Spencer Cox, one of the world’s most prominent AIDS activists and a highly respected “citizen scientist” has passed away.
Spencer Cox, the pivotal AIDS activist who co-founded ACT-UP and TAG (Treatment Action Group) and was featured in David France’s recent documentary How to Survive a Plague, has died at Columbia Presbyterian of AIDS related causes, France writes in a note:
As a very young man fresh from Bennington, where he studied Theater and English Literature, he arrived in NYC after finishing just 3 years. He was diagnosed with HIV soon thereafter. By 1989, at age 20, he had become spokesman for ACT UP during its zenith through the early 90s. A member of its renowned Treatment & Data committee, and later co-founder of TAG (the Treatment Action Group), he schooled himself in the basic science of AIDS and became something of an expert, a “citizen scientist” whose ideas were sought by working scientists. In the end, Spencer wrote the drug trial protocol which TAG proposed for testing the promising protease inhibitor drugs in 1995. Adopted by industry, it helped develop rapid and reliable answers about the power of those drugs, and led to their quick approval by the FDA.
Even before ACT UP, he began work for amfAR (Foundation for AIDS Research), first as a college intern, eventually going on staff as assistant to Director of Public Affairs, responsible for communications and policy). He left there to co-found the Community Research Initiative on AIDS (now the AIDS Community Research Initiative of America, ACRIA) with Dr. Joseph Sonnabend and Marisa Cardinale (Marisa Cardinale <email@example.com>). At ACRIA, he ran public affairs and edited all publications.
From 1994 to 1999, he was Director of the HIV Project for TAG, where he did his ground breaking work in drug trials designs. He designed the drug trial adopted in part by Abbott as they were developing Norvir, the first Protease Inhibitor to head into human trials. It had an “open standard-of-care arm,” allowing people on the control arm to take any other anti-AIDS drugs their doctors prescribed, versus the arm taking any other anti-AIDS drugs plus Norvir. It was this study that showed a 50% drop in mortality in 6 months. Norvir was approved in late 1995. Though the results were positive, the proposal sharply divided the community, many of whom thought it was cruel to withhold Norvir on the control arm. Spencer defended himself in a controversial BARON’S coverstory that made him, briefly, the most-hated AIDS activist in America. Ultimately he was vindicated.
Writing for Poz in 2006, Cox wrote:
“Some of my friends lived for almost 20 years through a flood of death, illness, fear and sadness. And when effective treatment came along and the dying slowed—at least in much of the developed world—everyone assumed that things had gotten better, that we didn’t need to think about it anymore. But I don’t think that’s true. I think those of us who were in the middle of it were deeply affected by what we experienced and that it affects the choices we make today. I wonder if that’s not partly why the depression rate among gay men is about three times higher than among straight men.
“Because of my memories of those times, I try to appreciate life and the people special to me. But I can also see that I have to fight off an ongoing fear that things could go suddenly, terribly wrong, that the worst-case scenario is also the most likely.”
“What I learned from that is that miracles are possible. Miracles happen, and I wouldn’t trade that for anything. I wouldn’t trade that information for anything. I don’t know what’s going to happen. I don’t know what’d going to happen day to day. I don’t know what’s going to happen next year. I just now, you keep going. You keep evolving and you keep progressing, you keep hoping until you die. Which is going to happen someday. You live your life as meaningful as you can make it. You live it and don’t be afraid of who is going to like you or are you being appropriate. You worry about being kind. You worry about being generous. And if it’s not about that what the hell’s it about?”
Farewell Spencer, and thank you for all your hard and contribution