Stephen Jerrome was one of the first men to enter the Mulitcenter AIDS Cohort Study 25 years ago. More than 6,000 men have participated in the study, which has led to many discoveries about HIV and AIDS.
A landmark AIDS study is being celebrated this weekend in Los Angeles for the many discoveries it has brought to people infected with HIV.
A small number of surviving study participants will gather on Sunday to discuss the big impact that the Multicenter AIDS Cohort Study (MACS) has had on their lives over the past 25 years.
More than 6,000 gay and bisexual men have participated in the MACS. Dr. Roger Detels, professor of epidemiology at UCLA and the director of MACS in Los Angeles says they'd been trying to define the disorder since 1981, but very little was known about the disease. Then the National Institutes of Health providing funding for the MACS study.
"At the time we started the MACS there was no test for the virus and there was no recognition that in fact there was a virus origin," Detels says.
It was about the same time that both U.S. and French scientists announced that they had isolated a virus which they believed were causing the mysterious illness killing gay men.
Volunteers Stuck With It
Participation in the MACS study required a strong commitment. Men were required to submit to two very thorough physical exams twice a year. Included were spinal taps and neurological exams.
They were also quizzed in detail about sexual practices, symptoms and medical visits. Unlike many studies where people drop out for all kinds of reasons, most of these men stayed in the study until they died.
For Stephen Jerrome, now 58, the intensive exams were the hardest part of what he had to do.
"It was hair-raising because one rarely does a thorough inventory of one's sex practices," Jerrome says, "They ask you for numbers, how many times did you do what."
There's a hint of anger in his voice when he explains why he volunteered.
"Every one was talking about the gay cancer," he says. "Three years had gone by with America's young people dying while [President] Reagan's people made a policy of not doing anything. One felt powerless."
Jerrome saw an ad in a local gay newspaper and signed up. "It's been privilege to be part of the study because I felt that I could add my little bit to help."
Among the many discoveries that can be attributed to MACS, include basics like how the virus was spreading, how long it took people to get AIDS and exactly how the immune system failed to protect the body from HIV. It also helped researchers figure how big the epidemic was, particularly in the gay community.
The data also led to the development of the protease inhibtor drugs that have been so successful in keeping people alive, though there are still significant numbers of people in the U.S. who die from AIDS each year, despite treatment.
Perhaps the biggest discovery, Detels says, was that some men were not getting sick.
"My colleagues and I observed that there were many men who had many, many partners, and they never became infected," he says.
They couldn't figure it out for a long time. But thanks to all the tests the volunteers underwent, we now know that a small percentage of people have genes that protect them from getting HIV.
And that, Detels says, could someday lead to a vaccine that will protect all people from HIV and AIDS.