In the last weeks before the mayoral election, AIDS activists made a number of final efforts to be heard. Advocates and HIV-positive New Yorkers protested Mayor Bloomberg’s AIDS policies outside his midtown campaign office at lunchtime one Tuesday last month. Chanting “AIDS needs a mayor!” the crowd booed Bloomberg for declining to participate in an AIDS-focused mayoral forum organized by AIDSVote.org.
Though protesters from AIDSvote.org acknowledged that Bloomberg had provided critical funding to community organizations, they condemned his failure to reform a housing policy requiring that people reach a certain level of sickness before they qualify for AIDS housing. At the protest, challenger Bill Thompson outlined his own AIDS policies. To cheers, he expressed his support for expanding housing and rental assistance to poor people with HIV regardless of health status.
Whoever ends up leading New York City into the next decade will have to address the needs of an expanding number of HIV-positive seniors. Americans infected with HIV are living into old age, thanks to highly active antiretroviral therapy (HAART), a treatment developed in the mid-1990s that combines multiple virus-combating drugs. In New York, 36 percent of people living with HIV or AIDS are over 50, and epidemiologists say that proportion could exceed 50 percent in the next decade.
Despite growing acknowledgment of the issue, including a 2007 presentation
by the city’s Department of Health, AIDS nonprofits are still trying to re-educate the public about what too many still consider a younger person's problem. Furthermore, researchers and patients say, support services and prevention programs are largely aimed at the young.
“You give these people antiretrovirals. Save their lives. Then what?” asked Dr. Stephen Karpiak, who researches HIV in the elderly for the Aids Community Research Initiative of America in midtown Manhattan. Karpiak was the principal investigator in a 2006 study of 1,000 HIV-positive adults over 50, soon to be released as a book. The study suggested that HIV-positive seniors are particularly vulnerable to depression and loneliness because aging and the stigma associated with HIV are both isolating forces. Yet health workers and caregivers often mistake symptoms of depression – agitation, irritability, achiness, sadness, fatigue – as a normal part of aging, or an expected reaction to living with HIV. “The standard of care isn’t working,” he said.
Casilda Rivera, 58, said she contracted HIV from a long-term boyfriend, whom she believed was faithful. That is, until she fell ill. “I had double pneumonia, and the doctor said that all the tests they took came out negative,” she said. “The only one left was the HIV test.” She runs a hand through her curly gray-blond hair as she remembers her prognosis: “They told me I only had two weeks to live.” That was 17 years ago.
When Rivera suffered depression in 2000, she sought out the help of a therapist and a support group. She still travels to Harlem from her home on the Upper West Side to participate in the Divas Over 50, a group run by Dr. Frances Melendez, director of behavioral health at Iris House, a center for women with HIV/AIDS. Twelve to 15 women usually attend the Wednesday afternoon meetings; the oldest member is 80, and the youngest member (a “diva in training”) is 48. Melendez said the group is fairly evenly split between women who contracted the virus through risky sexual behaviors or intravenous drug use, and women who, like Rivera, were infected by an unfaithful partner. The women share their feelings and advice on topics like menopause, depression, treatment options, grandparenting, sexuality and dating.
Yves Gebhardt, 57, said he would like to see more programs that, like the Divas, cater to seniors. A volunteer at the East Harlem HIV Care Network, Gebhardt said that he has found good access to care and medication in New York, but a lack of support services and education campaigns directed toward the elderly. “Where would an older person, say a 60-year-old, go to get tested?” he asked. “Would you expect them to go to a [community based organization] filled with young people?”
Testing and prevention need to become priorities, say healthcare and community workers who deal with HIV-positive seniors. Although the “graying” of people with HIV/AIDS due to HAART accounts for the majority of infected seniors, new diagnoses among people over 50 are increasing – they now account for 17 percent of new diagnoses in East Harlem, compared to just 12 percent in 2001. Citywide, it's 16.7 percent today, versus 14.6 percent in 2001.
Heterosexual intercourse is the most common method of transmission among seniors, according to Shaw and Melendez. “People don't think about older people having sex. I don't want to think about my grandmother having sex. But they are,” said Melendez. She adds that that since Viagra and other erectile dysfunction remedies are now readily available, more seniors are sexually active than ever before.
But many of these sexually active seniors are not protecting themselves. Condom use is lower among seniors because post-menopausal women do not need birth control, according to a report by the city Department for the Aging; however, these women’s thinner and drier vaginal walls put them at a higher risk for transmission.
Brenda Lee Curry, 64, who runs a support group from her home in Manhattan, said seniors are not using condoms because they feel uncomfortable speaking frankly about sex. “For older people, it's not the norm to talk about protection and testing. They don't ask questions, they just go to bed. That's the way we were raised, not to ask questions.”
She said many seniors do not realize they are at risk, having never received sex education. Curry has seen AIDS education improve dramatically since her diagnosis in 1985, but is still frustrated by a lack of messages aimed at seniors: “Nothing – no billboards, no bus stops, no subways – show an ad with a senior's face on it.”
Gebhardt agreed that public service announcements neglect seniors, saying that it simply never occurred to him that older people got AIDS. He was not tested for the virus until 2002, when he was diagnosed with Hodgkin's lymphoma, a form of cancer sometimes associated with HIV. Gebhardt said he believes he contracted the virus from a sexual encounter in 1994 and lived eight years completely unaware he was HIV-positive.
“I never even thought of the possibility of having HIV,” he said. “I thought it was a young people thing.”