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“I am going to fight them, my patients are going to fight them, and you goddamn well better fight them!” —Dr. Suzanne Phillips in a clip from How to Survive a Plague
It was August 1994, and TAG, the Treatment Action Group (I was a cofounder), had become the most hated AIDS organization in the country, while TAG member Spencer Cox had become the most hated AIDS activist. Hated by other AIDS activists. The “them” in Suzanne Phillips’s rallying cry above were TAG’s activists, and she was railing against “the boys” during a weekly ACT UP meeting after we had shocked “AIDS Inc.” with a letter to the Food and Drug Administration (FDA) asking them not to grant accelerated approval to saquinavir, one of the first protease inhibitors.
We felt that Hoffmann-La Roche, its manufacturer, was abusing the accelerated approval process by rushing saquinavir to market before showing how it could be used in combination with previously approved drugs to extend lives. But by this time in the crisis, the status quo of AIDS patient advocacy, driven by the demands of HIV-positive gay white men (often with their gay doctors) in San Francisco and New York, was “just give us the drugs now and we’ll figure out how to use them.”
While this approach undoubtedly prolonged the lives of many proactive patients with expert docs who attended all the AIDS conferences, it was bound to be a long-term public health fiasco, offering little guidance on best practices for the vast majority of people living with HIV outside of these white gay enclaves.
