Earlier this week, the key AIDS Coalition to Unleash Power (ACT UP)/Treatment Action Group (TAG) activist Spencer Cox died in New York of AIDS-related causes. He was 44 years old. Cox and his colleagues essentially made the current, life-extending treatment of AIDS what it is through their knowledge, force and will. As one person in David France's How to Survive a Plague documentary puts it, "Activists created a system that was able to do everything faster, better, cheaper, more ethically and more effectively." Gay men (with the help of crucial allies) essentially saved themselves, though the documentary warns that people with AIDS are not yet out of the woods. Cox's death is a very sad reminder of just that.
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, 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 ). 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 groundbreaking 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.
It should be noted that Cox was also Gawker commenter FrenchTwist40. (misslinda points out that you may have known him under his old Gawker name, Shanghai Lil.) He and I discussed the site when I met him while moderating a Plague Q&A after a screening at the IFC Center in October. He was smart and passionate and we also talked about a project he had spearheaded. It was a fascinating, important idea and I wanted to find a way to somehow work with him on it. I never got around to making that happen and that I deeply regret. From what I could tell, he had a terrific mind.