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Speaking Out for a Group Once Unheard Of: Aging With AIDS
Monday 10 November 2008
by: Karen Barrow, The New York Times

Robin Grinstead married a man who infected her with HIV. Antiviral medications have kept the virus under control, but she suffers side effects. (Photo: Perry Baker / The New York Times)

In the early 1990s, a diagnosis of AIDS was both a likely death sentence and a stigma. There were few treatment options, and many Americans were terrified of people infected with HIV.

Today, because of antiretroviral therapy and an array of drugs to treat both symptoms and side effects, AIDS has become a chronic condition to be managed, at least in the developed world. No longer is the face of AIDS emaciated and covered with lesions; Americans with the disease are stronger and healthier, their concerns fading from public view.

Myron Gold, 67, is one of them. In 1993, Mr. Gold was walking in Manhattan around Christmastime when he collapsed and was rushed to the emergency room. A social worker later walked in and loudly announced that he had HIV. Mr. Gold remembers the panic on the faces of the other patients. "When you said that in '93, you emptied the whole emergency room," he said. "Everyone ran for their lives."

Still, he was unfazed by his diagnosis. A former fashion designer who became an AIDS and gay-rights activist, he was already familiar with the disease and how it ravaged the body. He was given a prescription for AZT, the most common treatment at the time, and was told he had six months to live.

Fifteen years later, he is alive and relatively well - and that, paradoxically, is the problem. "This is not an illness about people in their 20s and teens," he said. "This is an illness about every age spectrum, from young to old."

In fact, 29 percent of those infected with HIV are over 50. And because the immune system deteriorates with age, the virus is all the more aggressive in older people. "I've been though 28 medicines," Mr. Gold said. His T cells - a component of the immune system, used as a marker of its health - "are low and they're not working."

Moreover, conditions that are often part of the aging process, like arthritis and dementia, can also be caused by HIV. So sorting through symptoms and effectively treating them - not to mention avoiding dangerous drug interactions - can be daunting.

There is also an alarming rate of infection among older Americans. In 2005, 15 percent of new HIV and AIDS diagnoses were among people over the age of 50, according to the Centers for Disease Control and Prevention. Yet government recommendations call for routine AIDS screening only up to age 64, omitting the elderly population.

"What about people 65 and older?" Mr. Gold asked. "They're having unprotected sex, they're using drugs." He says that is why he continues his advocacy for people with AIDS and for stronger prevention efforts. He sits on both the New York and national boards of the nonprofit group Association of HIV. Over 50, attends City Council meetings and has spoken before Congress and the New York Legislature.

Not long ago, he visited a senior center in the Canarsie section of Brooklyn to discuss safe sex practices. The women who attended, "all over 80 years old," he said later, rushed toward the table afterward for the free condoms he was distributing. ("They said to me, 'It's not for me, it's for my grandson,' " he said.)

Politicians don't like to talk about the spread of AIDS among the elderly, Mr. Gold says; nobody wants to hear about Grandma's sex life. But he adds that change cannot happen without open discussion. Mr. Gold is proud that he has long outlived his initial diagnosis, but AIDS has weakened his body and he now relies on an electric scooter to get to advocacy meetings and speaking events. Still, he keeps going.

"My work is what feeds me now," he said. "Call me in 10 years, I'll still be here."

Aunt Jennie got a phone call from the lab about her husband’s physical. The lab had misidentified two samples and did not know which was which; Medicare would not pay for a retest. “What should we do,” Aunt Jennie asked. “Well, he’s either got AIDS or Alzheimer’s, but we can’t tell which one because the samples were misidentified. I’d suggest that you take him across town and let him out. If he makes it back home, be sure and use a condom if you have sex with him.”