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From Andy Towle:
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.
“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 make 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?”
Indeed.
For anyone who tells you AIDS is a survivable, manageable disease, please remind them that Spencer’s choice was surely not to leave us at 44. And that our movement could have used his amazing voice for another 44 years, thank you very much. We are still losing people. People who really matter to our world, our movement, and our loved ones.
People are still dying. How much clearer can it be than losing Spencer Cox at 44?
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Also from David France, via Towleroad:
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.
Read more: http://www.towleroad.com/2012/12/aids-activist-spencer-cox-dies-at-44.html#ixzz2FRayu1x9
A dear friend of mine is very fortunate to be a long-term HIV survivor and continues to thrive after nearly 25 years when he was first diagnosed. Hopefully, his life will continue to be healthy and long, but of course, he is grateful for every day he has (as I am).
Sorry to hear about Spencer Cox. Condolences to his family and friends. Although there are some good drug therapies out there, they don’t always work, or at least not for everyone.
Thanks for the post.
Too many have been lost. I’m so sorry.
It is as if we’ve moved into some odd new no-AIDS-deaths era. You just don’t hear about people dying of AIDS complications. But they do, and it’s not rare.
It’s important to keep these deaths visible in the public eye. AIDS is not a survivable chronic illness. Not now, not yet — and not anytime soon.
If you don’t have it, don’t get it. If you’ve got it, don’t pass it. If you’re sick with it, get help and get medicine.
Condolences to all his colleagues and friends. An American hero.
The band still plays on.
You are quite right, it still does. Thanks for that.
so true. tweete and recommended with thanks, teddy.
“You worry about being kind. You worry about being generous. And if it’s not about that what the hell’s it about?”
~ He said it right. Godspeed, Spencer Cox.
REC-OH-mmended. RIP Spencer Cox.
Kevin and I just watched How to Survive a Plague. His work (and those of the other AIDS activists of the 90s) was really inspirational. So smart and so brave.
The war is not over. He will be missed.