realms where women openly discuss and even joke about their sexuality; in other realms, silence is pervasive. Contrasting this silence are global health goals emphasizing the imperative of HIV disclosure in the name of ARV adherence and the prevention of transmission to unborn children and intimate partners (Davis and Manderson 2014). For example, the WHO (2016b) has guidelines on promoting partner disclosure. These guidelines rest on the assumption that disclosure will result in the partner taking an HIV test and entering care if the test is positive. They also highlight the potential benefits of partner support, which can improve ARV adherence. Bolivia’s HIV Law reiterates these goals of disclosure, making people with HIV legally obligated to disclose their HIV status to sexual partners. Second, there are silences surrounding male same-­sex relations. This is not to say that there is silence surrounding all male same-­sex encounters, but rather there is silence regarding some expressions of male same-­sex relations

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under certain circumstances. Here it is important to distinguish among sexual desire, behavior, and identity; same-­sex relations do not imply that one has a gay or bisexual identity. In Bolivia, as in other contexts in Latin America, homosexuality is often defined in terms of who is dominated in a sexual encounter, with the passive man being seen as a maricón and akin to a woman. The man in the dominant role does not necessarily see himself as gay, and in fact, in such sexual encounters, the expression of dominance can serve to reinforce a man’s masculinity. This model for understanding male same-­sex encounters also serves to stigmatize the passive male while not threatening the heteronormative masculinity of the dominant male (Carrillo 2002; Lancaster 1992; Parker 1999; Wright 2000). Not all male same-­sex sexual encounters follow this simple rule. For example, some men engage in same-­sex relations in part for the economic benefits that these relationships can result in, and sexual desires play a varying role in an individual’s decision to engage in sexual relationships. In such instances, it is possible that neither man identifies as gay or bisexual. Pablo, for example, enjoyed having sex with wealthier men and developed affective ties with some of them, but being gay or bisexual was not a part of his identity. Further, it was only sometimes a part of the identity of his male partners. Even if a man does take on a gay or bisexual identity, this identity may be contextual. In other words, he may identify as gay around a subgroup of other gay men yet present a heteronormative identity in other realms of life, as in Álvaro’s case. Under these contextual expressions of sexuality and sexual identity, silence plays an important role. This silence conflicts with a globalizing LGBT rights movement that assumes that queer subjects have a self-­awareness of their identity and merely need to be liberated in order to become modern queers (Blackwood 2008). While women’s sexuality and male same-­sex relationships produce silence in distinct ways, there are parallels in the enactment of these silences as they relate to global health interventions. Global health imperatives that promote disclosure of one’s HIV status and “coming out” in line with a Western model of LGBT rights misrecognize the social significance of silence and the creative ways that individuals use silence to navigate tensions within their lives. In this context, local enactments of silence stand in contrast to global health campaigns that view secrecy as a socially harmful act that perpetuates the stigma and discrimination that have driven the HIV epidemic (Hardon and Posel 2012). For people with HIV, the gap between local enactments of silence and global health efforts of breaking the silence can generate new fault lines that shape care-­seeking patterns.



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The Significance of Silence Keith Basso’s (1970) work on Apache silence points to how silence can be a powerful form of communication, especially when uncertainty and unpredictability mark social relationships. What then, does silence communicate? Poet Adrienne Rich (1978) says of silence, “Silence can be a plan rigorously executed . . . Do not confuse it with any kind of absence.” Silence can be a strategic, empowering, defiant, and potent act (Glenn 2004) that serves as an act of resistance (Simmel 1906). Conversely, silence can also reflect the process of silencing by a dominant group, generating a lack of power to communicate among the silenced (Clair 1998). It is important to consider this tension between structure and agency in the production of silence. While individuals may exert agency by not disclosing their HIV status or sexual behavior, they enact this silence in relation to existing power hierarchies that stigmatize certain forms of sexual behavior. It is also important to examine the relationship between silence and secrets. Jennifer Hirsch and colleagues’ groundbreaking book The Secret (2010) provides a cross-­cultural examination of marital infidelity, with infidelity being “the secret.” However, a secret does not imply that something is unknown; rather, there might be a shared understanding of what is known, unknown, and unspeakable. Men’s infidelity is widely known but unspeakable within intimate relationships. When one speaks of infidelity, it can destroy a relationship. Silence serves as a protective measure that upholds the secret and maintains stability within relationships. Hirsch and colleagues’ analysis focuses on what Michael Taussig (1999) calls the public secret, or what is generally known but not spoken about. Across cultures, there are assumptions that men will engage in extramarital sex, even if individuals deny that infidelity will or did occur within an intimate relationship. The very assumption that men will be unfaithful reflects the relative lack of stigma tied to male infidelity across various cultural contexts. This brings up the role of the secret in relation to more stigmatized sexual behaviors, primarily when women have sex outside of long-­term relationships and in male same-­sex encounters. In such circumstances, individuals may have more on the line if their secrets are revealed, making silence more important. The contextual nature of silence is particularly relevant. In other words, the same issues may involve silence in some contexts and not others, creating partial secrets (Squire 2015). This was the case for Álvaro, who remained silent about his LGBT activism around his family but also admitted that his actions had probably led family members to have suspicions about his secret life. Cassandra’s illness also became a partial secret in her household, as her husband came to suspect that she had HIV through her visible symptoms; Cassandra’s silence prevented the full revelation of her secret.

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Silence can manifest itself in different ways, serve different purposes, and involve various degrees of agency. Further, silence can serve to maintain a secret, even if it is a public secret. In understanding the production of silence in relation to HIV, several aspects of silence are particularly significant—­the use of silence as a form of stigma management, silence as a means of navigating social inequalities, and silence as a source of protection from harm. Silence, in the form of nondisclosure of one’s HIV status or of hiding male same-­sex relations, serves as a tool of stigma management by hiding a stigmatized condition or behavior. Such techniques for stigma management alleviate short-­term risks, such as social rejection and emotional distress, yet come with long-­term health risks for an individual and his or her sexual partners (Padilla et al. 2008). Silence also enables individuals to navigate the social inequalities that can exacerbate stigma. Social norms create expectations for men and women in relation to their sexual behavior, with inequalities embedded in these norms. While deviations from norms may be a public secret, evidence of this deviation, such as an HIV diagnosis, comes with significant social risk, especially for those who are in a subordinate position in society. This can make silence a source of protection. Cassandra’s silence shielded her from possible rejection from her husband and other family members, but it hindered her from finding the social support she needed and put her husband’s health at risk. To further explore the role of silence and the secrets upheld by silence in the lives of people with HIV, I turn my attention to Carlos. Carlos is an HIV-­positive gay man who had been with the same male partner for seven years when I first met him. Carlos was also married to a woman and had a young child with his wife. While both Carlos’s male partner and wife knew about each other, silence provided an essential source of social protection for him as he navigated his familial relationships.

Carlos’s Double Life I stepped off bus line 73 in a middle-­class neighborhood near the city center. Tall cement walls were interrupted only by the main entrance gates to homes and blocked the curious gazes of passersby from viewing the relatively privileged lives of the city’s small middle class. To make sure that Carlos knew that I would be knocking on his door shortly, I pulled out my phone to call him. “I’m on my way. There is so much traffic! But René is there; it is his house, and he knows you are coming,” Carlos shouted into the phone. I proceeded down the street, looking for the house with a green gate, one block from the corner. I was feeling a bit nervous, not sure of what to expect during this encounter, wondering what questions might be too inappropriate. I had met Carlos about a month earlier, when I was observing a group session at CDVIR. After the



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session, he approached me, saying he would be interested in speaking with me. “We can meet at my partner’s house. I want him to talk to you too,” he offered, and we scheduled a time to meet the following week. However, on the day of our scheduled meeting, Carlos’s father was in a car accident, and he had to cancel. A few days later, I saw Carlos in the waiting room at CDVIR. We rescheduled the meeting, and as we continued chatting, he mentioned, “Thankfully my wife and son’s tests came back negative.” I must have shown my confusion because Carlos quickly interjected, “My life is complicated, but we will talk about that.” “Come in, come in! What a pleasure to meet you!” René said, meeting me at the gate to his house. René was tall, about six feet five, and on the thin side. His fairer complexion and medium-­brown hair color made apparent his European ancestry. “Carlos is on his way,” René explained as he led me into the open courtyard that formed the central living space during good weather. Surrounding the courtyard were rooms that opened up to the courtyard. We walked toward the room closest to the gate, into the kitchen. After I sat down at the red metal table, René cut me a piece of slightly stale orange-­flavored cake, demanding that I eat. As he poured me a glass of guaraná-­ flavored Simba soda, a woman entered the kitchen. Her tall stature and hair color that resembled René’s suggested that she was a relative. “My sister, Aracely,” René said as Aracely and I greeted each other. As I began to converse with Aracely, she explained that she was a nurse in one of the few clinics in a small town about a 90-­minute bus ride from Santa Cruz. “I come visit my brother at least once a week. With his sickness,2 I worry about him. Because of my job, I understand this sickness, and I try to help, but not all families are so accepting,” Aracely explained. “In my job, I have to come here to pick up medications at CDVIR. We have six patients with HIV, and I bring the medications from here to our clinic . . . They are all very poor, and they have problems coming to pick up the medications themselves.” I was relieved to find out that Aracely knew about René’s HIV status, preventing me from having to fabricate an excuse for my visit. Curious about my research, Aracely began asking lots of questions, at one point saying, “I hope you can talk to René. He is having trouble with the medications, with the side effects, and I am scared he will abandon treatment.”3 As Aracely and I continued chatting as René watched us, occasionally interjecting with a comment, Carlos arrived. He was carrying two plastic bags filled with the small plastic to-­go containers used by local pensiones, the small restaurants that families operate out of their houses. Carlos had an assortment of the daily specials—­milenesa (breaded meat), picante de pollo (spicy chicken), and pansa (beef stomach). I felt guilty that Carlos had brought us all lunch. I had not expected this gesture, since we were meeting at 2:00, just after the normal lunch hour. Although I had already eaten, I felt it would be rude to not eat. I chose the

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milenesa, grateful that René had taken the pansa, a dish I always found difficult to eat because of its rubbery texture. After a quick lunch, René and Aracely quietly slipped out, leaving me to converse with Carlos. Carlos quickly opened up about his rather complicated love life: “I have been with René for almost seven years now. We are dedicated to each other, but we have an agreement that we can have other relationships. I have been with others, and so has he . . . About two years ago, I was going through a stage where I felt confused. During this time, I met my wife. We are both nurses, and we were working together. For me, it was only casual. I didn’t want anything with her. I suppose I was experimenting. But then she got pregnant.” Carlos went on to explain the implications of the pregnancy, saying that since his wife was from a high-­status family, it would have been a scandal for the family if they had not married. He continued, “I offered to pay child support, provide whatever the child needed, without marrying her, but her family would not accept it. She told me that if we did not marry, I would never see my son. And the courts here, they favor the woman when it comes to the children. And because of the status of her family, it would have been an impossible situation.” Carlos was hoping for a small civil ceremony—­one that could go unnoticed— ­but the family insisted on a large celebration with a church wedding. Wondering what his wife knew and did not know, I asked, “Does she know about René?” He responded: She knows everything—­her family, no, but her, yes. She knows I am gay, but she won’t accept it. I don’t understand, but she thinks she can change me. She is very religious and thinks I can be cured. She won’t accept a divorce. I’ve offered to pay for everything they need, but she will never let me see my son if we separate. To her, it would be a shame for us to separate, and she wants us to stay together for appearances. If I were lying to her, I would feel guilty, but she knows everything. I don’t even live with her. I have three houses where I divide my time. She and my son have a house. I spend time there to see my son, but I don’t sleep there. I have my own house that is only mine, and I live in it by myself. This is René’s house. He lives here by himself, but I spend a lot of time here.

“And she knows about your condition?” I pressed. Carlos explained that he told her right away and that both she and their infant son had tested negative. “Because we don’t have [intimate] relations, there is no risk anymore,” he added. Carlos did, however, feel guilty when René tested positive. Although both of them had many outside relations, Carlos had convinced himself that he had contracted HIV first. He explained his reasoning: “I was never careful. I’m a nurse and tell others to be careful, but I was never careful. And I had a partner who



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moved to Spain to work as a prostitute. He was a prostitute here, but in Spain, he could make more money. I think I got it from him, but the truth is I don’t know.” For the next hour, Carlos and I continued talking about the various forms of secrecy that dictated his life. Carlos identifies as gay, but how he expresses this identity depends on the context. With his wife’s family, he must perform as a heterosexual husband and father. To do otherwise carries great risk—­the potential loss of a relationship with his son. Within his own family, everyone knows he is gay, but they never speak of it. With them, it is a public secret. With René and his sisters, Carlos does not have to keep his sexuality a secret. However, René’s sisters are always suspicious of Carlos’s intentions with René, wanting a more stable partner for their brother. Within the ambiente, Carlos felt like he had to rely on silence to hide his HIV status. In Santa Cruz, while there is growing acceptance of gender and sexual diversity, there are few places where gender and sexual minorities feel comfortable openly expressing their gender identity and sexual orientation. A handful of gay-­friendly nightclubs offer the few safe spaces in an environment that can otherwise be hostile. Within this nightlife, drug use, heavy drinking, and fleeting sexual encounters characterize same-­sex relations (Wright 2006). Carlos and many other men described an HIV diagnosis as social death in this scene. Carlos explained the implications of this in terms of HIV care. Many individuals actively avoid participation with LGBT organizations that provide HIV-­related services, fearing that association with these efforts will trigger gossip about their HIV status. Carlos maintains different degrees of silence among his various social groups in order to navigate the social inequalities and discrimination that come with belonging to a sexual minority in Bolivia. For Carlos, the gay label would stigmatize him as an unfit parent4 and would be a source of shame in some of his social groups, even though this same label would be more acceptable in other realms of his life. Because of the risk that disclosure poses to his relationship with his son, Carlos uses silence to deemphasize his sexual identity in favor of familial acceptance, even if he is trapped in familial ties that he would rather not have. While it is tempting to view Carlos as simply being in the closet, it is important to consider how this idea reflects a Western model for understanding sexual orientation as a primary axis of identity construction. In Bolivia, other sources of identity, such as that of a son or a husband, often take precedence, shaping models for how individuals incorporate their sexual desires into their overall construction of identity (Wright 2006). This local dynamic contributes to the silence surrounding male same-­sex relationships. The gender inequalities that are built into a heteronormative society create challenges that individuals must navigate when their behavior falls outside of these norms. The challenges faced

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by men with same-­sex desires are distinct from those faced by women. I return to Cassandra to further interrogate how women use silence to navigate the gender ideologies that generate contradictions between women’s imagined and actual behavior.

Imagining Women’s Sexuality “Thank you for always remembering me,” Cassandra slipped in at the end of our brief two-­minute phone call. I was back in the United States, writing my dissertation, and was making phone calls to Bolivia to wish friends and family members a Merry Christmas. I had caught Cassandra in the middle of a family celebration, so our conversation was brief, but she sounded like she was in good spirits. But that was the last time I spoke to her. The following summer, Juana, the peer educator from Epua, contacted me to inform me of her death. We were both caught off guard and upset. In my memory of Cassandra, she was struggling to regain her health, but as an eternal optimist, I had convinced myself that she would fully recover. Cassandra’s entrance into care at a late stage partially contributed to her death. As her body struggled to rebuild her immune system, she remained susceptible to other infections. The chronic diarrhea she was dealing with when I knew her was an indication of this; the undernourishment brought on by diarrhea made it even more difficult for her to recover. While there is a clear biomedical explanation for Cassandra’s death, I could not help but think of the role that silence, and her subsequent breaking of it, had played in her overall illness experience. Juana told me that Cassandra did eventually disclose her HIV status to her husband and her daughter who lived in Switzerland. Following the disclosure, her husband became “more distant,” according to Juana. As their relationship suffered, Cassandra felt uncomfortable asking him for money for things like bus fares. As a result, she was no longer able to participate in the activities at Epua, where she had found a stable source of support and friendship among the other women. When I knew Cassandra, upholding her secret had taken an emotional toll on her. She desperately wanted to tell someone, to have someone who might offer some emotional support in response. As just noted, she had found some of this support by participating in the activities offered through Epua, following her initial introduction to the organization through the peer educator. However, the support from women in the group was not the same as support she might receive from her family. For Cassandra, silence offered both protection and anxiety. There were other women I knew besides Cassandra who kept their HIV status a secret, sometimes at the expense of their lives. In these instances, seeking care could be a performance that revealed the secret (Manderson et al. 2015).



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Tania was one such example. I had met Tania’s husband, Fernando, at CDVIR. He requested that we meet at his home, since he was in a rush to get to work the day I met him. Upon arriving at their house in a lower-­middle-­class neighborhood given to the couple by Tania’s parents, Fernando led me in to see Tania. Tania was in bed, lifeless, in diapers, and hooked up to an IV. She barely acknowledged our presence, having lost the strength to speak. In the living room, Fernando confessed to me the economic crisis that Tania’s illness had precipitated. Tania had begun getting ill shortly after they had married a year before. He pulled out their wedding pictures, showing me a vibrant, healthy-­sized woman with little resemblance to the woman I had just seen. As her condition deteriorated, Tania’s parents began to draw on their limited economic resources in an attempt to save her, and over time, they used their entire savings to help the couple with everyday expenses. Family members had hosted a kermesse, a fundraising event, to help raise money. To buy the medications for conditions not considered opportunistic infections and thus paid for under the Global Fund, Fernando sold their car, and now, nearly all of Fernando’s salary was going toward paying a nurse to care for her at home. “But I don’t blame her,” Fernando said. “She didn’t know that she had this.” I was touched by Fernando’s forgiveness and his clear love for his wife. Later, from Tania’s parents, I would learn that Fernando did not know everything about the progression of his wife’s illness. When Fernando left for work, Tania’s parents asked if they could speak to me. Her mother expressed a desire to “take things off her chest.” It was Tania’s parents who revealed that Tania had known about her diagnosis for years, but she had kept it a secret from her husband until she became visibly ill. To maintain the secret, she had never sought care. Cassandra’s and Tania’s nondisclosure reiterate the need to interrogate the local production of silence among women with HIV. For both these women, silence served as a means for navigating the discord between gender ideologies and the realities of actual behavior. Gender ideologies that frame “good women” as pure and virginal until marriage are well documented in the literature on Latin America, yet this imagery rarely represents the reality of women’s lives. These gender ideologies uphold inequalities that subject a woman’s sexual behavior to social monitoring and scrutiny in a way that is nonexistent for men. For example, many women complained that their fathers or husbands always wanted them at home and required them to request permission to do anything. One woman explained the logic behind this: “There is the expression here, mi mujer (my woman). The men treat you like you are his.” Another woman reported that when she decided to divorce her ex-­husband because he was with another woman, her father was furious, insisting that she should remain loyal to her husband. Clinical practice at times reinforces these inequalities. For example, although

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not required by law, many hospitals require spousal authorization to perform a tubal ligation. Women, however, do not blindly succumb to gendered expectations. While women are more likely to exhibit discretion in matters related to sex due to what is at stake in terms of their reputations (Hirsch 2003), this by no means implies that the majority of women only have sex after they have married and within the confines of marriage. Rather, serial monogamy was quite common among the women I interviewed, with serial monogamy including both long-­term and short-­term relationships. Some women also mentioned more fleeting sexual encounters. Despite this, women find it necessary to remain silent under certain circumstances regarding these behaviors or risk social shame. Thus silence offers a means for women to navigate the constant scrutiny of their sexuality. Disclosure of an HIV diagnosis has the potential to break this silence by providing evidence of sexual relationships. The same holds true for pregnancy, but there are limits to keeping a pregnancy a secret. Further, if marriage follows the disclosure of pregnancy to a partner, this can counter the stigma of being an unwed mother. Revealing an HIV diagnosis, on the other hand, is unlikely to result in the same protection through marriage. This is especially true if the woman tests positive before her male partner, which is very often the case, since women are universally offered an HIV test when pregnant and are the targets of reproductive health initiatives more broadly (Paulson and Bailey 2003; Pooley et al. 2008). An HIV diagnosis can generate fear over how a male partner will react, including the fear of abuse or the ending of the relationship. Several women spoke of negative reactions from male partners when they revealed their diagnosis. One woman said, “He said that I was the one who gave it to him. I received my diagnosis when I was pregnant, but he left and refuses to support his child. I don’t know if he even took the test.” In this context, a woman’s decision to keep her diagnosis a secret from a partner can be viewed as a rational response that avoids short-­term risks. However, there are long-­term risks of maintaining the secret. Although some women successfully navigate seeking care alongside secrecy, this is often not the case. Cassandra had substantial difficulties accessing care and remaining in treatment due to the costs of transportation, difficulties reading her appointment slips and medication bottles, and little access to information that could have helped her better manage her condition. Although she could have gone to a clinic closer to her home in one of Santa Cruz’s satellite cities, she chose to travel to the city to help maintain privacy. Further, while her health was fragile, she had difficulties navigating a system of care that involved travel to unfamiliar clinics, interactions with health professionals who had little patience with her questions, and numerous medications with instructions she could not read. The accumulation of these factors created an additional burden as she tried to manage her illness. Similarly,



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for Tania, fear that seeking care would reveal her HIV status led her to avoid care until she was near death, when it was too late for the ARVs to save her.

