Spencer Cox, an AIDS activist who played a key role in the development of effective antiretroviral therapy, died of AIDS-related causes at a New York City Hospital Tuesday, December 18. He was 44.
Mr. 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, at a time when activists, doctors, 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."
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.
Mr. 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 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, Mr. Cox helped push HIV protease inhibitors through the development pipeline, as portrayed in the documentary How to Survive a Plague, which has been short-listed for a possible Oscar nomination.
"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," TAG co-founder Peter Staley told the Bay Area Reporter . "But mostly I'll remember his dark humor, which helped us all handle those years a little easier."
Mr. Cox developed a novel clinical trial protocol for testing HIV protease inhibitors, in which participants added either a new medication or a placebo to a background regimen of any existing drugs. The trial design was controversial, as some felt it was unethical not to give all participants the new drugs. But the first such trial was able to show a 50 percent reduction in deaths over six months.
"Spencer reminded us that faster answers to treatment questions are not always the best," said former ACT UP/Golden Gate member Virg Parks.
Life after TAG
Mr. Cox's later life and death exemplified the fate of many activists and people with AIDS who largely recovered their health but found it difficult to resume normal lives after witnessing so much death, or to find equally meaningful work.
Mr. Cox left TAG in 1999, enduring a period of serious illness and living on disability. He had periodic bouts of methamphetamine use, went on and off antiretroviral treatment, developed resistant virus, and came down with AIDS-related symptoms attributed to inconsistent therapy.
Around 2005 Mr. Cox founded the Medius Institute for Gay Men's Health, a think tank focusing on emotional issues including depression and substance use. 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.
"[M]aybe once in a while, we need to stop and remember what happened to us," he wrote in the June 2006 issue of Po z. "Maybe if we made some room for our sadness, we wouldn't be so depressed."
Mr. Cox had returned to Georgia, but found that the political climate remained oppressive. In recent years he spent increasing amounts of time 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 Mr. Cox was back in New York, where he participated in events surrounding 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."
Local advocates also mourned his death.
"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," said Brenda Lein, program manager for the Delaney AIDS Research Enterprise at UCSF.
But Mr. Cox emphasized the pleasure as well as the pain of the early AIDS years. In an October Poz blog entry commenting on the film – which has helped spur an ACT UP revival – he recalled "the sheer joy inherent in the whole thing."
"If I have one piece of advice for young, aspiring activists, it is to always hold on to the joy, always make it fun," he wrote. "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," Alan Guttirez, a member of the new ACT UP/San Francisco, told the B.A.R. "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 be held Sunday, January 20, at 3 p.m. at the Cutting Room, 44 East 32nd Street in New York. Donations in his memory may be made to the Ali Forney Center (http://tinyurl.com/bokz8e4), Broadway Cares/Equity Fights AIDS ( http://www.broadwaycares.org/donate), or HeavenSent Bulldog Rescue ( http://www.heavensentbulldogrescue.com).