< AIDS Study Marks 25th Year

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Heard on All Things Considered

April 24, 2009 - MICHELE NORRIS, host:

Twenty-five years ago this week, scientists announced that they had isolated a virus that was killing young, gay men. It was called AIDS. Just 4,000 people in the U.S. had been infected, half had already died; most were gay men. Not much else was known. So the National Institutes of Health undertook a study. It followed thousands of gay men to get a better understanding of the growing epidemic.

NPR's Brenda Wilson has this report on the anniversary of the Multi Center AIDS Cohort Study, or MACS.

BRENDA WILSON: There are many things we might not have known if gay men, some of whom were infected, some not, had not volunteered for the MACS study. Dr. Roger Detels of UCLA remembers one discovery.

Dr. ROGER DETELS (Principal Investigator, UCLA Multi Center AIDS Cohort Study): There was tremendous concern that just being infected with HIV caused mental problems, and that people who were infected with HIV should not be bus drivers and so forth. We were able to identify the fact that mental deterioration does not begin until the immune system begins its final collapse.

WILSON: The study showed that that can take years. Scientists now know how long it takes untreated HIV to progress to AIDS, which helped them figure out how big the epidemic was, particularly in the gay community. They learned that infection with other viruses hastens the progression of the disease because repeated infections stress the immune system.

Over a thousand articles have been published based on what scientists learned from 6,000 gay men who were part of MACS in Baltimore, Pittsburgh, Chicago and Los Angeles.

Dr. DETELS: Sixteen hundred and thirty-seven came from Los Angeles. I remember the number.

WILSON: Detels, the director of MACS in L.A., was observing the effect of HIV and AIDS on gay men even before the study. It hasn't exactly been easy for the staff at MACS, who've been there for the long haul.

Dr. DETELS: And over the years, you develop friendships with the participants, and you have to watch them do things they shouldn't do and put them at risk. You have to watch them deteriorate. You have to watch them die.

WILSON: Volunteer Stephen Jerome remembers the beginning.

Mr. STEPHEN JEROME (Volunteer, UCLA Multi Center AIDS Cohort Study): Consider the times. The article in the New York Times about the gay cancer had come out in 1981, so three years had gone by with, you know, America's young men dying. And, well, Reagan's people made a policy of not doing anything. One felt powerless, in a way. So…

WILSON: He signed on.

Mr. JEROME: At the beginning of the…

(Soundbite of laughter)

Mr. JEROME: …it was sort of funny. We were instructed to bring in a little bag of stool sample. And so we all came in with our little, brown, paper bags, everybody sort of holding it at the end of their fingertips and handing it over, and going, ew(ph).

WILSON: The hardest part was sitting across from a staffer, answering very personal questions.

Mr. JEROME: The very first time I did it, it was hair-raising because one rarely does a thorough inventory of one's sexual practices. Suddenly, there's a kind of a truth-telling moment there. You know, because you're really - they asked you for numbers. You know, how many times did you do what?

WILSON: In the middle of a deadly epidemic, it motivated many men to change their behavior. But Roger Detels says MACS made a surprising discovery from some men who didn't change.

Dr. DETELS: They continued to have many, many different partners, and they didn't become infected.

WILSON: Scientists now know a minority of people can resist the virus. They have genetic mutations, and researchers hope that understanding the mechanism of the genes will lead to a vaccine. MACS has also led to medications against HIV, and the realization that many infected people can lead a pretty normal life.

Mr. JEROME: It's been a privilege to be part of the study because I felt that I could add my little bit to help.

WILSON: Now 58, Stephen Jerome, who quaked when he tested positive six years after the study began, sees AIDS as sweeping away the divisions of race, religion and sexual orientation, and even adding to his life.

Mr. JEROME: A life that is richer now than it's ever been. And it doesn't have to do with any kind of identity whatsoever. Everything folds in to who I am as a man, and I'm quite happy being the man that I am.

WILSON: Brenda Wilson, NPR News.

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