When Edward Shaw was diagnosed with the human immunodeficiency virus, or HIV, in August 1988, he thought it was a death sentence. But now, the burly, 66-year-old resident of the Upper West Side seems far removed from the nearly two-decade old diagnosis.
"I smile a lot," Shaw said with a chuckle on a recent afternoon.
Shaw is not alone. As antiretroviral drugs become increasingly successful at keeping people with HIV alive and healthy, the virus is steadily trickling into a once-unforeseen population - seniors.
HIV victim turned AIDS activist, Shaw, in partnership with several New York City-based nonprofit and advocacy organizations, has helped spearhead a city-funded campaign to educate this growing population on the dangers and prevalence of HIV and AIDS. That campaign is intended to put HIV prevention information in the hallways of senior centers and condoms in the pockets of elderly New Yorkers.
Treating a New Population
When HIV was first diagnosed in 1981 it was a disease that supposedly infected only gay men. In fact, AIDS went by another acronym - GRID or gay-related immune deficiency.
As information spread, so did the disease. From intravenous drugs users to heterosexual women and men of all races, it is now readily acknowledged that HIV and AIDS do not discriminate.
But a HIV diagnosis is also no longer judgment day for many individuals. Drug cocktails introduced in the mid to late 1990s - which may require a daily regimen of a dozen pills - have kept those diagnosed with HIV in the 1980s healthy for decades. And while people with the virus continue to grow older and remain sexually active, they may expose other older New Yorkers to the virus, said AIDS advocates.
According to the city's Department of Health and Mental Hygiene, nearly 100,000 individuals are living with HIV or AIDS in New York City. As of July 2006, more than 31 percent of them were over the age of 50 and 70 percent were over the age of 40.
New York City has long been a hub for populations infected with HIV â€“ the city has the highest rate in the country â€“ and the aging population here might foreshadow a national trend.
According to the Centers for Disease Control and Prevention, those over 50 account for 12.5 percent of the approximately million individuals living with AIDS in the United States. That same age bracket comprised an estimated 15 percent of the new cases of HIV from 33 states in 2005.
From 1991 to 1996, new AIDS cases in the over 50-population increased by 22 percent nationally, according to a report by the City Council's committees on health, aging and senior centers. During that same time period, new cases for those between 13 and 49 years old increased by 9 percent.
A report released by the New York City-based AIDS Community Research Initiative of America, said it is "probable" that the majority of people living with AIDS could reach 50 years old within the next decade. That could complicate HIV education, access to healthcare and how health care providers and city officials address, prevent and mange the virus.
Safe Sex for Seniors
Shaw was 47 years old when he learned he had contracted HIV. Because he is not gay and information on contracting HIV from intravenous drug use â€“ which was how Shaw was infected â€“ was not widespread, he figured this growing pandemic couldn't affect him.
"I had to reeducate myself about this thing that was ravaging my body," Shaw said of his diagnosis's aftermath. "Back in 1988, there was little if any information in the community, specifically to reach older adults. The little knowledge I had then was it affected gay white men, it affected homosexuals, and it affected folks from Africa. My not being any of those, I said, 'Well, I don't have anything to worry about.' Or so I thought."
That same indifference is seen now in senior populations. Older people do not realize they too can contract HIV, Shaw said.
Although seniors remain sexually active as they age, menopause and a lack of education make using condoms a rarity, advocates said. Even talking about sex is often taboo in senior centers and specialized geriatric medical offices.
"You have to get seniors to start comfortably talking about sex," said Bobbie Sackman, director of public policy at the Council of Senior Centers and Services. "This population has never been targeted for education. â€¦ Seniors have sex."
HIV status, one survey found, does not deter seniors from sexual activity. A survey of 914 New York City residents with HIV or AIDS over the age of 50 conducted by the AIDS Community Research Initiative of America found that half were sexually active and, of them, more than 30 percent had sex with individuals regardless of their HIV status.
Treating and Diagnosing the Elderly with HIV
While treating AIDS at any age is difficult, it can be more difficult for those growing old with HIV or contracting it in later years. Dr. Monica Sweeney, assistant commissioner of the Bureau of HIV/AIDS Prevention and Control at the Department of Health and Mental Hygiene, said that, as the body grows older, the kidneys become less likely to handle medication. Other HIV prescriptions can increase the risk of heart disease â€“ a dangerous side effect for those over 50.
"Just becoming a senior makes all of your treatments more difficult because of the natural and biological effects of aging," said Sweeney.
According to ACRIA's report, little research has been conducted on the effects of HIV on other ailments, like cardiovascular disease or osteoporosis, typically associated with seniors. But what several studies have shown, according to the report, is that seniors have a vastly higher chance of living with HIV if they are treated with antiretroviral drugs. If untreated, older individuals are twice as likely to die from the virus than younger populations.
Many of the symptoms associated with HIV or AIDS are also associated with aging â€“ such as weight loss, memory loss, fatigue and shortness of breath. As a result, some seniors wither away from AIDS undiagnosed, assuming their health problems are from aging. But in the meantime, they may still be having unprotected sex.
"You can see the way the virus is ravaging the bodies of the elderly, yet they are walking around with it not knowing," said Shaw. "And not realizing that that ache or that loss of appetite or that dementia is an AIDS symptom, not an aging symptom."
Elderly individuals diagnosed with HIV are also at risk of more than the usual physical ailments. Daniel Tietz, executive director of the AIDS Community Research Initiative of America, said seniors who have HIV or AIDS are twice as likely to live alone as other New Yorkers in the same age bracket. The loneliness that may accompany that statistic could increase the risk of suffering from the mental side effects of the virus.
Treating seniors like the rest of the "at risk" population is part of addressing the problem. Overall, Sweeney said, it is misguided to single out any constituency, color or ethnicity - everyone needs to get tested.
What the City is Doing
Following a joint hearing by the aging and health committees and the senior centers subcommittee of the City Council last year, Councilmember Maria del Carmen Arroyo and AIDS advocates established a working group to come up with a program aimed at seniors.
"Aging in it of itself is a challenge," said Arroyo. "Complicate that with HIV and AIDS and the health care provider and community organizations have a greater challenge to meet the needs."
With a $1 million budget appropriation, several New York City groups are drafting a training curriculum for senior service providers, including senior center employees and medical professionals, that will direct them on how to educate seniors about safe sex, AIDS and HIV. The funding will also go toward educational materials for seniors and intensified programs in the council districts where HIV and AIDS are most prevalent and seniors are most at risk.
The program is the first in the country, advocates said, and the first in the city to target seniors exclusively for HIV and AIDS education. Although the health department, officials said, has distributed literature and conducted prevention programs citywide, this program would address the hesitations and apprehension of the elderly to talk about sex - let alone safe sex.
By next year, advocates said, every council district would have held at least a training session for senior service providers.
In addition to the City Council initiative, the city's Department of Aging has also recently offered free HIV tests and distributed condoms at senior centers.
Getting Gray and Being OK
As medical breakthroughs occur and those with HIV continue to live longer, Shaw and advocates agree education and prevention will become increasingly important.
While he hopes for a vaccine in his lifetime, until then Shaw will continue to visit senior centers and churches to shed light on HIV and AIDS for seniors. With two decades down since his diagnosis, he has a lifetime of advocacy and education to go.
"Education, education, education," he said. "And as often as possible."