For many growing old with HIV, advancements in medications and subsidized social services have meant longer, essentially normal lives. The “death sentence” mentality is virtually archaic by today’s standards, because we now have a community of older men who have lived with the disease for decades and who are able to share their wisdom and experiences.
But just as growing older presents challenges, those who have been living with HIV for many years are now also experiencing their own unique sets of struggles, many that go beyond health. It turns out that effective treatments don’t make the social stigma that still surrounds HIV undetectable.
Any gay man knows that any sort of stigma—including being gay or being gay and HIV positive—can affect one’s mental health and overall health greatly. Nonetheless, reports from last July’s International AIDS Conference were that long-term HIV survivors in their 60s had better mental health and less depression than younger people with HIV.
“Long-term HIV survivors have a renewed appreciation of life,” says Nelson Vergel, 53. Diagnosed in 1986 and looking to improve his survival chances, Vergel created the Program for Wellness Restoration (PoWeR) as a source of advocacy and information for those living with HIV. “You have to take control of your overall health, not just your disease,” he advises.
About 40 percent of people on HIV treatment fare pretty well in terms of side effects—no bone loss, chronic fatigue or loss or gain of fat, called lipodystrophy, Vergel says. About 56 percent experience side effects from the lifesaving medications and from HIV-related complications. Although not universally accepted, Vergel says research suggests infected people may lose about 10 years from a normal life span.
Margaret Guroff, with gay-friendly AARP, cites University of California, San Francisco, AIDS researcher Dr. Steven Deeks, who says HIV-positive baby boomers now live long enough to experience “diseases of aging” and may be at higher risk earlier in life for heart disease, dementia and inflammation.
Vergel asks men to consider adopting healthy habits and shaping a positive outlook. “You can work to control, sometimes reverse, side effects by eating well, exercising,” he advises. In other words, “work with it” as best you can since HIV itself may trigger chronic diseases associated with aging, including depression. Experts are quick to note that while it’s natural to feel down sometimes, a pervasive sense of isolation or hopelessness is more cause for concern.
Researchers are working on health checklists specific to HIV, especially for gay/bi men, says David Evans, director of research advocacy for Project Inform. “Right now, a very short checklist, called the veterans aging cohort study (VACS) index, is growing in favor.” The checklist may be one of the most accurate predictors of aging-related HIV problems. “Although we don’t have perfect data yet, I personally advocate that all HIV-positive gay/bi men have regular anal exams and treatment for precancerous lesions,” Evans stresses. “[In general] I think having lived through and escaped from a nearly universally fatal illness has made long-term survivors far more resilient in the face of physical and social adversity than people who haven’t had those difficulties in life.”
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There are also problems that may arise when it comes to assisted living and senior housing developments because HIV-positive men may find themselves turned away. The Williams Institute on Sexual Orientation Law and Public Policy reported in 2007 that 56 percent of Los Angeles County skilled nursing facilities denied infected patients care otherwise offered to noninfected patients.
In 2009, Robert Franke, then 77, HIV positive and in failing health, moved to an assisted living facility in Little Rock, Arkansas, to be near his daughter, Sara Bowling. In Franke’s admissions forms, Bowling disclosed her father’s HIV. Franke spent just a night at the facility before Bowling was told that “we don’t take people with HIV,” reported Blair S. Walker in AARP Bulletin. At the time Franke said, “Although we’re setting precedent left and right that you can’t get away with it, I don’t think we’ve seen the end of it.”
These harsh realities make both support and information resources necessary.
Resources from services like SAGE (Services and Advocacy for GLBT Elders) help HIV-positive men succeed. Robert Espinoza, senior director for public policy and communications, says that through affiliates across the country, SAGE provides support groups for older adults with HIV. They also partner with local agencies on health-related needs. “Our federally funded National Resource Center on LGBT Aging trains professionals nationwide on how to meet the unique needs of older HIV-positive adults,” he says. SAGE maintains the largest online information clearinghouse for HIV and aging-related resources at lgbtagingcenter.org.
Many baby boomers and aging HIV-positive men make great use of these services. Take Keith, 55, diagnosed in 1987. He uses the support and information from SAGE to empower himself, especially around disclosure, a step that reinforces his self-esteem.
“I get HIV and safer sex out there early. That’s my job,” Keith explains. He calmly explains to partners that he doesn’t want to expose himself to other potential viruses, like hepatitis C or gonorrhea, especially with a partner who may not know his own status.
Keith doesn’t allow himself to be defined as the “bad guy” with HIV. “If you need to know a guy’s status, ask. It’s a shared responsibility. Each side of a sexual encounter should know what’s going on inside his own body,” he stresses. If a guy doesn’t know his recent HIV status (“I got tested once in college” doesn’t count), Keith gently and without judgment encourages the guy to get tested. “I’ve had many magical dating experiences,” he says. If they fizzled out, he adds, it wasn’t because of HIV.
Like Vergel, who encourages personal responsibility, Keith tries to keep a balance and accepts that some days HIV is a challenge. “It’s like the houseguest who never leaves,” he jokes, crediting his good health to eating right, sleeping well and keeping a positive outlook. “I have energy to accomplish my hopes and dreams. It’s on me.”
HIV & Aging Resources:
SAGE (Services and Advocacy for GLBT Elders) sageusa.org; lgbtagingcenter.org