That’s a position advocated by many activists. Dr. Joseph Sonnabend, the founding force behind AMFAR and a number of other agencies, is especially incensed by a proposal, currently under consideration by the Centers for Disease Control and Prevention, to make the drugs available to people who are HIV-negative on the theory that they will help prevent transmission. “It’s all quite bizarre, and I wonder what is driving it,” he wrote in an e-mail from his London home.
It is true that the clinical picture of life with treated HIV disease is only now beginning to come into focus. A study presented at a conference in February in Montreal showed that otherwise healthy people on HIV medications at about 56 years of age had immune systems comparable to HIV-negative subjects whose median age is 88. Perhaps as a result, many diseases that typically attack the very old are striking younger HIV-positive people disproportionately, like diseases of the liver, kidney, heart, and veins. One study found that 55-year-olds who are HIV-positive have all the telltale signs of late-life frailty—muscle loss, fatigue, and rheumatological disorders.
The newest data show that middle-aged patients have dramatically increased rates of bone loss and fractures for their age. Some 60 percent of HIV-positive men in their forties have osteoporosis or its predecessor condition, a problem that typically isn’t diagnosed in men until well into their eighties. Jules Levin, founder and executive director of the New York–based National AIDS Treatment Advocacy Project, only found out about this two years ago, when he stumbled and shattered his wrist. He was 57 at the time and in exceptionally good shape, other than his undiagnosed osteoporosis. “This is what opened my eyes to all of this stuff,” he says. “Aging is the No. 1 problem in HIV today.”
Researchers are convinced that bone loss, perhaps more clearly than the other conditions, is a direct side effect of the medications, while the brain issues are more likely to be related to HIV itself. Further puzzling to researchers is why some patients don’t experience any problems at all, even after living with HIV for decades. Dr. Justin McArthur at Johns Hopkins says genetic factors may be at play. That might explain the case of two Brooklyn-based neuroscientists I met recently, both of whom tested positive 22 years ago, a few months after they started dating. They asked me to call them by their middle names. Joseph has had almost no bumps in the road. But Donald’s path through HIV has been extremely tumultuous. Though his body responded well to the drugs, over the years he has nonetheless developed AIDS-related pneumonias, skin cancer, seizures, heart problems, and systemic infections ordinary patients might have rebuffed. He managed to keep a high-powered career in research and even returned to school to study law recently. But with weeks left before getting his law degree this summer, he developed a case of HIV encephalitis that left him in a state of disorientation. During a recent visit to their home, he was unsteady on his feet and sometimes unable to answer simple questions.
“Do you know what today’s date is?” his husband asked.
Donald looked at him blankly, then gave a small, nervous laugh.
Joseph tried another tack. “What year is it?”
“That, I got this morning,” Donald answered quickly. Maybe so, but now it wasn’t so easy. He glanced at the corners of the ceiling. It finally came to him. “Two thousand and nine,” he said. “Because I was supposed to graduate this year.”
It was hard to imagine, but just weeks earlier this man was about to earn a law degree. I asked him, “Have you lost your legal education? Is that still there?”
He smiled. “Get back to me on that one,” he said. Then tears brimmed his eyes, and he let on for the first time that, like the character in Flowers for Algernon, he was a conscious witness to his own decline. “I’m fearful that I’m going to be a janitor someplace,” he said.
“He had his Ph.D. at 25,” Joseph told me. “His thesis work—it’s in nearly every new neuroscience textbook in the country.”
“True,” Donald agreed. “Now what am I doing?”
Brain impairments are the unexpected new minefield among HIV-positive people who have been on protease inhibitors. According to research presented this summer at the international AIDS conference in Cape Town, South Africa, 52 percent of all Americans infected with HIV (the mean age of which is just 43) suffer from some type of cognitive impairment—mostly mild or moderate dementias, but which nonetheless can impede one’s ability to function on a day-to-day basis. This is a staggering finding. Among people without HIV, around 10 percent of individuals under 60 experience such problems.