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AIDS Activist Spencer Cox Dies of AIDS-related Causes

Spencer Cox, a leading AIDS activist who played a key role in the development of effective antiretroviral therapy, died of AIDS-related causes at Columbia Presbyterian Hospital in New York City last Tuesday, December 18. He was 44.

Cox was a member of ACT UP/New York's Treatment and Data Committee and a co-founder of its offshoot, the Treatment Action Group (TAG), at a time when activists, doctors, health officials, and researchers alike were teaching themselves about HIV and its treatment.

"The significance of Spencer's contributions to HIV treatment research is immeasurable," said Tim Horn, TAG's new HIV Project Director. "Not only did he apply his genius and perseverance to ensure speedy access to desperately needed antiretrovirals, he made sure we had the sound, scientific data necessary to make informed treatment decisions -- a 2-pronged research activism approach that remains with us to this day."

Patrick Spencer Cox was born March 10, 1968, near Atlanta. Escaping Georgia's homophobic climate, he studied theater and literature at Bennington College in Vermont. Throughout his life, he was an avid fan of theater and movies, often regaling friends with impressions of stage and screen divas.

Cox moved to New York as a teenager in the late 1980s and was diagnosed with HIV soon thereafter. He worked as an intern and later on the staff of amfAR (the Foundation for AIDS Research) and co-founded the Community Research Initiative on AIDS (now the AIDS Community Research Initiative of America).

As a member of ACT UP/NY and TAG, Cox helped push HIV protease inhibitors through the development pipeline, as portrayed in the award-winning documentary How to Survive a Plague.

"I'm still amazed how young he was during the ACT UP and TAG years, meeting with the likes of [National Institute of Allergy and Infectious Diseases head Anthony] Fauci and [former National Institute of Health director Harold] Varmus, and blowing their socks off," said fellow TAG co-founder Peter Staley. "We were all just kids, and he was seven years my junior. But mostly I'll remember his dark humor, which helped us all handle those years a little easier."

Cox developed a novel clinical trial protocol for testing HIV protease inhibitors, in which participants added a new medication or a placebo to a background combination of existing drugs.

The trial design was controversial, as some felt it was unethical not to give all participants the new drugs. An article by Cox in Barron's magazine defending the design made him "the most-hated AIDS activist in America," according to Plague director David France. But the first such trial was able to show a 50% reduction in deaths over 6 months, leading to protease inhibitor approval in late 1995 and early 1996.

"Spencer reminded us that faster answers to treatment questions are not always the best," said former ACT UP/Golden Gate member Virg Parks. "That pragmatism has a place even when making demands of a monolithic drug approval process."

"He wanted the facts and was always very meticulous about getting good data rather than just screaming for getting something approved," Fauci told the New York Times.

Today, ACT UP and TAG are credited with lasting changes in the way new drugs are developed, clinical trials are conducted, and healthcare providers relate to their patients, and the movement defined by Cox and his comrades has inspired a new generation of activists.

Life after TAG

Once protease inhibitors were approved and combination antiretroviral therapy was widely adopted, AIDS activism entered a lull as some people went into the medical field or AIDS service organizations, while others tried to put the epidemic behind them. But the burden of grief was not so easy to shrug off.

Cox's later life and death exemplify the fate of many activists and people with AIDS who recovered their health but found it difficult to resume normal lives after witnessing so much death, or to find equally meaningful work.

Cox left TAG in 1999, endured a period of serious illness and living on disability for several years. Over the years he had periodic bouts of methamphetamine use, went on and off antiretroviral treatment, developed resistant virus, and came down with AIDS-related illnesses attributed to inconsistent therapy.

Around 2005 Cox founded the Medius Institute for Gay Men's Health, a think tank focusing on gay men's emotional health including depression and substance use and their relation to HIV infection. The institute folded due to lack of financial support, but he continued to do freelance writing on topics such as post-traumatic stress and survivor guilt.

"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," he wrote in the June 2006 issue of POZ. "[M]aybe once in a while, we need to stop and remember what happened to us. Maybe if we made some room for our sadness, we wouldn't be so depressed."

Cox returned to Georgia, but he found that the political climate remained hostile. In recent years he spent increasing amounts of time interacting on news and social media websites such as Gawker and Facebook, offering irascible argument, biting wit, and pictures of bulldog puppies.

In the months before his death Cox went back to New York, where he participated in events related to How to Survive a Plague. His death last week was attributed to AIDS-related causes, but many friends and fellow activists blamed a legacy of despair.

"Spencer died of despair, racism, homophobia, AIDS-phobia, and a host of other ills that afflict our country and our world," TAG co-founder and current director Mark Harrington wrote in a memorial statement. "He saved millions of lives, but could not save his own."

"His sharp wit often masked his thoughtful kindness, and his joyful and devilish spirit sometimes masked the inescapable wounds of the early years of the epidemic," added Brenda Lein, program manager for the Delaney AIDS Research Enterprise at UCSF. "History will remember Spencer as a hero of the AIDS activist movement and likely everyone who knew him will remember him also as a casualty -- not just of AIDS, but of being present during the most difficult years of the epidemic."

But Mr. Cox emphasized the joy as well as the pain of the early AIDS years. In an October POZ blog entry commenting on the film -- which brought the founding TAG members back into the spotlight and helped spur an ACT UP revival -- he recalled "the sheer joy inherent in the whole thing."

"We laughed so very much...we sang, we made love...and we very consciously tried to make sure that, when the plague was over, there would be something left that would have been worth preserving," he continued. "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."

"The loss and mourning of Spencer Cox calls upon activists to find sustainable and joyous ways to engage in political work," said Alan Guttirez, a member of the new ACT UP/San Francisco. "Spencer is leaving us with an obligation to de-stigmatize drug use and enhance the life opportunities of people living with HIV."

Mr. Cox is survived by his mother and brother. A memorial service will take place at 3 p.m. on Sunday, January 20, at the Cutting Room, 44 East 32 Street in New York. Donations in his memory may be made to the Ali Forney Center, Broadway Cares/Equity Fights AIDS, or HeavenSent Bulldog Rescue.

[Another version of this obituary appeared in the December 27, 2012, issue of the Bay Area Reporter.]

12/27/12