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Surviving AIDS, but Not the Life That Followed




 

In early December, the veteran AIDS activists Spencer Cox, Garance Franke-Ruta and Peter Staley had a reunion of sorts. They met in a packed auditorium at St. Luke’s Hospital on the Upper West Side, where a screening of “How to Survive a Plague,” the soon-to-be-Oscar-nominated documentary, was taking place.

Its director, David France, was out of town, and so the three Act Up alumni, all of whom appear in the film, substituted for him, answering questions and meeting attendees. The room was packed, and Mr. Cox, 44, was in particularly fine form, lapping up the attention and eager to talk about where the battle needed to go next.

Without a doubt, there had been changes in Mr. Cox’s physical appearance over the years. He had lipodystrophy, a form of fat redistribution common in long-term H.I.V. patients, giving them sunken cheekbones and distended bellies - not to mention severe vision problems caused by an infection called CMV retinitis.

Still, Mr. Staley recalled: “He was great. He was dynamic. He was speaking about what AIDS activists need to be looking at now, with rising H.I.V. infection rates among young gay men. He was as insightful as he’d always been.”

But just a few weeks later, on Dec. 18, Mr. Staley found himself standing in a hospital, listening as doctors told him that Mr. Cox had died from AIDS-related causes, a result, apparently, of going off his medications. Afterward, on The Huffington Post and other Web sites, a furious debate ensued about just what Mr. Cox’s death represented.

Was it “pill fatigue,” a term applied to patients who grow exhausted taking a variety of medications daily and then become noncompliant? Why would Mr. Cox devote his life to obtaining lifesaving medications for people all over the world, only to stop taking them himself?

Was Mr. Cox trying to kill himself after several years in which the side effects had been nearly as bad as the disease? Or could crystal meth have been to blame?

The answer may be more complicated than any of them acknowledged.

SPENCER COX WAS BORN in Atlanta on March 10, 1968, and grew up there with his younger brother, Nick, and his mother, Beverly, a certified public accountant. His father drank too much, and mostly disappeared from the picture around the time Spencer was 5.

As a child, Mr. Cox devoured books by Chaucer and Dickens and immersed himself in local theater. He came out early in high school, said his mother, who described it as being not such a big deal. “I said to a friend: ‘Would I prefer a child with a wife and two children and white picket fence? Sure. But I didn’t have that choice,’ ” she said. “And I don’t think he had problems in high school.”

In 1986, Mr. Cox left the South for Bennington College in Vermont, where he studied theater and introduced his friends to Bette Davis movies, which he could recount line for line. Then, after spending much of his junior year in New York and becoming involved with Act Up, the famously combative AIDS organization founded by the playwright Larry Kramer, Mr. Cox dropped out of Bennington and moved to Manhattan.

In short order, he found out he was H.I.V. positive. Bodies were piling up all around him.

“He had a tough and scary road ahead of him,” said John Voelcker, a friend from the old days who was with Mr. Cox the day he was tested. “AIDS was not then a chronic, manageable disease. It was something that killed.”

But after wiping away his tears, Mr. Cox threw himself back into his work at Act Up, where he served on the treatment and data committee. And in 1995, when protease inhibitors were in the testing phase, Mr. Cox (who had never taken any real interest in science before becoming involved in AIDS issues) played an integral role in helping to speed along and design the trial process for the drug Norvir.

“He was brilliant,” Mr. Kramer said. “He figured out single-handedly how to test these drugs more effectively than any scientist and statistician could.”

It helped save the lives of thousands of people, including himself.

Yet as the medications began to work, the movement itself - the organizing principle in Mr. Cox’s life - splintered, then broke down. An ever-escalating real estate market made it far more difficult for creative types, including those who toiled away on AIDS issues, to survive in New York City. The clubs and bars where Mr. Cox and his Act Up compatriots spent their nights - Woody’s, Boy Bar, Mars - closed their doors, and the Internet became a prevalent way for gay men to socialize and hook up.

All of this came with clear psychological and physical costs, particularly as crystal meth moved into the gay party scene. Many of the most prominent AIDS activists spiraled downward. Dr. Gabriel Torres, who ran the AIDS ward at St. Vincent’s Hospital in Greenwich Village, fell into a decade-long battle with addiction, winding up in and out of jail. Rodger McFarlane, the former executive director at Gay Men’s Health Crisis, committed suicide. Peter Staley developed a meth habit in 2002, before rehabilitating himself.

To Mr. Kramer, it was a horrible if somewhat predictable development.

“There were so many people that came to Act Up young, and they never got to have a life,” he said. “Spencer didn’t even finish Bennington. But these kids were attracted to the activism, and by the time that we were out of the woods they were too old to get jobs. They were too old to get careers.”

In 2006, Mr. Cox and Mr. Voelcker spearheaded an effort to start the Medius Institute, a group that would help research issues related to gay men, aging and what they saw as increased evidence of high-risk behavior.

Mr. Cox contacted numerous gay psychiatrists and spent months seeking financing. But with wealthy gay donors focused on gay marriage and helping teenagers struggling to come out, Mr. Cox and Mr. Voelcker found few supporters. The organization disbanded, and Mr. Cox fell into what friends say was increasing despair.