Noise, Silence, and Contradictions In June 2014, I attended what had become an annual gay pride parade in Santa Cruz. In typical Bolivian fashion, the parade began more than an hour later than the announced time. When I arrived with my husband at the city’s central plaza, the starting location of the parade, we saw a scattering of people, some dressed in drag, looking like they were waiting for something to happen. There were several travestis with the union of travesti sex workers, some in wedding dresses. Two men were dressed in gold bikini briefs and gold platform shoes, having spray-­painted their bodies gold to match. Another man had dressed like a butterfly, painting his body purple. As we waited, my husband and I chatted with several of the parade participants whom I knew. As different LGBT groups began to organize themselves, a crowd gathered to watch. There were eight groups with parade floats. Several journalists were present. Once it appeared that everyone was assembled, the floats began to project strobe lights and music. The crowd of observers began to grow. Most were there by chance, curious about what was going on. A smaller number were there intentionally in support of friends or because they had ties to one of the organizations that formed part of the parade. Finally, the procession began, headed toward the student plaza about a kilometer away. Along the way, there were few observers, but many who had gathered in the plaza walked alongside the floats. The different floats blared music, and at several points, someone on a bullhorn asked for applause. There was a quiet, polite clap in response. Despite the noise, I felt a pervasive silence. I found a remarkably similar description of Bolivia’s first public gay pride parade in 2001, written in Tim Wright’s dissertation. Wright (2006, 4) described how spectators of this earlier gay pride celebration “stared in silent astonishment.” In the United States and parts of Europe, “AIDS broke a wall of silence” surrounding homosexuality (Wright 2000, 89). As the early years of the epidemic ravaged gay communities, gay activism and AIDS activism unfolded in tandem. In the United States, this activism helped break the silence and secrecy surrounding homosexuality. In many countries, including Bolivia, HIV began as an epidemic concentrated among men who have sex with men. As a result, early interventions in Bolivia focused on gay men as a risk group, and LGBT activism remains well funded by foreign development agencies and global health initiatives. Over the past 30 years, since the implementation of USAID’s Proyecto contra el Sida, which funded Bolivia’s first gay men’s outreach center, an LGBT community has become increasingly visible. Evidence of this includes the annual

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LGBT pride march, an annual LGBT film festival, and several prominent LGBT organizations that receive a steady flow of foreign funding, with the Dutch organization Hivos and the Global Fund being two of the primary financers. Bolivian LGBT organizations have largely imported a Western model of LGBT activism, organizing around issues such as gay marriage and adoption and public salir del closet (come out of the closet) campaigns. Yet despite increased visibility of sexual diversity and growing noise around LGBT activism, silence and secrecy still pervade same-­sex relationships in Bolivia. A clear illustration of this contradiction is Álvaro—­a public HIV activist who maintains a heterosexual identity among family and friends of his family. Parallel to LGBT activism is the growing community organizing and international funding for women’s sexual and reproductive rights. This includes not only an increasing amount of global health attention to how gender inequalities shape women’s vulnerability to HIV but attention to women’s sexuality more broadly. One such effort is the Campaña 28 de septiembre (September 28 Campaign), a regional effort throughout Latin America and the Caribbean aimed at decriminalizing abortion. This campaign involves an alliance among various local feminist organizations, including the Santa Cruz–­based organization Colectivo Rebeldía, with broader global support from organizations such as Amnesty International. Part of Colectivo Rebeldía’s efforts have included a project that promotes discussion of sexual and reproductive rights, especially among rural indigenous communities. Despite such efforts, there are persistent silences surrounding women’s sexuality. While there are clear differences in the role of silence surrounding women’s sexuality and male same-­sex relations, there are some common themes in the continued production of silence. Primarily, efforts aimed at promoting LGBT rights and women’s rights rely heavily on Western models for breaking silence. This comes in part because funding for such programs has originated from the West, and funding is available within the constraints of donor priorities. Even when local actors have more power in deciding how to develop programs, they may look elsewhere for models to replicate. These imported models, however, do not always address the local dynamics that allow silence to serve as a mechanism to navigate the local dynamics of social inequalities. Tim Wright provides a detailed discussion of this issue based on his work as the head of a USAID-­financed gay men’s outreach center in Santa Cruz in the mid-­1990s. The outreach center focused on the development and organizing of a gay (male) community. This effort, however, was contradictory to the local social organization of male same-­sex relations. Men with same-­sex desires who did not construct their identity primarily around their sexuality were not interested in developing a gay community and were not engaged in identity politics. Further, this model of community building also ignored the context of many



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same-­sex relations that constructed the maricón as feminine and distanced the dominant male, or allowed him to distance himself, from any sort of connection to a homosexual identity. Thus a model of gay identity that involves coming out of the closet, as developed in the United States, Australia, and Europe, ran contrary to many men’s own understandings of their sexuality. There was, however, a small group of men that did benefit from these efforts. These were men who were comfortable taking on a gay identity; that is, they identified as maricones. They were not from the upper echelons of society, where they would face significant social risk by identifying as gay, but also they were not from the poorest sectors of society, where family rejection could result in economic hardship. Wright uses the term development gays to describe how this group of men was able to benefit from the substantial foreign funding made available for LGBT activism (Wright 2006), first through USAID but later from the Global Fund and European development agencies such as Hivos. Since Wright’s work, LGBT activism has continued to generate substantially more visibility for those who actively participate in LGBT organizations. However, the dynamics of who takes on a gay identity remain largely the same as those noted by Wright, and silence remains an important strategy for most men to navigate same-­sex relations. LGBT organizing efforts at times contradict many men’s abilities and desires to identify as LGBT by overlooking the significant role that silence plays in enabling men to navigate the tension between their sexual desires and other important sources of identity construction. Multiple LGBT organizations in Santa Cruz house HIV prevention, testing, and care activities. Yet there is a large group of men who seek to distance themselves from these organizations out of fear that it will make their sexual behavior known. Global health organizations have also been granting substantial attention to the ways that women are vulnerable to HIV. However, there is very little funding for HIV interventions that reach women in Bolivia. This lack of funding in itself is a form of silence. Further, the stereotypical portrayal of women as passive subjects circumvents open dialogue surrounding women’s sexuality (Seckinelgin 2011). The result is little funding for meaningful sexual health interventions for women. Of the women I interviewed, many knew very little about HIV, routes of transmission, or how to protect themselves, until they tested positive for HIV. Survey data back up this observation, as a 2008–­9 survey on HIV knowledge conducted in Sucre, Bolivia, found that 67 percent of respondents had inadequate knowledge of HIV transmission and prevention mechanisms (Terán Calderón et al. 2015). While both men and women very often have little information about HIV, women—­as a result of their status as mothers—­are more frequently targets of public health interventions and very often receive a positive HIV test before their male partners do. After a woman tests positive, she then is obligated under the law to disclose her HIV status to sexual partners yet

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lacks the resources for managing this. Cassandra and many other women I met responded to this dilemma with silence. Such enactments of silence perpetuate outsider stereotypes that women are passive victims, as opposed to actors with their own desires and agendas.

Rethinking Silence In global health documents produced by organizations such as UNAIDS and the WHO and academic literature, there has been a focus on breaking the silence as a means of reducing HIV-­related stigma and bringing attention to different forms of inequalities that can make individuals vulnerable to HIV (e.g., Grünkemeier 2013; UNAIDS 2013a; WHO 2009). There is also the assumption that disclosure will result in social support that can contribute to improved adherence to ARVs (WHO 2016b). Global health bodies have promoted breaking the silence surrounding HIV through various means. For example, when ARVs first became available in West Africa, those who were willing to give their testimonies of living with HIV were the first to gain access to the lifesaving drugs. Viewed by global health funders as a means to reduce stigma and promote activism, testimonies became a commodity, while those not in a position to break their silence were less likely to gain access to ARVs (Nguyen 2010). Further, disclosure is at times presented as a necessary part of receiving health care (Squire 2014). The HIV Law in Bolivia illustrates this point by legally obligating people with HIV to disclose their status to health care providers. Additionally, with the relationship between HIV activism and LGBT activism, global health financers frame generating visibility for LGBT issues as an important aspect of halting the spread of HIV in Bolivia (UNAIDS 2014). In a similar trend, there have been efforts to break the silence surrounding women’s sexuality (Bianco and Aranda 2009; WHO 2009). Efforts to break the silences surrounding HIV have in some instances been transformative in the trajectory of the epidemic, and this success has fueled sustained efforts to promote the visibility of HIV. In the United States, President Reagan made no public mention of AIDS until 1985, and critics viewed his silence as indifference (Shilts 1987). In South Africa, President Mandela was criticized for giving little public attention to HIV until the early 2000s, after the end of his presidency (Fassin 2007b). In both contexts, silence fueled stigma, perpetuated individual blame, and contributed to a lack of funding for research. The visibility of activist groups, such as ACT UP in the United States and the Treatment Action Campaign in South Africa, was crucial in breaking the silences of their respective governments and demanding more resources for HIV (Altman 1994; Robins 2006). However, as Cassandra and Carlos demonstrate, silence is complex and serves dramatically different purposes in different



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contexts. There is a need to understand how some individuals have social privileges that facilitate disclosure while others do not (Nuttall and Mbembe 2015) rather than assume that people in dramatically different circumstances can uniformly break the silence. It is important to consider how HIV interventions can respect the local significances of silence while at the same time seeking to diminish its potential long-­term risks; working with silence can be a more effective strategy than trying to break the silence. In Bolivia, the ways that the local enactment of silence conflicts with a global health focus on breaking the silence enable the persistence of fault lines among individuals who strategically use silence to navigate the inequalities in their lives. Gender inequalities play an important role in contributing to the enactment of silence among women and sexual minorities. As a result, there is a tendency to view male dominance within society as contributing to the conditions that have fueled the HIV epidemic, which often translates into blaming men. In the following chapter, I examine the ways that Bolivian society blames men for HIV and what this means for men as they seek care.

6 • BL A MING MACHISMO

Just before lunchtime on an overcast morning, following a day of steady rainfall, I arrived at Magaly’s mother’s home in Montero. Magaly had just moved out of the house she had rented on the urban periphery of Santa Cruz to return to living with her mother. When I spoke with her on the phone earlier that week, she described feeling lonely after leaving the city and looked forward to the company of my visit. Magaly was waiting for me outside of the short wooden gate that marked the entrance to her home as I crawled out of the trufi (a fixed-­ route shared taxi) that had brought me from Montero’s main plaza, following an hour ride from the bus station on Santa Cruz’s northern side. We crossed the drainage ditch between the road and the house’s gate, walking on wooden planks Magaly had arranged to help avoid any awkward slips into the sludge below. As I settled down on a wooden bench under a shaded area in the yard where several chickens roamed freely, I was surprised when Efraín came out to greet me. Magaly described Efraín as her husband of five years, even though the couple had never officially married in a civil or church ceremony.1 According to Magaly, her main motivation for moving back to her mother’s house in Montero was to separate herself from Efraín. Prior to her move, she frequently commented on feeling cansada (tired) of doing all the duties at home while also supporting Efraín economically as he consistently failed in his attempts to develop small businesses. Magaly later told me that she had decided to give Efraín another chance, and she had not wanted to admit this on the phone to me, feeling ashamed for tolerating his behavior. As Efraín sat down across from me, Magaly announced that she would be in the kitchen preparing lunch and that she hoped the two of us could talk. Even though I had developed a close relationship with Magaly, this was my first time speaking at length with Efraín. He started the conversation by saying, “I want to tell you some things to put in your book,” and he began with his thoughts 106

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on a Global Fund–­financed stakeholder forum he had participated in several years earlier: I went to one forum, but after that, I decided I would never go again. You know why? Because they blame men for everything. They say HIV is because of machismo. But in my case, it was not like that. In my case, my wife infected me . . . At one of the meetings that they always have, at the Hotel Misional or wherever, someone mentioned machismo, and I responded that it’s not always like this, that my wife infected me. I didn’t infect my wife. Everyone was yelling and angry. So I decided to never go again.

Over the next two hours, Efraín recounted his life history. He interrupted his monologue only when Magaly called us to eat lunch, and he continued detailing the events of his life around the table as we ate chicken, broccoli, and rice. Some of the details seemed more like magical realism than real life, but Magaly nodded her head in agreement when I asked for clarification on the details I found hardest to believe. Central to Efraín’s narrative were the things that women had done to harm him, although Magaly often interrupted him when he blamed women, saying, “You are not so innocent yourself! And they are not here to defend themselves!” In other conversations, Magaly frequently referenced the machista behavior of her husband. However, as Efraín recounted, such labels left him feeling angry and alienated. Prior to our conversation, I had become aware of the machismo blaming that Efraín described. It was a discourse I had heard expressed by public health officials, health care workers, and even HIV activists and people living with HIV whom I interviewed. In a conversation I had with Dr. Sandoval, a female doctor with CDVIR, she said, “It’s because of machismo,” when I asked her about the recent rise in HIV cases among women. Such a discourse, which blames machismo for HIV, circulates in the media and among the public in discussions surrounding HIV. Ministry of Health brochures aimed at promoting testing and prevention of HIV even list machismo as a risk factor. Given the stark manifestations of gender inequalities in Bolivia, such as high rates of violence against women (Bott et al. 2013), blaming machismo intuitively made sense. Yet what does it mean to call machismo a risk factor? Does this discourse adequately capture how gender relations play a role in HIV risk? More importantly, how does this discourse influence the experiences of men living with HIV? In this chapter, I interrogate the ways that a blaming-­machismo discourse has become a part of local understandings of HIV and what such a discourse implies for men with HIV.

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Figure 6.1 . From a Ministry of Health brochure on HIV. It reads, “What are the risk

behaviors or sociocultural risk factors for contracting HIV? Lack of information. Machismo. Excessive alcohol consumption. Multiple sexual partners. Underestimating risk, ‘nothing will happen to me.’”

Defining Machismo Discourses of HIV in relation to machismo emerge at the intersections of local understandings of masculinity and a global health narrative that claims to prioritize women in relation to the HIV epidemic. The global health realm inadvertently generates a “victim” and “victimizer” dichotomy, framing men as transmitters of HIV. As Fassin (2013, 119) explains, “In the moral Inferno of public health, men occupy the lowest circle of hell, being accused of irresponsibility, disloyalty, violence, and rape.” While machismo typically involves connotations of masculinity in Latin America, the way individuals evoke the term in relation to HIV in Bolivia goes beyond the regional and local contexts. The term machismo has a problematic history within the academic literature on Latin American men. Scholars who popularized the use of the term in academia (Stevens 1965; Gilmore 1990) often presented essentialized understandings of what it meant to be a man. While David Gilmore (1990) noted positive traits associated with machismo, such as chivalry and bravery, the use of the term more often focused on negative traits associated with masculinity. Wife beating, infidelity, drinking too much, and abandoning children, or what Evelyn Stevens

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(1965, 848) called the “cult of virility,” became associated with machismo, contributing to a cultural essentialism of Latin American men. Critiques of this work help complicate understandings of Latin American masculinity. Matthew Gutmann’s ethnographic research on working-­class Mexican men (1996, 2003, 2007) was transformative in bringing attention to the diversity of masculinities that coexist; he refers to machismo as one option (among many) that men draw on to guide their behavior. Gutmann criticized the rampant use of the machismo concept in academia, pointing out that reliance on this term was more problematic than useful in terms of understanding male behavior because it ignored the variety of ways that men constructed their masculinities. Among Mexican men and women, he found little consensus in relation to what machismo was but rather noted a consensus that it did exist and that machismo was a pejorative term. Despite the problematic uses of machismo, Gutmann (1996) demonstrated that it is still important to interrogate this concept because it remains a powerful force in shaping how men and women think about gender relations. Even if an individual’s beliefs and practices are not in accordance with the ideals of machismo, the concept remains a powerful force in the popular imaginary—­that is, individuals make use of machismo to explain gender relations, even if it is insufficient for explaining how gender relations function in their own lives. In Santa Cruz, men and women frequently evoke the term machismo to refer to what they see as negative masculine traits and a male-­dominated society. Individuals attribute actions such as wife beating, men’s infidelity, womanizing, and drinking too much to machismo. For example, the local newspaper of record, El Deber, often cites “machista violence” when reporting on femicides and violence against women. Positive qualities, such as the bravery and chivalry described by Gilmore (1990), typically do not enter the discourse of machismo in Santa Cruz. Those who embody the traits associated with machismo are labeled machistas. While individuals readily use machista as a label to describe another person or even society as a whole, it is rarely used to self-­identify. Although men are hesitant to use the term machista to describe themselves, men and women view machismo as a force that influences local gender relations and are quick to refer to other men as machista. Further, machismo encompasses a set of behaviors that women come to expect of men and may view as socially acceptable. Even when a man is not described as a machista, he may make use of the cultural script that provides options for what men can and should do under given circumstances. This allows for the normalization of behaviors such as infidelity, violence against women, and excessive drinking. While Bolivians may be critical of these behaviors, individuals still view them as an expected part of their local worlds, and women maintain low expectations of the men in their lives. This leads to a strong social imaginary of Bolivian “men as disappointing, despite

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their displays of bravado and promises of protection” (Wright 2006, 62). As the woman I rented a room from in Santa Cruz put it, “Here, men are worthless.” Indicators of gender inequality illuminate why Bolivian women often feel disenchanted with the men in their lives. A recent PAHO study found that 70 percent of women had experienced physical, sexual, or emotional abuse from an intimate partner (Bott et al. 2013). A World Economic Forum (2013) survey found that women make 53 percent of what men make for similar work, ranking Bolivia 118 for wage equity out of the 130 countries in the study. Additionally, women are overrepresented in the informal economy, with 68 percent of female workers compared to 58 percent of male workers employed in the informal sector. Those working in the informal economy often have less stable incomes and less access to benefits (World Bank 2015a). Given the diversity within Bolivia, it is important to think about these inequalities as existing within multiple forms of patriarchy. There is a tendency to romanticize gender relations among indigenous groups as being more egalitarian (Fabricant 2012). However, this romanticizing ignores how compounding forms of inequality tied to gender, race, and class shape the experiences of both men and women. For example, survey data show that indigenous women experience a higher rate of physical violence from intimate partners than nonindigenous women and that indigenous women have lower levels of educational attainment than their male and nonindigenous female counterparts (World Bank 2015a). These statistical trends point to a society characterized by male dominance. Yet other factors, such as race, class, and age, contribute to how individuals embody male dominance. Indigenous masculinity in particular has often been portrayed as asexual and feminine by white society. For example, Bolivia has long used mandatory military service as a mechanism for creating modern men. Within the military, men would be punished for displaying their indigenous roots, which included speaking in an indigenous language. Punishments often included female chores and forcing men to dress as women (Canessa 2008; Gill 1997). This feminization of indigenous men has been central to upholding racial hierarchies (Canessa 2010). However, wealth or other sources of power can mitigate stereotypes of the asexual indigenous man, as evidenced by the substantial public discussion of President Morales’s virility (Canessa 2008). Although indigenous men are often in a subordinate position to white men within society, this does not preclude gender inequalities within indigenous groups. In fact, a major criticism of indigenous political movements has been the focus on the emancipation of indigenous people at the expense of ignoring the emancipation of women (Ari 2014). The men I interviewed expressed different ideas of what it means to be a man. Forming a steady relationship, having children, and working to provide for one’s family were central to many men’s narratives, especially when HIV assaulted

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these aspects of their masculinity. For example, Abelardo lamented that he had never married or had children in light of being diagnosed with HIV in 2005 when he was in his mid-­20s. He went on to explain that he had always desired a family, but he thought his HIV status would cause harm to a hypothetical wife and children. His parents and siblings, who did not know his HIV status, persistently questioned him about why he had not yet married. While multiple forms of masculinity exist, machismo pervades social understandings of masculinity and serves as a means for understanding widespread gender inequalities. The machista puts flesh on the concept of machismo. Even though most men would not describe themselves as machista, images of the machista as the dominant male pervade the social imaginary. So what does this look like? Ana, a 60-­year-­old woman who had recently received her HIV diagnosis after her husband died of AIDS, provided me with a description of her husband, describing him as “controlling.” Her adult daughter insisted that he was a machista. Ana explained: He always liked to yell and fight and be in control of everything. He would yell because there wasn’t enough salt in the soup, or whatever little thing. My reaction was always to be calm. If I didn’t fight back, he had no one to fight with. Sometimes I cried, but I never fought back . . . He always insisted that I stay in the house. He didn’t want me to go out with anyone or leave the house. But he was always out in the street. I never knew what he was doing. Maybe he had a double life, and that’s how he got this. We don’t know.

