Correction at bottom of story
Back in the 1980s, when no one knew much about AIDS, Freddy played percussion in Latino bands in clubs in New York and Puerto Rico. In the early morning, after the gig, they would go to a “shooting gallery,” where they would romance heroin and cocaine.
At the time, Freddy thought that HIV and AIDS were something that young gay men got. It was long before he and his friends knew that sharing needles could be just as deadly as unprotected sex.
Freddy is now 57 and has survived HIV for 23 years. His memories are tinged with sadness from years of losing friends and relatives to HIV/AIDS, cancer and substance abuse. He feels lucky to be healthy, saved by antiretroviral drugs that have turned the potentially deadly disease into more of a chronic illness. And he is worried that others his age aren’t always taking precautions to avoid HIV.
Freddy is part of a quiet, growing population of people over age 50 in Connecticut with HIV. Currently, 5,000 people — almost half of the 10,500 state residents living with HIV and AIDS — are over 50. And, while many older residents remain unaware that they are just as susceptible to HIV as younger people, the infection rate continues to increase — 60 to 90 new cases in this age group are reported each year, according to the state Department of Public Health.
Most, like Freddy, were diagnosed years, or decades, before they reached 50 and many of them have lived longer than they ever expected due to increasingly effective antiretroviral drugs.
Many men and women in their 50s and 60s who had been in long-term relationships and suddenly find themselves alone — newly divorced or widowed — often have a poor understanding of the risks of HIV. The virus is usually not on their radar at all.
“If they are dating somebody, they feel they don’t need to use a condom because they think it is a young person’s disease,” said Angel Ruiz, who runs an HIV and substance abuse prevention program for minority men over 50 through Latino Community Services in Hartford.
“They came of age when the biggest risk of having sex was pregnancy and that was it. They were not exposed to the education about HIV. Now they are single again and out and about and not really considering that they are at risk for contracting HIV” or sexually transmitted diseases, said Aaron Tax, director of federal government relations for Services and Advocacy for GLBT Elders (SAGE).
And there has been little in the way of education and prevention programs targeted at this age group.
“We have a whole mechanism in this country where it seems like the focus is on younger people. You see public service announcements about HIV on bus shelters, but most of the faces on those posters are young people. Most people probably haven’t seen an old woman or old man on those posters,” Tax said.
Internet dating, drugs like Viagra and the commercial sex industry have made it easier for older people to be sexually active. In fact, prostitutes regularly visit older men in some senior housing apartments in Connecticut, timing their visits to coincide with the day Social Security checks arrive, health care experts say.
In Connecticut’s older population, men have twice the risk of HIV as women, and Hispanics and blacks have six times higher the risk than whites, according to the state Department of Public Health.
HIV tends to be more of a problem in Connecticut’s cities, with more than half of all cases in Hartford, New Haven and Bridgeport.
“But it is widespread throughout the state and almost every town has someone living with it,” said Aaron Roome, HIV surveillance program coordinator for the Department of Public Health.
Poverty is also an important risk factor because it is associated with intravenous drug use, Roome said.
Doctors often do not routinely administer HIV tests to older people because they assume they are at low risk for intravenous drug use or sexual activity, or don’t want to embarrass or insult them.
But actually, the AARP reports that 50 percent of women and 55 percent of men aged 45 to 59 are sexually active.
‘Check Day’ at senior housing
In some cases, older residents in senior housing are turning to the commercial sex industry – and they are not always using protection, health care and HIV advocates said.
“There is a healthy trade going on in senior housing,” said Barbara Shaw, clinical director of Peter’s Retreat, which provides congregate housing for people living with HIV/AIDS in Hartford.
Young women often visit older men at senior housing complexes on the day they get their Social Security checks.
“It’s called Check Day. It’s a national phenomenon. It’s not just in Connecticut,” said Jim Campbell, president and CEO of the New England Association on HIV Over Fifty/NEAHOF.
In Hartford, some older men, particularly those living alone in apartments who may be widowed or divorced, have a standing monthly date with sex workers, Ruiz said. And the visits often involve more than just sexual intimacy. Older men will often share a meal with them and urge them to shower and rest.
Often, the men avoid using a condom to offset the reduced sensation that can come with age, exposing themselves to the risk of infection, Campbell said.
The stigma surrounding HIV also interferes with using protection. Some older people are afraid their partner will judge them or suspect them if they ask for a condom.
“People are afraid that someone will find out. Stigma is the biggest problem. They say, ‘If they think I should use a condom, they must think I’m HIV,’ ” Campbell said.
Freddy, who lives in Hartford, has heard the excuses and always urges his friends to use a condom.
“I say, ‘Hey protect yourself. Use a condom,’ ” he said. “They’ll say, ‘But it doesn’t feel good.’ I’ll say, ‘Up to you. You want to die?’ “
Freddy can tell them firsthand that having HIV makes dating a whole lot harder.
“I can’t get a partner — a female. It’s hard. You tell a girl you have HIV and she looks at you different. That part is hard,” he said.
No Routine Testing
Older adults aren’t often tested for HIV because they often feel uncomfortable discussing their sex lives, partners and condoms with doctors. And doctors, meanwhile, don’t often offer the test.
“On the provider side, there is a stereotype that older adults don’t have sex. We want to make sure they are telling their patients, just as they would recommend a colonoscopy or mammogram, to make sure they have an HIV test,” Tax said.
Health officials estimate 20 percent of those who have HIV don’t know it. As a result, these people could unwittingly be spreading the disease and delaying treatment for themselves.
Some symptoms of HIV are overlooked or misdiagnosed because they mimic diseases that can affect older adults, including AIDS-related dementia and neuropathy of the hands and feet, said Shawn Lang, director of public policy for the Connecticut AIDS Resource Coalition.
Detecting the disease early helps keep the virus from developing into the deadly AIDS virus and can even help to lessen an infected person’s risk of infecting others.
“More and more evidence is showing that people who have HIV and get on antiretroviral therapy, can decrease their viral load, making them less likely to transmit the virus,” said Chris Andresen, state AIDS director for the state Department of Public Health.
State and national health care advocates are starting to ramp up awareness of the disease and promote routine testing in older people.
On Nov. 29, the Connecticut AIDS Resource Coalition, together with the state Department of Social Services, will host a one-day conference on Aging, HIV and GLBT (Gay, Lesbian, Bisexual and Transgender). The conference will be held at the Four Points Sheraton in Meriden.
“We are trying to create more awareness,” Lang said. “This is a consciousness-raising event to plan forward — where do we go from here?”
Starting in January, the state health department will provide funding to community health centers around the state so they can offer routine HIV testing, Andresen said.
The department is encouraging routine testing in an effort to remove the stigma while uncovering and treating new cases.
“Making testing routine for older people can open up a discussion about health care,” Andresen said.
On a national level, the Centers for Disease Control is pushing for routine testing of older adults, and the advocacy group SAGE is pushing for more targeted education and prevention. SAGE is lobbying the CDC to extend the age guidelines for HIV testing beyond age 64.
“We are trying to push the CDC to say there is no longer an upper limit for HIV testing,” Tax said.
They are also pushing the CDC to report data in five-year increments rather than bigger age brackets to get better data on trends for older adults.
As for Freddy, he is doing his part to spread awareness on a smaller scale. He is urging adults he knows to use condoms. And he has made a mission of trying to warn his nieces and nephews about the threat of HIV.
“I tell them everything. I just try to educate them,” he said. “Maybe I’m alive for that. At least I can help one of them.”
Correction: A sentence in this story initially misstated the estimated percentage of people who have HIV but have not been diagnosed. The story has been revised to provide the correct estimates by health officials.