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Oral History Chronicles the Fight Against AIDS

Project details early efforts of those on the front lines

SUNDAY, Aug. 12, 2001 (HealthDayNews) -- In the early 1980s, before AIDS became the disease that would devastate millions of lives and radically transform cultural beliefs and behaviors, it was still a mysterious fatal illness that had scientists baffled -- and enormously concerned.

How the medical community first responded to the ominous outbreak of the disease is described by the scientists themselves in an oral history titled "In Their Own Words: NIH Researchers Recall the Early Years of AIDS."

The project, created by the National Institutes of Health, features the stories of physicians, scientists, nurses and administrators who were on the front lines in those early efforts to identify and understand the disease.

Audio clips on the agency's Web site tell of scientists' first encounters with people with AIDS, the discovery of HIV, the search for treatments and other aspects of AIDS research at the government institute.

In one clip, Dr. Thomas Waldmann describes the first chilling encounter with the illness.

"We received a referral to the NIH, in June of 1981, of a patient D who, as we shall discuss, turned out to be the first patient seen at NIH with AIDS," Waldmann says.

Another researcher, Dr. Anthony S. Fauci, describes how the urgency of the situation became clear as the number AIDS cases escalated.

"I made the decision that we would have to switch over to research on this disease because, as every month went by, I became more convinced that we were dealing with something that was going to be a disaster for society," Fauci relates.

Project creator Victoria A. Harden, chief historian at NIH, says the undertaking was prompted by a commitment to documenting the turn of events at what was ground zero for AIDS research in the world.

"A lot has been written about AIDS from the perspectives of patients, caregivers and of others, but no one was talking about the intellectual process of how scientists and physicians at that moment in time thought about a new disease and how they used their knowledge to formulate some sort of response," Harden says.

"It seemed to me that, as a historian of science working in this agency, I would just be derelict if I didn't try to capture this," she says. "We all die eventually, and someone needs to preserve what happens for future generations."

In addition to capturing the stories for prosperity, Harden says she wanted to make public record of the fact that scientists were doing all they could from the earliest days of the detection of AIDS -- contrary to some critics' arguments.

"The level of basic knowledge that exists in any point of time conditions how people dealing with a new disease think about that disease," she says. "And I think these oral histories show that, given the level of knowledge they had in 1981, researchers worked as hard as they possibly could to figure out what was going on with this disease and what they could do to stop it."

David Munar, associate director of the AIDS Foundation of Chicago, says lingering resentment still exists in the AIDS community over how the disease was dealt with by society in its early days, but that researchers are not necessarily to blame.

"The early experiences for people in communities that were hard hit by AIDS -- from about 1981 through 1983 -- were that everyone around them was dying, and there are accounts of people who lost hundreds of friends," Munar recalls.

"They felt enormously stigmatized by the health-care community," he says. "And, in the face of the disaster, there seemed to be silence from local officials, from public health officials and from state and federal officials. And there was the sense that the response was too slow."

"But the criticism isn't necessarily on the speed of the research," Munar adds. "I think our government's researchers can take a lot of credit for helping to identify HIV and moving forcefully to figure out how to slow its progression."

What To Do

For the complete oral history project, visit the Web site of the National Institutes of Health.

Or, for more information on AIDS research and developments, go to the San Francisco AIDS Foundation or the National Center for HIV, STD and TB Prevention.

SOURCES: Interviews with Victoria A. Harden, Ph.D., chief historian, National Institutes of Health, Bethesda, Md.; David Munar, associate director, AIDS Foundation of Chicago, Chicago
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