Jennifer L. Syvertsen
University of California, Riverside
What happens when the HIV epidemic in a country is “small” by global comparisons? Who lives, who dies, and who decides?
Carina Heckert’s Fault Lines of Care: Gender, HIV, and Global Health in Bolivia opens with the story of Gabriela, a young but gravely ill woman who, showing symptoms of tuberculosis, tested positive for HIV. Gabriela’s three-year-old daughter also tested positive, and together with Gabriela’s mother, Gabriela and her daughter made a 12-hour bus journey to Santa Cruz to obtain care. One day, Gabriela’s mother asked Heckert if she thought Gabriela was going to die. As an optimistic researcher starting her career, Heckert answered that Gabriela would be alright because biomedical treatment strengthens immune systems and helps patients live with HIV. However, this is only true if patients have timely access to medication and other forms of support to manage their illnesses. Shortly afterward, Gabriela died. Feeling haunted by her answer to Gabriela’s mother, Heckert grapples with a key question for all anthropologists working in global health: How is it that some lives come to matter more than others?
Fault Lines of Care offers a thoughtful examination of an HIV epidemic that is easily assumed to be unremarkable in terms of absolute numbers, yet nevertheless enacts the same suffering and need for care we see everywhere. Drawing on the concept of fault lines of care, Heckert’s ethnography shows how global health policies and programs do not treat all groups equally, but rather prioritize some needs while creating new fractures and gaps in service access in others. Weaving together the narratives of HIV patients, health care workers, and policymakers in Bolivia, Heckert produces an “ethnography of care” that reveals care to be a product of complex global systems that requires attention to power and inequities.
As anthropologists have noted, the world of global health is increasingly driven by quantification, thus Bolivia’s relatively small HIV epidemic raises questions about funding priorities, including who counts and what kinds of programs are deemed deserving of global donor investment. This “politics of life,” or how political decisions have life and death consequences, vividly unfolds in the stories of local lives that are deeply affected by global decision-making. The HIV response in Bolivia reflects broader global patterns of structural adjustment and free market reforms in which largely Western donors funnel support through NGOs to provide health care in developing countries. However, these programs are often disease-specific, and such siloed care fails to address people as holistic beings or strengthen national health systems as a whole.
One key contribution to critical global health scholarship is Heckert’s discussion of Bolivia’s attempts to decolonize HIV health care. Bolivia has sought to move away from neoliberal policies, even as it continues to receive global donor funding for HIV services. These tensions play out through what she calls “biopolitical dramas,” such as when former President Evo Morales called USAID a “an instrument that still has a mentality of domination” (p. 13) and expelled the agency from the country along with a Danish organization, which ultimately threatened the entire HIV health care system. Heckert’s careful documentation of the on-the-ground experiences of health workers and patients alike reveals the contradictions, complexities, and consequences of efforts toward decolonization, which often meant that services disappeared altogether rather than being absorbed into a national system. Thus, she argues, symbolic acts of de-colonialization do little for marginalized groups when they cannot access the care they need, which disproportionately falls on fault lines of gender, class, and race.
At the core of Heckert’s argument are these lives on the fault lines who are forgotten and unable to obtain consistent and quality care. This book makes a powerful case for focusing on women and deconstructing gender stereotypes that harm HIV prevention and care efforts. Global health programs often rely on reified categories of gender, which further deepens fault lines when women are constructed as confined to the home, passive, focused on childbearing, and less at risk. Current conceptions of women’s risk are [often] based on assumptions around sexuality; a focus on pregnant women frames them as valuable for their reproductive capabilities, while a focus on sex workers perpetuates stereotypes about promiscuity. Lost in these discourses are the increasing numbers of women, including Gabriela, who learn their diagnosis too late because they were not prioritized for even basic HIV prevention programming. Once diagnosed, women have multiple health and social needs that are often left unattended because funding priorities are focused elsewhere.
Heckert also shows how global health programming reifying gendered constructs of men is equally counterproductive. Popular discourses of machismo in Bolivia center around negative masculine traits, including intimate partner violence, infidelity, and excessive alcohol consumption. When linked to global health discourses, machismo blames men for HIV transmission while those who do not identify with the concept often do not perceive themselves at risk. Similarly, prioritizing men who have sex with men (MSM) excludes men at risk who do not identify with this group; as such, many programs miss opportunities to reach married men who do not identify as MSM but have sex with both men and women. Importantly, all of these gendered discourses relate to what Heckert terms “synergistic silences,” or the socially significant ways that individuals use silence to navigate the inequalities and tensions embedded in gendered stereotyping and stigmatized sexual practices. These forms of silence offer social protection but conflict with confessional cultures of global health programming that champion HIV disclosure, thereby deepening fault lines of care-seeking.
In addition to rethinking simplistic conceptions of gender, Heckert calls attention to the vital and underappreciated roles of peer educators. As knowledgeable individuals from communities who are often themselves HIV positive, peer educators understand complex community needs and link individuals with the prevention, care, and support that they need. Despite their importance, many peer educators in Bolivia have been terminated from their positions because agencies cannot produce the robust quantitative numbers that donors seek to “justify” their investment. But qualitatively and across diverse global settings, research has demonstrated how peer educators can make a significant difference for patients whose diagnosis of HIV is part of a larger struggle to survive.
Fault Lines of Care makes a valuable contribution to a growing anthropological literature in and of global health. Although it can be difficult to criticize HIV treatment and the moral framing of global health as a larger project to alleviate suffering, we need ethnographies like this to unveil the inequities that underlie such projects. Heckert does so in a caring writing style that will appeal not only to anthropologists but also to global health audiences. She subtly shows readers that she is intimately immersed in the lives of her participants through sharing meals, accompanying them on appointments, and conveying a genuine interest in their wellbeing. By carefully drawing on individual stories and connecting experiences to policies, we see that HIV programs measured by high impact, number-driven evaluations ultimately leave people behind who are worthy of attention and care.
This book offers an excellent resource for undergraduate and graduate courses in medical anthropology and health sciences. It poses important questions for future researchers to consider, including why our stubborn reliance on metrics and disease-specific approaches to global health care persist. It also raises the critical issue of how to effectively decolonize an HIV global health enterprise that we must first admit is not entirely working. This book leaves us wondering what will happen next in countries like Bolivia, where rising living standards amidst persistent inequalities and sociopolitical upheaval render the future of global health investment in the region uncertain. These are not just questions of academic interest; they mean life and death for people like Gabriela.