‘A Lot of Unknowns’

There was a time when Lee Chew was so sick, he'd lost all feeling in his lower body—forcing him to wear diapers and get around by wheelchair. At 6 feet 2 inches, the once-robust actor was a skeletal 135 pounds, with severe pain in his hands that prevented him from even holding a fork. It was 1996, nearly 10 years after his diagnosis, and AIDS was all around him: friends, lovers, even his doctor, all died of the disease. Funerals were a monthly ritual. "In a way, living through the AIDS crisis of the 1980s was like living through our own version of the Holocaust," he says. "It was a nightmare."

Chew slowly began to wake from that nightmare with the approval of a new antiretroviral drug, Crixivan, that would help nurse him back to health. Slowly but surely, he went from wheelchair to walker, walker to cane, and finally, back to the gym. Today, Chew, a New Yorker, by way of Roanoke, Va., is happy and healthy, tan and fit. At 59, he looks about 40. "I can be pretty vain," Chew jokes. "I like to make sure my pecs look good."

In reality, Chew worries about a lot more. He is a social worker for aging HIV-positive gay men, so AIDS remains a constant character in his life. And though he's healthy, Chew is getting older—which brings a whole new set of worries. His is the first generation to age with HIV. As he ages, there are changes in how his medications will interact. And doctors and researchers are only beginning to figure out what, exactly, that means.

What doctors do know is that despite infection rates that remain level, people over 50 now make up the fastest-growing segment of those living with HIV—part of the reason why the AIDS Institute this week announced Sept. 18 as national HIV/AIDS and Aging Awareness Day. It's perfect timing: between 1990 and 2005, local Department of Health studies show that the number of AIDS cases in people over 50 shot up by more than 700 percent—today, 35 percent of people with HIV are aged 50 and older, and 70 percent are over 40, according to the AIDS Community Research Initiative of America (ACRIA). A large portion of those, say advocates, are gay men. Some of these older patients are newly infected, while most are long-term survivors.

Researchers know that HIV and age make for a complicated balancing act—a convoluted interplay of the disease itself, natural aging symptoms and the side effects of antiretroviral medication that may enhance those symptoms. Part of the aging process is already about a loss of immunity. So the fact that HIV is an immune disease may be one reason why its sufferers tend to age fast, in everything from body changes to cardiovascular disease, says Dr. Richard Havlik, an epidemiologist and former chief of the epidemiology, demography and biometry laboratory at the National Institute on Aging, in Bethesda, Md. But patients can also be plagued by ongoing side effects of drug cocktails, which range from high blood pressure to neuropathy—a painful nerve disorder that causes numbness in the hands and feet. And they must often fight fire with fire: a medication may heal one ailment, but in many cases, it only causes another. "All of those are bonuses—the side dishes—to the main course of HIV," Chew says.

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.