Living With HIV When You Expected to Die
Diagnosed at the peak of the AIDS epidemic, many long-term survivors are faced with a heavy psychological and financial burden today
Sean McKenna opened his eyes and was surprised to find himself alive.
He reached out to touch the things around him, confirming their physical existence and, by extension, his own. He turned on the small television next to his hospital bed just as Bette Midler was singing a song from her new album on the Today show.
That threw him for a moment. If there was a heaven, Bette Midler would surely be in it.
The previous night, when McKenna closed his eyes to go to sleep, he had made his peace with the idea that he might not wake up. It was 1995, and by the end of that year, the HIV epidemic would claim its 62,682nd victim in New York City alone. For young gay men like 33-year-old McKenna, the specter of premature death had become a fact of life.
McKenna, a former model, was first admitted to St. Vincent’s Hospital in Greenwich Village on Halloween night in 1995. Rasping with bacterial pneumonia, he leaned heavily on his sister Megan’s tiny frame as they wove their way through demons, divas, and drag queens — revelers in the annual Village Halloween Parade.
The nurse who greeted them fast-tracked McKenna to a gurney in the emergency room. Another stopped by to make sure he got a piece of Halloween candy.
After McKenna was admitted to a room on the seventh-floor AIDS ward, his parents drove up from Virginia. His mother was her ebullient self, insisting that he have his photo taken with each vase of flowers he had received so that he could send thank you cards to his well-wishers. His father wept. Outside the room, it was near silent on the ward. Young men shuffled up and down the corridors with IV drips trundling alongside them.
Two weeks later, McKenna was released from the hospital, his immune system so fragile that he couldn’t drink tap water. The drugs used to treat his pneumonia had left him with a metallic taste in his mouth, and the only thing that could cut through it was a strawberry milkshake. Every day, he made his way slowly down the puzzle of stairs from his fourth-floor apartment on the Upper West Side over to the Burger King on Broadway. This is what it must feel like to be old, he thought, as he sat and sipped his milkshake, watching the bustle on the street outside.
Then, after surviving another bout of pneumonia and hospitalization, something unexpected happened. The first protease inhibitors for the management of HIV were approved by the FDA in December 1995. Combined with other drugs to create a foul-tasting liquid cocktail, it was the first truly effective drug for the management of HIV — amazingly able to reduce an HIV diagnosis from a death sentence to a complicated but manageable lifelong condition.
It was the beginning of a new era for McKenna and everyone else living with HIV.
Lazarus: life in lieu of death
What followed came to be known as the Lazarus effect as AIDS patients rose from what they had expected to be their death beds. Having increased steadily since 1981, the number of AIDS-related deaths almost halved between 1996 and 1997. AIDS wards slowly began to empty, and in 1996, a New York Times Magazine cover story heralded the end of the epidemic.
Over the years, as the prospect of death began to retreat to a distant horizon, McKenna had to figure out how to live.
For many who were HIV-positive, there wasn’t a singular moment when it became clear that they would live. Even after the release of the new drugs, McKenna planned his funeral and picked out the music (which included Bette Midler). But over the years, as the prospect of death began to retreat to a distant horizon, McKenna had to figure out how to live.
Today, almost a quarter of a century after the cocktail was introduced, life expectancy for people living with HIV has increased dramatically. As of this year, it’s expected that some 70% of those living with the virus in the United States will be older than 50. Although there is still no cure, antiretroviral therapy can suppress the virus to undetectable levels, muting its effects and drastically reducing the risk of transmission to a partner.
While the drugs have proven highly effective at managing the physical side-effects of HIV, some people diagnosed before the drugs were released still contend with the psychological and financial toll of having spent much of their youth expecting to die. Many didn’t finish school, build careers, or save for retirement. They have come to be known as long-term survivors.
“I don’t think any gay men who were thoughtful and honest with themselves thought they were going to survive,” said Walt Odets, a clinical psychologist based in Berkeley, California, who has worked extensively with gay men.
A study conducted last year of HIV-positive adults over age 50 in San Francisco found that for the vast majority, their HIV was well managed, but they contended with extremely high levels of poverty. Though long-term survivors were not the focus of the study, it does shed light on the effects of aging with HIV. Around 57% receive disability payments—their incomes and health care bound up in a complicated web of government bureaucracy.
