AIDS ad the Research Subject
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Without the patient-volunteers who donate their bodies as living laboratories, the remarkable advances in our understanding and treatment of AIDS over the past 20 years would not have been possible
By Mona Gable
Photography by Andrea Marouk
Michael Sausser has suffered through more medical tests in the last seven years than most of us might endure in a lifetime. He walks slowly, slightly stooped, as though his knees ache or he is looking for a lost contact on the floor. In fact, his entire body hurts. Along with the two-dozen medications he swallows each day to manage his AIDS, Michael takes pills to quell the pain of neuropathy, a nerve condition that often makes his limbs feel like they're on fire.
LIKE TO BE A PART OF THE SOLUTION," EXPLAINS MICHAEL SAUSSER.
"THEY CAN COUNT ON ME."
Michael, who was diagnosed with HIV in 1988, is what one might call a clinical-trials junkie. Since 1994, when his dementia took hold and he found himself forgetting phone numbers and unable to walk more than a few feet at a time, he has participated in at least 15 AIDS-related studies at UCLA. Some have tested the efficacy of potential drugs, others have targeted such puzzles as how the virus damages the brain. During his years as a volunteer, Michael has had two hip replacements, been hospitalized for high fever, developed a heart condition and chronic constipation and nausea. He has undergone countless MRIs and spinal taps and questions about his sexual habits and bodily functions. Having faced death, he is inured to such invasions of his body and privacy. "There's very little that could happen to me that could degrade me," he says.
Since 1981, the year that UCLA physicians reported the world's first cases of AIDS after observing a strange new cancer in four young gay men, there have been staggering advances in our knowledge. And UCLA has been at the forefront of many of those developments, from the basic science to identify, categorize and understand the disease to the first clinical trials of AZT and other anti-HIV drugs. But none of it would have been possible without the involvement of patients like Michael æ volunteers who have donated their bodies to science as living laboratories in which researchers may test their theories and try out new therapies, who willingly submit to being prodded and poked and to swallowing toxic drugs they know may never cure them.
"It's an extraordinary sacrifice," says Roger Detels, who heads the longest-running study in the country examining the natural history of AIDS. Beginning 20 years ago with a handful of anonymous gay UCLA students, the Multicenter AIDS Cohort Study now involves more than 1,600 participan
"The most important people are the volunteers," Detels says. "They have to be reminded of their own vulnerability. They know when things are going bad, yet they keep coming back."ts at four universities.
Their commitment has yielded incredible findings about the infection and transmission of HIV. Among them: that some gay men who have unprotected sex with multiple partners don't get infected; that anal intercourse is the major risk factor in depleting immune cells and developing AIDS; that a receptor on