A Breakthrough Moment in AIDS History
As Staley recounts in a blog post today on POZ.com, the activists impressed an auditorium full of doctors and researchers with “A National AIDS Treatment Agenda,” a report that offered not only a damning assessment of the state of AIDS treatment research but also several insightful strategies for fixing it—and for putting the AIDS community on equal footing with researchers, clinicians, and trial sponsors.
For example, the report demanded that trials provide medical treatment for all participants: “Researchers and sponsors want data which may lead to marketing approval; subjects want health care.” The activists also called for an end to the exclusion of “women, poor people, people in rural areas, people of color,” and other groups from trials of potential new treatments.
“As citizens of this country, we have the right to demand that our government deploy its resources to save the most lives right now,” the report concludes. “Those with the power to redirect our nation’s AIDS research effort must listen to and work with us. We will not rest until they do so.”
To see how those words changed AIDS history, see Staley’s post, excerpted below and available in full at POZ.com, and download a PDF of this pivotal research agenda.
By Peter Staley
June 9, 2014
25 years ago today, the Fifth International AIDS Conference closed in Montreal, and AIDS activism changed forever. The white coats — the medical establishment that controlled our destinies — realized they could no longer ignore us. People living with HIV and their fellow advocates pushed their way into the conference (literally, during the opening ceremony), and came armed with a sophisticated analysis of the sorry state of AIDS treatment research.
ACT UP New York’s Treatment & Data Committee released a fifteen page report titled A National AIDS Treatment Agenda that wowed the researchers in attendance. I have so many powerful memories from that conference, but one, completely-unrecorded event stands out. If the annual international AIDS conferences had “A-Lists,” then the must-attend A-lister event each year was always amfAR’s big invitation-only reception. Since most of the T&D boys had slept with many of amfAR’s young staffers, we easily procured some invites. As I worked the room, it became obvious that everyone was buzzing about ACT UP’s report. I circled back to Mark Harrington, and we marveled at what felt like a pivotal moment for AIDS activism. We had no only demanded a seat at the table, we had earned it….