Spencer Cox’s Legacy as a Treatment Activist and a Gay Man With AIDS
BY PAUL SCHINDLER | When news surfaced on December 18 that Spencer Cox, one of the most important HIV treatment activists going back more than two decades, had died of AIDS-related causes at a Manhattan hospital at the age of 44, a haunting video clip of the Georgia native soon surfaced on Facebook.
In an outtake from “How to Survive a Plague,” David France’s recent widely acclaimed documentary about treatment activism in the years leading up to the introduction of protease inhibitors in the mid-1990s, Cox spoke about the dramatic shift the success of those drugs created not only in the health of people with HIV, but also in their emotional well-being.
“What I learned from that is that miracles are possible,” he said. “Miracles happen, and I wouldn’t trade that for anything… 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? That’s what I’ve learned.”
For Peter Staley, Cox’s fellow treatment activist at ACT UP and in launching the Treatment Action Group (TAG) in 1992, those comments were made by Spencer the activist, someone drawn to offering inspiration to a generation of gay men who were scarred by — but had survived — the worst years of the AIDS epidemic.
Others have also commented on the joy that often informed Cox’s activism. Mark Harrington, TAG’s executive director who, like Cox and Staley, was there from the start, described his friend as “charming” and “witty” and said spending time with him at a screening and Q&A for France’s film reminded him that Cox “was a lot of fun to work with.”
France said, “The word that came to me about Spencer was his generosity” — a spirit, he said, indivisible from his activism. The filmmaker recalled a discussion with Cox years ago about the politics of AIDS vaccine research. France was struck not only by Cox’s insight that an understanding of the science was necessary in assessing the political realities, but also his recognition that France didn’t yet understand that science. Cox, France said, patiently backed up and said, “Well, this is what you need to understand…”
Cox’s surviving sibling, Nick, who is four years younger than Spencer, in a email conversation with Gay City News, also pointed to his brother’s “charm and intelligence.” Those strengths, Nick acknowledged, also had flip sides. Cox wrestled with drug resistance, depression, and anger over the continued stigma he encountered as an HIV-positive man, even in the gay community. There were also periods in his life when he used crystal meth and times when he went off his AIDS medications — those latter decisions likely leading to three hospitalizations in recent years for AIDS-related illnesses. None of those close to Cox have a good understanding of the interplay among all those factors.
“Spencer was a difficult personality even to his friends and family,” Nick said. “He had many sides to his personality, some of which even contradicted each other. We are still trying to process his death and put some of these pieces together but he was enormously adept at letting you see the parts he wanted you to see.”
Cox’s death, Harrington said, “just left me with a whole lot of questions.” An activist who worked so hard for treatment breakthroughs that saved millions, Staley said, was “evasive” in talking about the treatment decisions he was making for himself.
Cox, however, kept none of the underlying issues he juggled a secret, and his death became an occasion for very public speculation about what it meant. Henry Scott, the former publisher of Out magazine, wrote on his WehoVille.com blog that it pointed up the dangers that crystal meth continues to pose for gay men. Laurie Garrett, a well regarded AIDS writer, was blunter, saying online, “I am angry at Spencer for falling down the meth rabbit hole that is claiming the sanity of tens of thousands of gay men in America, making them careless about their own health and callous about the well-being of others.” Benjamin Heim Shepard’s stinging blog response to both of them was a reminder of how often sexual practices and drug use have become fodder for bitter divides over issues of prevention, health, and stigma in the gay community since AIDS’ earliest days.
France also expressed concerns about stigmatizing Cox’s life and those of other gay men, but shared the view of Nick Cox, Staley, and Harrington that even those closest to him did not know all the details of Spencer’s final months. None knew of any recent meth use, and France thinks it’s likely Cox had not used since recovering from grave AIDS complications in 2009 that cost him sight in one eye. Similarly, they are aware that Cox stopped his medications some weeks before his final hospitalization but don’t know when he was last on his regimen. How depression or drug resistance played into the equation is similarly unknown, though both Staley and Harrington recall him being upbeat and optimistic when they saw him recently.
“He was witty, charming, and lucid,” Harrington recalled about recently seeing Cox. “He didn’t seem like someone planning his imminent demise.” Acknowledging it was hard to understand how someone who knew the need for treatment adherence as well as Cox did would go off his meds, Harrington noted he had survived earlier such episodes and “maybe he thought he could dodge it again.”