Later in the conversation, Ana’s daughter added, “It was my idea that my mother take an HIV test. We never knew what my father had. He just got sick and didn’t want anyone to help him. But toward the end, I began to suspect it was AIDS. When her test came back positive, that’s how we knew for sure.”

Blaming Machismo as a Gendered Politics of Life Since local HIV program funding and guidelines originate in the global health arena, it is important to examine local discourses of machismo alongside global health discourses. While there is some variation in how global health documents portray men and women, systematic analyses of these documents reveal dominant patterns (Chong and Kvasny 2007; Heckert 2015). There is a clear pattern in framing men as transmitters of HIV, with women at risk because of what their male partners do. For example, a Global Fund document on addressing gender inequalities states, “Gender norms and power dynamics that encourage multiple partnerships among men and submissiveness among women also put women and girls at greater risk of HIV” (Global Fund 2014, 3). A WHO (2009,

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22) guide on integrating gender into HIV programs states, “Norms related to masculinity sanction men to dominate sexual and reproductive decisions.” Such discourses have ramifications for the implementation of policies in local contexts. For example, PAHO, the regional body of the WHO, produces manuals for training health care providers. One manual states, “Dominant norms of masculinity demand of men that they be strong, in control of women, and sexually aggressive” (PAHO 2013, 9). Training materials such as this disseminate global health discourses in the local context. When global health messages surrounding HIV intersect with notions of machismo, they result in strong sentiments of blame toward men, with women portrayed as victims of their male partners. Local health care workers reframe this narrative according to local understandings of gender. One doctor at the public HIV clinic, slamming his fist on his desk, told me, “The only people I feel sorry for are the women who come here [for HIV treatment] because they got it from their husbands!” I witnessed this sentiment imparted to a group of men and women at a support group session at CDVIR one day. The psychologist leading the session said, “In our society, machismo allows for a man to have multiple partners, so he often brings it into the home, infecting his wife.” In another instance, in a quote given to the media, a public health official attributed epidemiological trends to “[a] machista culture where men continue to dominate and lead lives marked by irresponsibility toward their families and their health” (Peréz 2012). In this light, micropolitical interactions make blaming machismo a politics of life. Discourses that blame machismo are reflections of how health care workers view HIV-­positive men. These perceptions influence interpersonal interactions and have implications for how men experience and make use of the HIV services that are available. As Efraín’s narrative highlighted, he ceased his involvement with an activist organization because of the ways he perceived others as blaming him as a man. Machismo also factors into how broader society perceives men’s role in the HIV epidemic. The queen of Carnival in 2014 illuminated this point during a press conference. As a part of CDVIR’s HIV prevention activities prior to the Carnival festivities, public health authorities invited the queen to speak at a press conference to emphasize the importance of safe sex. Speaking off the cuff, the queen told a group of reporters, “You blame the sex workers for this, but it is the husbands that are going out and bringing it into their houses. You don’t know what men are doing, so insist on a condom!” Following the press conference, I overheard the director of CDVIR telling a coworker, “I love that she said that.” In a context of extreme gender inequalities, a machismo-­blaming narrative resonates with the experiences of many women. However, this blame targets all men, not just those labeled as machista, and it results in essentialized understandings of men as transmitters of HIV because of their indiscriminate sexual

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behavior. To be fair, many stories reinforce the simplistic notion that women are victims, at risk of infection by the machismo of their male partners. For example, one man in his mid-­50s explained to me unapologetically, “My wife died from this in 2009. I gave it to her. I was with other women. We got along well, but I would go out with other women to dance and drink. And like that, I infected her.” Another married man and father of four told me in front of his wife, “I’m a person, who in my 36 years of life, I’ve lived a lot . . . I’ve been with prostitutes, with maricones, with everyone. I’ve done bad things. But there are things that I have changed, and I’m living with the consequences of what I did. But I’m still a womanizer.” These examples make it very tempting to blame men. However, discourses of blame have never been productive in the history of the AIDS epidemic; rather, they increase the vulnerability of the targets of blame (Farmer 1993) and enable those who do not perceive themselves as a part of these categories to feel that they are not at risk. While machismo is insufficient as an explanatory model for HIV, the idea that it is an adequate explanation for how gender contributes to HIV risk persists in both local and global health discourses. In this light, it is important to consider the ways that a blaming-­machismo discourse intersects with the lives of men with HIV. Rafael and Machismo as a Risk Factor Rafael’s illness narrative shows how a blaming-­machismo discourse, which includes defining machismo as a risk factor, can give men a false sense of security when they do not identify as machista. When I met Rafael, he was 45 years old. He had migrated to Santa Cruz from the rural highlands in search of work following his military service in the 1980s. We first met at Comunidad Encuentro in December 2013. At the time, he had already been staying there for several months, recovering from tuberculosis. After several weeks of stopping by to informally chat and watch television with him, Rafael asked me, “Can I tell you my story?” He began talking in a hushed voice, looking around to see who might overhear us in the shared room, and then motioned for us to go outside. We sat in two wooden chairs, swatting away mosquitos as he began: “I don’t know if I really have this sickness that they tell me I have. I was never a womanizer. I’ve always worked and worked. When I was younger, I had relationships, but I was never a womanizer. It’s been years since I went out with a girl. I separated from my wife eight years ago, and I haven’t found anyone else.” He repeated several pieces of this narrative throughout our conversation—­“I was never a womanizer” and “I don’t know if I really have this.” Rafael told me about his life, saying, “I have a daughter, about your age, but she doesn’t want to come visit me. Her mother-­in-­law turned her against me.”

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He went on to frame his life in terms of work and the various jobs he had held throughout his life as a laborer, trucker, and construction worker. Thereafter, I continued visiting Rafael whenever I went to Comunidad Encuentro. Although his doctor granted him permission to leave in April, he stayed until June, having nowhere else to go after losing his rented room when he could no longer work. At Comunidad Encuentro, the nurses invented tasks for him to do, such as fixing an IV hanger and repairing cracks in the cement sidewalk, to cure his thirst for work. Finally, one of the doctors gave him a job working on his property, giving Rafael the option to leave the hospital and the means by which to live. Rafael’s illness narrative challenges the use of machismo as a risk factor. Rafael understood a key trait of machismo as being a womanizer, and he did not see himself as this type of man. Instead of framing his masculinity through traits he associated with machismo, Rafael framed his masculinity in terms of his ability to work. HIV assaulted his masculinity because it prevented him from being able to work. Because Rafael understood HIV as tied to machismo, he did not see himself as at risk for HIV, and he routinely questioned the validity of his positive test result. It is unlikely that Rafael would have taken an HIV test had he not been sick with tuberculosis. Rafael’s understanding of HIV as something that a man gets from being a machista contributed to his late diagnosis of HIV, making his recovery from tuberculosis more difficult and making him more susceptible to opportunistic infections, which could have been fatal. Rafael’s difficulty in comprehending how he could have HIV had implications for him staying in care long term. Rafael’s diagnosis of HIV destroyed his relationship with his daughter, Eliana, the most important figure in his life. According to Rafael, Eliana believed that he only had himself to blame. Without visits from her, and socially abandoned, I effectively became Rafael’s only visitor during the nearly nine months that he was a patient at Comunidad Encuentro. Efraín and Encounters with Blaming Machismo I return to Efraín to further interrogate how men internalize a blaming-­ machismo discourse. It would be easy to label Efraín a machista, given the patterns of inequality that marked his relationship with Magaly. However, Efrain rejected this label, and the machismo blaming that he encountered left him feeling alienated from activist groups and other civil society organizations. Following his critique of how activist organizations blame men, Efraín continued with our conversation by explaining why he was upset over being the perceived target of blame, focusing on his relationships with women. He said, “How I met her, the woman who gave me this . . . well, first you really need to know how I ended up in La Paz, where I met her. I went to La Paz to escape the mines,

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because I worked in the mines at the time. Before I went to work in the mines, I lived in Cochabamba. But after the mother of my children sold my child, that’s when I went to the mines.” “She sold your child?” I asked, trying not to show my horror. “Well, she sold both our children,” he answered. “I got the oldest one back. He is 14 now; you met him last week . . . I had a lot of problems with the mother of my two children. Sometimes we were together. Sometimes we weren’t. But after the second child, when my son was a baby, I decided I wanted to be with my family. One day, I went home after work, but no one was there.” Efraín began to ask neighbors and friends if they knew anything, and a friend finally told him that the mother had sold the children and used the money to escape to Peru. Desperate to find his two children, he went to the police and his parents for help. The story received widespread media attention. The police eventually found the baby, but they never found the two-­year-­old. After the incident, Efraín’s parents, convinced he could not care for a child on his own, insisted on raising the son. Not sure what to do, Efraín decided to go to Oruro to look for work in the mines. Working in the mines was dangerous and physically exhausting, with inconsistent wages, so he decided to try his luck in La Paz.2 It was there where he met Lourdes, the mother of his youngest biological child. Magaly later told me that Efraín had met Lourdes in a red-­light district of El Alto, and he was fully aware that she was a sex worker when they began a relationship. Efraín continued to have trouble finding work, but he heard from relatives that there was work in Santa Cruz. The day after he and Lourdes arrived together in Santa Cruz, he gained employment. Describing the progression of their relationship once in Santa Cruz, he said: She never told me that she had this sickness, but thinking about things that happened, she had to know. She always wanted me to use a condom, but since I didn’t know she had this, I didn’t want to. I wanted a child with her, but she said she didn’t want one, and when she got pregnant the first time, she had an abortion. The second time she got pregnant, I convinced her to have the child, but she insisted on a cesarean. She borrowed 1,500 bolivianos [$217] from a relative to have the cesarean because she refused to go to the public maternity hospital . . . She did not want to breastfeed him. Since I didn’t know why, I insisted that she breastfeed him. I always heard that breast milk is best, so I did what I thought was right. I think that is how she transmitted it to him.

In the first year after his son was born, Efraín began to get sick a lot. He had chronic diarrhea to the point that he was unable to get out of bed. He went to a lab where they tested him for “everything,” but not HIV. He then developed a

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knot on the back of his head, which left one side of his body paralyzed. Unable to get out of bed for months, his grandfather sought the advice of a traditional healer. Efraín went on to explain the healing ritual that followed: “The healer told my grandfather—­he is from La Paz—­to buy mule fat, so he went, and came back with a jar of it. They heated the fat until it was a liquid, then they put it all over my body. I lay on the ground outside the house, and they massaged it all over me and left me in the sun. They repeated the same thing three times. Then I was better. With nothing else, I got better.” Once Efraín recovered, however, Lourdes began to get seriously ill. She got sick easily the whole time that they were together, but this time she did not get better. Near death, Lourdes insisted on returning to La Paz so that her family could help take care of her, so they went. There, her downward spiral continued. Finally, when she was hospitalized, a nurse advised Efraín and his son to “go to this place” to get tests, but she did not specify which tests. The address was for the CDVIR in La Paz, where they both tested positive for HIV. Around this time, Lourdes died. It was 2008, and ARVs were available for Efraín and his son. Although Efraín seems certain that Lourdes had HIV first, her parents blame him for her death. They received custody of the son and forbade Efraín from visiting. Efraín has since tried several times to get custody of his son, without success. Magaly had commented to me before that it was her and Efraín’s shared experience of having a child with HIV that had brought them together. Far from the story of a cheating husband who gives his wife HIV, implied by the social imaginary of the machista, many pieces of Efraín’s narrative demonstrate complex mechanisms for how gender inequalities shape risk and vulnerability to HIV for both men and women. Magaly was always quick to defend Lourdes, saying that she had to become a sex worker because her parents could not support the family, herself recognizing the gender inequalities that at times constrain women’s agency and shape their decisions. Efraín’s insistence that Lourdes have a child, his reluctance to use condoms because he wanted a child with her, and his later insistence that she breastfeed this child indicate a relationship that we might consider marked by male domination. Lourdes never disclosed her status to Efraín. Even if gender inequalities were evident in Efraín’s relationships with women, he took offense when it was suggested that machismo was the cause of his HIV status and felt excluded from activist programs when he failed to agree with the message that machismo is to blame for the spread of HIV. Although the legal system generally privileges mothers and their families over fathers in custody of children, Efraín viewed his inability to gain custody of his son as another way in which society blames men for mothers and children with HIV. Efraín’s narrative illuminates the ways that men at times feel alienated from the HIV services that are available. Efraín’s response was to end his participation with

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the activist organization in which he had participated; this included with­ drawing from their support groups and no longer receiving additional resources, such as occasional food supplements, that can come with being involved with such organizations. But could men’s feelings of alienation lead to even deeper ramifications? Examining the context of deaths from AIDS and men’s care-­seeking patterns bring to light some stark trends. In Santa Cruz, although men comprised 64 percent of newly registered cases of HIV in 2013, they accounted for 79  percent of AIDS deaths during that same year (CDVIR 2013). Higher death rates from AIDS among men are somewhat expected, given that until recently the epidemic was more heavily concentrated among men, and even without treatment, it can be years before the condition can contribute to death. However, Comunidad Encuentro consistently has about three to four times as many male patients as female ones. At the largest public hospital in Santa Cruz and the public hospitals in the satellite cities of Warnes and Montero,3 each of the doctors has a stack of medical files of individuals who received an HIV diagnosis but who had been “lost” to follow up for treatment and monitoring. At each of these hospitals, there were multiple stacks of files for men, but only a small stack for women. On a visit to the hospital in Warnes, the nurse began to count the files in her stacks as she explained to me what they represented. There were more than 20 files for men, but only 4 for women. “A lot of the men don’t come. Some send a wife or partner to pick up their medications, but the others just disappear,” she explained. A doctor at a public hospital in Santa Cruz explained that when a patient “disappears,” the death almost always goes unregistered as an AIDS-­related death. Because of this, he suspects AIDS-­related deaths are significantly under­ reported, especially for men. I now turn to José Carlos, one man who disappeared from care. The Maleante: José Carlos and the Gendered Suffering of Street Life “I don’t understand why she abandoned me. It’s left me with this pain. I look for help from God, but I can’t escape the loneliness, the pain,” José Carlos said through tears, referring to his mother, who abandoned him at a children’s home when he was an eight-­year-­old. At the time, she was beginning a relationship with a new man who did not want to support a child that was not his. José Carlos and I sat in two plastic chairs in the courtyard of Comunidad Encuentro. It was my first time speaking at length with him, even though I had met him weeks before. Following our first real conversation, I continued to visit with him at Comunidad Encuentro and met with him regularly once he left the hospital. José Carlos continued, “Sometimes I think about going to look for my family, to try to forgive my mother. I haven’t seen my family in 13 years.” As José Carlos continued recounting his pain, my eyes shifted to the scars on his left arm.

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The dozens of horizontal scars that ran down the inside of his arm, between his elbow and his wrist, were a physical reminder of José Carlos’s emotional suffering, of the dozens of times he cut himself in attempts to end his life. The first time was when he was only 12. More recently, he tried a different method—­pills. When José Carlos was 11, he escaped from the children’s home: “I always wanted to be an adult. I wanted to start working. I thought if I had a job and showed my family I could contribute something, that they would want me back.” His mother had sometimes visited him at the children’s home, but he had not seen her since he had left the home and began a life on the streets, selling recyclables he collected from the trash, cleaning windshields, and engaging in petty theft. When he was 12, he smoked marijuana for the first time. Marijuana and base de coca (cocaine paste), both drugs that are typically smoked, are the most widely used street drugs in Bolivia. Because both of these drugs are cheap and abundant, rates of injection drug use are low. As such, transmission of HIV via injection drug use is almost nonexistent in Bolivia (Medrano Llano 2014). José Carlos eventually tried other drugs, but he continued to favor marijuana and alcohol—­they relaxed him and helped him forget his pain. When even the drugs were not enough to make him forget, he cut himself. Apart from the scars, his time on the street left José Carlos’s body marked in other ways. He had two tattoos on his face—­one a marijuana leaf—­that friends gave to him on different occasions when they were high. He had scars on his face and hands from fights. At some point, he contracted HIV. In our first conversation, José Carlos made no mention of Cecilia. It was only after he had left Comunidad Encuentro, when he accompanied me to visit a mutual friend in a drug rehabilitation center, that he mentioned her. As we shared a seat on a nearly hour-­long bus ride across the city, José Carlos began to tell me in detail about their tumultuous relationship. He had met Cecilia when he was 17. He had found what he thought was happiness on the streets after meeting Cecilia, whom he described as the love of his life. Together, they formed a life around their drug use and finding enough money to support their habits. José Carlos continued to favor marijuana. Cecilia relied on pills. Sometimes, Cecilia would disappear for long periods, and José Carlos would go crazy. As their relationship began to suffer, Cecilia came to him with news one day that she was HIV positive and that he should be tested. They stayed together for a while after this, but they began having more problems. He explained, “Then she left for Cochabamba. She never told me where she was going. After a month, I found out that’s where she was. I wanted to go find her, but I didn’t have any money. I wanted to die.” While Cecilia was in Cochabamba, the police arrested José Carlos one night. “I’ve done a lot of bad things,” José Carlos admitted, “but when the police arrested me that time, it was for something I didn’t do.” Someone had robbed a woman, and the woman paid the

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police so that they would find the person. “They had to find someone. They took me . . . They told me they were taking me to a rehabilitation center. When we got there, I saw that it was Centro de Rehabilitación Palmasola.” José Carlos spent the next two and a half years in the Palmasola prison. The Bolivian prison system is simultaneously hailed as a new model for prisons and criticized for widespread human rights abuses. While guards monitor the prison walls, there are no guards inside the prison blocks. Instead, an elected group of prisoners operates on the inside to maintain order. Prisoners must pay fees to stay in a cell and have a bed. Prisoners can bring in outside food, so many prisoners make and sell food from their cells. Those without money are the only ones who eat the official prison food, which often consists of no more than “hot water with salt,” according to José Carlos. Several Evangelical churches own prison cells, and by joining a church, prisoners often have more access to food, a bed, and protection. While it is easy to dismiss joining a church as a purely practical decision, on multiple occasions, José Carlos talked about joining in more affective terms. In one conversation we had when he was still at Comunidad Encuentro, we began to talk about religion. He said, “One day I started to pray, because that’s what they tell you to do. At first I didn’t feel anything, but then one day I felt a comfort, a love, that I had never felt before.” Following his release from prison, José Carlos entered a church-­sponsored drug rehabilitation program. He was there for about six months when he began developing symptoms of tuberculosis. The church sent him to Comunidad Encuentro, where he stayed for eight months and where I met him in December 2013. When José Carlos was ready to leave the hospital in July 2014, Brother Emilio, the Evangelical pastor in charge of the rehabilitation center, helped him find a room to rent. He found a church member to offer José Carlos a job at his restaurant, but the church member decided he no longer needed the help once he saw the scars and tattoos on José Carlos’s face. José Carlos instead found a job working in construction, but within the first two weeks of this job, his boss failed to pay him as promised and a falling beam injured him. The last time I saw José Carlos, we went to eat. I knew he had only been eating the lunch they gave him at work and nothing else. He had quickly lost weight, and his eye was swollen shut from his work injury. He began to cry, saying, “I know that God is testing me, that I have to be strong, but I don’t think I can suffer anything else.” I left José Carlos that day, extremely worried, but feeling like there was nothing I could do. Two days later, I tried to call him. His phone was disconnected. I then called Brother Emilio, who was worried as well, saying he had not seen or heard from him. The next week, I returned to the United States. When I went to visit Comunidad Encuentro during a return visit in 2016, I began asking the nurse about patients whom we both knew. “And José Carlos?” I finally asked,

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concerned about what the answer might be. The nurse explained that since I had left, José Carlos had returned to the hospital twice for long-­term stays. On both occasions, he began to do better emotionally and physically and went to different rehabilitation centers following his hospital releases. However, after each time he left a rehabilitation center, he slipped into another downward spiral. “He just left one center, but since then, no one has seen him. He has not come for his medications,” the nurse lamented. According to a doctor at CDVIR, men like José Carlos are the least likely to adhere to ARVs. Society labels these men maleantes, and most view them as unworthy of any form of support. The maleante is similar to what Francisco Ferrández (2003) describes as the lower-­class urban men, or malandros, in Caracas, Venezuela. According to Ferrández (2003, 116), society views the malandros as “savages, barbarians, and parasites, people who are predisposed to random violence owing to little more than their ‘lack of character.’” Ferrández further adds, “Once out of his immediate urban territory, his shantytown, [he] frequently notices that others cross the street to avoid him, that merchants lock their shops when they spot him, that police officers comment on how he does not fit in and that they may reach for their guns or harass him, that taxi drivers speed away after refusing him a ride.” Thus the maleante and malandro represent forms of masculinity that society ascribes to the poorest men, attributing high rates of violence and crime in urban areas to them. Ferrández describes this as a form of wounded masculinity, in which men construct their identities around the violence and failure that characterize their everyday lives. While machista is a pejorative term, to be a maleante is worse. A machista at least displays masculinity; the maleante represents a failed masculinity. Discourses of blaming machismo assume that men are socially dominant and frame gendered suffering as a uniquely female experience. This discourse fails to recognize that men, especially men who are socially marginalized due to social class, race, and/or sexual identity, experience distinct forms of suffering. In a context where female children are seen as useful assets around the house, perhaps José Carlos’s mother’s new boyfriend would have been more open to raising a child that was not his if he thought this child would clean, cook, and help around the house. Further, in Santa Cruz, it is extremely common for middleand upper-­class families to informally adopt and raise an abandoned child or take in a child in disadvantaged circumstances. Families sometimes refer to such children as hijo/a (son/daughter) and other times as the criado/a, which in Bolivia carries a connotation somewhere between hijo/a and domestic help. In either scenario, families almost always prefer to bring in a girl, leaving boys on the street.4 I do not intend to discount the suffering the girls raised under such circumstances often experience but instead seek to point out how gender patterns the experiences of abandoned and otherwise disadvantaged children.

