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Another Kind of AIDS Crisis

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In contrast, others show deep disturbances of the white matter of their brains, the deep connective nerve tissue responsible for motor coordination and executive function—the region that allows us to make a plan and to follow through on it. A high-level executive assistant I’ll call Martina—diagnosed HIV-positive 22 years ago—tells me she has finally gone on disability recently, unable to juggle her own pared-down schedule, much less someone else’s. An MRI revealed significant changes in her white matter, which are likely irreversible—a possibility that devastates her. “I feel awful,” she says. “Lately my husband has been saying, ‘You know what? I think I need to take over the bills.’ For him to say that, I must be getting worse.”

For those trying to hold down jobs, even minor cognitive disturbances can change lives dramatically, according to experts and patients alike. And studies show patients with minor deficits have trouble remembering to take their medications, which can lead to more serious problems like drug resistance and even early death. “We’re not talking about people who look like advanced Alzheimer’s disease,” says Dr. Grant, the lead CHARTER researcher. “But nevertheless they can have an effect on everyday functioning, which can be serious.” Plus, as Dr. Simpson puts it, “it’s scary as hell.”

That describes a former Balanchine dancer named Kenn, who, though battling HIV for 25 years, had been able to remake his career several times over until recently, when he lost his ability to process information reliably. “You realize you can’t read and you used to read,” he tells me. “That’s the hardest part, when you cognitively know you’re losing yourself.” There are perhaps 145,000 people in New York living with HIV. That’s the second-highest rate in the country according to the CDC, and one of the densest AIDS subpopulations in the developed world. And as people live longer with the disease, the number gets larger every day, fueled in part by the fact that HIV is spreading here at three times the national rate. The average age is marching upward—now at 46, they’re nearly a generation older than the epidemic’s first wave. This is true across the country as well. In just a few years, half of all Americans with HIV will be 50 or over, according to projections.”

It is surprising that this is generating so little attention. Among activists, Jules Levin, from the National AIDS Treatment Advocacy Project, has been alone in calling for more resources to study aging and AIDS, while others have turned their attention—and money—to fighting the plague in Africa and elsewhere. “Issues of aging with HIV, compared to that, is like a subtitle. It has no political thrust to it at all,” Levin says. “I’m not saying we should ignore the rest of the world, but domestic AIDS has been totally neglected, because we’re sending all the money overseas.”

In the meantime, the frontline doctors I spoke to are crying out for help. “This needs urgent, comprehensive attention,” says Paul Bellman, a prominent HIV doctor in the Village who has noticed a significant increase in such patients in the past six months. One called recently to say he risked losing his demanding job because of a sudden inability to recall simple tasks. “I wish I could say, ‘I’m so glad you called me, because this is what’s causing it.’ But I don’t have the answers. Nobody does.”


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