Growing Older With HIV

Christopher, now in his mid-60s, once thought he'd never have to worry about getting old.

Almost two decades ago, he came down with full-blown AIDS. After a host of life-threatening illnesses, he not only pulled through, but he also went on to get an advanced degree in finance. Once partying hard because he figured he wasn't going to survive, Christopher now holds down a six-figure job approving grants at a major university.

He considers himself much more than lucky to be alive. He says he's "newly positive about life. You appreciate it more when you almost lose it." He still lives in the apartment he obtained while a client of city services, but otherwise his life is separate from what it once was -- including relying on HIV programs.

He walks to his job and back, a good mile or more each way. Instead of needing care, he has found himself the caregiver to his husband, who suffers from non HIV-related health problems including the effects of cardiac arrest a few years ago.

Thanks to improvements in HIV treatments, people like Christopher who are infected with the virus face a battle that would have been unthinkable several years ago: growing old. One of the fastest-growing segments of the HIV-population is 50 and over.

These men and women are facing societal issues specific to an aging HIV population. Many of these long-term survivors have seen their friends and loved ones die before their time, leaving them even more alone than others in their age group. Many of them are expected to bear the additional burden of caring for their aging parents; one can only imagine the guilt that comes with knowing that their parents may have to care for them instead.

They are now in an age group that may display little sympathy with their plight or understanding of the complications brought on by HIV and its attendant meds. What happens when they have to enter nursing homes or other long-term care facilities where the staff is not informed about HIV?

Fighting a Battle on Two Fronts

People who are facing old age while infected have to navigate a dual battle: Along with all of the problems that come with the aging process are the additional burdens of HIV.

Since HIV meds are still relatively young, no one really knows what the cumulative effects of taking HIV meds for several years might be. At what age does HIV cease to become a "manageable" condition? How do the medications and treatments for age-related illnesses like osteoporosis, kidney damage, diabetes and fatigue interact with HIV meds? And how many are exacerbated -- if not caused -- by those same meds?

Still, with all of these questions and problems hanging over their heads, it's important to keep in mind that, overall, this is very, very good news. The Centers for Disease Control estimates that by 2015, half of all HIV-positive Americans will be over 50 years of age.

Many of these people are having to confront decisions they made early on, such as leaving careers after coming down with severe HIV-related illnesses. Unlike Christopher, for many of them, their lives remain in limbo. They have to expend time and energy navigating the web of programs to help them pay the rent, buy groceries and obtain expensive meds while struggling with chronic fatigue, memory loss, depression and other byproducts of their long battle with HIV.

Add to that loneliness. Dating is hard enough for anyone over 50 in our society. When you bring along all of the health issues and a condition that makes navigating sex all the more difficult, finding a loving partner can seem like an insurmountable. So it's not surprising that a 2010 survey conducted by the New York City Department of Health found that almost 75 percent of HIV-positive New Yorkers were in their 40s and older, more than one-third were over 50. Another study found that two-thirds of them suffer from various degrees of depression.

Emmanuel seroconverted two years ago when he was still very much on the scene and was "partying." Now in his late 50s, he found a life partner (soon to be husband) with whom he lives in Hell's Kitchen, a Manhattan gayborhood. His partner, who is HIV-negative, knew his status, but it did not affect their relationship.

He is, however, one of the lucky few. Most find themselves adrift in a world where AIDS is associated more with the developing world and activism is largely dormant. Perry Halkitis, a professor at New York University who has made a career of studying issues surrounding contemporary gay men, subtitled his new book "The AIDS Generation, Stories of Survival and Resilience."

But Halkitis doesn't ignore the toll of being the "last man standing." Substance abuse, whether alcohol or crystal meth, he writes, "does not always precede the diagnosis, but rather is the result of it. For many long-term survivors, the years of trauma inflicted by the AIDS epidemic is just too much to bear, made somewhat more tolerable by escaping."

The New Field of Geriatric HIV

To service this growing population, an entirely new specialty has grown up around them, geriatric HIV. The need for a new field is spelled out by doctors like Antonio Urbina, associate director of a clinic in another New York City gayborhood, Chelsea.

"We were so focused on just controlling the virus that we started to take our eye off primary care issues," Urbina told the New York Times. "We need more aggressive management, understanding that these patients are at higher risk for heart disease, for stroke, for neurocognitive decline. We need to be aggressive, because there are things we can do now that will allow them to age healthily into their 80s and 90s."

Doctors who are specializing in gerontological HIV have to bring themselves up to speed quickly about drug interactions. They must be aware of every single medication and supplement, including over-the-counter products, vitamins and health-related products such as creatine. Not only that, but they need to be aware of diet and nutrition; unfortunately, medical schools still lag in teaching more than the basics, so they're largely on their own.

Gay Men's Health Crisis has issued a study that made several recommendations in caring for older people with HIV. It included specialized training for doctors, nurses, home healthcare aides and social workers, but also recommended more aggressive treatment. That means doctors who don't hesitate to press their patients about things like STDs. Thanks to Viagra and Cialis, older people are remaining sexually active much more than previously, which can translate to increased risk for non-HIV STDS.

As its name implies, service organizations like GMHC were founded to fight an illness that was thought to mean at best a shortened life span. Now that that is changing, these organizations are having to expand their efforts -- and educate themselves in the process.

"We do not have the answers to many of the pressing questions which will determine health outcomes for this burgeoning generation of older adults living with HIV," Sean Cahill, GMHC's director of public policy, wrote in a 2010 study.

There's even a new term to describe the difficulty in determining whether a condition is related to HIV or age: "symptom ambiguity."

"While longer life spans are the benefit of successful antiretroviral therapy, we lack knowledge on how aging and HIV interact," Cahill noted. "In coming years, research must address how these diseases, and the medications to treat them, interact with HIV and HIV treatment."

Steve Weinstein has been a regular correspondent for the International Herald Tribune, the Advocate, the Village Voice and Out. He has been covering the AIDS crisis since the early '80s, when he began his career. He is the author of "The Q Guide to Fire Island" (Alyson, 2007).

This story is part of our special report: "Live a Life Worth Living". Want to read more? Here's the full list.