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Escaping a life on the street can be an almost impossible task. For José Carlos, his tattoos and scars were physical reminders that he was a maleante. Attempts to find a stable job were met with fear and stigma on the part of potential employers. Society viewed him as unworthy, and as a result, various forms of social exclusion characterized his everyday life. As Magaly’s case demonstrated, social hierarchies tied to race and class pervade the health care system, reinforcing various forms of exclusion from care of the socially marginalized. José Carlos’s experiences reveal how men face the unique dynamics of exclusion. For men, assumptions of guilt lead to machismo blaming. Society views the poorest men like José Carlos as socially degenerate, compounding this blame. When men like José Carlos do fall out of care, health care workers explain it away as a character flaw inherent to that person’s social position. This process of individual blame detracts attention from the structural factors that contribute to individuals falling out of care and places the blame squarely on individual men themselves, creating a context where their deaths go unnoticed. Aldo and the Traumas of Machismo The maleante represents just one form of a failed masculinity, yet there are other dynamics of social marginalization that men experience. How social constructions of machismo shape the experiences of men who identify as gay is particularly complex. Here, it is important to distinguish between a gay identity and male same-­sex desires. Aldo, who identified as gay, experienced machismo differently from men who engage in same-­sex relations without adopting a gay identity. As a 46-­year-­old gay man, Aldo simultaneously felt harmed by expressions of machismo and the need to constantly prove that he was a man. For part of the time that I knew Aldo, he was in a drug rehabilitation center, which he described as a machista environment filled with machistas. In the center, he felt constant assaults on his masculinity. One day when I was visiting him at the center, we sat on the edge of the porch as he recounted recent events that frustrated him. Talking in a hushed voice, worried that the director of the center might overhear him, he told me that they had watched Dallas Buyers Club a few nights before. When Jared Leto, playing the part of a transgender woman, came on screen, the other men began to make rude remarks. Aldo explained, “The men all started laughing and whispering comments about me. People here think that because I’m gay, I want to be a woman, that I am more feminine. But I am a man. I am attracted to men, but I never wanted to be a woman. I never dressed in women’s clothes. I never wanted breasts.” Aldo and several other gay men also applied the term machista to women. According to Aldo, women can also be machista, using this term to describe his

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mother and other women in his life who rejected him for his homosexuality. Aldo said of a woman he rented a room from for a brief period, “She was more machista than any man. She was a friend of my mother’s . . . She talked a lot about witchcraft, saying that it was witchcraft that made me the way I am . . . I always felt this pressure in my life somehow.” Aldo felt constant rejection from his family because, in their eyes, he was not upholding the expectations of a real man. He felt that his mother had rejected him by refusing to accept that she had a homosexual son and that this fueled his addiction and need to self-­medicate. Through his addiction, he became involved in narcotrafficking, a lucrative source of income in a country plagued by limited economic opportunities (Grisaffi and Ledebur 2016). Narcotrafficking took Aldo on 21 trips to Europe, the United States, and Thailand. In Europe and the United States, he encountered different societal responses to homosexuality, ones that he now draws on to explain Bolivian society as machista. Aldo’s addiction, combined with an HIV diagnosis, eventually brought him back to Bolivia, where he had been in and out of drug rehabilitation centers for several years. He constantly expressed a desire to change and for his life to be different, but the pain he felt from his family, and from a society that viewed him as a failed man, overwhelmed him at times, fueling his addiction.

Rethinking Machismo as a Risk Factor Constructing machismo as a risk factor for HIV implies that it is the machista who is at risk. Individuals tie the concept of machismo to a caricature machista that exists more often in the social imaginary than in reality. When men do not view themselves as a machista, they often fail to see how they are at risk for HIV, as illustrated by Rafael. In addition, by not seeing himself as at risk, Rafael doubted his diagnosis, and this in turn had implications for him seeking care and staying in care. Efraín’s experiences demonstrate the harm that can come from blaming machismo. Although Efraín exhibited behaviors that clearly reinforced gender inequalities between himself and the women in his life, machismo blaming left him feeling excluded by some HIV-­related services. Further, while public health officials often draw on machismo as an explanation for men not using condoms, Efrain’s narrative demonstrates that men’s desires to have families also play a role in condom use.5 José Carlos and Aldo provide examples of various other forms of masculinity that exist, showing how failed forms of masculinity that often stand in contrast to machismo also shape risk and experiences of living with HIV. The marginalization and exclusion they felt presented them with a distinct set of challenges for staying in care. Every time Aldo spiraled into old drug habits, he also momentarily fell out of care. José

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Carlos, labeled as pathological by society, could not find work and was left with feelings of despair and no regular income to support his needs. Blaming machismo has emerged at the intersections of global health and local gender ideologies. As a result, moving away from the trap of blaming machismo is complicated, requiring changes at multiple levels. At the global health level, attempts to recognize how gender inequalities pattern risk and access to care have inadvertently reinforced simplistic gender stereotypes that often do not reflect the complexities of individual lives. This is in part an unintended consequence of recognizing women’s vulnerability to HIV. However, as the historical trajectory of global health responses to HIV demonstrates, global health narratives are subject to change (Treichler 1999). In the past, change came as mounting evidence demonstrated that existing narratives were insufficient. The perception that women were not at risk for HIV transformed into claims that “AIDS has a woman’s face.” The experiences of men with HIV can play a powerful role in pushing global health frameworks to recognize gendered vulnerabilities without making men the targets of blame. Further, the global health realm is not a unitary force in machismo blaming—­local ideologies and discourses play a role as well. In Santa Cruz, there is a pre-­existing sentiment that men will inevitably disappoint women. This sentiment is likely to linger, perpetuating the blaming of machismo for HIV. However, the recent work of local feminist organizations offers some interesting points to consider in terms of moving away from blaming machismo. In 2014, I attended a roundtable on “Decolonizing the Female Body,” hosted by the feminist organization Colectivo Rebeldía. This event was part of the organization’s ongoing efforts to make gender a central component of the larger political effort of decolonization. Viewing contemporary gender relations as a product of a colonized society, part of a focus of the roundtable involved discussing alternative routes for thinking about gender relations. A leader from the Chiquitano indigenous group commented that while she was growing up, people in her village never thought of the female body as sexualized and that it was only when people began migrating to the city that women became ashamed of their bodies. Other Bolivian scholars working in the Andes (e.g., Canessa 2005; Van Vleet 2002) have long commented on notions of gender complementarity among some indigenous groups in Bolivia. This does not preclude the subordinate position of women, as reflected in high rates of violence against women in these communities, but it demonstrates that multiple ways of thinking about gender relations exist in Bolivia. Despite this diversity, machismo has become a salient part of the local discourse on gender relations. As reflected by Colectivo Rebeldía’s activities, some people see this phenomenon as a result of colonization, with society structured around the ideologies of the dominant groups. A

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discourse of decolonization, when applied to gender, offers a new vocabulary for thinking about gender relations (Paulson 2016). As historically marginalized groups continue to gain greater opportunities to change Bolivian society, this could potentially include changes in gender relations and the discourses that frame them. The narratives of the men in this chapter in part reflect the ways that global health bodies have influenced local understandings of HIV. The national government is increasingly questioning the power of global health bodies, alongside international development agencies, seeing them as colonizing forces. Perceiving international development agencies as a continued source of external domination, the national government began to expel such agencies shortly before my arrival in Bolivia in 2013. As I neared the end of my fieldwork in 2014, this trend began to spur a sense of crisis for HIV funding among local organizations and activists whose agendas at times conflicted with that of the national government.

7 • THE BIOPOLITIC AL DR A M A OF HIV FUNDING

Prior to Magaly’s move to Montero, I went to visit her as she finished her work week on a Friday afternoon. At the time, she was working in the artisanal co-­op that was available to the women who used services at Epua in an attempt to provide job training and employment making local handicrafts. Epua paid the women who worked there a flat rate for each item that they made, and the handcrafted items were sold on the global market through companies advertising fair trade and support for jobs that empower women. That afternoon was only two days after the final day of Magaly’s conciliación. Magaly was the only person in the workshop that day, and we talked as she organized the coin purses, brightly colored suede with floral designs, that she had sewn over the past few weeks. She counted and recorded information about the purses, calculating how much pay she would receive for her work. Subtracting what she had spent on her bus fares back and forth to Epua, she reflected, “It’s not worth it to work here. Only during times like this, when I have no capital to invest to work at home. I can make more on my own selling in the market. I just lack the capital.” After about five minutes in the workshop, I realized we were both sweating profusely in the suffocating heat. “Do you want to turn on the air-­conditioning?” I asked, motioning toward the small air-­conditioning unit mounted on the wall above us. “I don’t know . . . I won’t be here much longer,” Magaly responded. Like the other women who worked there, Magaly never turned on the air-­ conditioning yet thoroughly appreciated the relief it offered when an Epua employee turned it on. Instead of opting for the air-­conditioning, we walked across the room to sit next to the window and turned on a small rickety fan. As we talked, Magaly examined one of her coin purses closely, pointing out how she 125

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had pieced it together incorrectly by mistake, commenting, “They won’t pay me for this one, since it won’t sell,” and sliding it over to me to take as a gift. Changing the subject, Magaly began to express her pain over how the conciliación had ended. She began, “It was never money that I wanted, but justice. Then they asked me to put a price on my daughter’s life, like she is a piece of meat that you can buy by the kilo.” She began to cry as she continued: RedVihda convinced me to file the charges. They used it for media attention and to justify their work to financers. But they didn’t see it through until the end . . . I’m not ignorant. We know that every time we sign their sign-­in sheets, it is money for them. They say they are protecting our rights, but in the end, they want the money. And I’ve seen how they use the money . . . There was one forum for RedBol that I went to in Cochabamba. They invited me to talk about what happened to me. I agreed, and I went. But then I learned they spent $40,000 on just the one forum. To me, I can’t justify that. We stayed at a nice hotel, where the president stays, with fine food. It is nice for everyone to get together as a group, but how can you justify $40,000 for one meeting? I felt like I was complicit by going. I couldn’t bring myself to go again. There are people who do not have food or bus fare to go to their appointments. The money exists to provide for people who need it, but do you see where it goes?

Magaly had a point. While her critique of the use of HIV funding placed the blame exclusively on civil society organizations, which were required to hold stakeholder forums as a condition to receive funding from the Global Fund, it introduces some compelling questions. First, who has a say in how such funding is used? Why, if the goal is to save lives, are large sums of money spent on activities that Magaly described as frivolous in comparison to the daily needs of patients who are supposedly benefitting from large grants? Public health officials posed similar questions to me as well, with one doctor critiquing the use of Global Fund money “to have a party.” The civil society organizations that host such events find themselves in a bind, caught between these critiques and Global Fund mandates of national stakeholder forums as evidence of community participation, which require the funding of travel, lodging, and food to bring representatives from different parts of the country to one city. As a result, with large amounts of money at stake and disagreements over the use of such funds, biopolitical dramas begin to unfold at the local level. Such dramas “expose the inconsistencies, the contradictions, and even the violence that lurk within contemporary forms of humanitarian compassion,” with the potential to generate new forms of suffering (Willen 2010, 505). I use the term biopolitical drama to describe the disagreements and tensions that unfold as local institutions, governmental bodies, and international organizations generate policies and regulations



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that guide HIV interventions and the allocation of global health financing at the local level. In this chapter, I dissect the ways that biopolitical dramas unfolded in the midst of an AIDS funding crisis and the ways that individuals became caught up in these dramas. The biopolitical drama surrounding the funding of HIV programs in Bolivia has been ongoing since the Ministry of Health documented the first case of HIV in 1985. Various stakeholders, including local HIV-­related NGOs, international development organizations, and the national government, have played a role in developing HIV programs at the local level. As each of these institutions has its own agenda, tensions develop and dramas unfold. International development organizations dealing with health operate by funneling resources to disease-­ specific health programs. The Global Fund, in particular, does so in the name of saving the greatest number of lives with the resources available (Global Fund 2013). The national government, with an agenda of decolonization, seeks to distance the country from international organizations that it sees as vestiges of colonialism. Bolivian-­based NGOs that receive funding via international organizations are under constant pressure to match their agendas with the goals of international organizations in order to maintain funding, yet the national government treats these NGOs with greater suspicion because of their ties to external organizations. The tensions produced by these competing agendas reached new heights in 2014, when the Global Fund froze Bolivia’s grant (see chapter 1). Despite the often competing agendas of the various stakeholders involved in this drama, gender was a central focus in discussions of who was deserving of resources and on what grounds, and the AIDS funding crisis offers a window into understanding the gendered politics of life. In interrogating biopolitical dramas, it is important to consider the role of biopower, or the ways that institutions exert power and control over populations (Foucault 1976), which includes the “strategies for intervention upon collective existence in the name of life and health” (Rabinow and Rose 2006, 195). While Foucault focused on the ways modern states exert control, others (Ferguson and Gupta 2002; Redfield 2012) have expanded the analysis to include new modalities of governance via the proliferation of NGOs, international organizations, and multilateral agencies in poor countries. In weakened states, such organizations have taken on functions of the state, such as providing health services. While humanitarian goals make the workings of these institutions appear apolitical and beyond question, political decisions with underlying moral agendas are fundamental to how such organizations operate (Fassin 2009). In Bolivia, the state has historically had limited involvement in HIV interventions, with the Global Fund, local NGOs, and international development agencies holding greater power than the national government in developing HIV programs. Under such circumstances, medical anthropologist Peter Redfield (2012, 158)

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asks, “What might biopolitics look like without the state?” Given the recent political transformations in Bolivia, I reframe this question to explore what biopolitics looks like with the entrance of a previously absent state. The biopolitical drama surrounding the entrance of the state into HIV programs reflects some of the broader tensions that have emerged under the MAS government.

The Entrance of the State “Mr. President and Vice President, you have killed me!” Judge Gualberto Cusi of the Plurinational Constitutional Court announced to a group of reporters in October 2014. His statement came in response to his suspension as a judge, which included the loss of health insurance that had been covering the costs of care for his “lung problem” (Página Siete 2014). The broader significance of Cusi’s claim was lost until December 23, 2014, when Bolivia’s minister of health, Juan Carlos Calvimontes, announced at a press conference that Judge Cusi was HIV positive. Calvimontes elaborated, divulging that Cusi also had drug-­ resistant tuberculosis and had been noncompliant with his tuberculosis medications. This announcement came without Cusi’s consent, and HIV activists responded with outrage. The subsequent unfolding of Cusi’s case revealed the ways that HIV activists perceived the Bolivian state as a potential threat to their health. With Bolivia’s history of dictatorships and political instability, the public has little faith in the ability of the government to work in their best interests. The actions of the nation’s highest public health authority showed that one’s HIV status could be used as a political weapon, further undermining faith in the national government among HIV activists. HIV activists demanded the immediate resignation of Calvimontes following his announcement, citing his violations of multiple laws that protected Cusi’s right to confidentiality. RedBol went as far as to create a Facebook page calling for Calvimontes’s resignation. Bolivia’s College of Medicine also denounced Calvimontes’s actions, citing a blatant disregard for medical ethics. Instead of a resignation, Calvimontes issued a public apology, while President Morales publically supported Calvimontes, claiming that the minister of health had revealed Cusi’s condition in an effort to “protect the public.” When President Morales announced his new cabinet in January 2015, he quietly replaced Calvimontes with the vice minister of health. Some journalists reporting on the case suggested that political motives had fueled Calvimontes’s actions (Oblitas 2015). At the time of the announcement, Judge Cusi, who had been an ardent MAS supporter at the time of his appointment, was under investigation for delaying the review of a recently passed law to regulate notary services. Two other judges were under investigation alongside Cusi. Under the Bolivian Constitution, the Plurinational Constitutional Court



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has the authority to review new laws to ensure their constitutionality. The failure of the court to review a law in a timely manner can lead to the investigation of members of the court. When Cusi requested more time to review the law due to health issues, Vice President Álvaro García Linera demanded that Cusi reveal his ailment, which Cusi refused to do. Subsequent reports suggest that the president and vice president used their positions of authority to obtain information regarding Cusi’s health condition, prodding Calvimontes to reveal the information in a manner that the journalist Monica Oblitas referred to as state terrorism. Further investigative reporting by Oblitas (2015) indicated that government officials are able to legally access the health records of any Bolivian citizen, raising concerns that stigmatized health ailments can be used as political weapons. After the public revelation, Cusi returned to the theme of political death, telling reporters, “Every day, the government continues killing me more and more” (Oxígeno 2014). The revelation of Judge Cusi’s HIV status illuminates the broader controversies that have emerged as the Bolivian state begins to exert more power in response to HIV and the political means used to garner this power. Prior to Calvimontes’s revelation of Judge Cusi’s HIV status, civil society organizations and people with HIV were already outraged by the actions of the Ministry of Health. Just months before, Calvimontes announced that the Ministry of Health would take over management of Global Fund grants. According to Global Fund guidelines, such a decision must involve a vote by the CCM. As described earlier, the CCM is an invention of the Global Fund that requires recipient countries to form a network of stakeholders, including representatives from NGOs, the Ministry of Health, and affected populations.1 Calvimontes’s actions violated election procedures, and subsequently, the Global Fund froze Bolivia’s grant. In the midst of the funding freeze, local activists and civil society organizations saw an opportunity to place demands upon the state to provide the HIV services that the Global Fund had been financing. However, they took the revelation of Judge Cusi’s HIV status as an indication that the national government saw people with HIV as political pawns. Thus while the state has assumed an increasing role in responding to HIV, the mechanisms for doing so have not been a welcome change for all parties involved. The Global Fund had been providing a steady stream of funding, but local stakeholders had reasonable doubts regarding what state-­sponsored HIV programs would look like in the absence of international funding.

