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Ongoing Crisis: Managing HIV as a Chronic Condition in Biomedicalized Bureaucracies

  • Author(s): Darling, Katherine Weatherford
  • Advisor(s): Clarke, Adele E
  • et al.

Formerly a critical diagnosis, in the U.S. HIV is now classified as a chronic disease that can be survived and managed. From the early days of the AIDS crisis in the 1980s through the HAART (Highly Active Antiretroviral Treatments) era, HIV has remained an expensive illness. Many of the costs have been born by the public health systems of U.S. cities and states as well as the federal HIV program named for pioneering AIDS icon, Ryan White. In the mid-1990s, expensive but effective pharmaceutical HIV treatments called HAART became widely available through public and private health insurance in the U.S. Over the same time, cost containment strategies restructured US healthcare, and today inequalities remain entrenched in HIV health systems across the US and beyond.

In this dissertation, I ask how and for whom HIV becomes “potentially chronic” and definitely expensive in the midst of US healthcare reforms. The biomedical and bureaucratic re-classifications of HIV as a chronic illness provide a case for examining how the problem of healthcare costs becomes linked to the bodies and lives of people and particular populations: What are the embodied and institutional consequences of HIV becoming a “life-long” disease? I ask what it means for HIV to be defined, managed and experienced as a chronic illness in U.S. healthcare and policy and what is at stake in this re-classification. In the context of managing costs and chronic conditions simultaneously, who has access to experiencing HIV as a chronic condition? How, why, and through what processes is this chronicity achievable for some people?

Based at a San Francisco HIV clinic, an early epicenter of the HIV/AIDS epidemic that later became a hub of biomedical research and global model for HIV care, I ethnographically traced how patients and staff are navigating biomedical bureaucracies and health insurance markets as they attempt to obtain and provide healthcare. With an historical and ethnographic account of recent U.S. health care reform and its on-the-ground implementation at San Francisco General Hospital’s HIV Outpatient HIV Clinic (Ward 86), I examine the production of chronicity as a state of ongoing illness or managed life. My data include: ethnographic observations, interviews with people living with HIV, healthcare providers and program administrators, and analysis of policy documents and archival materials. Drawing from theoretical traditions across racial theory, science and technology studies and medical sociology, I use my ethnographic reflections as a lens on the politics of insurance, healthcare finance, and personal health information within the context of stratified citizenship and speculative biocapitalism in the U.S.

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