Will to Live: AIDS Therapies and the Politics of Survival
Ethnographers, novelists, and prisoners write heart-wrenching books because they present simple truths. Will to Live is a powerful, at points searing ethnography of HIV antibody surveillance systems in Brazil and pharmaceutical industry influence in bringing forth new relations of politics and health care. It tells of the bodily suffering of Brazilians who contract, and eventually die from, AIDS - and of those who fear such diagnoses, although they are HIV antibody negative.
It demonstrates the varying degrees of access that Brazilians have to highly active antiretroviral therapies (HAART) and that track along the fault lines of social structure. That HAART works for many (but not others) or that it comes too late (or too early or is engaged too haltingly) signifies the contradictions and paradoxes of culture and social structure that are usually revealed in epidemics. Although it is filled with positive stories and better outcomes (HAART brings many back from the brink of death), Will to Live is as painful to read as Nancy Scheper-Hughes’ Death Without Weeping, also about Brazil but in context of infant mortality; Paul Farmer’s AIDS and Accusation, also about AIDS but set in Haiti; and Begonia Aretxaga’s Shattering Silence, about Northern Ireland women who deploy their incarcerated bodies and even bodily fluids in political protest.
Will to Live shows that the national and international response to HIV and AIDS has in Brazil “shifted from controlling the epidemic to controlling individualized disease.” “Yes,” the author writes, “distribution programs make antiretroviral therapies accessible, but they are one element in the full treatment of a disease that... remains a matter of a regional politics of nonintervention.” “It’s a shame what is happening to AIDS” is the direct utterance of an otherwise well-intended caregiver, suggesting just how much the cart has been put before the horse and what the public health costs can be of imagining only a pharmaceutical response.
João Biehl is a Brazilian anthropologist and Associate Professor of Anthropology at Princeton University who has a long time studied the conceptualization, implementation and evolution of the Brazilian AIDS Control Program (BACP). Multi-sited in location, multi-method in logistics, multi-voiced in narrative, and multi-purpose in scope, Will to Live unravels and critiques the ways in which NGOs (non-governmental organizations), churches, the Ministry of Health, pharmaceutical industry representatives, gender and sex work activists, and those suffering from HIV or AIDS mounted a “national” response to HIV and AIDS that is anything but. “A central concern of my ethnography,” the author notes, “has been to produce alternative epidemiological evidence and to generate some form of visibility and accountability for the abandoned subjects with AIDS.”
A site of Biehl’s particular focus is Caasah, a part-community house, part-hospice, part-pharmacy, part-training ground in advocacy. Caasah was formed in 1992, “when a group of homeless AIDS patients, former prostitutes, transvestites, and drug users squatted in an abandoned maternity ward in the outskirts of Salvador” and turned it into a care center. He returned to Caasah in 2001 to find a near-complete turnover there of patients and staff and a reorientation of service provision and funding source. As such, Caasah well represents both the protean nature of AIDS and the constraints upon and conditions under which local-level responses to it were mounted.
All but a very few pharmaceutical industry representatives, health authorities, and politicians talk in double-speak. Many exacerbated cleavage between rich and poor, politically visible and not:
As with all things political and economic, the reality underlying the AIDS policy is convoluted, dynamic, and filled with gaps. The politicians involved in the making of the AIDS policy were consciously engaged in projects to reform the relationship between the state and society, as well as the scope of governance, as Brazil molded itself to a global market economy. One of this book’s central arguments is that on the other side of the signifier _model policy _stands a new political economy of pharmaceuticals, with international and national particularities. As NGO activism converged with state policy making, and as the public health paradigm shifted from prevention to treatment access, political rights have moved toward biologically based rights.
Comprising eight chapters including Introduction and Conclusions, Will to Live is equally heavy and light, grim and hopeful, ethnographic and theoretical. The Introduction (“A New World of Health”) bookends painful personal stories and broadly sweeping discussion of the political-economy of pharmaceuticals. Rhetorical and other slippage in the overly optimistic assessments of AIDS bureaucrats and pharmaceutical representatives is revealed in stories of busted aid posts, iatrogenic illness, and social structures that sicken people. Chapter One (“Pharmaceutical Governance”) discusses the complexities of state-local, transnational-NGO and doctor-patient relations. Biehl writes perceptively about the successes of Brazil in manufacturing generic drugs that challenged patent rights granted by the WTO.