Biopower and the Dispositif The system of relations and mechanisms for exerting power, or what Foucault (1980) calls the dispositif, involved in the development and implementation

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of HIV programs, has been in the midst of shifting power relations. The dispositif of HIV interventions involves actors from various realms—­the Global Fund, international development agencies that serve as Principal Recipients of Global Fund grants, the national government, the Ministry of Health, public health institutions such as CDVIR, regional and municipal governments, and civil society organizations such as RedBol and RedVihda. To develop a cohesive analysis, I focus on the three primary realms of biopower within the dispositif: public health institutions that act vis-­à-­vis the national government, the Global Fund, and civil society organizations. To a large extent, other actors serve as intermediaries among these groups. For example, the Dutch development agency Hivos served as the Principal Recipient of Global Fund grants, acting as an intermediary between the Global Fund and local organizations such as RedVihda that received grants. Each of these realms of biopower has different goals and agendas in terms of whose lives to prioritize and how to accomplish this in relation to HIV programs, with the potential for generating friction among these different realms. Further, gendered discourses of deservingness at times come into play in each of these realms, but in distinct ways. Decisions regarding policy implementation and resource allocation ultimately emerge at the intersections of these sources of biopower; however, each source maintains varying degrees of power within the overall dispositif. The Global Fund “In the hallways, people are saying, ‘We are all going to die!’ We hear that the Global Fund will leave, and we know without them, we will die,” Claudia told me frantically as we conversed in the cramped office space that I used to conduct interviews at CDVIR. CDVIR had assigned the office space to a part-­time nutritionist, and the nutritionist had kindly offered to lend me her office space on days she was not working. While the World Food Programme financed the nutritionist’s salary as part of a collaborative effort with the Global Fund, no one had established parameters for who should cover the expenses to enable the nutritionist to actually do her work. Her desk was no more than several cardboard boxes duct-­taped together in the shape of a table. On a regular basis, she made a request for a real desk from CDVIR. CDVIR responded that the Ministry of Health had not allocated funds for office furniture, and her request would need authorization from higher authorities. For nearly a year, she continued her work on her cardboard desk before finally receiving a used desk. The cardboard desk forced me to imagine what HIV care might look like without the Global Fund’s presence in Bolivia. If it took the Ministry of Health nearly a year to respond to a request for a basic piece of office furniture, how could patients rely on it for their immediate need of lifesaving care? As I spoke



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Figure 7.1. The nutritionist’s desk, made from card-

board boxes. Photo: Franco Reyes.

with Claudia across the cardboard desk, her words revealed a realistic fear of what might happen to people with HIV in Bolivia without Global Fund support, if patients had to rely on the Ministry of Health to determine their fate. The Global Fund holds power to grant or deny resources for HIV by dictating the maximum amount of grant money a country can apply for and holding the authority to approve, deny, or request revisions to grant proposals. Given the state’s desire to move away from disease-­specific health initiatives, it is reluctant to earmark resources for HIV. As a result, until 2014, the Global Fund was providing more than 75 percent of the funding for HIV programs in Bolivia. Because the Global Fund provided a majority of the funding for HIV, it held the greatest amount of power over the development of local HIV interventions. Thus the Global Fund was the central realm of biopower, despite the fact that its staff was the least familiar with the local dynamics of the epidemic. The biopower exerted by the Global Fund is a double-­edged sword. On the one hand, the Global Fund ensured that funds went directly to HIV initiatives, including lifesaving medications that might not otherwise have been available. The Global Fund’s mission statement emphasized, “We are investing the world’s money, to save lives.” The resources provided by the Global Fund do save lives, as women like Claudia would die without ARVs. Acceptance of the Global Fund’s resources, however, comes at a price. Public health officials expressed frustration with the imposition of vertical, disease-­specific health initiatives. Further, civil society organizations found that in order to gain access to resources, they had to design and implement programs that did not necessarily make sense given the local contours of the epidemic. As a result, local actors were simultaneously in a constant state of frustration with and yet reliant on the Global Fund. This

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is particularly evident in the contradictory policies of the Global Fund that claimed to prioritize women yet consistently removed programs proposed by local stakeholders, such as those aimed at women, from Bolivia’s grant proposals. The National Government / Public Health Institution Conglomerate The national government oversaw a complex range of actors that were often fragmented and at odds with each other in terms of developing public health responses. The Ministry of Health is the most important public health institution in Bolivia and falls directly under the authority of the national government as a part of the executive branch. Other important public health institutions fall under the authority of the Ministry of Health, meaning they are also indirectly under the national government. Most significant to HIV programs is the system of CDVIRs and the National and Regional HIV/AIDS Programs. The CDVIRs in each of the capital cities of Bolivia’s nine departments house their respective Regional HIV/AIDS Program, illuminating the relationship between these institutions. Also significant to HIV programs are the Departmental Health Services (SEDES) that fall under the authority of departmental governments. Complicating the relationships among these organizations is the fact that the CDVIRs are subject to oversight from both the national Ministry of Health and the Departmental Health Services. As departmental political leaders in Santa Cruz were often resistant to the agenda of the national government, public health employees at times became caught in the crossfire of competing political agendas. Although local public health authorities may at times be at odds with the health care agenda of the national government, ultimately the national government dictates policies on a broader scale. One public health official in Santa Cruz openly stated at a meeting, following Calvimontes’s announcement of taking over management of Global Fund grants, “I am not in agreement with the Ministry of Health, but I am in a difficult position where I have risks if I say anything.” Public health institutions have also developed in the context of a history of neoliberal policies that have created an infrastructure suited for vertical, disease-­ specific public health interventions, as evidenced by the existence of the CDVIRs as separate centers focused on HIV. As the national government promotes communitarian health care policies, these policies are not only met with resistance by local authorities, but the public health infrastructure itself is ill equipped to immediately handle such changes. For example, health authorities have been trying since 2009 to shift HIV care from CDVIRs into public health centers with minimal success. This is in part because patients feel like they receive better care at the CDVIRs, since other public health centers do not necessarily have staff with experience treating patients with HIV.



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Despite tension within public health institutions, there is a common cause in bringing attention and resources to women and children. Recent health care reforms that have expanded insurance coverage to women and children have received widespread support, even among MAS opponents. However, this focus on gender often involves a paternalistic approach that focuses on women as mothers, or, as one public health official explained, “Women as doors to the rest of the family.” This sentiment is institutionalized in contemporary laws and programs and is most clearly reflected in the policies of SUMI, which provides select health care services to women and children under the age of five. The services available under SUMI consist almost exclusively of reproductive health care programs, emphasizing the value the state places on women for their reproductive capacities. As Magaly’s case demonstrated, however, public health claims of prioritizing pregnant women do not necessarily result in positive health outcomes for women. As the Ministry of Health falls most directly under the authority of the national government, it often prioritizes other political goals over HIV. With the 2013 expulsions of international development agencies such as USAID and IBIS, alongside attempts to claim managerial power over Global Fund grants, it is clear that the national government wants to demonstrate its autonomy by limiting the influence of organizations it associates with neoliberal agendas. This goal comes at a cost, since the expulsion of these organizations resulted in a loss of funds for HIV. For the national government, issues of power are at stake, and maintaining decision-­making power has at times been a higher priority than ensuring continued funding for HIV programs. Civil Society Organizations Civil society organizations include groups of citizens organized around a common set of goals and demands. Many of these organizations have established themselves as NGOs in their efforts to seek international funding. Epua, RedVihda, and RedBol are among the local civil society organizations with an interest in HIV. Some civil society organizations, such as RedVihda, have emerged as grassroots efforts and have successfully applied for international funds to support their work. Others have been the result of international organizations encouraging the development of local NGOs as a means of executing programs on their behalf. Some civil society organizations, like RedBol, serve more as community organizing tools and receive little in the way of international funds. Among the three central realms of biopower, civil society organizations hold the least amount of power but often have the most at stake and are the most intimately familiar with the situations of people with HIV, as many representatives from these organizations are HIV positive. The economic survival of

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these organizations and the physical survival of individuals who work for and seek support at these organizations depend on continued financing from international donors such as the Global Fund. These organizations and their employees constantly find themselves playing to the priorities of these donors, even if these priorities do not make sense in the local context and constrain their ability to respond more effectively to the epidemic. For example, LGBT organizations have received a steady stream of funding from the Global Fund, yet, as described earlier, a significant portion of men who have same-­sex relations do not identify as gay or bisexual and seek to distance themselves from LGBT organizations. When actions on the part of the national government and public health care infrastructure put the funding status of civil society organizations in jeopardy, these organizations express extreme frustration and outrage, contributing to a constant state of tension between civil society organizations and public health officials. Further exacerbating this tension is the fact that public health officials often view civil society organizations as an appendage of international organizations, since their funding often originates in this arena.

Axes of Tension Actors from these realms of biopower must interact as part of the development of HIV programs. The Global Fund mandates this interaction, as its policies require the development of a CCM that includes representatives from various stakeholders who have regular meetings in order to demonstrate community involvement as a part of developing programs. To deconstruct the biopolitical dramas that emerge during these interactions, I use the term axes of tension to describe the points where different realms of biopower intersect, highlighting how the intersection of these various actors creates different sets of tensions. For example, the tension between civil society organizations and the Global Fund is distinct from the tension between civil society organizations and public health institutions. In the midst of these tensions, the CCM produces grant proposals, the Ministry of Health develops health policies and guidelines, the national government makes decisions about how to allocate health care resources, and civil society organizations develop HIV prevention and care programs in the hopes of maintaining future funding. The policies and resource allocation that emerge in the midst of significant tensions have consequences in terms of the types of care and resources that people with HIV are able to access. Access to resources can foster life, while an inability to access them can allow a person to die. Thus the political decisions that underlie resource allocation are a politics of life.



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The Civil Society / Public Health Institution Axis “Magaly’s case is emblematic. Yes, it is different from other cases, but it is emblematic of the situation of people with HIV. What happens will represent a larger message. There are people at fault. We need to show that the law will guarantee recourse to people with HIV,” began Magaly’s lawyer during the first day of her conciliación. The atmosphere was tense. About 25 people packed the conference room in one of the city’s finest hotels. The doctors involved in the case intentionally requested to schedule the conciliación to coincide with a national meeting of employees from the various Regional HIV Programs throughout Bolivia. Because of this national meeting, the director of the National HIV Program and members of her support staff could participate in the conciliación. Along with members of the National and Regional HIV Programs, who situated themselves around the accused doctors, representatives from local civil society came “in support of Magaly,” according to a text message I received about the event. Further, two representatives from the local ombudsmen’s office, Defensor del Pueblo, were present. According to one, who introduced himself to me as a lawyer, they were there to “observe that human rights were upheld, but not take sides.” And there were, in fact, two distinct sides—­public health officials in support of the accused doctors and the representatives of civil society in support of Magaly. While a lawyer from Casa de la Mujer represented Magaly, the accused doctors did not bring legal representation. Instead, a public health official at the national level, Dr. Villarroel, who claimed impartiality, did most of the speaking on behalf of the accused doctors. The roughly hour-­long session consisted primarily of Dr. Villarroel indulging in long monologues, listing the reasons why Magaly’s case had no grounds. She cited all the things that Magaly could possibly ask for on behalf of her daughter—­education, health insurance—­saying that these were all things already guaranteed to her under the Bolivian Constitution. Juana, the peer educator who was sitting next to me, released a deep sigh at one point, forcing me to remember a conversation we had about the lack of force behind Bolivia’s seemingly progressive constitution. It is a constitution that guarantees a right to health but allows insurance companies to deny coverage for claims related to HIV. That was for those lucky enough to have any sort of insurance, since 57 percent of the population had no form of coverage, and efforts to develop social insurance programs had been piecemeal (Ledo and Soria 2011). We both knew the guarantees that Dr. Villarroel spoke of carried little weight. Dr. Villarroel finally gave Magaly the opportunity to speak, demanding, “Tell us what else you could ask for!” As Magaly began to speak, recounting the pain of watching her child suffer, Dr.  Villarroel answered a phone call, turned her

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back toward the audience, and proceeded to talk on her phone for several minutes. No one intervened. There was no resolution to the first day of Magaly’s conciliación. Instead, both parties agreed to schedule another session the following week. At the next session, only a small number of people were present—­Magaly, the two accused doctors, the two representatives from Defensor del  Pueblo, two representatives from civil society organizations, and me. Magaly’s lawyer arrived nearly an hour late. As Magaly’s lawyer said, “Magaly’s case is emblematic.” While in her statement she was referring to the systematic mistreatment of people with HIV within the health care system, Magaly’s case was emblematic in other ways as well. It foregrounded the constant tension between civil society organizations and the public health care system. The way that Magaly’s case pitted representatives of civil society organizations and public health officials against each other represented a broader tension between these two sets of actors. Magaly’s case was not the only occasion where I observed this tension. Months later, I observed a meeting hosted by the Santa Cruz Committee for HIV. A subgroup from this committee had begun a project documenting cases of reported violations of rights of people with HIV. As a part of the meeting, the subgroup presented its findings, which included a discussion of reports of patients who experienced discrimination and violations of their confidentiality as well as reports of the prison having run out of HIV tests on multiple occasions. After the group presented its report, an important public health figure at the departmental level accused the committee of bias in its method of documenting cases. He continued, “You have only documented cases from patients. What about reports coming from us when patients are not fulfilling their obligations?” He went on to cite the case of a woman who continued picking up her husband’s medications from CDVIR for three months following his death. No one from civil society responded to CDVIR’s request to investigate what the woman had been doing with the medications. Another public health official from the national level criticized the group for not considering patient complaints within the context of the limitations of the health care system. The heated debate abruptly ended when the departmental public health representative stood up to say, “I have another meeting to go to. I came today because I wanted to discuss pressing issues . . . We have failed to progress to a discussion of those issues.” Following the meeting, several representatives from civil society organizations expressed bewilderment over the debate that had transpired, which they perceived to be a straightforward effort to document human rights abuses. With a weak public health care system and limited resources, patients routinely receive substandard care. The Committee for HIV felt that an appropriate measure for combating this mistreatment should begin with the systematic



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documentation of patient mistreatment. As Magaly’s case illuminated, civil society organizations also drew on legal measures as a tool for demanding better treatment of patients. However, actors within public health institutions often took offense to this strategy, citing structural constraints, such as insufficient financing for medical equipment and medications, that prevented them from providing optimal care. They further pointed out that these constraints existed for all patients, not just patients with HIV. In another example, during the entire month of April 2014, CDVIR had a shortage of lab materials needed to conduct regular CD4 count and viral load tests that people with HIV should undergo every six months. When CDVIR announced that these lab tests would not be available for a month, RedVihda immediately filed legal charges, citing violations of the HIV Law that declared the right to comprehensive care for people with HIV. Although no one expected anyone to follow through with the legal charges, the threat was a way to draw attention to the failure and demand better conditions in the future. The director of CDVIR expressed frustration over this measure, claiming that the problem was with the Ministry of Health not sending the necessary resources on time. Feeling like there was nothing in his power to fix the situation, RedVihda’s actions only served to irritate him.

Figure 7.2. Message announcing that CDVIR was out of materials for conducting lab

tests.

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Another doctor, Dr.  Ribera, commented on this method for making demands: “Instead of talking about their concerns or developing a compromise, they go directly to shouting complaints and filing charges, demanding their rights instead of seeing the care they receive as a privilege.” However, throughout my fieldwork, I witnessed numerous attempts at congeniality on the part of representatives from civil society organizations, but they received no response or a hostile response. For example, one day in the waiting area at CDVIR, I watched as a peer educator politely invited a public health official to a workshop that RedVihda was hosting on the importance of sensitivity to the needs of people with HIV. The official remarked, “I don’t have time for that crap.” Further, Dr. Ribera’s remark that the resources available to people with HIV are a “privilege” reveals the frustrations that some health care professionals have with disease-­specific interventions. This disease-­specific approach provided free HIV treatment within a system that failed to uphold the constitutional right to health for a majority of the population. According to Dr.  Ribera, with scarce health resources available, people with HIV should have been grateful for the care they received. As tension persisted over what type of care patients with HIV deserve and what types of care are available, individuals like Magaly became pawns in the game. Magaly repeatedly lamented feeling like RedVihda used her case to demonstrate to its financers that the organization was engaged in legal advocacy worth financing. While she felt that RedVihda failed to support her until the closure of her case, she also argued that CDVIR simply wanted to “wipe their hands clean” of her. In 2014, following her conciliación, only one doctor at CDVIR was willing to see Magaly as a patient. The other doctors refused. According to Magaly, they resented her for pursuing her case against colleagues, whom they viewed as competent within a struggling health care system. The Global Fund / Civil Society Organizations Axis Bolivian HIV activist Violeta Ross, the daughter of an Evangelical minister, published an article following the arrival of Bolivia’s first Global Fund grant. In this article, Ross (2005, 1) stated, “We realize that Goliath has come to Bolivia. A new bureaucratic giant has been born with project approval.” The bureaucratic giant she referred to was the Principal Recipient. As the Global Fund maintains no local presence, it names a Principal Recipient, which in Bolivia has always been an international development organization.2 The Principal Recipient then grants funds to subrecipients and oversees the local use of funds. Ross went on to explain how the Global Fund requirements of electing a CCM and naming a Principal Recipient created a new local drama. The CCM and Principal Recipient act as intermediaries between the Global Fund and civil society. However, as



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Ross demonstrated, civil society came to view these new bodies as an extension of the Global Fund, creating a Goliath native to Bolivia. Although a combination of public health officials, representatives from civil society organizations, and members of affected populations elect the CCM in a national stakeholder forum, members of the CCM, especially the president and the Principal Recipient, must then enact Global Fund priorities. Potential subrecipients then view the approval or rejection of grant applications as an action of these intermediary bodies. According to Ross, with massive amounts of money at stake, this process has often created local rifts as individual members of the CCM and employees of the Principal Recipient are then viewed as serving their own self-­interests through how they disburse the funds. However, by comparing statements made by the CCM president to Global Fund funding priorities, it becomes clear that the CCM merely makes decisions in line with the priorities of the Global Fund. Because of this, the tension between Global Fund priorities and what civil society views as important often unfolds at the local level. For example, because the Global Fund mandates that funds go to what it defines as high-­impact interventions, which includes programs that target populations with a concentrated epidemic, LGBT organizations have received a steady stream of funding. When the CCM has proposed programs aimed at reaching women, these proposals have been unsuccessful in receiving funding on the grounds that such interventions would fail to produce the numbers required for the interventions to be considered high impact. The funneling of a large portion of overall funds through LGBT organizations has at times generated a local rift between LGBT activists and female HIV activists. Ross has been an outspoken critic of the lack of resources reaching women. While little of Bolivia’s global health funding for HIV goes to women, women have become some of the most high-­profile HIV activists. Ross, for example, has appeared in international news outlets, including in a BBC report. Further, she is frequently selected by global health bodies such as UNAIDS to participate in workshops and conferences, traveling globally to do so. Tensions between the Global Fund and civil society go beyond gender. With growing concerns about the stability of HIV funding, the Committee for HIV decided to create a Regional Coordinating Mechanism (RCM) modeled after the CCM but specific to the Santa Cruz department. While this arguably created an additional layer of bureaucracy, the purpose was to strategize ways to retain Global Fund grants and to put pressure on local authorities to commit additional resources to HIV. At the first RCM meeting, held in Santa Cruz in March 2014, I watched tensions unfold between civil society organizations and “Goliath.” The president of the CCM flew into Santa Cruz to lead the meeting.

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The RCM arranged the meeting to have the president explain the Global Fund’s new funding model to the local committee. The meeting took place in a small conference room in the building that housed the Departmental Health Services. A group of more than a dozen people, including representatives from civil society organizations and local public health officials, crowded around a set of rectangular tables. The president of the CCM began the meeting by explaining the new funding model, how much money Bolivia would be eligible to apply for from the Global Fund, and the new grant application process. He then went into an explanation of what types of programs would likely receive funding under this new model. “Priority will be given,” he continued, “to sustainable programs with the highest impact. It is not likely that support groups or peer educator programs will continue receiving support, since these programs are not high impact. The goal is to improve quality of life through high-­impact programs.” The audience immediately reacted. One activist spoke up: “Peer educator programs and support groups, these are inventions of the Global Fund! We began these programs because of the Global Fund, and now they aren’t high impact? Our peer educators have become the most visible activists, and what will happen to the activism? We need the activism to put pressure on the government so that we can have sustainability when the Global Fund leaves. And we know, we don’t have hard evidence, but we see that peer educator programs help with the transmission of information and detecting negligence.” Another activist joined in, claiming that the Global Fund was using an external evaluation of the peer educator programs as the basis of its claims, saying, “None of us have even seen the results of this study. We need an internal evaluation, not an external one!” The meeting ended politely. Following the meeting, several attendees continued to express outrage over the potential loss of peer educator programs, pointing out that under this new model, the focus seemed to be exclusively on ARV rollout. As per the Global Fund grant agreement, the purchase of ARVs would soon be turned over to the national government anyway. What good was the Global Fund if they were going to stop funding for everything that civil society saw as most important? This meeting highlighted the frustrations that civil society organizations face when dealing with the Global Fund and its appendages. As the Global Fund dictates the types of programs that can ultimately receive funding, organizations are left having to terminate programs that they see as beneficial. As Magaly pointed out, large amounts of money exist, yet very little of this money goes toward fulfilling basic needs, such as bus fares, that enable patients to stay in care. The Global Fund operates under a set of constraints as well. As a financing organization, 90 percent of its funds come from the 30 wealthiest governments



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in the world. The other 10  percent come primarily from charitable organizations and private foundations (Rivers 2012). The Global Fund must answer to these donors by producing numbers of lives saved and evidence of the effectiveness of interventions. Peer educator programs were coming up on the chopping block for their failure to produce the desired numbers because such programs are so time intensive. Peer educators must spend hours on a bus, getting lost in unfamiliar neighborhoods, to meet with just one patient at a time. While such meetings can mean the difference between a patient staying in care and having the informational tools necessary to stay healthy, they do very little in the way of increasing the sheer numbers of people reached by an intervention. The competing goals of civil society organizations and the Global Fund produce a new set of biopolitical dramas through disagreement over the best use of funds. The Global Fund is able to maintain a fair distance from this biopolitical drama by shifting responsibility down to the CCM and Principal Recipients, creating what Ross (2005) calls a “bureaucratic giant” or an entirely new field for these dramas to play out. The National Government / Global Fund Axis On May 27, 2014, the Bolivian minister of health, Juan Carlos Calvimontes, sent a letter to the president of the CCM, declaring that the Ministry of Health would assume the responsibility of managing Global Fund grants. The letter stated that this decision came, “in the public’s best interest for their health, and for the state’s corresponding obligation to the health of the individual, the family, and the entire population.” It then went on to clarify that “this responsibility comes through the Ministry of Health, which is in charge of national health policy, regulations, planning, monitoring, and control over all national territories.”3 This takeover was a violation of Bolivia’s grant agreement with the Global Fund. In response, the Global Fund froze Bolivia’s grant. When the Global Fund freezes grants, it still disburses funds for ARVs and testing supplies, but it cuts off other support programs. These funds covered things such as the operating costs of HIV organizations and peer educator programs. In Bolivia, such programs operate almost exclusively under the category of civil society organizations. Thus it was civil society that became most frantic in efforts to have funds reinstated. This drama began to unfold in July and August 2014, just before my return to the United States. However, from what I pieced together from email correspondence, social media, news reports, and a return visit in 2016, Calvimontes later denied sending the letter. Since civil society organizations had circulated this letter widely, no one believed Calvimontes’s claim. However, his denial was taken as a surrender to the demands of civil society, opening up the ability to form an ad hoc committee for naming a new CCM. By the end of 2014, Bolivia had a new CCM, which paved the way to having the Global Fund grant reinstated.

