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Who Still Dies of AIDS, and Why

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From left to right: William “Violet” Silver, Sylvia Ocasio, and Mel Cheren.  

“If you do the mathematics,” Frieden says, “HAART became available in 1996. If you were of age before then, sexually active, and you saw a lot of people dying or sick or disfigured from AIDS, maybe you’re more careful than if you came of age after 1996 and didn’t see that. When we’ve done focus groups, what young men have told us is that the only thing they hear about HIV these days is that if you get it, you can climb mountains, like Magic Johnson. Certainly it’s true that the treatment for HIV is very effective and it’s possible to live a long and productive life with an HIV infection. It’s also true that it remains an incurable infection. That the treatment is very arduous and sometimes unsuccessful. It remains a disease often fatal, and frequently disabling.”

At the moment, some 100,000 New Yorkers are infected with the HIV virus, and AIDS remains the third leading cause of death in men under 65, exceeded only by heart disease and cancer. The question of who will die from AIDS in the HAART era—or who dies with an HIV infection but not technically from AIDS—and what kills them is worth asking now that such deaths have become relatively infrequent.

Frieden’s Department of Health and Mental Hygiene tried to answer this question with a study it published in the summer of 2006. The newsworthy conclusions were that deaths among New Yorkers with AIDS were still dropping, thanks to HAART, and that one in four of these individuals was now living long enough to die of the same chronic diseases that are likely to kill the uninfected—particularly cancer or heart disease—although most of these non-HIV-related deaths were from the side effects of drug abuse. HIV-related illnesses were still responsible for the remaining three out of four deaths. Or at least “HIV disease,” in these cases, was recorded as a cause of death on the death certificates.

What the Health Department study couldn’t do is say precisely what these HIV-related deaths were. For the answer to this question, you have to go to physicians who specialize in treating HIV-infected patients. Michael Mullen, clinical director of infectious diseases at Mount Sinai School of Medicine, for instance, says the best way to think about AIDS deaths is to divide HIV-infected individuals into three groups.

“If it’s 1988, 1989,” says one doctor, “and I have a patient with HIV disease and hypertension, he’s not going to live long enough to die of hypertension. I want to treat the disease.”

The bulk of these deaths occur within the first group, those who either never started HAART to begin with or didn’t stay on it once they did. For these patients, “it might as well still be the eighties,” says Mullen, and they die from the same AIDS-defining illnesses that were the common causes of death twenty years ago—pneumocystis pneumonia, central-nervous-system opportunistic infections (such as toxoplasmosis), lymphoma, Kaposi’s sarcoma, etc.

A large proportion of these victims are indigent; many are intravenous-drug users—IVDUs, as they’re known in the official jargon, accounted for 21 percent of HIV-positive New Yorkers in 2006, but, as noted above, 38.5 percent of the city’s AIDS deaths. The virus is no more aggressive or virulent in these cases. Rather, these are the people who either don’t or can’t do what it takes to fight it. “These individuals are repeatedly admitted to the hospital,” says Mullen, “sometimes for opportunistic infections, sometimes for drug-related issues, often for HIV-related lymphomas and malignancies. They will not take the medication, nine times out of ten, because of drug use.” Often these individuals are co-infected with hepatitis, which increases the risk that the more toxic side effects of the anti-retroviral drugs will lead to permanent liver or kidney damage.

By far the highest death rates in this group are in what the authorities now refer to as concurrent HIV/AIDS diagnoses. These patients never get diagnosed with HIV infection until they already have active AIDS. (Cheren, because of his age and his AIDS awareness, is an extreme case.) These constituted more than a quarter of the 3,745 new cases of HIV infections diagnosed in New York in 2006. “Those people have never been tested before,” says Mullen. “Believe it or not, people like this still exist.” Typically, they’ve had the infection for ten years—the average time between HIV infection and the emergence of AIDS—but won’t know it or acknowledge it until admitted to the emergency room with pneumonia or some other opportunistic infection. These individuals are twice as likely to die in the three to four years after their diagnosis as someone who was just diagnosed with HIV alone. Half of these deaths will occur in the first four months after diagnosis, often from whatever AIDS-related ailment led them to the emergency room in the first place.

It’s because of these concurrent HIV/AIDS diagnoses that the Centers for Disease Control and Prevention and the city’s Department of Health and Mental Hygiene have been lobbying for HIV tests to be given routinely to anyone who visits an emergency room for any reason. In one recent study from South Carolina, almost three out of four of those people with concurrent HIV/AIDS diagnoses had visited a medical facility after their infection and prior to getting their blood tested for the virus—averaging six visits each before they were finally tested and diagnosed. “By remaining untested during their routine contacts with the health-care system,” said Frieden, in testimony to the New York State Assembly Committee on Health, “they have missed the high-quality treatment that could improve their health and extend their lives. Many may have unknowingly infected their partners—and these partners may not learn that they are infected until they too are sick with AIDS. And so this cycle of death continues.”


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