Fault Lines of Care

Carina Heckert

• Publisher: Rutgers University Press
• Year: 2018
• ISBN:
  9780813586922
• Topic: Medicina
• Subtopic: Salud pública, administración y atención

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

1

Fault Lines

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 ...