When Ed Shaw tested positive for HIV at age 47, it felt like a death sentence. It was 1988, and only one medication existed to combat the virus that causes AIDS.
"If you were diagnosed, you didn't have long to live," says Shaw, who sank into despair, resorting to drug and alcohol abuse. "I just went off on the deep end."
Five years later, after bouts with pneumonia and a heart attack, he started taking HIV medication and turned his life around. "I began to reeducate myself about the disease," he says. With that came a passion for informing anyone who would listen.
Now 69, the New York City resident has spent nearly two decades advocating for HIV/AIDS prevention. As chair of the all-volunteer New York Association on HIV Over 50, he brings together experts, older adults and intergenerational panels to discuss safe sex and ways to modify risky behaviors.
"He is an agent of change," says Vanessa Austin, a public health educator and HIV services community outreach and education coordinator at Harlem Hospital Center. "He can talk to any generation — from the very young to the very old — and get them to understand."
Targeting older adults
Aging with the virus has become the norm rather than the exception, thanks to the success of drug therapies that help to extend the life spans of people living with the virus. An estimated half of those living with HIV in the United States will be 50 or older by 2017, according to Yale Medical School. Each year, 31 percent of new HIV infections strike between the ages of 40 and 49, and 7 percent of new infections occur at age 50 and beyond.
"We have so many older adults out there carrying the virus, and they tend to have sex with their peers, so therefore, their peers are at risk," says Stephen Karpiak, research director at the New York-based AIDS Community Research Initiative of America.
Last October, the White House Office of National AIDS Policy called a meeting on HIV and aging. More than 1 million Americans have HIV — and that figure is mounting. While medical breakthroughs extend the life span, they underscore the need for preventive efforts aimed at older adults.
"Many of them feel that they're immune from getting the virus. They feel that it's a young person's disease," says Shaw, who attended the White House meeting and has traveled to Albany, N.Y., to educate state lawmakers about the issue.
Surprised by diagnosis
Shaw was shocked to discover he had HIV — after all, he didn't display any symptoms. When his cousin died from AIDS-related complications, Shaw decided to get tested. "We on occasion would share paraphernalia. That really scared me," he says of their intravenous drug use. And he admits, "I also was promiscuously active with the young ladies, so it could have been one of two ways of transmission."
Testing HIV-positive compelled him to abandon a job in which he excelled, laboring 12-hour days with boundless energy as the employment director at a placement agency. He was the one who opened the office each morning, and the one who closed it at night.
Then he spiraled downhill. Drinking and drugs consumed him. He caught pneumonia and landed in the hospital several times. The heart attack sidelined him next.
His T-cell count — an indicator of the immune system's strength to ward off infections — plummeted to an all-time low in 1993. "It sort of threw of me for a loop," Shaw says.
AIDS took over. That's when he heeded hospital social workers' advice to start medication and take better care of himself.
Shaw says older adults still tend to think HIV infection from heterosexual relations is improbable. Misconceptions lead people to take chances — and to engage in unprotected sex at an age when pregnancy is no longer a concern.
That's why in September, Shaw convened a panel of three generations — a teen, young adult and senior — along with experts to emphasize that HIV doesn't discriminate based on age, race, sexual orientation or economic status. Participants were HIV-positive or had witnessed a loved one endure the diagnosis.
The audience of older adults listened intently during a role-play between a heterosexual couple in condom negotiations. Their dialogue drove home how important it is to be safe rather than sorry.
Aside from hospital presentations, Shaw coordinates a monthly meeting of the New York Association on HIV Over 50. It's held at Gay Men's Health Crisis, a Manhattan-based service organization. The event is open to anyone regardless of sexual orientation or age.
"He's so dedicated to this cause," says Mary Ann Malone, who serves on the association's board and works as a case manager at Mount Sinai Hospital's HIV clinic in New York. And he's "always trying to motivate all of us to keep on top of things." Meanwhile, the suspenders-wearing activist finds time for recreation, she adds, citing his passion for chess. "He knows how to balance his life well."
Senior centers, churches and other community groups welcome Shaw. Whereas the topic of HIV/AIDS used to be taboo in religious circles, some houses of worship have formed ministries to cope with the crisis. Many adults living with the virus feel ostracized and isolated.
To them, Shaw is a symbol of inspiration and hope. And to others, his HIV prevention message resonates loud and clear. He believes changing attitudes and behaviors takes an intergenerational approach.
"Not only should we reach seniors," Shaw explains, "but I think it's important that the family composition be brought into play. There should be dialogue with the family — from the grandparents to grandchildren."
Susan Kreimer is a writer in New York.
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