Seroconversion Among Aging Gay Men
Four years ago, Dr. Margaret Hoffman-Terry, an infectious-disease specialist in Allentown, Pa., told me about a burgeoning specialty in AIDS medicine. "There's a new field of geriatric HIV," she said. "It's striking to think you've gone from a rapidly fatal illness to discussing old age for these patients."
That doctors would someday be dealing with problems caused by HIV-infected patients growing old was unthinkable during the first two decades of an epidemic now well into its third. For someone who lived through the 1980s and early '90s, when HIV usually meant a death sentence, it's nothing short of miraculous.
Tell that to the aging men and women who have lived with the AIDS crisis since the beginning. Growing old is never easy, but for them, HIV has brought on layers of additional problems. Of the 1 million-plus people living with HIV in the United States, the Centers for Disease Control estimates that just about one-third are over 50. By 2015, that percentage will increase to half of all HIV-positive Americans.
Adding to their numbers, 17 percent of all new HIV cases are occurring in people 50 and over. For too long, their stories have gone untold.
In 2005, then-New York City Health Commissioner Thomas Frieden (now head of the CDC) caused a furor when he warned that a man, age 46, may have contracted an HIV "superbug." That turned out to a false alarm, but news reports that the man contracted the virus after a weekend partying on crystal meth sparked a furor in the gay community. It was not only the realization that drug-fueled sexual marathons weren’t limited to young guys or that older gay men were able to score multiple partners; it was that they were having sex at all.
We live in a youth-oriented society where the elderly are expected to "act their age" and not look for sexual companionship. The same 50th birthday that qualifies you to join AARP, formerly known as the American Association of Retired Persons, also means retiring sexual desire and desirability. This is certainly true for older women, whom studies have shown to be more susceptible to HIV infection. For older men, a potential hook-up can insist on a Hobson’s choice: Either barebacking or nothing.
The advantage of getting old is that it’s better than the alternative; the disadvantage is the isolation that inevitably occurs when friends disappear one by one. The generation of men who have lost their partners and most friends have been experiencing this for 30 years. Post-traumatic stress disorder has become a psychiatric diagnosis that, like OCD or attention-deficit disorder, has entered the pop-psyche mainstream. But it’s real and, as Berkeley, Calif., clinical psychologist told The New York Times, many older gay men are suffering from it.
"It was an extraordinary trauma, comparable to a wartime experience," Odets told The Times. "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.
Two founders of the Treatment Action Guild, which forced the Food and Drug Administration to fast track AIDS medications, both found themselves as the classic rebels without a cause when the protease cocktail and other meds spelled the end of street activism. Both also prominent in ACT-UP, they’re featured in the Oscar-winning documentary "How to Survive a Plague."
One, Peter Staley, did survive to initiate the first anti-meth ad campaign directed at gay men. He’s now an elder statesman and mentor to those looking for ways to fight the latest epidemic, that of rising rates of HIV infection among younger gay men. The other activist died late last year at age 44, after bouts of drug use and depression ended in his refusing his HIV meds.
As someone who lived through in New York since the ’70s, I’ve seen the epidemic unfold at ground zero. So you’d think I’d be inured to someone telling he has seroconverted. But each time, I’m still surprised and upset. How, I think, could someone who lived through the Dark Ages of the epidemic have gone so long only to seroconvert now?
Paul (note: I have changed the names to respect privacy) in Southern California had always barebacked, always the active partner, for years. He was 50 when, unknown to him at the time, genital herpes had exposed sores, resulting in HIV infection.
For Joe, who now lives in San Francisco, it was the post-coital discovery of a broken condom at age 51. Antonio, 55, moved back to New York after years of marriage to a woman. He has been out for a little over a decade and sexually active. But he believed a stranger when he told him he was HIV-negative. Mickey admits that "partying" made him careless.
Anyone who receives a positive result to an HIV test believes it brings with it the stigma that they were careless, thoughtless even. They have to push past blaming themselves. The burden is especially heavy for Walt, who works in education for an HIV organization. Plenty of research has been done about those who have become infected with HIV while on the job, whether through a contaminated needle, blood or indeterminate causes.
But if there’s a study focusing on activists, social workers, medical practitioners, educators and others in the trenches of the long war against AIDS, I certainly couldn’t find it. Perhaps it’s because they don’t believe they can trust or confide in any researcher who specializes in HIV infection, no matter how discreet. It’s understandable that they might fear exposure and censure from their colleagues. I know that Walt, having spent most of his adult life trying to drill the safer-sex message into others, found it especially difficult to overcome his shame.
Even he, however, recovered soon enough to become knowledgeable and proactive. Every one of the older men I’ve known who’ve contracted HIV is working closely with their primary physician to keep viral loads low, and T-cell counts high. To a man, they have accepted their diagnosis - with sadness, true, but also with a sense of determination to stay well for as long as possible.
Contrast this to the younger gay men who have told me in recent years that they seroconverted. Many - too many - of them refuse to get regular check-ups or tests to determine their immune systems. One guy is in deep denial. Others complain they lack medical insurance, although Antonio signed on to ADAP, the New York State program to provide HIV medications to those who lack proper coverage.
Everyone who seroconverts goes through the inevitable feelings of stigmatization. Some men become recluses, others find temporary solace in alcohol or drugs. But my younger friends all seem to have a resigned themselves to passive fatalism that defies compassion or tough love.
Age brings wisdom. There’s no fool like an old fool. Like so many old sayings, the two contradictions coexist side by side. The gay men I’ve known would say that they did something foolish, but they wouldn’t allow themselves to succumb to paralyzing anger and self-recrimination.
For the generation that witnessed the change seemingly overnight from the heady sexual freedom of the ’70s to the sex panic of the ’80s, this might be the final battle in the fight against AIDS. It’s not a battle any of them foresaw, and it’s most certainly not the one they would have chosen. I hope their continued resilience inspires others coping with seroconversion.
This story is part of our special report titled "HIV Minority Report." Want to read more? Here's the full list.