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The unfolding of what one HIV activist called a “mini coup” from the state brings up the question, What produces such drama over who controls Global Fund grants? Part of this issue lies in the fact that the Global Fund puts significant obligations on recipient nations as a condition of receiving grants, yet the state has little power in deciding how to use incoming funds. For example, the Global Fund requires that Bolivia, through a combination of national and departmental funds, provide 20 percent counterpart financing. In other words, to receive a $41  million grant, which is how much Bolivia received during the 2009–­15 grant cycle, the government needed to contribute $10.25 million. This amount had to be divided among the three Global Fund target diseases—­HIV, tuberculosis, and malaria. The government had some freedom in deciding how to use this $10.25  million but had little power in regards to the $41  million coming from the Global Fund. The mixed success of programs dealing with each of these diseases led some public health officials to question the efficacy of the Global Fund’s disease-­specific strategy. Malaria eradication initiatives have experienced significant gains, with the number of cases of malaria dropping by 76.5 percent between 2000 and 2014. While malaria cases were beginning to drop prior to the presence of the Global Fund in Bolivia, a centerpiece of the Malaria Free Bolivia program financed by the Global Fund was to train community health workers to detect and treat cases rapidly. This strategy was possible given that malaria was confined to specific regions. By 2014, 97 percent of reported malaria cases involved the initiation of treatment within 24 hours. In that same year, the Ministry of Health reported only one death from malaria (PAHO 2017). Tuberculosis interventions have had less success, focusing mainly on treatment efforts for a condition that is endemic across the entire country. Although the incidence rate has undergone a consistent, steady decrease since 2000, Bolivia consistently has one of the highest disease burdens of tuberculosis in the Western Hemisphere, with an incidence rate of 117 per 100,000 in 2015 (WHO 2016a). Some public health officials claim that the counterpart-­financing mandate from the Global Fund makes it more difficult to develop a stronger, more comprehensive national health care system by funneling resources to specific conditions. According to the director of the Regional HIV/AIDS Program in Santa Cruz, CDVIR is attempting to decentralize its services so that patients can seek care in various clinics and hospitals instead of having only centralized clinics where they can receive their medications. However, when the Principal Recipient calculates government contributions, it fails to consider the infrastructure and human resources costs that go into this decentralization process. From his perspective, the Global Fund was vastly underestimating local funding contributions for HIV care.



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Further, among public health officials, there is substantial criticism over targeting only specific diseases when the entire health care system continues to suffer. One doctor at CDVIR asked me angrily, “Why should patients with HIV get free care and no one else? In Bolivia, if you have cancer, you die. No one pays for your cancer treatment. If you have HIV, everything is free. It’s the only disease where everything is free.” A few months later, this doctor’s wife died of cancer. Aside from the tension that arises over resource allocation, the symbolic violence that characterizes the experiences of people with HIV within the health care system exists at the highest levels of the public health hierarchy. This became clear when the national government, via its minister of health, used Judge Cusi’s HIV status as a weapon to enact a social death upon him as a part of its political agenda. Activists saw such a blatant disregard for the basic rights of people with HIV as indicative of the government’s lack of willingness to engage in a meaningful response to the epidemic. In the absence of a strong national health care system, HIV programs remain dependent on Global Fund grants to exist. However, the national government’s agenda of freeing itself from what it views as the vestiges of a neoliberal agenda put the continuation of funding at risk. Such a tension perpetuates biopolitical dramas.

Biopolitical Dramas as a Gendered Politics of Life Biopolitical dramas are “a side effect, or adverse reaction, that comes with the existence of a large amount of funding” (Ross 2005, 1). What emerges amid these biopolitical dramas is a politics of life. As dramas unfold, funds are frozen, programs are halted, and individuals lose access to important services that can mean the difference between life and death. Further, as Judge Cusi’s and Magaly’s experiences demonstrate, individuals become pawns in the drama. Despite the often competing agendas of different biopolitical players, the Global Fund mandates collaboration among stakeholders through the CCM in order to demonstrate local stakeholder participation in program development. However, viewing the process in this light is misleading because the Global Fund still has the ultimate power to approve budgets and disburse funds. Thus biopolitical dramas unfold around developing programs and policies that fit into the constraints set by the Global Fund. The process of mandating compromises effectively becomes a politics of life because resulting programs define what resources will exist and who can gain access to these resources. Various sets of actors ultimately weigh in on policy decisions; however, each set of actors has a different understanding of what appropriate interventions should look like and maintain varying degrees of power as compromises unfold regarding these

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differences. The Global Fund concerns itself with producing numbers of lives saved, but its method of producing these numbers at times overlooks the ethnographic significance of how resulting programs unfold. Public health institutions feel pressure to simultaneously transition to having greater universal accessibility in line with the agenda of the national government while being constrained by the funding mechanisms of disease-­specific global health funding mechanisms. Civil society organizations find themselves developing whatever programs are necessary to maintain funding, even when they know there are other uses of funds that could more effectively keep people with HIV healthy. In this grand scheme of the power dynamics of funding for HIV, the Global Fund ultimately holds the most power in the development of local HIV interventions and the most power over the life and death of people with HIV. Global health initiatives, including those of the Global Fund, incorporate a moral discourse of saving lives and improving health, making their actions appear righteous and unquestionable (Redfield 2012). This is particularly true in relation to discourses of prioritizing women. It seems counterintuitive to question the drive behind attempts to save women and children. However, these discourses play a powerful role in framing the policies that guide HIV interventions and have a direct bearing on individual lives.

8 • DECOLONIZING GLOBAL HE ALTH

In June 2016, I returned to Santa Cruz after a two-­year absence. In planning my return visit, I had been in touch with a number of people who hinted at deepening financial troubles for HIV programs. Significantly, Bolivia’s most recent grant with the Global Fund had ended in December 2015. Bolivia was eligible to apply for continued funding in the new funding cycle, and the CCM had submitted a proposal for a grant to begin in September 2016. As the CCM awaited a decision on the grant, which was later approved, the flow of funding from the Global Fund had temporarily stopped once again. Further, the Global Fund had made it clear that Bolivia was in a transitional phase: funding for Bolivia would eventually end. While Bolivia could expect to receive $8.7 million to support HIV programs until mid-­2019, there would be no guarantee of funding beyond this period. With increasing pressure for development agencies and global health initiatives to invest funds in locations with the greatest need, coupled with Bolivia’s rise from a low-­income to lower-­middle-­income nation and a government that is often resistant to external interventions, HIV-­related organizations within Bolivia had been losing other sources of financial support as well. Juana, who had worked for years as a peer educator with Epua, gave me the first hint of the deepening crisis for HIV services. In the month leading up to my return, we had a lengthy conversation in which she revealed that she had lost her job at Epua due to insufficient funding. Her unemployment had left her in a state of financial insecurity, accompanied by a deep sense of loss over no longer having a job that had given her satisfaction and a feeling of purpose. Juana’s revelation left me at a loss for words. Her support of Cassandra had been transformational in how Cassandra experienced her condition. I had accompanied Juana on other home visits and acompañamientos with patients, where her counseling 145

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and presence had clearly helped women navigate the health care system and often provided a much-­needed source of social support. Several doctors whom I had worked with referred to Juana as the most effective peer educator in Santa Cruz. I wondered, if Juana had lost her job, what else had changed since I had been gone? I arrived in Santa Cruz on a Saturday, and the following Monday, I began making my rounds throughout the city to visit the organizations and individuals with whom I had previously worked. One of my first stops was Epua. I was unsure of what to expect following my conversation with Juana. As I walked the several blocks between where I had gotten off the bus and Epua, I gradually began to make out the building’s entrance. The brightly colored paint was beginning to chip off the cement wall, and the meticulously designed signage was fading away. As I reached up to ring the doorbell, I felt disheartened by the silence that had replaced the noise of playing children. After several minutes, Marion, a program manager for Epua, came to the door. Marion was one of two employees left working at Epua. Just over a month before my arrival, Epua had lost its major source of funding due to a failure to achieve its project indicators. In other words, Epua had not reached enough women through the programs it had offered. This problem began with the closing of the childcare program in 2013 due to an earlier reduction in funding. Without childcare, women could no longer easily participate in Epua’s other programs. At the moment, all programs at Epua had been suspended, and the employees that remained were conducting an evaluation alongside its umbrella organization, Levántate Mujer, to determine its next steps. Later that day, I returned to my rented room and looked back at my field notes from the first time I had visited Epua in 2010. In my notes, I had commented on the dozens of screaming children playing in the courtyard, the sewing and ceramics workshops where women busily worked, and the sizeable group of women who had come in for a job skills training session. At the end of my notes, I mentioned a pristine flower garden in the courtyard that was being tended to by Anita, a woman who was living at Epua. The scene I depicted was a far cry from the empty courtyard and abandoned sewing machines. Even Anita had left Bolivia to seek work in Chile when Epua could no longer support the women who had been working and living there. As I made stops at other organizations and health centers over the next several days, the story repeated itself. RedVihda, which had been the most prominent HIV-­related NGO in Bolivia, was reduced from a staff of roughly 10 full-­time employees and about a dozen volunteer peer educators to just 2 employees who were doing a majority of their work without pay. To continue with the support groups that had long formed the basis of HIV activism in Santa Cruz, Red­Vihda was holding weekly raffles. As people showed up for the support group, they



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bought raffle tickets as a way of generating income for the organization. Following my visit, RedVihda did regain funding once the new cycle of Global Fund grant money went through in late 2016. When I returned to Comunidad Encuentro to visit the hospital staff, I had not planned to visit any of the patients, thinking it was unlikely that anyone I knew would be there. Yet as I spoke with the nurse, she began to rattle off the names of current patients. “You know Roxana and Carolina, right?” Both women had arrived at Comunidad Encuentro near death more than two years earlier. Both women were still there, and while they had surprised me by surviving, neither was close to release. Both had lost their ability to walk, and so the two women were in desperate need of physical therapy, to which they had little access. Comunidad Encuentro at times had funds to bring in a physical therapist, but its financial situation too had suffered. To help compensate for a greater demand for services that came with the recent increase in HIV cases alongside diminished funding, a volunteer was providing patients who were nearing their release with supplies and training to make handicrafts. The purpose was to have the patients make handicrafts that the hospital could sell to generate income for its emergency medication account. While this account had already been under constant stress, the financial need had become even greater in recent months. The temporary halt in Global Fund support meant that there was no longer funding for medications to treat opportunistic infections such as toxoplasmosis that had been provided by the Global Fund. Although the national government had fulfilled its earlier promise of providing funding for first-­line ARVs, it was not funding additional medications or forms of support or care. This influenced the care of patients not only at Comunidad Encuentro but also at CDVIR. In addition to a loss of funding to treat opportunistic infections, CDVIR had to cut several employee positions that had been financed by the Global Fund. The nutritionist, whose position had involved a collaborative effort between the Global Fund and the World Food Programme, was among those who lost her job. Further, CDVIR could no longer offer patients access to second-­line ARVs, and there was fear that as the supplies for viral load and CD4 count testing diminished, there would be no funding to restock. Alongside this loss of funding, worrisome trends were surfacing. According to Dr. Ribera, who was in charge of the HIV program at a major public hospital in Santa Cruz, his patient list had skyrocketed. He went from having a few dozen patients in 2014 to having more than 200 in 2016. While the process of decentralization had involved an attempt to shift patients out of CDVIR and into other health centers, Dr. Ribera did not attribute his increased patient load to decentralization. Instead, he explained that when patients showed up at his hospital as opposed to CDVIR, it was most often because they were in advanced stages of infection and in need of intensive hospital care. Many of his patients did

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not last long. Those who made it to his regular patient list recovered enough to leave the hospital and continue with follow-­up care. Just outside of Santa Cruz, in the satellite city of Montero, Magaly had begun working as a peer educator. This was work she did without pay, after the doctor in charge of HIV care in Montero’s public hospital begged for her help in following up with patients who had not returned for their scheduled appointments following a diagnosis and prescribed treatment. After a full day of work in her market stall, Magaly used her own earnings to take a motorcycle taxi to what is often a vague, and sometimes nonexistent, address. When she found a patient, he or she was very often in the late stages of AIDS. As Magaly explained, “It is very hard. Some don’t understand what is happening or why they need the medication. A lot have tuberculosis and have no hope . . . I spend a lot of time talking to them, all of it is time away from my daughters, but I think about their kids and how there is no one else to help them. Sometimes I give them money out of my own pocket.” What was happening in Montero is indicative of what was probably also already happening or likely to happen in rural areas in Bolivia. Locals often refer to Montero as a ciudad flotante (floating city) because of the large mobile population of rural migrants in the city. With a steady source of seasonal employment opportunities in sugar cane and soy fields, rural migrants flow in and out of the city. Those who disappear from care, sometimes giving doctors false addresses so that they are impossible to track down, likely return to their homes in rural areas once the seasonal labor demand ends. As the history of the epidemic shows, HIV has had a tendency to follow these migratory paths (Farmer 1993; Goldenberg et al. 2014; Herdt 1997; Hirsch 2014).

The Paradox of High-­Impact Interventions Just weeks before my return to Santa Cruz, the United Nations General Assembly released a political declaration to end the AIDS epidemic by 2030 (U.N. 2016). The full declaration is a visionary document. In some regards, the declaration is also radical, calling for a fundamental restructuring of the global economy to end the poverty and inequality that have fueled the epidemic. The declaration goes as far as recognizing that tax havens and other means of tax avoidance have hindered poverty alleviation efforts by perpetuating a grossly unequal distribution of resources. Significantly, it describes a “call for urgent action over the next five years to ensure that no one is left behind in the AIDS response” (U.N. 2016, 3). To achieve this, the U.N. recognizes the need for funding, pushing for the sustained funding of the Global Fund as a means of supporting the end of AIDS.



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In short, the declaration sets a noble goal with a comprehensive set of recommendations to achieve it. However, Bolivia is representative of how and why the AIDS epidemic is likely to stubbornly persist if there are not significant changes in how global health programs operate. Despite the call to ensure no one is left behind in responses to HIV, the structure of HIV programs in Bolivia shows how fault lines have persisted. Even after nearly a decade of the Global Fund’s involvement, Bolivia has the lowest rate of ARV coverage in the region. While there are an array of structural factors such as extreme poverty and local hierarchies that contribute to this, it is important to reflect on the role of global health initiatives in producing fault lines. As the Bolivian case demonstrates, the structure of global health funding plays a significant role in shaping the local services that are available and how individuals experience these services. With limited funding available, funds go toward high-­impact interventions that will theoretically reach the greatest number of people perceived of as at risk. In Bolivia, the vast majority of funding for HIV has been funneled to programs aimed at the LGBT community, sex workers, and pregnant women. This approach leaves many people excluded from interventions, even when they are hypothetically a part of a target population. As Bolivia entered a new cycle of funding from the Global Fund, there was an opportunity to change this approach. According to the minutes from the 2016 CCM meetings, the director of the National HIV Program alongside HIV activists made a plea for a greater allocation of resources for heterosexuals. The CCM’s evaluation of the grant cycle ending in 2015 noted the saturation of the accessible MSM population and a need to rethink methods for reaching MSM who have been inaccessible. While the CCM notes did not mention this detail, many of the inaccessible MSM identify as heterosexual in all or some contexts of their everyday lives. Despite these pleas, the only substantial change to the allocation of funding was for new strategies for reaching MSM. The continued insistence on funding high-­impact interventions is enabling the stubborn persistence of HIV in Bolivia. It is important to ensure resources for groups where there are higher rates of infection. However, focusing almost exclusively on high-­impact interventions generates gaps, contradictions, and inconsistencies in the nexus of testing, prevention, and care for HIV. How can various stakeholders address these fault lines? The structural and symbolic violence that shape many people’s experiences of living with and seeking care for HIV call for long-­term structural changes that are not always feasible or practical in providing short-­term alleviation from suffering. Thus it is also important to think about short-­term, practical goals alongside long-­term goals.

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Interrogating the Right to Health Large-­scale efforts to treat HIV emerged as part of the “health as a human right” movement. Modern international human rights frameworks emerged in the post–­World War II era with the Universal Declaration of Human Rights (1948). This declaration has become recognized as international law, as its major tenets went into the development of the International Covenant on Civil and Political Rights (1976) and the International Covenant on Economic, Social, and Cultural Rights (1976). Within these two covenants, Article 12 of the latter outlines the right to the highest attainable standard of health, including an accessible health care system as part of upholding this right. However, there have been challenges to enacting the right to health and disagreements over what this right includes. Greater attention to the implementation of policies and laws aimed at ensuring the right to health came, in part, as a response to the suffering caused by the AIDS epidemic. Efforts of HIV activists who sought legal protections from discrimination and fought for legal guarantees for access to treatment became critical to the judicialization of health rights (Biehl 2015). Within these efforts, health as a human right has become a centerpiece of global health thinking. However, this leaves the question, What does it mean to call health a human right? Both the Global Fund and the Bolivian Constitution reference the relationship between health and human rights, but in very different ways. In outlining the fundamental rights of its citizens, the Bolivian Constitution states the following: I. Every person has the right to health. II. The

State guarantees the inclusion and access to health for all persons, without any exclusion or discrimination. III. There shall be a single health system, which shall be universal, free, equitable, intra-­cultural, intercultural, and participatory, with quality, kindness and social control. The system is based on the principles of solidarity, efficiency and co-­responsibility, and it is developed by public policies at all levels of the government.

The Global Fund has a section of its website titled “Human Rights” and includes a mechanism for reporting the violation of health rights. The introductory statement on its website includes the following question and response: Why is the promotion and protection of human rights so critical in the context of the three diseases? It is not only the right thing to do; it is also the way to make the Global Fund’s investments most effective. Human rights-­related barriers remain



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major obstacles to the uptake of HIV, TB and malaria services. Only when these barriers are removed through concrete programs and policies are people able to access lifesaving services and treatment. We will never be able to end the epidemics without promoting and protecting the human rights of people living with the diseases and of those most vulnerable to HIV, TB, and malaria. (Global Fund 2017b, emphasis added)

There are fundamental differences between how the Global Fund and the Bolivian Constitution conceptualize the relationship between health and human rights. While the Bolivian Constitution promotes a comprehensive focus on health care, the Global Fund sees the violation of human rights as a barrier to health care rather than health care itself as a human right. Further, the Global Fund simultaneously focuses on “investment” in their promotion of human rights. This focus on investment reflects the ways that a market-­driven model of health care is embedded in global health (Erikson 2016), and global health metrics uphold this model (Adams 2016). By defining target populations and developing interventions in terms of reaching the greatest number of people deemed at risk, this inevitably implies that some people will be left behind. This is the very nature of a market-­driven approach to health care. Making health care a commodity that can be bought or sold and viewing global health interventions as an investment places monetary value on health. Drawing on a human rights discourse gives this market-­driven model power and masks the fact that it is not providing health care for all (Willen 2011). The illness experiences of those who have been left behind in HIV interventions show the phenomenological dimensions of human rights discourse (Goodale 2009), or the ways that individuals experience health interventions implemented under the guise of a human rights discourse. If the Global Fund and other global health bodies are truly dedicated to the notion that health is a human right, then they must seriously consider the critiques emerging from local communities where they are involved. The tension that has emerged between the Bolivian national government and the Global Fund is indicative of a fundamental difference in how these two bodies envision health rights. The Bolivian government seeks to strengthen its public health care system. At the time of writing (early 2017), it perceives disease-­specific interventions that come with strings attached as limiting its ability to do so. If there is to be reconciliation between the competing agendas of the Bolivian government and the Global Fund, Bolivia’s efforts to strengthen its health care system need to be supported. This would involve returning to the earlier promise that funneling resources to HIV could help strengthen local health care systems in the process. This promise was central to gaining support for massive ARV rollout, yet it has largely gone unfulfilled.

