“My husband and I were separated, and I was having sex with another man,” says Dorothy (who asked that her last name not be mentioned). In a low, raspy voice laced with a mirthful acceptance she attributes to her age, the lifelong 78-year-old New Yorker adds: “The man had used drugs years before, but I didn’t really think I should be concerned [about HIV]. No one ever spoke to me about it.” Hadn’t she at least discussed with her doctor the risks of unprotected sex? “Doctors just take for granted that a woman in her 60s isn’t having sex,” she says. “But of course I was.”
Even when she discovered that the man (who she believes may have infected her) had died of pneumonia, and she suspected he might be HIV positive, she avoided getting an HIV test for years. By the time Dorothy was diagnosed, in her mid-60s, she had AIDS. As recently as four years ago, Dorothy, a church-going great-grandmother, heard HIV condemned—at a religious conference—as a curse on sinners, thus reaffirming her original terror of HIV stigma in her community. She has remained quiet on the subject, until now.
Dorothy, who’s currently in good health, is hardly alone. For more than a decade, at least 10% of new HIV infections have occurred in people over 50. They join the ever-growing ranks of people infected in their 20s, 30s and 40s who, thanks to HAART, are surviving into older age. In New York City, 30% of HIV positive people are already over 50 (the majority infected years before) and 70% are over 40, and fast approaching the big 5-0. While the lack of data on HIV among people over 50 makes transmission modes hard to pinpoint, researchers believe that heterosexual transmission is double the rate it was 10 years ago and may now constitute the majority of new infections. A large percentage of senior infections, both of the newly diagnosed and especially of the long-term survivors, remain in gay men and also injection drug users. “People think of [seniors and HIV] as merely an emerging need, but when you look at the stats, the need is here now,” says Bill Stackhouse of NYC’s Gay Men’s Health Crisis (GMHC), where the HIV positive clientele over 50 shot up from 25% in 2003 to 33% today. While some scientists, advocates and resource providers are finally beginning to look at the graying of HIV, AIDS service organizations and senior centers still rarely house HIV treatment or prevention programs targeted at seniors. Each often thinks the issue is the other’s domain, when they think about it at all, and few aging faces have ever graced prevention posters. Seniors themselves are often hesitant to discuss their sex lives and HIV, due to stigma and a generational squeamishness about frank, public sex talk, meaning few are currently outspoken advocates for awareness.
Only 38% of women over 50 in an Emory University study, for instance, reported ever talking about HIV with their doctors. However, older people are healthier and have sex longer than their counterparts in past generations. According to a survey in the Journal of Gerontological Social Work, 65% of adults ages 60 to 71 living in retirement communities are sexually active. “In America there is a myth that as people age they no longer have sex,” says Ron Stall, PhD, professor at the University of Pittsburgh Graduate School of Public Health. Kansas City’s Jane Fowler, 71, who tested positive in 1985 at 49 and, in 2002, founded HIV Wisdom for Older Women, agrees that older people were conditioned to keep mum about sex, but asserts that the blame does not stop with them. “The common thinking is Grandma and Grandpa shouldn’t be out there shooting [up] and screwing. You know the old joke, that my parents just had sex one time.” She adds, “For all the blatant sexuality out there on TV and in the culture, we still just are not comfortable talking about sex.” She believes the reticence extends to medical professionals, who are often younger than their patients and may “feel like they are talking to their grandmother or mother about sex” let alone safer sex. Despite the surge in sex, many seniors had limited sexual experiences before marriage and never developed the skills to negotiate or discuss sex. “We are afraid to share stuff. In my generation, [sex] was a secret and there was certain stuff you just didn’t tell,” says Linda Hamptlon, 59, who contracted HIV at 50 from a man she dated for about a year. A study published in the Journal of AIDS in 2003 reported that even women as young as 35 to 54 were much less likely to ask about their partner’s sexual and drug use history than women 20 to 34.
Meanwhile, millions of American men, both coupled and single, are popping erectile dysfunction remedies like Viagra, Cialis and Levitra, reinvigorating retirement communities across the country. While TV ads for the drugs featuring nuzzling senior citizens have aired for a decade and doctors doled out millions of the pills last year, they rarely include safer sex pointers and HIV info with the pills. Because many older women have gone through menopause and can’t get pregnant, straight seniors, unaware they are at risk for HIV, often think condoms are superfluous. Older men of all sexual orientations are often especially condom-adverse because while ED drugs prolong erections, they do nothing to help with decreased sensitivity. Viagra users have, on average, been found to have 35% more sexual partners than non-users and are 35% more likely to have an STD. Older women, in turn, are physically more susceptible to HIV infection than younger women due to the thinning and drying of the vaginal walls that comes with age, a condition that may allow HIV easier entry into the bloodstream.
