Long-Term Thriving

My So-Called Positive Life
Long-term HIV survivors search for care, community and meaning
by Larry Buhl

Perry Halkitis wrote a book, The AIDS Generation, Stories of Survival and Resilience, because so little was known about this group. Halkitis, a professor of applied psychology and public health and medicine at New York University, tells A&U that the title of his book, due out in October from Oxford University Press, is about how long-term HIV survivors have made peace with the disease over the past three decades.

“Most literature on aging survivors of HIV focuses on deficits, but I wanted to show resilience and document the generation that lived through this dark time and not just survived but thrived,” Halkitis explains.

The book asks and tries to answer the question that people with HIV have been grappling with since around 1996: How, then, shall we live now that we’re allowed to live?

To attempt to answer this Halkitis conducted ethnographic studies of fifteen HIV-positive men, mostly in their fifties, whose young lives had been derailed by the epidemic in the eighties. “That time, for them, should have been about establishing a place in the world, and by now they would be starting to think of their legacy,” Halkitis tells A&U. “But what I found was now this group is doing the business they’d put off in their twenties.” That business, he says, includes establishing or re-establishing careers and figuring out how to relate to other men as sexual beings and as friends.

Halkitis and his colleagues interviewed subjects one-on-one in interactive, loose sessions, and followed up with focus groups. The men he interviewed bonded from the experience of sharing their stories with strangers. “They felt like there was no place for them and their peers to socialize, even in New York. Now they’re still meeting on their own for game nights and brunches after the interviews are over.”

Understanding the Needs of Older Adults with HIV
That sense of isolation is one of the most common complaints for older people with HIV, particularly gay men. In a hyper-youth culture, they feel uncomfortable at most bars and clubs, or they have no interest in establishments with drinking. More than anything, they are yearning for a place to meet others in a non-sexual, non-threatening environment, men of the same age who understand what it’s like living with the disease and what it was like to face an almost certain death (pre-ART).

The need for connection was one of the reasons that Services and Advocacy for Gay, Lesbian, Bisexual & Transgender Elders (SAGE) was created thirty-five years ago, according to Catherine Thurston, Senior Director for Programs. “Over the life of the AIDS crisis, our programs have shifted along with the needs of those infected, but what’s consistent is that older people with HIV felt and still feel shut out of the mainstream not just because of the virus but because of their age,” Thurston tells A&U.

SAGE does not cater exclusively to people with HIV, but many of its services and programs for older LGBTs do promote a safe place where people can be LGBT and older and positive, according to Thurston. Based in New York City, SAGE has local affiliates across the U.S. and is also developing a Diverse Elders Coalition for older LGBTs of color.

The need for culturally competent care becomes critical as people with HIV age. For those in their seventies, eighties, and beyond, who may need assisted living or nursing home care, finding facilities that are experienced in caring for those who have HIV-related illnesses is next to impossible.

“Most nursing homes don’t know anything about HIV,” Jim Johnson, President of the National Association of HIV Over 50, notes.
Johnson points out that LGBT issues become a factor in nursing homes as well. Many straight residents came of age in a time when homosexuality was considered a disease, and they’ve been slow or resistant to change their attitudes. Add that to the stigma and fear of HIV and you have a toxic bomb of misunderstanding that can leave an HIV-positive elderly gay man completely isolated in a typical residential facility.

“Even in hospitals, the lack of information about HIV can be pretty overt,” Johnson says. “We have plenty of examples of, say, the urology department, handling specimens of HIV-positive patients with double gloves, when there is absolutely no need to do that.”

SAGE is one organization that’s combating ignorance and homophobia, along with HIV-phobia for older adults. Thurston points out its robust caregiving program, including home care, supplemental support, and financial help. They’ve received a small grant—$300,000 for three years—from the Administration on Aging to train mainstream health providers in giving culturally competent services. “There are many organizations that focus on older adults but don’t know about the needs of those with HIV, or LGBT issues,” Thurston says. In addition to reaching out and educating those groups, SAGE has been assisting LGBT community centers around the country in creating safe spaces for older adults with HIV to feel welcome.

“One of the many misconceptions we want to reverse is that older adults don’t have sex and therefore don’t need preventative services,” Thurston adds. But they do have sex, and they do have unsafe sex. We are seeing some seroconverting in their seventies and even eighties.”

It’s Never Too Late to Thrive
If you were to look for a role model for aging gracefully with HIV, Christopher West-Davis, who works in research finance at a major medical center, might be a good one to follow. At sixty-two, he’s healthy, except for needing a hip replacement, a drawback of walking miles a day for years. His only HIV-related ailment is CMV retinopathy in both eyes, a common non-life threatening illness. He needs vision enhancement software for his computer, and it’s such a non-issue that he forgot to tell me about it at first. “I really don’t think about the CMV,” he admits.

In 1994, his health was deteriorating rapidly, and PCP stood a good chance of ending his life. He was one of the first people to go on protease inhibitors, and as a result was snatched back from the brink of death, he says. Unlike many HIV-positive men his age, he doesn’t feel isolated at all.

“Aging and being gay can be more difficult than aging and having HIV,” he tells A&U. He admits that his experience may be different than many; he lives in a large, multicultural neighborhood in New York City, has lived with a younger partner for seventeen years, and his social circle primarily includes men decades his junior.

“I have one friend from the eighties who’s still alive. I went to so many funerals I lost count. But recently I have met people my age who are positive and doing well physically and socially, so I’m not alone.”

West-Davis’s main concern regarding HIV is not his own health or morbidity, but the fact that younger generations don’t take the disease seriously. Even though he’s doing fine, he faces an uphill battle in convincing twenty- and thirtysomethings that it’s still not a disease you would want to have if you can avoid it.

“There is an almost total lack of concern that I see among the younger generation [regarding HIV]. The information is everywhere. They know how it’s spread and how to prevent it. But they don’t pay attention to it. There’s nothing I can do about that, and it pisses me off.”

That generational divide in HIV attitudes is striking, according to Halkitis, fifty. People who lived through the deadliest years of the crisis in the U.S., from the early eighties to the late nineties, share an understanding, a fear, a loathing, and even a respect for the disease, that those who came of age after antiretrovirals hit the market can’t fathom.

“This generation of HIV survivors suffers from a form of PTSD still,” says Halkitis, who is positive. “In a sense HIV is the 9/11 of our lives, and this is true not just for those who have HIV but for those who saw people dying around them but have remained negative.”

West-Davis offered some advice for those aging with HIV. “You are defined by what you do, not by some virus. Get out. Do things. Volunteer. Spend some time with younger men and women living with HIV. And no matter what you do, enjoy it.”

Larry Buhl writes the monthly Hep Talk column for A&U.