Debates over how Cox died, of course, threaten to obscure his remarkable achievements in life and the fact that he was not just a dedicated activist but that he was a singular activist who brought very specific insight, energy, and commitment to the fight against AIDS. The New York Times obituary for Cox quoted Dr. Anthony S. Fauci saying, “Spencer pushed for data-driven decisions. He wanted the facts and was always very meticulous about getting good data rather than just screaming for getting something approved.”
In 1992, when TAG was launched, that idea was controversial. For four years, ACT UP had demanded that the government move faster. The disillusionment with the inadequacy — and toxicity — of the earliest treatments led activists like Cox to regroup. He was the first to engage the statisticians among federal health officials on questions of clinical trial design, according to Harrington.
Referring to the clinical trial of ritonavir, one of the first protease inhibitors approved for use, France said, “The trial design was specific to him. He wrote that up, though it was not his exclusive thinking.” Cox had the insight to look outside the virology field and examine drugs trials for cardiovascular treatments, France said. The ritonavir approach, Harrington and Staley explained, allowed trial participants to stay on medications they were already taking and increased the percentage who would receive the trial drug itself rather than a placebo — both of which factors eased ethical concerns regarding people who were very sick.
“Spencer definitely was almost religious about his belief in good science,” Staley said.
Patrick Spencer Cox was born in Atlanta, and after his parents divorced at age five, he and his brother were raised by their mother. He came out at 15 and was engaged in acting and creative writing into college, but arrived in New York after three years at Bennington College “as an activist in search of a cause,” according to his brother, who recalled that Spencer helped found an underground newspaper in high school and forestalled punishment for that from administrators by threatening to go to the ACLU.
Cox’s first job in New York was working in the press and policy department at amfAR and he later helped Dr. Joseph Sonnabend found the Community Research Initiative on AIDS. He worked at TAG from 1992 until 1999, during which time he and the other early treatment activists were “virtually inseparable,” Harrington recalled.
According to France, by 1998 Cox’s virus was breaking through despite a protease regimen. “He was constantly fighting multi-drug resistance,” France said. “His HIV was never fully under control.”
About a decade ago, friends learned of Cox’s first decision to suspend his drug regimen, and he soon landed in the hospital with AIDS-related pneumocystis pneumonia, which afflicted him again half a dozen years later. After his 2009 hospitalization, he returned to Georgia to live with his mother for what his brother described as a period of “healing.” It was in Georgia where France filmed the interview with Cox he posted on Facebook.
In 2005, Cox launched an effort he called the Medius Institute for Gay Men’s Health, which he said would take a holistic approach to the needs of men in the community. Depression, he told Gay City News at the time, would be an early priority for Medius. “Despite the key role that depression and other mental health issues play in influencing risks of HIV and other preventable diseases, gay men’s mental health needs have gone tragically unaddressed,” Cox said. “We have this enormous, terrible thing that happened to us that we have not confronted at all.”
Harrington said he read two research papers Cox produced through Medius and found they both showed the activist’s characteristic disciplined approach toward policy recommendations. During this period, Cox also wrote an article for POZ magazine’s blog detailing both the dangers meth use poses to those who are HIV-positive and effective steps for “kicking crystal to the curb.”
Cox was unable to secure sufficient funding to keep Medius operating, and Staley said he had the impression that meth got in the way of that effort. Cox’s brother said he heard concerns about Spencer’s meth use during his 2009 hospitalization.
Those closest to Cox, however, agreed that meth was a symptom more than a cause of the challenges he faced. France said with his persistent struggles to contain his HIV illness, “Spencer was really soldiering on alone.”
Saying he sees the stigma facing HIV-positive gay men as worse than it was before the mid-‘90s treatment revolution, Staley pointed to “not just the moving on, but even the aggressive shelving” of AIDS as an issue of concerns among gay men, and said, “We all wanted to live in happier times. The veterans from that period really felt like we were coming home and there was not embrace, no recognition.”
He added, “Whether we are admitting it or not, we are all struggling with depression. We need to start dealing with these issues. A lot of us are talking about restarting Medius somehow.”
Harrington recalled that on a panel following a screening this past fall of “How to Survive a Plague” at the IFC Center, Cox credited France’s film with “showing how much fun we had. If it stops being fun, then something’s wrong.”
In addition to his brother Nick, Spencer Cox is survived by his mother, Beverly. A celebration of his life is planned for Sunday, January 20, from 3-6 p.m. at the Cutting Room, 44 East 32nd Street.