Seniors are not only having sex later in life, but are having it with many different people, due to higher divorce rates, the loss of a partner and a national culture that supports and revolves around dating more than in the past. Because men die on average 6.5 years earlier than women, some retirement communities are up to 80% ladies, meaning the available men are in short supply and therefore in high demand. These scarce straight men, dubbed Condo Romeos, often have multiple female partners. “I think there is a party mentality, like they are on a long spring break,” says Jim Campbell, 60, head of the National Association of HIV Over Fifty (NAHOF), who has been positive himself since 1992. The latter-day lust for a carefree life applies to both sexes and all socioeconomic classes. For instance, some single older women with a little cash to burn go on cruises that offer male escorts. Alternately, there are men who call out for sex the day their monthly social security check arrives in the mail.
Also, little information exists on how the virus progresses with age, how antiretrovirals affect older people or how medications commonly taken by older people to treat ailments from diabetes to hypertension interact with HIV meds. “We proved AIDS is not a disease that looks at birth certificates, but to this day there are no intervention studies proving what is efficacious in [preventing and treating] HIV in people over 50,” says Stall, who, in the early ’90s, headed up some of the first research on HIV rates and risks in older Americans. With life expectancy continually increasing and baby boomers aging, the number of Americans over 65 is expected nearly to double by 2030. Many experts predict the number of positive seniors will continue to increase along with the vitality and size of the population. The Centers for Disease Control (CDC), however, does not currently have, nor is it developing, any programs aimed specifically at preventing or treating HIV in older people. The prevention lapse also applies to another stigmatized group: senior IV drug users. Few acknowledge that needles are responsible for roughly 20% of infections in seniors, both among drug users that have survived and continued using into older age and among those who start using over 50. And any possible link between senior drug use and sex—a stigma daily double—remains unexplored.
When sex itself remains taboo, as with seniors, the diseases it can transmit remain even more so. Stephen Karpiak, PhD, started pushing HIV prevention for seniors in the late ’90s while working at AIDS Project Arizona in Phoenix, a hotspot for retirees fleeing colder climates. The average age in some communities surrounding Phoenix hovers in the late 60s. Karpiak visited the seniors to offer up an HIV education, often congregating in the basement of their suburban homes due to the attendees’ fear of HIV stigma. “These were white, upper-middle class women who had just started dating again,” he says. Edid Gonzales does prevention outreach for Seniors HIV Intervention Project in Broward County Florida. “[Senior centers] say we don’t have anyone with HIV so you don’t need to come here,” she says. As with HIV prevention in high schools, where the presiding men-tality often suggests that the age group shouldn’t be having sex so condom talk isn’t necessary, she reports that even facilities that let her in the doors, often forbid her from doing condom demonstrations. When she is allowed to set up shop, seniors often don’t show, fearing that someone will assume they are doing something they shouldn’t if they attend. Some educators recommend folding the topic under broader seminar heads like Sexuality in Older Adults, to alleviate fears of judgment.
With no one talking to seniors about HIV, they do not think it is their concern and therefore do not use protection. According to one survey, people over 50 at risk for HIV are one-sixth as likely to use condoms as at-risk 20-somethings. “I don’t think women over 50 think it could happen to them,” says Hamptlon. “But we are in the fast lane.” Says Jane Fowler, “I hear women say, ‘I just got back in the dating world. I’m seeing so-and-so. I knew him when he was married so why would we need to think about HIV?’ I had known the guy who infected me for my entire adult life.” Without a perceived risk, seniors also don’t get tested and because symptoms of HIV like dementia and weight loss are often confused with regular signs of aging, many cases go undiagnosed until late stage disease progression. Some are never diagnosed at all. Nearly 5% of people 60 to 79 who had died in a long-term care facility in New York City were found to be positive, though none had been diagnosed before they died. New York City Councilwoman Maria del Carmen Arroyo, chair of the New York City Council Committee on Aging worked as executive director of a Bronx senior residence before taking her seat on the City Council. “There was this handsome and charming man who was very popular with the ladies,” she recalls. “When he passed away, we learned that he had AIDS. He wasn’t even diagnosed until the tail end of his illness when he had signs of dementia. His partners had no idea.”
Even if they are aware that they may be at risk for HIV and other STDs, many women are hesitant to ask the man to use a condom because they fear rejection, especially in a competitive environment where the number of available women vastly outweigh the number of available men. Hamptlon can sympathize. “I was 50 years old and a younger man was paying attention me,” she says of the man from whom she contracted the virus. “I just wanted to be loved.” Older people frequently have fewer friends and a smaller support network to rely on than younger people, and a feeling of loneliness can make them less likely to use protection if ditching it means they’re more likely to have sex and, therefore, feel wanted.
This may be especially true of older, out gay men, who experience older age without a spouse or, often, a significant other. According to Campbell, some haven’t been tested in years, others have issues with drug use, loneliness or self-esteem, “and for some ungodly reason,” he adds, after making it through the ’80s and ’90s without getting infected, “some think they are immune.” Los Angeles resident Lance Webster, 63, has a plaque on his wall from the early ‘90s honoring him for hosting and leading a safe sex workshop. In 2000, he tested positive. “There was a certain degree of loneliness that I tried to satisfy, so I had more one-time sexual encounters than I had in the past. The fact that people had stopped dying seemed to take some of the concern away,” he says. “You have unsafe sex by accident and nothing happens and then you’re in a pattern and one day you get unlucky.”
