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PASSAGES: AIDS activist Spencer Cox dead at 44
Memorial service information below
by David France
2012-12-19

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Spencer Cox, the pivotal AIDS activist who co-founded two important and ongoing AIDS treatment initiatives and achieved great strides in focusing global attention on the disease and the need for drugs to control the epidemic, died this morning at Columbia Presbyterian of AIDS related causes. He was 44 (March 10, 1968).

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 (known at the time as The American 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.

Cox 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 . 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 was 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 cover story that made him, briefly, the most-hated AIDS activist in America. Ultimately he was vindicated.

"Spencer single-handedly sped up the development and marketing of the protease inhibitors, which currently are saving 8 million lives," says TAG executive director Mark Harrington . "He was absolutely brilliant, just off the charts brilliant,"

After the plague was transformed with the drug revolution, he was the first to see there would be a psychological burden to address in the gay community members who survived the worst of the epidemic. He founded the MEDIUS INSTITUTE FOR GAY MEN'S HEALTH, a think tank focusing on gay male emotional health. MEDIUS produced several important reports but failed to find the financial support it needed to continue his work.

His HIV infection was initially responsive to the medications (per Dr. Howard Grossman ), but he began developing resistance around 2000. He was hospitalized in 2009 with AIDS related symptoms, but eventually returned to health. He entered Columbia Presbyterian on the 13th.

I interviewed Spencer many times over the years, perhaps even in the NYT pages. I quoted his prescient observations in 2008 in this article: http://nymag.com/news/features/45785/.

I also feature him in the 2012 film HOW TO SURVIVE A PLAGUE. He wrote about that experience his last blog for POZ: "If I have one piece of advice for young, aspiring activists, it is to always hold on to the joy, always make it fun. If you lose that, you have lost the whole battle."

In an outtake from my interview with him, which I am posting on FB today, he describes what, if any, lessons came from the plague, and from the remarkable effort it took to develop effective drugs, 15 years after HIV's first headlines in 1981:

"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?"

David Barr, a cofounder of TAG, recalled Cox: "He was so young. You can't understand how incredibly scary it was for him to sit down at the table of the FDA Anti-Viral Advisory Committee as the "PWA representative" and take on the scientific establishment. He was a kid. He had no science background whatsoever. He took a contrary position on d4T approval, opposing every scientist at the table (and that of many activists as well). It took incredible courage and a whole lot of arrogance. You need to understand how lonely it was to sit at those tables, how much you felt like a complete fraud, yet also right and right to be there. As hard as it was for the rest of us, it was harder for Spencer. He was younger,he had less education, he grew up with less support and encouragement. "

David France is producer/director of How to Survive a Plague, www.DavidFrance.com .

www.SurviveAPlague.com .

Also see: www.youtube.com/watch .

Memorial service

A memorial service for AIDS activist Spencer Cox will be held on Sunday, January 20 at The Cutting Room, 44 East 32 Street (at Park Ave), New York City. It will run from 3 to 6 pm. Contact me if you need more details. I'll post again after the holidays. Due to space constraints, we would hope that attendees will be people who knew, worked with, or had other contact with Spencer—though, of course, no one will be turned away. I previously posted information about donations, which I urge anyone who's so inclined to distribute widely. Thank you all.

Spencer Cox's family and friends are honored to announce the establishment of three memorial funds in his name, in lieu of requests for flowers and other sentimental gestures he would likely find deplorable. We hope that everyone will consider giving — and digging deep — to help these organizations:

Broadway Cares/Equity Fights AIDS

http://www.broadwaycares.org/donate

[If donating online, please write "Spencer Cox" in the "in memory of" field.]

Ali Forney Center

http://www.aliforneycenter.org/index.cfm?fuseaction=donorDrive.personalCampaign&participantID=1642

[A page for donating in Spencer's memory has been set up by the Ali Forney Center.]

HeavenSent Bulldog Rescue

http://www.heavensentbulldogrescue.com/

[Checks are best, with "In memory of Spencer Cox" added to memo/note line.]

All donations are 100% tax deductible.

TheInternational Association of Providers of AIDS Care will be establishing a scholarship fund in Spencer's memory.


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