‘A Lot of Unknowns’

With multiple HIV drugs on the market, allowing for physicians to mix and match to limit side effects and resistance, the medical community can often only make educated guesses as to what causes a particular ailment: Is it the virus? The meds? Aging itself? "From a health care viewpoint, that's one of the great black boxes," says Stephen Karpiak, ACRIA's associate director of research and the author of one of the only comprehensive studies on HIV and aging. "And the reality is we just don't know." Scientists didn't begin using the drug cocktails that turned AIDS from death sentence to chronic illness until 1996; prior to that, it was still considered a young person's disease, with everybody focused simply on survival.

Experts say that's not enough history to grasp the drugs' impact on the body, particularly in older patients. Clinical trials until now have been virtually nonexistent, and most big drug companies don't use older patients in trials—because of the possibility that those already at high-risk for disease would complicate the results. "It's very much to me kind of a good news-bad news situation right now," says Dr. Bill Stackhouse, director of the New York-based Gay Men's Health Crisis, the world's oldest AIDS-service organization. "The good news is that the meds are great, and people are living longer. But now there's a whole new set of issues to be faced."

Chew and his patients know that reality all too well. On a recent Wednesday in New York, Chew led an HIV-support group for Services and Advocacy for Gay, Lesbian, Bisexual & Transgender Elders (SAGE). The group regularly vents about doctor's visits, pill regiments and the laundry list of side effects that are becoming more complicated with age. For this session, Ernest Krysty, 61, has traveled from Connecticut; he says there isn't a support group closer to him. He describes the painful lesions on his stomach from the acid in his drug cocktail—12 different pills each day: six for HIV, and the rest for heart problems and lipodystrophy, a degenerative tissue disorder that redistributes fat, which commonly occurs in those being treated for HIV.

Another member of the group, Bruce Miller, 59, takes up to 20 pills on some days—and recounts the painful hip-replacement surgery he had to have last year. Miller isn't sure what caused the bone degeneration in the first place—as Havlik puts it, "there are a lot of unknowns"—but the procedure caused a hematoma that had to be surgically removed, resulting in nerve damage. During his rehabilitation, he was prescribed an antidepressant that he's now struggling to wean himself from. And now he needs a replacement in his knee, too. "It's sort of like a house of cards," Miller says softly. "The more pills you take, the more possibility for interaction. And as you grow older, there's more of a chance of that collision."

Chew himself has diabetes, high cholesterol and neuropathy—all ailments he never thought he'd be around to see. "Having been HIV-positive for so long, and lived through the earliest part of the epidemic, I think the notion was that it would kill us long before there was any question of any other physical ailments," says 53-year-old Mark Stewart of Manhattan. "Part of what's helpful about this group is that we share notes about … all those things you never thought you'd have to deal with, because you thought you'd be dead."

Those issues, of course, extend far beyond the physical. Stigma related to disease and age—and, in many cases, sexual orientation, too—has been shown to cause depression and anxiety. (In a 2006 study, ACRIA found rates of depression in HIV survivors to be nearly 13 times higher than in the general population.) Many of those aging with HIV don't have social networks they can count on, either: gay seniors, who make up a big chunk of this group, are twice as likely as their straight counterparts to live alone. "People with better social networks are more adherent to their meds, less likely to be depressed, and we know from the gerontological literature that those with better social networks live longer—outside of HIV disease," says Charles Emlet, a social worker at the University of Washington who studies the virus and aging.