The Living Daylights

Some people with HIV don't get sick for years and years and years. Their lives might contain the clues for the cure.

He says that being HIV-positive has not been without its benefits -- "in just discovering the joy in day-to-day living, seeing the wonder of life in everything around me. Even when I'm in a bad state of mind, just looking at that as an aspect of life. I guess it's just made me amazed."

And for those who are just finding out that they're HIV-positive, Anderson says, he has this advice: "In my position I would say don't give into the doomsayers, and listen to your own inner being. That's where I think you'll find the clearest guidance."

In 1982, Paul O'Malley, a researcher at the Department of Public Health, endured the death of one of his closest friends from the new, as-yet-unnamed disease that was making paths through San Francisco's gay community. Mourning his friend, O'Malley remembered something: that the man had taken part in the hepatitis B study the Health Department ran for two years, from 1978 to 1980, out of the old City Clinic. O'Malley had worked on the hep B study, which had recruited 6,705 gay and bisexual men to test the efficacy of a new hepatitis vaccine.

"It put a light on in my head," O'Malley remembers.
He started to cross-check the names of men who were ill with what would be called AIDS against the names of the hep B participants. Nearly half of the names on the two lists were the same. So, as Randy Shilts wrote in And the Band Played On, O'Malley thought there might be some kind of connection between the hep B cohort -- that is, the group of men who had taken part in the research -- and the emerging epidemic.

"I thought maybe we should look at this cohort for this disease," O'Malley says now. He thought the interviews compiled for the hep B study and the stored blood might come in handy to help scientists try to figure out what was going on. And O'Malley was right. In fact, the stored blood from the vaccine study would provide an invaluable window onto the very beginning of the epidemic in San Francisco, as well as the basis for the nation's longest-running study of people living with HIV.

In 1984, the Health Department received money from the Centers for Disease Control (CDC) to begin studying the hep B cohort. From 1984 to 1989, O'Malley and others tried to contact all of the men for permission to test their stored blood for HIV. "We made at least one valiant attempt" with each person, O'Malley says. As the permissions started rolling in, so did the results: Four to 5 percent of the 1978 blood tested positive for HIV; 12 percent of the 1979 blood tested positive; 25 percent of the 1980 blood tested positive. By 1984, when the Health Department began testing the men of the cohort anew, 67 percent were positive. And by December 1989, "75 percent of cohort members were infected with HIV, and 1479 were reported to have developed AIDS," according to a 1990 report on the study published in the British Medical Journal.

But in addition to providing a glimpse into HIV's early years in San Francisco, the stored blood in the Clinic Study added something equally valuable to researchers: a definite date of seroconversion, from HIV-negative to HIV-positive, for some 600 men. Pinpointing the seroconversion dates of the Clinic Study's participants has allowed researchers to accurately track the men's progression from HIV seropositivity to AIDS.

In 1985, it was believed that 90 percent of people who tested positive for HIV would be diagnosed with AIDS within a decade, O'Malley remembers. But by 1987, that belief had changed.

"Around 10 years ago this time, we realized there were people progressing at different rates," O'Malley says. "And there did seem to be this subgroup that didn't progress at all."

What the Clinic Study has shown is this: The median time between seroconversion and a diagnosis of AIDS is 10 years. That is, 51 percent of people in the study have been diagnosed with an AIDS-related illness after 10 years of infection. After 15 years of infection, 79 percent develop AIDS. And similar studies around the country have shown similar results. At the National Institute of Allergy and Infectious Diseases (NIAID), the branch of the National Institutes of Health where AIDS is researched, a study estimates that after 20 years of HIV infection, some 11 percent of people will remain asymptomatic.

But not, necessarily, undamaged. In this emerging area of science, the language is still changing and imprecise, but when it comes to HIV there are some newly invented general categories to keep in mind. There are rapid progressors, who move from HIV to AIDS within 5 years; progressors, who move along the arc of disease at the median rate of 10 years; long-term survivors, or slow progressors, who can remain AIDS-free for more than a decade but who suffer damage to their immunological systems; and long-term nonprogressors, also called healthy long-term positives, who appear to show no damage to their immune systems despite years of living with HIV.

"We make up these terms," says Lewis Schrager, chief of the epidemiologic branch of the basic science division at NIAID. "With the long-term survivors we're just saying that means anybody who goes 10 years or more without a clinical diagnosis of AIDS. It doesn't mean they're a long-term nonprogressor," Schrager says. "Even though 20 years out we're saying 12 percent may be AIDS-free, the billion-dollar question is, 'OK, fine, how many of those are still immunologically intact?' The answer is probably going to be very, very few."

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