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Decolonizing Global Health Relationships Efforts to decolonize Bolivia’s health care system have generated a paradox wherein the national government envisions health care for all yet has been unable to fully achieve this goal. Foreign support is able to fill in gaps for services that would otherwise remain inaccessible. However, the Bolivian government perceives this support as a continued colonization of the health care system. Global health bodies need to engage in a critical reflection of why their efforts might be perceived of in this way and embark upon a concerted effort to give more autonomy to local communities. This idea is nothing new. Promises of community participation became institutionalized within global health discourse with the introduction of the concept in the Declaration of Alma Ata of 1978, which set the goal of health for all by 2000 and continues to be recognized as foundational in the health-­as-­a-­human-­right movement (Morgan 2001). However, recent anthropological work (e.g., Crane 2013; Nguyen 2010) continues to point to how global health relationships mirror colonial relationships and generate unequal partnerships. While there have been some efforts to increase community participation in the development and execution of global health interventions, many of these efforts have been symbolic rather than dedicated efforts to consider the needs and desires of local communities. The Global Fund has been unique among global health bodies in that on the surface it gives substantial attention to community participation as a part of implementing interventions (Richey and Ponte 2011). The prerequisite of having a CCM as a condition to receiving grants reflects efforts to mandate community participation through the involvement of multiple stakeholders. However, use of the term community participation often serves as a political symbol, as a discourse that legitimizes global health interventions through the imagery of commitment to a democratic process (Morgan 1993, 2001). Through my observations of how HIV programs and policies unfolded via the Global Fund, the state, and civil society organizations in Bolivia, it is clear that community participation has not involved granting decision-­making power to local stakeholders. While representatives of key populations within the community have been able to take on leadership roles, which can be a source of empowerment for these individuals, the Global Fund has relied on community participation primarily as a means of reaching their own goals of generating target numbers of lives saved. In the process, the Global Fund often overlooks the concerns, ideas, and potential solutions generated by local stakeholders. In many instances, the propositions coming from local stakeholders could offer effective responses, but if these proposals do not align with the goals of the Global Fund, they fail to receive funding. Violeta Ross, an HIV-­positive activist who is a part of the CCM, summed up her thoughts on Bolivia’s most recent grant application process through



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the social media hashtags #MenosDinero #MasRequisitos (#LessMoney #MoreRequirements), expressing her discontent over funding and the conditions to receive funding. Giving more power to local communities could also serve to challenge some of the problematic assumptions underlying global health programs. This is particularly true in relation to gender. The reliance on categorical thinking about gender (Connell 2012) is one factor that is limiting HIV interventions. Categorical thinking makes it possible to implement easy-­to-­replicate and scalable interventions, with a replicable, scalable model being the dominant framework used in global health interventions. However, such an approach assumes many things. First, it assumes that interventions will have universal success in a wide range of local contexts that have different histories and social dynamics. It also assumes that the global health bodies that hold power over disbursing lifesaving resources understand what will work better than local people and local community organizations. Global health claims of prioritizing and targeting women have brought much-­needed attention to the gender inequalities that underlie the HIV epidemic. However, the categorical thinking that has become a part of global health has contributed to a lack of attention to the complex ways that gender factors into vulnerability. As global health HIV programs unfold within the social dynamics in Bolivia, they are latently contributing to the persistence of fault lines. As a blaming-­machismo discourse has emerged, men at times feel uncomfortable engaging with the services that exist. In the case of men who do not identify as machista, they may fail to see how they would be at risk for HIV. When women’s experiences do not align neatly with the imagery of innocent victims, they may be more likely to internalize feelings of guilt and shame over an HIV diagnosis. Further, there is a lack of attention to the complexities of women’s sexual lives in relation to HIV. Finally, as the globalization of an LGBT rights movement has worked its way into global health interventions, the local particularities of how individuals navigate same-­sex desires have been overlooked. In order for global health financing to more effectively save lives, global health bodies must be more flexible and willing to hand over more decision-­making power to local entities in defining interventions. In this regard, it is important to consider the constraints of global health bodies in the process. Funding giants like the Global Fund have their own sets of donors that demand to see effective use of funds. There is a constant pressure to produce numbers of lives saved and evidence of high-­impact interventions. In the process, numbers have become the ultimate truth, with policy makers placing value on numbers over the experiences of people affected. Ethnography highlights the need to rely on other forms of measuring success (Adams et al. 2014). For example, peer educator programs were at one point in danger of losing their funding, with the Global Fund viewing such programs as low impact because they reach a small number of people.

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However, through an ethnography of care, I illuminate the essential forms of support that peer educators provided for women like Gabriela and Cassandra. While spending an entire day helping one individual navigate the system of care near the end of her life would never produce a high number of lives saved, this form of support was essential in giving Gabriela any hope of recovering. Peer educators and people with HIV who have benefitted from peer educators know this, and funding giants need to value this local, experiential knowledge as a form of evidence. Recent actions on the part of the Bolivian Ministry of Health highlight why global health funding giants are hesitant to give up too much power in determining the use of funds. The Ministry of Health’s unilateral attempt to take over the management of Global Fund grants without consulting civil society or the Global Fund would have merely shifted power from the Global Fund to the state, failing to address the issue of involving meaningful community participation. However, global health bodies need to respect the role of local governments in developing health care systems. A global legacy of external intervention that involved structural adjustment programs via the World Bank and IMF left health care systems in shambles in the developing world (Pfeiffer and Chapman 2010). Bolivia is currently trying to undo this legacy; however, the state’s desire to rid itself of what it sees as the vestiges of neoliberalism, while at the same time having an insufficient health care budget to provide a national health care system, poses a dilemma. This is particularly true for HIV care. As Bolivia continues to grapple with the development of its health care system, civil society continues to be a force in pushing for changes in national and local policies addressing HIV. Civil society organizations played a central role in passing the National HIV Law and securing Global Fund grants. They are now in the process of developing local HIV laws to give the national law greater force and making demands for increased government funding for HIV prevention, testing, and care. While the types of services available through civil society organizations remain constrained by what external financers are willing to support, these organizations remain an important bridge between the public health care infrastructure and people with HIV. This role may become increasingly important in the future as Bolivia continues to lose external support and break ties with large aid organizations, increasing the need to rely on national and local governments to support HIV interventions. Ross constantly reminds her fellow activists, “The Global Fund will not be in Bolivia forever.” With fewer external conditions imposed on Bolivia, civil society will play an important role in shaping the trajectory of future HIV programs. This presents an opportunity to develop programs that are rooted in an intimate familiarity with the local context.



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When I left the field in August 2014, a sense of crisis was unfolding, and this crisis had evolved by the time I returned in 2016. It is unclear how this situation will unfold in the future. What is clear is that without significant changes in how HIV interventions operate, HIV will persist. If the goal is truly to end AIDS by 2030, there must be a concerted effort to reach those who have been left behind in current interventions. Despite the drama surrounding the Ministry of Health’s recent actions in relation to the Global Fund, the ministry is correct about one thing. Efforts of prevention and care for HIV can be most effective if they are a part of developing a more comprehensive and accessible health care system. Global health initiatives should support this ultimate goal.

The Cemetery Thirteen kilometers south of the center of Santa Cruz, just off the highway that eventually turns west, heading away from the rolling plains of the tropical eastern lowlands and into the valleys that stage the entry to the Andes Mountains, there is a small cemetery. It is a rather unremarkable cemetery that looks like any other cemetery one might find in a poor, peri-­urban neighborhood in Latin America. Some of the bodies that rest in the cemetery lie in aboveground cement tombs. Some of the tombs were once painted bright colors. Most of these tombs are now deteriorating, with deep cracks and missing chunks of cement. Many of the bodies, however, lie below ground in graves marked by small wooden or cement crosses. Some of the graves have fresh flowers. More have the remains of dying flowers. Litter from cars passing on the nearby highway has blown into the cemetery, with wind patterns forcing the litter into large trash dunes. Stray trash blows among the graves. I learned about the existence of this cemetery from Rodrigo, who had been a patient at Comunidad Encuentro. When recounting the recent death of a friend at the hospital, Rodrigo said, “The hospital owns a small set of tombs in the cemetery near here. They had to buy it because they don’t have anywhere else to put the bodies of the abandoned. Sometimes the family doesn’t want to come back for the body.” I retold this story to Aldo one Sunday afternoon while he was living at a drug rehabilitation center. Since the cemetery was close to the center, he offered to accompany me there. He wanted to visit the graves of friends. More importantly, he was always looking for an excuse for a momentary escape from the center. Aldo did not have permission to leave the center alone, and I provided a rare opportunity for him to leave. What Aldo promised me would be a short walk of three kilometers at most, was really double that. We enjoyed the walk, though—­especially since it came

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during a rare break from the usual heat as an overcast sky and sporadic gusts of winds hinted at a coming surazo. I also knew that Aldo needed the time away from the center. As we walked, the surazo winds shot grains of sand at our faces. On several occasions, we had to stop walking to turn our backs toward the wind, laughing as we cursed the sand. When we arrived at the cemetery, we took a moment to walk around, checking graves to see if we recognized any names that could help us identify the section where Comunidad Encuentro buried the abandoned. Trash crinkled under each step. We finally asked a grounds worker who was huddling in a small wooden shack. He directed us to a small mausoleum, composed of 24 cement tombs, remarking, “It is full.” Despite being full, most of the tombs remained unmarked, giving little indication that bodies lay inside. On two of the tombs, someone had painted the cement white and had written names and dates of death. Two others had dates that someone had engraved in wet cement. One was fresh and marked with the date from two days earlier—­23-­05-­14 (May  23, 2014). Recent rain had prevented the cement from completely drying. Aldo and I would later discover that we knew who the hospital had buried in that grave. Aldo finally broke the silence. “Those are the people abandoned by their families. No one even came to acknowledge their death.” As we looked at the

Figure 8.1. The tombs where Comunidad Encuentro buries the abandoned.



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names of the marked graves, Aldo pointed to one, saying, “This is Panchito. I knew him. He was older and was at Comunidad Encuentro for a long time.” As I continued looking for hints of markings on the tombs, I heard deep sighs coming from Aldo. When I looked over at him, he began to laugh, remarking, “I hope someone comes for my body in the end.” We stood and stared at the graves for a moment longer, contemplating who might be buried there. The deaths of those who are buried in the cemetery are a reminder of the work that is left to do.

ACKNOWLEDGMENTS

In conducting the research for and writing this book, I have become indebted to many people. First, many people and institutions in Bolivia helped make my research possible. Most importantly, I extend my sincerest gratitude to the individuals whose stories appear in this book. Epua Kuñatai / Levántate Mujer, RedVihda, Fundación Igualdad, CDVIR–­Santa Cruz, SEDES, Colectivo Rebeldía, PDA Los Chacos, RedBol, and Comunidad Encuentro provided valuable institutional support. Within these institutions, I would especially like to thank Julia Casilla, Heidy Hochstatter, Claudia Torrez, Eda Cuellar, Zaida Sandoval, Martine Buijs, Maria Zapata, Miguel Negrete, Martha Banzer, Ana Silva, Franco Reyes, Vanina Lobo, Moira Rimassa, Lupe Perez, Dr.  Rebeca Arandia, Julio César Aguilera, Violeta Ross, Dr. Gonzalo Borda, Dr. Susana Lizarazu, Marlene Eguez, Carol Camacho, Ximena Rojas, Gabriella and Roberto Petrocchi, and Dr. Rene Wills. This book began as my dissertation while I was a graduate student at Southern Methodist University (SMU). While at SMU, Nia Parson was always a supportive mentor who provided me with opportunities to flourish as a scholar and always reminded me to make the ethnography central to writing. Caroline Brettell, with her expansive knowledge, always pushed my thinking in new directions. Carolyn Smith-­Morris influenced my interest in the role of ethnographic research within the clinical context and always encouraged my interrogation of health policy. Tim Wright provided far more support than I ever expected from an external committee member through his connections in Santa Cruz, intimate knowledge of my research topic, and kind spirit. While I was at SMU, I received various forms of support from the late Robert Kemper, Sarah Willen (now at the University of Connecticut), Eric Bing, the late Victoria Lockwood, Neely Meyers, Pamela Hogan, Tiffany Powell, and Arlene Zalkovsky. I was fortunate to have a supportive group to go through graduate school with that included Rebecca Boucher, Shay Cannedy, Megan Hinrichson, Laura Jarvis, Jessica Lott, Saira Mehmood, Josh Dorfman, Lisa Haayan, Ashvina Patel, Michaela Wallerstedt, Beibei Yang, and Sydney Yeager. Abigail Fisher graciously assisted me with ArcGIS. My interest in medical anthropology first blossomed while I was a student in the Departments of Anthropology and Sociology at Indiana University of Pennsylvania (IUP). From my years at IUP, I owe thanks to Victor Garcia, Kay Snyder, Tom Nowak, Francis Allard, Melanie Hildebrandt, Phil and Sarah Neusius, 159

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Joey Astorino (who provided feedback on the book proposal), Ashley Chateau, and Rebeca Barona. In the Department of Sociology and Anthropology at the University of Texas at El Paso (UTEP), I have found a collegial work environment. Howard Campbell has been a supportive department chair and helped me secure the course releases I needed to write this book. Joe Heyman has been generous in sharing his time and academic wisdom. I had the rare fortune of beginning my position in the department with my own faculty cohort. Angela Frederick and Jeremy Slack, along with their partners Daniel Frederick and Carla Soto, have become dear friends. Also at UTEP, I would like to thank Ophra LeyserWhalen, Gina Nuñez, Eden Robles, Adelle Monteblanco, Amy Reed-Sandoval, Ivan Sandoval Reed, Aurolyn Luykx, and Allison Cantor. The National Institutes of Health–­funded BUILDing Scholars program at UTEP, with leadership from Sara Grineski and Tim Collins, provided valuable research support during my first two years as a faculty member. This included a mentorship program for junior faculty, which enabled me to receive mentorship in grant writing and publishing from Andrew Sussman at the University of New Mexico Health Sciences Center. At UTEP, I have been fortunate to have a wonderful group of students. In my fall 2016 graduate seminar in medical sociology, Maralyn Doering, Marilyn Garcia, Rudy Garza, Genesis Ruiz, Enrique Gonzales, Denise Delgado, and Estefania Hernandez provided thoughtful comments on a draft of the manuscript. Estefania, along with Victoria de Anda and Ana Fuentes, have been wonderful research assistants. A piece of Victoria’s wonderful artwork serves as the frontispiece to the book. I am eternally grateful to Lenore Manderson for her support as the series editor. Through meetings at conferences, Skype calls, and multiple rounds of comments on the manuscript, Lenore helped shape this book into what it is. Her careful attention to detail pushed me to refine my arguments and add clarity to my writing. At Rutgers University Press, Kim Guinta has been an enthusiastic editor from the beginning. I would also like to thank the anonymous reviewers for their feedback. My research was generously supported by a dissertation fieldwork grant from the Wenner-­Gren Foundation and an SMU Department of Anthropology Edward Fry Award. A Wenner-­Gren Engaged Anthropology Grant enabled a return visit to Santa Cruz in 2016. Earlier versions of chapters 3 and 6 appeared in article form in Culture, Medicine, and Psychiatry and Medical Anthropology, where anonymous reviewers provided constructive feedback. Only a partner as loving and supportive as mine would join me back and forth to South America and across the country. Dario Saucedo and I both extend our gratitude to the Saucedo, Mercado, and Ribera families in Santa Cruz. We

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especially want to thank Señora Rosy Mercado who offered us companionship, shelter, and many delicious meals during our time in Santa Cruz. Also in Santa Cruz, members of the T3 Triathlon Club provided me with an occasional, yet much needed, distraction from my work. I am fortunate to have such a wonderful family. Coming from a family with many academics, I have never lacked support for pursuing an academic career. Alex and Druann Heckert in particular helped spark my interests in anthropology and sociology. My grandparents, Sara and the late Paul C. Heckert, were both fabulous storytellers, especially when Dairy Queen ice cream was involved. My grandfather’s stories of life in Honduras during the Cold War era sparked my interest in Latin American politics. My siblings, Paul S. and Jessica, have helped make my life a fun adventure. My sister-­in-­law, Ely Suparmanto, has made the adventure even more enjoyable. I especially want to thank my parents, Paul A. and Sue Heckert, for always believing in me and teaching me to care about social justice.

NOTES

Chapter 1  Fault Lines 1. For place and organization names, I use real names. I have relied primarily on pseudonyms for individuals. The one exception to using pseudonyms is if a person asked (or in some cases demanded) that I use his or her real name. While I was initially hesitant to oblige this request, some people told me their stories with the hopes that their names would appear in print, and I did not want to deny them of their agency. 2. Prior to 2014, the full name of the Ministry of Health and Sports was frequently shortened to the Ministry of Health. In 2014, the national government created a separate Ministry of Sports. 3. Although data collected by UNAIDS and the Pan American Health Organization (PAHO) indicate that Bolivia consistently has the lowest ARV coverage in the region, since 2015, Venezuela began to fare worse as the country spiraled into a political and economic crisis that has contributed to widespread shortages of medications, including ARVs (Red Venezolana de Gente Positiva 2016). 4. The exact percentage of people with HIV who receive their diagnosis after they have progressed to AIDS is a surprisingly contentious issue, as illustrated by the fact that I was asked to leave a meeting among public health officials where the topic was AIDS-­related deaths. Several activists were asked to leave as well, under the pretense that the meeting was by invitation only. Official Ministry of Health records indicate that the percentage of new HIV cases detected at the AIDS stage fluctuates between 10 and 20 percent per year (CDVIR 2014). However, other studies suggest that this figure has steadily been closer to 50 percent (Protto et al. 2008; Ramírez Hita 2013), although it may have improved over the past several years. One doctor at a major public hospital who has dedicated his career to HIV stated that, based on his experiences, this latter figure was closer to the truth. He explained that when patients die shortly after receiving their diagnosis, their deaths are rarely reported as being from AIDS, as many patients die at home and their family members try to cover up the cause of death. 5. As I write this (2017), Bolivia is emerging from a water crisis. Water rationing was under way, and Hospital Viedma in Cochabamba suffered chronic water shortages, directly leading to the death of at least one patient (Página Siete 2017). 6. This quote comes from a letter sent from the minister of health to the CCM, which was shared at a meeting of activists where I was in attendance. 7. Public drivers include bus drivers, taxi drivers, and truck drivers. The term implies these drivers serve the public, but they are not publically financed jobs. Even city buses in Santa Cruz operate as a worker’s co-­op as opposed to a publically financed transportation system. The CCM proposed including public drivers in HIV testing and prevention initiatives because mobile populations such as migrant workers, soldiers, and truck drivers have long been recognized as gateway populations that can introduce HIV into communities where it previously did not exist. This has been particularly relevant in the spread of HIV into rural communities (Beck 2013; Goldenberg et al. 2014). Further, research by

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Sorensen and colleagues (2007) indicated that Bolivian truck drivers frequently engage in high-­risk sexual behaviors. 8. During the time of my fieldwork, activists used the acronym LGBT far more than other variations, such as LGBTQ. Because of this, I use LGBT to reflect local discourse. 9. This oversimplifies how sex between men in the ambiente plays out. For a description of the complexity of male same-­sex relations, see Wright (2000, 2006). 1 0. To dissect the ways that men and women are portrayed within HIV-­related global health documents, I conducted a content analysis of documents related to HIV and gender that are most relevant in Bolivia. See Heckert (2015) for further details. 1 1. Nikolas Rose’s (2007) book The Politics of Life Itself evokes the term politics of life as well, but in a different way. Rose uses this term to analyze how medicine is able to manage and intervene on life down to the molecular and cellular level. I use the politics of life in line with Fassin’s theoretical framing of the concept. 1 2. The term decentralization has multiple meanings in the context of the Bolivian health care system. During the neoliberal era, decentralization referred to a move away from centralizing health care services under the national government. In this sense, decentralization was akin to privatization and fostering the development of disease-­specific health interventions (Molenaers and Renard 2003; Tejerina Silva et al. 2011). Currently, decentralization has taken on a new meaning that is a reversal of neoliberal decentralization. The decentralization of HIV and tuberculosis services has involved a move to take care out of disease-­specific institutions such as CDVIR, moving these services into a comprehensive health care setting in hospitals and clinics.

Chapter 2  Decolonizing Bolivia 1. The concept of two Bolivias has a history among indigenous intellectuals that predates Fausto Reinaga, but his prolific writings have enabled him to be the most well-­known indigenous intellectual from Bolivia. While the distinction between two Bolivias points to a deep national divide, some indigenous intellectuals proposed using this divide to create two distinct governing bodies with the idea that this model could offer indigenous people more autonomy, freeing them from internal colonization (Ari 2014). 2. The Chiriguano indigenous group resulted from the blending of the Chane and Guaraní that occurred in the precolonial era after the Chane joined forces with the Incas to gain control over Guaraní land. The Chiriguano have now retaken the Guaraní name to describe their ethnic identity (Postero 2007). 3. I use the term subaltern (Gramsci 1971) to broadly describe individuals whose agency is limited by power structures tied to race and class. While some of these traditional hierarchies are rapidly changing and individuals are finding more avenues for exerting agency, subaltern is still analytically descriptive in terms of reinforcing the point that certain groups of people in Bolivian society continue to be systematically marginalized in many realms of life. 4. As Albro (2010) points out, while the new constitution appears to promote indigenous rights, some critics have called it Aymara centric, framing indigenous rights from the perspective of Bolivia’s largest indigenous group at the expense of other indigenous groups.