Seniors frequently assume because prevention messages do not address their demographic or outlook on life, they do not need to pay attention. Professor Judith Levy, PhD, of the University of Illinois Chicago, says, “Young people sometimes have trouble realizing they can be at risk because of feelings of immortality. An older person realizes the limitations of life expectancy, but may feel like, based on long years of life experience, that they are not at risk. We need to help them realize that they are at risk and that HIV doesn’t just affect the young.” Also, some older people in the know about HIV and treatment have the perception that with HAART, HIV can take decades to prove deadly and something else may well get them first. Peter Laqueur, 58, has dealt in HIV prevention for most of his adult life and currently works for the New York State Department of Health AIDS Institute. He was employed there two years ago when he tested positive. “I guess I became less afraid of it. It can be a very manageable thing and I can still live for 10 or 15 years. Maybe I was willing. I’ve been a good boy and done all the things I was supposed to,” he says, adding, “You know I only see that attitude in people under 25 and people over 45, that the drugs are great and it’s not that bad. Not in people in between. But it’s still a foolish risk.”
He believes that prevention messages need to address issues like safe-sex fatigue and survivor guilt, especially if they hope to reach older gay men. “We live in a society where youth is the premium, be it advertising, our general mindset or those that work in HIV/AIDS. And we often think of prevention as something directed at the young,” says Karpiak. In addition, an increasing number of men are coming out later in life who may have been married during the early AIDS crisis and resulting flood of safer-sex education. Laqueur still often meets sexual partners online and has increasingly begun to encounter such men. “It’s not a population current HIV
prevention can reach,” he says.
He has hope that the trend is changing, however. Karpiak now works as Associate Director for Research at the AIDS Community Research Initiative of America in New York City. He headed up a survey of 1,000 positive seniors in New York City, published last June. While the results reflect only one subset of New Yorkers, it is the first detailed portrait of positive people over 50. The respondents were predominantly of color, most identified as heterosexual, 70% lived alone (compared with 30% of people over 50 in general) and 83% were on Medicaid. Karpiak hopes the study will help experts understand the issues that positive seniors face and who is at risk to better target prevention and testing strategies. Last summer, Karpiak and other advocates presented to the New York City Council about the growing problem and the fact that the large number of positive elderly people could strap already strained Medicaid and Medicare programs, especially without any established infrastructure to address their specific concerns or prevent new infections. Under Councilwoman Arroyo’s leadership, the City Council is working to draft a plan to address HIV in NYC’s seniors in time for 2008 budget hearings. Last fall GMHC received a $500,000 grant from the MAC AIDS Fund to develop an over 50 program, expected to launch by summer. “Every time I discuss this with colleagues here or around the country they are like, ‘Oh my god, we should be doing this,’” says Stackhouse, adding that he hopes other cities and organizations can model their emerging approaches on GMHC’s.
NAHOF first took the agenda of positive seniors to the Senate in 2005, when its members addressed the Subcommittee on Aging. Campbell plans to add senior-specific provisions to the Ryan White Care Act, which allocates the majority of federal AIDS funds, when it is again up for renewal in three years. AARP reps were set to attend their first NAHOF Conference this March, showing HIV has hit their radar. In addition, more positive seniors are stepping up and speaking out, including Dorothy (though she did still request that her last name be withheld). “I was ignorant and very ashamed. Education made me overcome all of that,” she says about her recent decision to start educating church groups frequented by older women about HIV. “A lot of women my age are dating and putting themselves at risk, but if they see a person with AIDS at this age, they think twice.”
These efforts still lack cohesive national leadership and federal funding. “I think it’s because of a drought in prevention money and because the government isn’t allowing people to talk about condoms,” speculates Campbell. Rob Janssen, MD, director of HIV/AIDS prevention at the CDC, says, “Our programs focus on people in late adolescence through early 40s, because they have the vast majority of new infections. The rates in older people are so low, that it is not worth the cost. Programs for high-risk groups also reach older people in those groups.” He adds that the CDC’s testing regulations do recommend testing for people up to age 64. “The CDC is assuming that people over 64 are not having sex. We believe everyone should be tested into their 80s,” says Campbell, before bringing up a phone call he recently received from a 67-year-old woman whose husband had just tested positive for HIV. She had not yet gotten tested herself. “Here she was thinking they were going to hold hands on the front porch and live quietly. She didn’t know how to tell her children or grand-children, or what it meant in terms of stigma or broken trust. The woman was lost and sadly there aren’t even age-specific support groups.” Dr. Stall says, “It’s almost analogous to black gay men. It’s plain as day there is a problem, but people have trouble talking about it.” That’s the trouble with AIDS.