This is our 20th annual HIV drug guide. In that first drug guide in 1997, my sister Sylvia appeared on the cover. Her doctor estimated that she was infected in 1980, and she’s still alive and kicking today. We are closer now than we have ever been,
for which I’m very grateful.
Next to her on that cover is Sanford Gaylord, who like Sylvia worked in the programs department at TPAN at the time. He’s still as handsome as ever (as Sylvia is still beautiful) and works as a health consultant to government agencies, while he continues to be an actor as well as a writer.
The first doctor to provide comments on the drugs was Joel Gallant. And the first activist to comment on the drugs was … Spencer Cox.
Spencer died in 2012, at 44, after years of going on and off HIV meds as well as struggling with crystal meth. The man who as a youth became a leading AIDS treatment activist and helped save tens of thousands of lives had lost his own.
But long after he had helped bring the lifesaving protease inhibitor drugs to market in the 1990s, he co-founded The Medius Institute for Gay Men’s Health in 2006 to bring attention to the depression, isolation, addictions, and other concerns that affected gay men in middle age, whether living with HIV or not. Why, for example, were men who had survived the plague uninfected now later in life becoming HIV-positive?
“While it is by no means certain that current high-risk behaviors are related to the traumatic survival of AIDS-related loss, the question certainly merits more detailed exploration than it has been given,” Spencer wrote in “The Legacy of the Past: Gay Men in Mid-Life and the Impact of HIV/AIDS.”
“Spencer was really the first person to speak up for long-term survivors,” said HIV treatment activist Matt Sharp, also an early ACT UP member. “He really believed in ‘drugs into bodies,’ an ACT UP slogan. But the drugs have their toll, and they certainly had a toll on him.”
We will never know exactly what happened. As Spencer’s friend and colleague Tim Horn, also a treatment activist, said, “The only person who can tell us is Spencer.”
But his death, of PCP, an AIDS-related pneumonia, in 2012, brought a sense of tremendous loss. It created a shift in the epidemic, and the people benefitting from that today are a part of his legacy.
FIGHTING TO LIVE
Spencer joined ACT UP when he was only 19, working on the science-laden Treatment and Data Committee pushing for drug development. Spencer and other committee members went on to form the Treatment Action Group (TAG). But after becoming very sick in 2000 and going on disability, Spencer not only suffered financially, but struggled to decide what he really wanted to do with his life. He had been a full-time activist who had never worked outside of AIDS research, dropping out of college, where he studied theater, to join to join ACT UP in New York City. Soon afterwards he tested positive himself.
Said his longtime best friend and Medius Institute co-founder, John Voelcker, “I remember that for about five years after 9/11, there were mental health ads in the subway saying, essentially, ‘Thinking a lot about the Twin Towers? Do you want to hurt your better half or kick the dog? You may be depressed. Call this number for counseling.’ Spence said, ‘We lost 30,000 people [in New York]. We spent years being spat at and having to fight and put our bodies on the line to be treated like human beings. Where’s our mental health care?’”
Three weeks before he died, he along with friends and colleagues Peter Staley and Garance Franke-Ruta spoke to a New York audience at a showing of a documentary on ACT UP, How to Survive a Plague, which received an Oscar nomination for Best Documentary Feature. Spencer was in good spirits.
Peter, who delivered Spencer’s eulogy, said the memorial became a reunion of activists from the ’80s and ’90s, who then organized a number of events and efforts that have continued. “It fed into this renewal of activism in general,” he said. On the flip side, however, are anecdotal reports from a U.S. study indicating increased use of meth among gay men, after continuous declines seen from a peak in 2004. “We’re not seeing statistics yet, but awareness campaigns are waning and so young men don’t fear it like we did when we lived through a meth epidemic,” said Peter.
Following Spencer’s death, work on the psychological needs of long-term survivors flourished. GMHC took under its wings the Friends in Deed support group which had been dismantled. A town hall meeting took place shortly after his death, bringing together hundreds of people to discuss the issues he had raised through Medius. A week later, another gathering, this time presented by a group of activists calling themselves The Medius Working Group, again looked at the issues (presentations were posted to YouTube). St. Luke’s-Roosevelt Hospital Center in New York City renamed its HIV clinic the Spencer Cox Center for Health, and re-dedicated itself to emotional as well as physical support. Columbia University, thanks to a suggestion from TAG, is conducting a study of the effects of early ACT UP involvement on people’s lives. Support groups for long-term survivors were created around the country. The Reunion Project, sponsored by TPAN with support from Bristol-Myers Squibb, holds gatherings around the country bringing together long-term survivors to look at their needs and to support one another. No longer are long-term survivors taken for granted. Also gaining ground is trauma-informed health care, promoted primarily by advocates for women and people of color living with HIV.
“A lot has been written about this legacy of Spencer’s,” said Tim. “There’s this mystique that has surrounded him, about why this happened to someone so prolific and smart and beautiful and incredibly witty, an activist. I think it’s a fair question. But I also think it’s really important to remember who Spencer was and what he did for HIV prevention and activism, in particular as someone who didn’t have any scientific training who became one of the most trusted experts at the table.”
Tim said that Spencer not only worked for representation from people living with HIV in clinical trials, but for information they needed to make empowered treatment decisions.
Melanie Thompson, MD, the doctor who wrote the comments for this drug guide, was Spencer’s physician towards the end of his life. She wrote me, “Spencer made an indelible mark on HIV drug development and his legacy is still very much alive. Just last week, a new patient came to see me and mentioned Spencer as soon as we began to talk. ‘I read that you were his doctor. He must have been amazing. I guess, really, I am alive because of him.’ My eyes teared to hear a young man with HIV trace his own survival directly to the work of Spencer, and others who fought the Plague.”
Nothing is going to take away from Spencer’s life work, as one of the youngest activists in the middle of the storm who fought against the U.S. government and the FDA, helping to guide clinical trials to bring drugs to market.
Still, I will always remember Tim breaking down in tears while talking about Spencer’s life at a gathering of activists and advocates for people living with HIV, many themselves positive.
“We have a renewed sense of listening to each other more, to understand what it means to be a survivor,” Tim told me.
Spencer’s work, to find medications and to meet mental health needs, helps so many more people than simply putting drugs into bodies.
“Depression, loneliness, suicidal tendencies … he was the first person calling people together to look at research for this,” Matt said. “It’s bittersweet.”