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ACT UP Activist Spencer Cox Has Died at Age 44

ACT UP Activist Spencer Cox Has Died at Age 44

by Karen Ocamb on December 19, 2012

(UPDATED with memorial and contribution info below) In this day and age when the CDC is simultaneously touting the possibility of the “End of AIDS” and the rise in new HIV infections among young gay and bisexual men of color, those of us who fought hard to even draw attention to the AIDS pandemic – who tried to hold back the tsunami of death – are sometimes flummoxed by the relative inattention today, as if HIV medications will always be available and will work for everyone. It’s as if no one dies of AIDS any more. Not true. On Tuesday, Dec. 18, Spencer Cox, one of the AIDS activists who helped push the FDA to test those life-saving drugs faster, died of AIDS-related illness. He was 44.

“Spencer single-handedly sped up the development and marketing of the protease inhibitors, which currently are saving 8 million lives,” says Treatment Action Group executive director Mark Harrington in an obit by filmmaker David France (below). “He was absolutely brilliant, just off the charts brilliant.”

France, the producer/director of the Oscar-nominated documentary about ACT UP in New York entitled “How to Survive a Plague” posted an outtake from the film in which Cox describes lessons from the AIDS crisis that could inspire us all:

“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?”

 

Here’s David France’s obit:

Spencer Cox has died

By David France, Producer/Director of the Oscar-nominated “How to Survive a Plague

Spencer Cox, the pivotal AIDS activist who co-founded two important and ongoing initiatives, died [Tuesday, Dec. 18] 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, 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. 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 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?”

Born Patrick Spencer Cox — in Decatur GA, I believe. His brother Nick is in NY.

Info from his family and friends distributed via Rex Wocker:

MEMORIAL SERVICE

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.

We’re also pleased to announce that the International Association of Providers of AIDS Care will be establishing a scholarship fund in Spencer’s memory.

{ 2 trackbacks }

Please Watch: AHF Remembers the Chris Brownlie Hospice for People with AIDS
January 28, 2013 at 11:40 AM
Scott Tucker
May 9, 2014 at 2:54 PM

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