When David Simpson was working at Mount Sinai Medical Center as a young neurologist in 1984, the neuro-AIDS program occupied a dark warren of tiny rooms in the complex’s basement. It was a place overwhelmed by plague, a final stop on a doomed journey. “People came in with seizures or paralyzed on half their body. People came in in comas. Men were screaming—I have videotapes of this,” says Simpson, the program’s director. “Bedbound, incontinent, couldn’t sleep. They could be dead in a number of days.”
Those are memories of a distant past. When the drugs arrived in 1996, they ended this kind of pitiless death and put many AIDS wards out of business. The famous St. Vincent’s seventh-floor ward now houses offices for the orthopedic department. The sixth floor at New York Downtown, the eleventh floor at Beth Israel, the seventeenth floor at New York-Cornell, whole wings at Lenox Hill, Bellevue, and Harlem hospitals—those dire corridors where, in a little over ten years, more than 60,000 New Yorkers drew their last painful breaths—have been cleared out and repurposed. “So much trauma, there was so much history,” says Victoria Sharp, who directed AIDS programs at Beth Israel, St. Clare’s, and St. Luke’s-Roosevelt, “and they’re gone.” Simpson stayed in business by expanding into other areas of neurological research (using Botox to help treat stroke paralysis, for one).
But in the last year or so, doctors have been troubled by the emergence of a new kind of AIDS story. Take the case of James L., 46. After testing positive in 2001, he went on a drug cocktail and life returned to normal with little effort. His exercise regime only intensified. He even went back to school for a master’s degree. At work, he rose to a six-figure position at a telecommunications firm, and his personal life flourished. He was, he told me, “a regular gay male.”
Then, halfway through a screening of the film Syriana in his local cinema, he had a disturbing revelation. “He sat through about half the movie before he realized suddenly that he had seen the same movie two weeks earlier,” says Simpson. Indeed, James ultimately pieced together evidence suggesting he’d seen the film on three separate occasions. The same problem haunted him at work. Where he had once earned praise for his organizational skills, he now drew warnings. He seemed incapable of recalling recent events with any reliability. “It’s an Alzheimer’s-like state,” he explains. Earlier this year, Simpson diagnosed him with HIV-associated cognitive motor disorder.
James is on medical disability today, acutely aware of what he is missing. “I want more out of life,” he told me one afternoon recently. “I spent a lot of money on my education, and this barrier might keep me from enjoying my fifties and sixties. But I’m much more concerned about my financials than my own health at the moment. People like me in the business world? I don’t believe they go together well.”
Some fifteen years into the era of protease inhibitors and drug cocktails, doctors are realizing that the miracles the drugs promised are not necessarily a lasting solution to the disease. Most news accounts today call HIV a chronic, manageable disease. But patients who contracted the virus just a few years back are showing signs of what’s being called premature or accelerated aging. Early senility turns out to be an increasingly common problem, though not nearly as extreme as James’s in every case. One large-scale multi-city study released its latest findings this summer that over half of the HIV-positive population is suffering some form of cognitive impairment. Doctors are also reporting a constellation of ailments in middle-aged patients that are more typically seen at geriatric practices, in patients 80 and older. They range from bone loss to organ failure to arthritis. Making matters worse, HIV patients are registering higher rates of insulin resistance and cholesterol imbalances, and they suffer elevated rates of melanoma and kidney cancers and seven times the rate of other non-HIV-related cancers.
Whether this is a result of the drugs or the disease itself, or some combination, is still an open question and certainly varies from patient to patient and condition to condition. Either way, it is now clear that even patients who respond well to medications by today’s standards are not out of the woods. Current life-expectancy charts show that people on HIV medications could live twenty fewer years on average than the general population. “It’s spooky,” says Mark Harrington, who heads Treatment Action Group, a New York–based HIV think tank. “It seems like the virus keeps finding new tricks to throw at us, and we’re just all left behind going, What’s going on?”