He began abusing meth himself, went off his medication, landed in the hospital twice with pneumonia and eventually moved home with his mother in Atlanta. It was as if, like Jessica Chastain’s character at the end of “Zero Dark Thirty,” he helped kill Osama bin Laden, then found himself bewildered by the return to normalcy.

Walt Odets is a clinical psychologist in Berkeley, Calif., who knew Mr. Cox and has written extensively about the aftereffects of H.I.V. on long-term survivors. Dr. Odets is reluctant to use terms like “post-traumatic stress disorder” and “pill fatigue” to describe what happened to the veterans of Act Up, but he said it was clear the epidemic did not end for them when therapeutic drugs came along.

“It was an extraordinary trauma comparable to a wartime experience,” Dr. Odets said. “For many gay men, after the epidemic was over, there was a loss of energy and vitality. It’s like going from a car that runs on rocket fuel to one that runs on gasoline. And it had to be bewildering for Spencer.”

AFTER THREE YEARS recuperating in Atlanta, Mr. Cox returned to New York in 2012, shortly before Mr. France’s documentary was being released. The movie gave Mr. Cox a renewed sense of purpose. He was at the premiere in September and did several question-and-answer sessions at universities and hospitals. He got to hobnob with celebrities like Sarah Jessica Parker and John Benjamin Hickey.

Moreover, Mr. Cox began to speak excitedly about the future, telling several of his friends that he was writing again and might soon have a play to show them.

But struggles remained. Mr. Cox was living in the Inwood section of Manhattan, increasingly isolated, several miles away from most of his social network. His mother helped him with his $1,000-a-month rent, but still, Mr. Cox fell behind. His roommate in the last months of his life, Mark Leydorf, was involved with someone in Midtown and seldom home. And Mr. Cox was clearly smoking too much.

Mr. Cox’s friends worried that his depression and his physical deterioration were feeding off each other in profound ways. With them he was good humored and self-deprecating about the effect H.I.V. drugs had on his looks. Still, he had not had a significant relationship in years, and having lipodystrophy probably was not easy for him.

“Spencer was not primarily motivated by being an attractor,” said his friend Carly Sommerstein, an editor at Simon & Schuster. “But we are all looking in the mirror and seeing things change.” She added: “Aging is complicated, and accelerated aging is very complicated. New York is an unforgiving city.”

There was also concern that he had returned to meth. But numerous people in touch with Mr. Cox during his final days did not see this.

“There was some temptation to conclude Spencer was doing drugs at the end of his life, but there’s no evidence of that that we know of,” Mr. France said.

Mr. Leydorf said, “I never saw him use.” In fact, shortly after Mr. Cox died, Mr. Leydorf returned to their apartment and searched through his roommate’s things looking for clues. “I didn’t find anything.”

Either way, “this was somebody who was dealing with professional crises,” said Tim Horn, the H.I.V. project director at the Treatment Action Group, and another friend from of Mr. Cox’s Act Up days. “He hadn’t had a full-time job in a long time. Finances were always a struggle. And he was not a very healthy man. It takes a toll.”

On Dec. 12, Mr. Leydorf returned home after a couple of days away to find Mr. Cox sitting in the living room, wearing a raincoat and nothing underneath it. He was shivering.

“He said, ‘I just don’t feel well,’ ” Mr. Leydorf recalled. “He looked like a skeleton. And I said, ‘We need to get you to the hospital immediately.’ ”

So Mr. Cox packed a bag, and Mr. Leydorf walked with him down a hill by their apartment. The trek was only a few blocks, but Mr. Cox did not make it more than halfway before becoming out of breath and pausing to rest. Mr. Leydorf called an ambulance, which took them to the Allen Hospital, a branch of NewYork-Presbyterian Hospital, on 220th Street and Broadway. There, doctors found that Mr. Cox’s T-cells were virtually gone and that his viral load was through the roof.

Ms. Sommerstein came to visit the next day, a Thursday, and again on Saturday. By the second visit, she said, there was a sense Mr. Cox was improving.

“He was off his breathing mask,” she said. “He was much more peaceful. And so naturally he said, ‘Don’t you call my mommy.’ I spoke with his doctors, and they said he seems to be a lot better.”

The next day, Mr. Cox took a turn for the worse and had to be intubated, according to Ms. Sommerstein and Mr. Horn. At various points, late that evening, CPR had to be performed on him. On Monday, his kidneys failed and it was clear that he was about to die. None of Mr. Cox’s friends were with him in the final hours he was conscious.

On Tuesday, after it was over, Mr. Staley and Mr. Horn went through the bottles of pills Mr. Cox had taken to the hospital. Many were six months old and still half full, indicating that Mr. Cox again had not been taking them as prescribed.

It’s hard to say why. Neither Ms. Sommerstein nor Mr. Staley believes Mr. Cox was trying to kill himself. But that does not change the fact that it’s more or less what he did.

“It was a life unraveling,” Mr. Staley said last Wednesday, as he packed his bags for Los Angeles, where he was going to meet Mr. France and maybe bask in the glory of an Academy Award.

Looking back on that last time he saw Mr. Cox, at the screening of the movie in December, Mr. Staley said he just couldn’t believe what had happened.

“I had no reason to believe I wouldn’t be seeing him on a red carpet at the Oscars,” he said.



 


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Information in this article was accurate in February 22, 2013. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.