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Counting the Placebo Dead: Early Aids Activism with and against Placebo-Based Drug Trials

Thu, November 8, 12:00 to 1:45pm, Westin Peachtree, Floor: Seventh, Augusta 3 (Seventh)

Abstract

In the years before multiple drug therapy to treat HIV infection, staying alive often depended on access to drugs to reduce or prevent the opportunistic infections that killed people living with AIDS. Drug access was a significant political goal of AIDS activist organizations of the time, marking an in-process, flexible strategy to an emergency created by government inaction. The late 80s and early 90s were also a time of lively medical research cultures, in which ordinary HIV positive people participated in a range of ways, including participating in double-anonymized placebo drug trials, sometimes as the only way they accessed emerging drugs. In this context, activists engaging with medical research both took up and contested research protocols related to drug testing and access. Trials using placebo protocols were an especially tangled site of intervention.

In this paper, we reflect on the nuanced medical interventions AIDS activists in the Canadian context made in placebo trials. Drawing on interviews with people involved in specific campaigns around placebos for two key AIDS drugs (aerosolized pentamidine and Ribovarin), we examine a distinction they came to make between social relations of research and social relations of treatment; this distinction surfed the line between emergence and emergency, mobilizing the brilliant and grounded knowledge that activists had in the service of keeping one another alive and thriving. Intervening in placebo trials mobilized people in important ways, because they forced an accounting of people lives, present and potential. As one activist said about their opposition to a trial in Canada on a drug that had already been tested in France: “The very design of the trial meant that the only way for the trial to be successful was to count the number of people who died on placebo.” We investigate how activists negotiated making better drugs while also keeping people alive, and reflect on what lessons we might draw from this historical activist work for ongoing struggles around drug testing and access affecting people today.

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