The particular successes and failures of Caasah are scattered in discussion throughout the book, but Chapter Two (“Circuits of Care”) looks intently at the new subjectivities (e.g., patient-citizen, “risk group” member, the “worried well”) that arise in social, technical and economic relations brought to bear by HIV, HIV antibody testing and AIDS. The failures of the surveillance system – but also its tremendous promise – are shown acutely in the next chapter, “A Hidden Epidemic,” which reveals the biases in public health and society at large with regards to surveillance, treatment and counseling. Chapter Five, “Patient-Citizenship,” examines the Phoenix-like rise from the ashes of imminent death that has been occasioned in many of those who have responded particularly well to HAART. Many have resumed reasonably normal sexual and political lives relatively free of the anxieties and technoneuroses brought on by the antiretrovirals themselves and the HIV antibody testing and counseling regime. The first section of Chapter Six, “Will to Live,” is appropriately titled “Lifelong AIDS,” for it reveals the stark contours of the limits and promises of a largely biomedical “fix” for what is clearly and also about sickness in the social-structure.
There is little for a reader about which to complain. A quotation is repeated and some Index entries are incorrect, but there are extremely few typos or grammatical infelicities. I want to highlight one particular kind of problem that mars Biehl’s presentation at many points, however. Biehl claims that “Epidemiological surveillance services registered the first HIV/AIDS cases in 1982.” This conflates HIV and AIDS, as he does ad infinitum, and HIV hadn’t yet been identified, either. It doesn’t excuse him to say that everyone else does, too - for real damage is done in such conflation, for example, that “HIVab+” means a death sentence and a rhetorical slide to “AIDS” to “contagious” to social leperhood.
Moreover, “AIDS” had not yet congealed into a biomedical category, either. This leads him at many, many points to confuse cause and effect, vector and pathogen, infection and antibody, for example, when he says that “the homosexual/bisexual mode of transmission accounted for less than thirty percent of the total number of AIDS infections.” Ontologically, epidemiological notions do no counting; epidemiologists do. Logically, “bisexual” mode of transmission (of HIV) has also to mean “heterosexual,” which then must be explained anew for its expanded and more complicated, often hidden properties. Empirically, the “total number of AIDS infections” would multiply the epidemiological categories of “HIV antibody positive” and “AIDS diagnoses” by at least five-fold if not twenty-fold, that is, in terms of pulmonary tuberculosis, cryptosporidium, toxoplasmosis, pneumocystis carinii pneumonia, persistent diarrhea, anaemia, and so on. As well, this undercuts the force of Biehl’s informants who rightly point to the endemic state of such infections and problems prior to the arrival of HIV and AIDS. Further, it suggests that these individual infections or pathogens are sexually transmitted and that there are characteristic differences along the lines of sexual identity (i.e., “heterosexual” transmission of this, “homosexual” transmission of that).
The lengthy discussion of subjectivity comprising Chapter Four is difficult to follow and jargony, although its theorization of “technoneurosis” (and elsewhere, of “auto-bioadministration”) is spot-on. Biehl argues from the standpoint of careful analyses of case studies that the “confused and painful experience of Oxygen [the pseudonym of a sick and anxious woman repeatedly testing HIVab negative] was somewhat technically engineered. This testing apparatus played a determinant role in the emergence of a socially visible imaginary AIDS.”
Nevertheless, this and other chapters exemplifies well the Foucaultian thesis that discourse about subjects (in this case, about the technical aspects of an HIV antibody test and about what constitutes “good” and “bad” sex) creates new subjects: the worried well, the sick and the anxious, the promiscuous and the guilt-ridden. The algorithm of HAART adherence is predictable on sociological grounds. “Failures” are on blamed on the individual, not the system; not the social structure; not the lack of housing, food, education, and employment. Nor was the HAART roll-out so universal and stable as its proponents claimed
Laid atop an already struggling public health system, Biehl found that “the universal availability of essential medicines has been subject to changing political winds; treatments are easily stopped, and people have to seek more specialized services in the private health sector or, as many put it, ‘die waiting in overcrowded public services.” The meaning of “primary care” has changed to mean selective targeting of those more likely to live, and triage has replaced universality as a metaphor of coverage. Clients become clinical trial subjects. Treatment trumps prevention. Risk becomes individualized instead of increasingly social. Infection becomes increasingly moral and subject to religious edict. HIV antibody test counselors compete with one another not to be the one to read the positive bands. Social scientific insights are swept aside.
This newest addition to Princeton University’s (In)Formation Series, edited by Paul Rabinow, is a sober but accessible and extremely humane text, just as well constructed as attractively presented. The black-and-white photographs taken by Torben Eskerod are arresting and invite commentary, speculation and, in my case, envy. Around this exciting new work could be wrapped all manner of upper-division or graduate-level courses in anthropology, public health, medicine and even political-economy. Like too many countries and cultures to count, ill-tempered politicians, cynical epidemiologists and overburdened healthcare workers in Brazil have contributed to an official portrait of HIV transmission dynamics, infectious burden and prevention efforts that often bears little resemblance to reality. Once again, the inequalities of social structure get off scot-free. This ethnography is a major contribution to social theory and justice.