Even with modern medications, HIV takes a toll on the body and speeds the aging process. Long-term survivors often experience heart disease, osteoporosis, memory problems, cancer, and kidney failure years earlier than would be expected. People who didn’t think they would live to see old age are now experiencing its effects sooner.
Beyond the question of physical health, many who lived through the AIDS crisis say it took a profound psychological toll.
“The closest analogy I can think of was that it was like being dropped into a war zone,” said Tez Anderson, who lived in The Castro in San Francisco. “There were no bombs or burnt-out buildings, but there were young men that walked around the neighborhood, and you’d see them looking healthy, and then they’d get sicker, and then they’d have walkers, an oxygen tank, and then you’d read their obituary in the paper.”
At some point, Anderson stopped counting the deaths but estimates he lost hundreds of friends and acquaintances to AIDS.
Anderson, who tested positive for HIV in 1983 at the age of 26, coined the term “AIDS survivor syndrome” to describe the spectrum of trauma, which he felt came not only from watching so many friends die but from preparing to die himself. Its manifestations include depression, isolation, and feelings of despair about the future.
“There’s a meme that we lost an entire generation to AIDS,” said Anderson. “But there are a lot of us still here.”
Anderson’s definition was tested by Ron Stall, director of the Center for LGBT Health Research at the University of Pittsburgh. Stall surveyed participants in the Multicenter AIDS Cohort Study, a group of 7,000 men who have sex with men whom researchers have been tracking for three decades. Half are living with HIV; half are not.
Almost a quarter, 22%, reported experiencing three or more symptoms of AIDS survivor syndrome regularly. In a reflection of the devastating effect of the AIDS epidemic, HIV-negative men in the study were as likely to experience psychological strife as those with HIV.
Stall declined to be interviewed for this story. But he told the author of a blog post by the San Francisco AIDS Foundation that while most people who lived through the epidemic are doing okay, “there is a small cluster of guys who probably really do need some kind of help in dealing with the long-term effects of the epidemic,” Stall said.
“There’s a meme that we lost an entire generation to AIDS,” said Anderson. “But there are a lot of us still here.”
Surviving
On a crisp fall evening in late 2018, Sean McKenna stood at the corner of Seventh and Greenwich Avenues in Manhattan and looked up at a luxury apartment complex called The Greenwich Lane. The street lamps illuminated the delicate bone structure of his face, and shadows sat in the gentle hollows beneath his cheeks.
“I call this the poltergeist,” he said. Pricey condos and townhouses complete with a private garden, a reflecting pool and a birch “allée” have taken the place of the hospital that long ago saved his life. In 2017, the building’s penthouse apartment was sold to an anonymous buyer for $40 million.
A neighborhood institution known as Saint Vinny’s, St. Vincent’s was founded in the mid-19th century to provide medical care to the overlooked and disadvantaged. Victims of New York’s 1849 cholera epidemic, the Titanic, the AIDS epidemic, and the 9/11 terror attacks came through its doors before the hospital closed in 2010 after years of financial struggle.
On a fall evening just after dark, the blinds in almost all the apartments were still raised, exposing sleek interiors illuminated like giant display cabinets.
“If I hadn’t been [HIV] positive, I might have been able to live there,” said McKenna, who is now 57.
McKenna first moved to New York City in the late summer of 1980 for a scholarship at NYU. The previous decade had seen a number of landmark moments for the gay rights movement, which was sparked by the Stonewall riots of 1969. In 1973, the American Psychiatric Association removed homosexuality from its list of mental disorders, and the following year, the first openly gay political candidates were elected to office in city and state legislatures in Michigan and Massachusetts. In 1979, the first National March on Washington for Lesbian and Gay Rights took place.
“We had just gotten our sex lives back,” said McKenna when, in 1981, he read a New York Times article about a “rare and often rapidly fatal” cancer affecting gay men in New York City and San Francisco. McKenna thinks it was around that time that he contracted HIV, although he didn’t discover it until years later.
Until 1996, McKenna worked as a casting agent at a modeling agency. When his boss learned he was HIV positive a few years prior, she sent him to work in a separate room away from his colleagues. He was fired after being hospitalized with pneumonia for a second time. “I was definitely fired because of my status,” McKenna said. It wasn’t yet illegal for employers to do so.
He signed up for disability in 1996 and received $1,200 a month — which in those days was just enough to get by on. Payments have since risen to $1,600 but have been far outpaced by the increasing cost of living in New York City. Every six months, McKenna’s disability support payments are subject to review, and the older he gets, the more he fears he may make a mistake on the forms that could cost him his income.
