7,000 Gay Men Have Helped Study AIDS in Past 25 Years

(Nikki Kahn - Nikki Kahn)
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By Lori Aratani
Washington Post Staff Writer
Tuesday, September 29, 2009

It was the early 1980s, and an unknown disease was spreading throughout the gay community.

"We were all scared back then," said Walter Smalling, a photographer who lives in the District. "In the beginning, it was a death sentence. Nothing could be done."

So when a friend mentioned that researchers with the National Institute of Health's National Institute of Allergy and Infectious Diseases (NIAID) were seeking gay men to participate in an ongoing study of the mystery ailment, Smalling and many of his friends volunteered.

Now, 25 years later, researchers with the Multicenter AIDS Study (MACS) say health and lifestyle information gathered from Smalling and thousands of other participants have helped track the evolution of AIDS and develop therapies to fight it.

"It has been extraordinary, the amount of knowledge [MACS] has provided for us," said NIAID's director, Anthony S. Fauci.

AIDS was so new at the time MACS was launched that there wasn't even a test for the virus. So little was known about the disease that some medical professionals refused to even touch AIDS patients, researchers recalled.

"Nobody knew where the answers were going to come from," said Joseph Margolick, a professor of molecular microbiology and immunology at Johns Hopkins Bloomberg School of Public Health and head of the Baltimore branch of the four-city study. (Other clinical sites are in Los Angeles, Chicago and Pittsburgh.) When he joined the study in the 1980s, Margolick was a young researcher with a keen interest in unraveling the mystery behind the seemingly invincible virus.

Since the study's inception in 1984, more than 7,000 men who have sex with men have been enrolled. Some of the participants have died; others have dropped out. Today, about 2,525 men are part of the study, with new participants recruited periodically.

MACS researchers have published more than 1,000 papers since the study began and have made critical discoveries that have helped identify what behaviors led to transmission of the virus. Researchers were also able to identify the median length of time between HIV infection and the development of AIDS.

"This long-standing, very large, very detailed repository of information is of great value to us," said Judith Auerbach, vice president for science and public policy for the San Francisco AIDS Foundation.

The study's focus -- on men who had sex with men -- was chosen largely because in those early and uncertain days, that was the only population in which large numbers of infections were occurring, Fauci said. Even then, however, scientists knew the disease was unlikely to be confined to a single segment of the population, he said. Though participation in the study remains limited to gay men, the information about the virus, how it is transmitted and how it progresses is applicable to others, Fauci said.

"Once infected, the evolution [of the disease] is essentially the same," he said.

For more than two decades, men in the four MACS cities have undergone twice-yearly physicals and answered in-depth questions about their lifestyles, with queries including how many partners they've had sex with and what precautions they took to avoid infection. In all, more than 8,500 pieces of information have been gathered from each participant. The data have been used by researchers to develop public health campaigns and to study the impact of the virus on the body and brain.

The study identifies three types of participants: those who do not have the HIV virus, those who are HIV-positive and those whose illness has progressed to AIDS. That allows researchers to draw comparisons among the groups. As the life span of participants has lengthened -- because of the availability of treatments for those who are infected -- researchers have been able to understand which physical and mental changes can be attributed to the virus rather than the normal aging process, and they have identified a kind of dementia specifically linked to HIV.

More than 20 years after he volunteered to be a part of the study, Smalling continues to go for his checkups.

"We felt a sense of mission," he said of himself and his fellow participants. "People made those appointments and kept them because they felt it was important."

Even though MACS research has led to such breakthroughs as the development of drugs that have helped infected people live longer, Smalling said he has lost more than 100 friends and acquaintances to AIDS. But he remains hopeful that his small contribution might lead to an even bigger breakthrough: a cure.

Comments: aratanil@washpost.com.

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