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Chapter 3  When Care Is a “Systematic Route of Torture” 1. Magaly demanded that I use her real name. Given that her name and story have appeared multiple times in the Bolivian press and her case is well known among Bolivian HIV activists, I agreed to her request. 2. It is common for doctors in the Bolivian public health system to hold multiple positions. In public hospitals and clinics, doctors work six-­hour shifts, so many hold second jobs. Most commonly, doctors either have private practices on the side or teach classes at a medical school. Dr. Escalante had a less common working arrangement in that he held two publically funded positions. 3. In the early 2000s, Nevirapine was hailed as a magic bullet to prevent mother-­to-­child transmission in resource-­poor settings, despite the availability of more effective medications in wealthier nations and concerns of drug toxicity and the potential for it to contribute to viral resistance (Fassin 2015). 4. A growing number of Bolivians from poorer and indigenous backgrounds are gaining access to higher education and entering the ranks of the professional classes. Additionally, at the national level, there has been a concerted effort to bring indigenous people into the biomedical sciences (Centellas 2010). Despite this shift, I observed a distinct social distance between patients and health care workers. Part of this has to do with class paradigms and a deeply embedded history of whitening efforts in Bolivia, with perceived whitening taking place alongside upward social mobility (Ari 2014).

Chapter 4  Aiding Women 1. This refers to fluconazole, used to treat fungal infections, including thrush. 2. TEL (tenofovir + efavirenz + lamivudine) is a combination ARV that contains three drugs in the same pill. It was the first widely available ARV in Bolivia that enabled patients to take only one pill per day. Although combination ARVs have been available in wealthier nations since 2006, TEL did not become available in Bolivia until 2012. 3. Although the Bolivian currency is the boliviano, colloquially, people often use the term peso. This amount is equivalent to roughly $1.16. 4. ONAEM’s funding originates primarily from Hivos, a Dutch organization that has also served as a Principal Recipient of Global Fund grants for HIV. 5. Women in particular are more likely to work in the informal economy, giving them less access to benefits like health insurance and pensions (U.N. Habitat 2008).

Chapter 5  Synergistic Silences 1. Ironically, the ARVs would likely have helped Cassandra with this complaint; there is a relationship between poor oral health and HIV, with these issues often subsiding upon the initiation of ARVs (Burger-­Calderon et al. 2016). 2. Aracely used the term enfermedad, which could be translated as “sickness,” “illness,” or “disease.” I translated it as “sickness” because her choice of words stands in contrast to the efforts of HIV activists to encourage health care workers to use the term condición (condition) as opposed to enfermedad. The push for this shift in vocabulary is an effort of stigma reduction, as condición refers to something manageable, whereas enfermedad connotes a contagious disease.

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3. From 2013 to 2014, CDVIR was in the midst of transitioning all patients to TEL, which needs to be taken once per day (see chapter 4, note 2). The goals of the transition were improved adherence and cost-­effectiveness. For a number of patients, especially those who had been on other drug regimens for years, the switch brought on side effects such as fatigue, skin rashes, and in one case, a liver infection. 4. More than two years after I met Carlos, on May 21, 2016, Bolivia passed the Gender Identity Law, which allows transgender individuals to legally change their names and genders on legal documents. This law is indicative of the shifting political climate in relation to LGBT rights, largely in response to the efforts of activists. However, there has been substantial social outcry following the passage of this law, illuminating the hostile social climate for LGBT-­identifying individuals. Further, Bolivia does not recognize marriage between same-­sex couples or permit same-­sex couples to adopt. This legal context is in part why Carlos feared that the legal system would deny him parental rights if he ended up in a custody battle.

Chapter 6  Blaming Machismo 1. Common law marriages have been recognized in Bolivia since 1944, and children resulting from these relationships have the full privileges of children born to parents married in civil and church unions (López Levy 2001). Common law marriages are frequent among the poor, since both civil and church marriages incur costs. 2. La Paz is the name of both a department and the capital city of that department. In Efraín’s reference to La Paz, he is referring to both the city and the department. However, as his narrative later indicates, he actually lived in El Alto, the working-­class sister city of La Paz. Because of the interdependence of these two cities and their close physical proximity, individuals often refer to La Paz in instances when they are talking about El Alto. 3. Epidemiological data indicate that rural areas and satellite cities have consistently had a balanced sex ratio in new cases of HIV, even during earlier years of the epidemic when new diagnoses at the national level were concentrated among men (CDVIR 2013). 4. Jessaca Leinaweaver (2008) notes a similar pattern in child circulation practices in Peru, pointing to how society views the labor of female children as mobile and productive for the household. Krista Van Vleet (2009) provides a discussion of the experiences of female children who are informally adopted and raised by wealthier families in Bolivia, often with the latent expectation that these children will offer their labor in return. While it is tempting to view this as an exploitative practice, these children often gain access to opportunities and resources that would otherwise be inaccessible. At times, these children are treated like family to some degree, although they are still often treated differently from biological children. 5. Dan Smith and Benjamin Mbakwem (2010) document a similar pattern in decisions to use condoms among people who are HIV positive in Nigeria, pointing to how reproductive life projects of having children often result in individual actions going against medical advice to use condoms.

Chapter 7  The Biopolitical Drama of HIV Funding 1. Affected populations refers to people living with HIV, people who have or had tuberculosis, and people living in areas with a high prevalence of malaria.



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2. Under Global Fund guidelines, the Principal Recipient can be the Ministry of Health if the CCM vote supports this. In Bolivia, HIV funding has always gone through external development agencies, although malaria funding has gone through the Ministry of Health. Tuberculosis funding went through Prosalud, a USAID invention that consists of a group of clinics throughout the country. Prosalud currently operates partially through public funds but has a history of funding relationships with various global health organizations. 3. This quote is from a letter sent on May 27, 2014, from Calvimontes to the president of the CCM. The letter was shared at a meeting I attended.

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INDEX

Page numbers followed by f refer to figures. abortion, 41, 73–­74, 81, 102 acompañamientos, 1, 19, 24, 145 AIDS, 15, 22, 104, 113; activism, 101; deaths, 6, 7, 20, 80, 98, 117; funding, 127; medications, 2; programs, 10, 16, 19, 135 Albro, Robert, 164n4 Aldo, 121–­22, 155–­57 Álvaro, 90, 93, 102 ambiente, 18–­19, 97, 164n9 Ana, 111 antiretrovirals, 2, 6–­7, 147, 157n3; accessibility of, 46–­47, 51, 54, 66, 104; funding for, 13 Aracely, 95–­96, 165n2 (ch. 5) Ari, Waskar, 34 Armando, 59–­60 ARVs. See antiretrovirals Aymara, 32, 34, 38, 164n4 Banzer, Hugo, 32, 36–­37 Basso, Keith, 93 Behar, Ruth, 86 Belén, 82–­86 Bellamy, Carol, 15 Biehl, João, 57–­58 biopolitics, 27, 126–­27, 134, 141, 143 biopower, 127, 130, 131, 133 Bohan Plan, 36 Bolivian Constitution, 49, 128, 135, 150–­51 Bolivian Network of People Living with HIV, 25, 126, 128, 130, 133 Calvimontes, Juan Carlos, 128–­29, 141 camba, 38 Carlos, 27, 94–­97, 166n4 (ch. 5) Carlos, José, 117–­20, 121, 122–­23 Carmen, 1–­4 Cassandra, 27, 68–­70, 87–­90, 98 Catholicism, 19, 35, 74 CCM. See Country Coordinating Mechanism

CD4, 12, 45, 48, 137, 147 CDVIRs. See Control, Surveillance, and Reference Centers Cecilia, 118 Central Intelligence Agency, 10, 69 Centros de Control de Vigilencia y Referencia. See Control, Surveillance, and Reference Centers Cerro Rico, 33 cesareans, 50, 51, 55, 115 Chacón, Magaly, 50–­55, 63–­67, 135–­36, 138, 165n1 (ch. 3); employment of, 78–­79, 125–­26, 148; family of, 106–­7, 116; as victim, 27, 80–­81 Chiquitano, 40, 123 Chiriguano, 34, 164n2 CIA. See Central Intelligence Agency citizenship, 35, 37, 150 civil society organizations, 79–­81, 126, 137, 139–­40; funding status of, 134; goals of, 141, 154; programs by, 141, 144, 152; tensions with, 27, 134, 136 clinics: 18 de Marzo, 2, 46; in La Villa, 2 Colectivo Rebeldía, 74, 102, 123 colla, 38–­39, 39f colonialism, 37, 40, 49, 127, 152; hierarchies of, 11, 33 Committee for HIV. See Santa Cruz Social Control Committee for HIV communitarian health care system, 12, 14, 43, 132 Comunidad Encuentro, 25, 59, 117, 156f conciliación, 52, 57, 64–­66, 126, 135 condom use, 19, 68, 122, 166n5 confidentiality, 57, 66, 90, 128, 136 Connell, Raewyn, 19 Control, Surveillance, and Reference Centers, 147, 164; drawbacks of, 137, 137f, 142; goals of, 14, 130, 166n3 (ch. 5); structure of care, 47–­48; system of, 11, 132

183

184

Index

Country Coordinating Mechanism, 13, 16–­17, 129, 134, 139, 152 coups, 32, 34, 36, 142 Cusi, Gualberto, 128–­29, 143 decentralization, 24, 142, 147, 164n12 decolonization, 42–­43, 123–­24, 152; agenda, 11, 54, 66–­67, 127; challenges of, 26, 53; effects of, 48; era of, 41 Departmental Health Services (SEDES), 9, 132, 140 dictatorships, 10, 37, 128 discrimination, 25, 27, 55–­56, 97; actions against, 24, 59, 150; HIV, 14, 53, 62–­63, 136 Earth Politics, 41–­42 economy, 29, 32, 37, 157n3; collapse of, 10; global, 148; informal, 45, 79, 110, 165n5; local, 34; national, 36 Efraín, 106–­7, 112, 114–­15, 122, 166n2 El Alto, Bolivia, 29, 115, 166n2 elitism, 33, 36–­37, 38, 42; capitalist, 36; regional, 30, 32 employment, 11, 29, 76, 148 encomienda, 34–­35 Epua Kuñatai, 1, 9, 23, 133 Escalante (doctor), 50, 53, 66, 165 ethnography of care, 23, 154 Fabricant, Nicole, 32, 36, 37, 40, 110 Farmer, Paul, 6 Fassin, Didier, 20, 58, 85, 108, 164 femicides, 73, 109 feminism, 81; movement, 73, 74; organizations, 42, 52, 86, 102, 123 Fernando, 99 Ferrández, Francisco, 120 Foucault, Michel, 21, 127, 129 funding, 9, 103, 126, 146, 149 Gabriela, 1–­7, 9, 19–­20, 28 Galeano, Eduardo, 33 GDP. See gross domestic product gender identity, 42, 97 Gender Identity Law, 42, 166n4 (ch. 5) gender ideologies, 21, 42, 84, 98, 99; intersectionality of, 27, 40, 71, 123

gender inequalities, 97, 111–­12, 116; effect on women, 77, 102, 105; reinforcement of, 40–­41, 122–­23 Gilmore, David, 108, 109 Global Fund to Fight AIDS, Tuberculosis, and Malaria, 5–­7, 130–­32, 138–­44; grant management, 129, 132, 133; grants, 27, 43, 147, 154 global health: initiatives, 7, 54, 101, 145, 149; interventions, 8–­10, 58, 86, 151, 152–­53; programs, 12, 18, 58, 78 Goldstein, Daniel, 45, 65, 79 good woman / bad woman dichotomy, 75, 76 gross domestic product, 14, 17, 47 Guaraní. See Chiriguano Guevara, Che, 36, 69 Gutmann, Matthew, 109 health care reform, 41, 43–­44, 48, 58, 133 health care workers, 25, 56, 61, 112, 121; and patients, 22, 54, 66, 165n4 (ch. 3) health insurance, 9, 49, 128, 135 high-­impact interventions, 17, 139, 149, 153 Hilda, 1–­6 Hirsch, Jennifer, 93 Hita, Susana Ramírez, 15 HIV exceptionalism, 6 HIV Law. See Law for the Prevention of HIV and Protection of Human Rights and Comprehensive Care for People Living with HIV/AIDS HIV nondisclosure, 77, 91, 94, 99 Hivos, 102, 103, 130, 165n4 (ch. 4) HIV transmission, 28; mother to child, 17–­19, 51–­53, 165 Hospital de la Mujer Dr. Percy Boland Rodriguez. See Percy Boland Women’s Hospital human rights, 16, 42, 56, 135, 150–­51; abuse of, 119, 136; to health, 150 IBIS, 13, 43, 133 illness narratives, 21, 22, 53, 113, 114 IMF. See International Monetary Fund imperialism, 3, 31, 43, 47 indigeneity, 34, 38, 110, 164n1 indigenous groups, 40, 110. See also Aymara; Chiquitano; Chiriguano; Quechua indio, 34, 38 institutionalization, 20, 42, 133, 152 International Monetary Fund, 10, 37, 154

intersectionality, 22, 40, 108 investments, 150–­51 Joint United Nations Programme on HIV/ AIDS, 9, 14, 104, 139 Juana, 70, 98, 135, 145–­46 labor, 33, 34–­35, 37, 40, 166n4 (ch. 6); rights, 74, 76 La Casa de la Mujer, 52 Laguna, Arian, 34 land holdings, 30, 35–­37 land reform, 11, 35, 36, 41, 42 La Paz, Bolivia, 29, 43, 49, 114, 166n2 La Villa, 2 Law for the Prevention of HIV and Protection of Human Rights and Comprehensive Care for People Living with HIV/AIDS, 57, 62, 91, 104, 137 legal recourses, 57, 58, 60, 65, 135 Leinaweaver, Jessaca, 166n4 (ch. 6) Levántate Mujer. See Stand Up Women LGBT, 164n8; activism, 42, 101–­3, 103, 104; organization funding, 134, 139; organizations, 17, 42, 48, 86; outreach, 25, 42, 101; rights, 25, 92, 166n4 (ch. 5). See also men who have sex with men; same-­sex relations Luis, José, 25 machismo, 107–­9, 107f, 111, 121, 122–­23; discourse of, 108–­10, 112–­14, 120; and violence, 40 machista, 107, 114, 116, 121–­22; violence, 109 Magaly. See Chacón, Magaly Mahoney, James, 33 malaria, 12, 142, 151 maleantes, 120, 121 male dominance, 40, 105, 110 maricones, 18, 92, 103, 113 MAS. See Movement toward Socialism Mbakwem, Benjamin, 166n5 media attention, 43, 52, 56, 115, 126 medical anthropology, 6 medical negligence, 53–­54, 56–­58, 60, 62; first case of, 27, 52 medications: accessibility of, 21, 55, 80, 157, 165; cost of, 4, 20, 99; denial of, 66; funding for, 12, 147. See also antiretrovirals; individual medications

Index 185 men who have sex with men, 17, 18–­19, 149. See also LGBT; same-­sex relations mestizo, 11, 32, 38 micropolitics, 21, 54, 112 migration, 29, 35; rural to urban, 31, 37–­38, 49, 123, 148 Ministry of Health, 10–­11, 129, 130–­31, 132–­33, 157n2 MNR. See National Revolutionary Movement Montero, Bolivia, 50, 106, 117, 148 Morales, Evo, 32, 38, 49, 110, 128; election of, 11, 33, 37, 53 Morón (doctor), 51, 53, 61 Movement toward Socialism (Movimiento al Socialismo), 11, 37, 42, 74, 128 Movimiento Nacional Revolucionario. See National Revolutionary Movement MSM. See men who have sex with men National Development Plan, 43, 61 National Organization of Activists for the Emancipation of Women, 74, 165n4 (ch. 4) National Revolutionary Movement, 36 neocolonialism, 11 neoliberalism, 10–­12, 26, 37, 42–­44, 61, 164n12 Nevirapine, 51, 165n3 (ch. 3) new constitution, 41–­43, 57, 73, 164n4 Nguyen, Vinh-­Kim, 21 nongovernmental organizations (NGOs), 12–­14, 37, 43–­44, 46f. See also Epua Kuñatai; RedVihda Nordstrom, Carolyn, 23 nutrition, 4, 8, 130, 131f, 147 Oblitas, Monica, 129 Organización Nacional de Activistas por la Emancipación de la Mujer (ONAEM). See National Organization of Activists for the Emancipation of Women Pan American Health Organization (PAHO), 15, 112 patient outcomes, 54, 55, 57, 58 Paulino, 71–­72, 77–­78 peasants, 11, 37, 40 peer educators, 48, 69, 87, 141, 153

186

Index

Percy Boland Women’s Hospital, 50, 51, 56, 64, 66 Pérez, Veronica, 76, 84 politics of life, 21–­23, 164n11 postcolonialism, 33, 37, 40 Postero, Nancy, 35, 37, 38, 164n2 poverty, 11, 37, 39, 47, 48 pregnant women, 17–­18, 66, 70, 76, 81–­82 Principal Recipient, 130, 138–­39, 142, 167n2 Project against AIDS, 11, 101 prophylaxis, 51, 63 protests, 32, 46–­47 Proyecto contra el Sida. See Project against AIDS public health officials, 13 Puerto Suárez, Bolivia, 1, 3, 4, 5 Quechua, 32, 34, 38 Rafael, 113–­14, 122 RCM. See Regional Coordinating Mechanism RedBol. See Bolivian Network of People Living with HIV Redfield, Peter, 127 RedVihda, 24–­25, 80–­81, 126, 137–­38, 147–­48 Regional Coordinating Mechanism, 13, 139–­40 Regional HIV/AIDS Program, 47, 132 rehabilitation, 119, 120, 121 Reinaga, Fausto, 33 Ribera (doctor), 55, 62–­63, 138, 147 Rich, Adrienne, 93 Rich Mountain. See Cerro Rico Rose, Nikolas, 164n11 Ross, Violeta, 70, 138–­39, 141, 152, 154 same-­sex relations, 42, 97, 102–­3, 121, 166n3 (ch. 6); complexity of, 134, 164n9; silence about, 91–­92, 94. See also LGBT; men who have sex with men Santa Cruz, Bolivia, 24–­25, 29–­31, 35–­37, 71–­72; employment, 115; geography, 31; quality of care, 4 Santa Cruz Social Control Committee for HIV, 26, 136, 139 Santa Cruz Youth Union, 32 SEDES. See Departmental Health Services

Seguro Universal Materno Infantil. See Universal Maternal and Child Insurance sex workers, 17–­18, 70, 72, 74–­78, 101 silver, 33, 34 Smith, Dan, 166n5 social hierarchies, 53, 58; class and, 31, 33, 36–­37, 120–­21, 165n4 (ch. 3); gender and, 41, 67; health disparities tied to, 41; history of, 26, 61, 67; intersection of, 34, 37, 65, 110, 164n3; race and, 33, 56, 74–­75, 120–­21 Spain, 32, 33–­35, 97 Stand Up Women, 74, 146 stereotypes: gendered, 74, 79, 81, 86, 123; sexuality, 27, 87, 110; women as passive, 84, 103 Stevens, Evelyn, 108 subaltern classes, 39, 54, 61, 65, 164n3 SUMI. See Universal Maternal and Child Insurance support groups, 48, 140, 146 Tania, 99, 101 taxes, 34–­35, 148 TEL (tenofovir + efavirenz + lamivudine), 68, 165n2 (ch. 4), 166n3 (ch. 5) Ticktin, Miriam, 22 tin, 33, 34, 37 toxoplasmosis, 12, 45, 147 transportation costs, 45, 48, 100 Treatment Action Campaign, 80, 104 tuberculosis, 1–­5, 14, 24, 35, 142 UJC. See Santa Cruz Youth Union U.N. See United Nations UNAIDS. See Joint United Nations Programme on HIV/AIDS Unión Juvenil Cruceñista. See Santa Cruz Youth Union United Nations, 6, 9, 16, 49, 148 United States, 33, 36, 80, 101, 103, 104 United States Agency for International Development, 3, 10–­11, 18, 42 Universal Maternal and Child Insurance, 41 USAID. See United States Agency for International Development Valeria, 71–­73, 76–­78 Vallegrande, Bolivia, 36, 69, 71 Villarroel (doctor), 135–­36



Index 187

violence, 40, 73, 120; structural, 23, 58, 77; symbolic, 53, 55, 59, 60–­61, 143; against women, 42, 86, 109, 123 viral load, 28; testing, 12, 45, 48, 137, 147

World Food Programme, 8, 130, 147 World Health Organization, 19, 20, 55, 104, 111–­12; guidelines of, 3, 5, 91 Wright, Tim, 26, 101, 102–­3

Warnes, Bolivia, 117 WHO. See World Health Organization World Bank, 8–­9, 10, 37, 41, 154

Xpert test, 5 Zulawski, Ann, 35

ABOUT THE AUTHOR

C arina Heckerthas been an assistant professor of anthropology in the

Department of Sociology and Anthropology at the University of Texas at El Paso since 2015. Her areas of expertise include global health, medical anthropology, violence and health, gender, and immigration. Her research focuses broadly on how policies shape people’s illness experiences and experiences seeking care. She is currently developing a new line of research focused on the intersections of emotional distress, reproductive health care access, and immigration policy in the U.S.–­Mexico border region.