“I know I couldn’t handle a 40-hour week,” he said. McKenna has had arthritis since his early 40s, which he attributes to the accelerated aging that can accompany HIV. Soon he is going to explore the option of having his hip replaced. “I just feel like I’m a 70-something-year-old in a 50-something-year-old body,” he said.
He has lived in the same one-bedroom apartment on the Upper West Side since the mid-1980s, long enough to watch the honey locust tree in front of his building grow up past his living room windows, filling them with green every spring.
McKenna’s rent is stabilized at $1,100 per month, but he is acutely aware of how vulnerable he could be if he ever had to move. “My biggest fear is homelessness,” he said. “What’s worse than being a person with AIDS? Being a person with AIDS who is homeless.”
Surviving, but forgotten
After the first effective drugs for the management of HIV became widely available in 1996, the sense of urgency among AIDS activists in the United States began to fade. “We were so exhausted after 20 years of burying people, caretaking, the apathy of the public,” said Anderson. Other battles — the long fight to legalize gay marriage, for instance — loomed large, and attention was diverted. While new medications enabled those with HIV to imagine a longer future, there were far fewer resources for dealing with the profound individual and collective trauma of having lived through the AIDS crisis.
Some long-term survivors now feel they have been forgotten.
For many in the community, the 2012 death of Spencer Cox, a veteran AIDS activist, was a moment of realization that while the epidemic might be over, the crisis was not. Cox had been instrumental in designing the clinical trials for the development of the first antiretroviral drugs. In 2006, he turned his attention to the aftermath, founding the Medius Institute for Gay Men’s Health to research the mental and physical health of gay men as they aged and the legacy of the AIDS crisis. “We have this enormous, terrible thing that happened to us that we have not confronted at all,” Cox said at the time in an interview in Gay City News.
But Cox struggled to find funding for the center. “Medius was his plea for help,” said Odets, the Bay Area psychologist. “But people didn’t want to pay any attention.”
It took a toll. Cox became addicted to methamphetamines and later stopped taking the very anti-retroviral drugs he helped bring to market. His death sparked just the kind of discussion he had tried and failed to ignite with his center.
McKenna’s own realization that long-term survivors needed help came the year after Cox’s death at a panel discussion with fellow long-term survivors. He had been interviewed, along with a dozen others, for Perry Halkitis’ book AIDS Generation and was invited to an event with the other participants.
One by one, they went around the table and shared their stories. Each time, at least one person would cry in recognition. “It was a special moment,” said McKenna. “It was a dozen people realizing that there were other people like us.”
After the book was launched, the group decided to get together again for a potluck dinner. One participant came in with a cane, and McKenna saw him shove food in his pockets without wrapping it first. “Look what this disease did to this person,” he thought.
Facebook has become the bedrock of McKenna’s activism. “I used to just post pictures of a good-looking guy, then I’d hit them with an HIV fact,” he said. Once he realized that fellow long-term survivors were struggling, he began to “constantly bitch” on Facebook about the lack of support services, often tagging AIDS services organizations themselves. Someone at the Gay Men’s Health Crisis in Manhattan took notice, and Kelsey Louie, the chief executive, invited McKenna for a meeting.
McKenna suggested that GMHC reinstate the buddy program. Launched in the early 1980s, the program ran throughout the epidemic, pairing people with HIV with buddies who provided practical and emotional support. The program ended in 2005 due to a federal funding cut and lack of demand. Having been told that it would cost tens of thousands of dollars to restart the program, McKenna held a silent auction on Fire Island to raise funds. This was then supplemented by donations. The buddy program was restarted in 2015, and it is not limited to long-term survivors. Buddies are trained in active listening and meet once a week with their person. “Our goal primarily is to get them out, to have them breathe fresh air,” said Susan Rowley, the program director.
McKenna said that in the early days of the AIDS crisis, the gay community had to do things for themselves: care for those who were sick while lobbying for government funds and research. Now, he said, long-term survivors are once again leading the way.
“It feels like we are all veterans of an undeclared war,” said Anderson, who in 2013 founded an organization called Let’s Kick Ass to raise awareness and provide support for long-term survivors.
While awareness of the challenges faced by survivors of the AIDS epidemic begins to grow, support is patchy, and for many, it is simply too late—with each passing year, the number of survivors who cheated death for so long dwindles.
