The Chicago Tribune - May 7, 2000
Sue Ellen Christian.

The inclusion of AIDS dissidents is designed to set the stage for an open and rigorous discussion that is not limited, Mbeki says, by people who argue "that the only freedom we have is to agree with what they decree to be established scientific truths."

As Mbeki's controversial attitude shows, so-called "scientific truths," regardless of veracity, are often what the public decides they are.

Once science leaves the narrow construct of the laboratory and hits the streets, it runs through a complex filter of culture and society, and is forever changed. When released into homes and villages, science is scrutinized against the yardstick of common sense, not the measure of peer review. It is weighed against current mores and personal history and the experiences of relatives and friends. It is shaped by the science that has come before it, and by the politics of distrust.

"Health and disease are deeply embedded in the fabric of any society, so there is always a cultural element about how people look at health and ideas and information about health and disease from various sources. There is often a political dimension," said Daniel Todes,an associate professor in the history of science, medicine and technology at the Johns Hopkins School of Medicine.

"AIDS is looked at in Africa in a racial way and through the legacy of colonialism," Todes said. "Mbeki is looking at this through a certain lens; it is hard to separate the narrow medical aspect from the broader social and political aspect."

Under the Russian czars, notes Todes, there was great distrust of the government by the peasantry. So when vaccination campaigns were conducted, peasants floated rumors that the government was trying to poison them, and fewer were vaccinated.

In early America, venereal disease was viewed through the distrusting eyes of American Indians as a disease brought by white settlers who then offered mercury treatments for it--which the Indians rejected outright.

The modern public's acceptance of medical science isn't helped by the fact that a new study seems to come out every week, sometimes refuting a study that came out the week before. Just weeks ago, in the latest U-turn, a new report stated that, contrary to medical advice given in the past,taking substantial amounts of vitamin C is not only unnecessary but perhaps even dangerous.

Steven Epstein, author of "Impure Science: AIDS, Activism and the Politics of Knowledge" and a sociology professor at the University of California, San Diego, says people often don't realize that most fields of science are riddled with uncertainty.

The fault lies partially with scientists, many of whom, Epstein said, don't like to express uncertainties.

"It becomes a vicious cycle; [scientists] fuel expectations and then people feel let down when they discover scientists don't know all the answers. One week eating fiber is good and the next week they say it's bad. People throw up their hands and say `what are we supposed to believe?"' Epstein said.

In his 40 years of practice, Dr. Ulrich Danckers saw medical procedures that were once widely practiced but then abandoned as unsafe, such as gastric freezing to treat stomach ulcers.

"Misinformation or information wrongly applied has always been a scourge of medicine as far as you could can go back," said Danckers, a retired Chicago radiologist, and co-author of a new book, "A Compendium of the Early History of Chicago to the Year 1835 When the Indians Left."

"One hundred years from now, physicians will look back at what we did now and shake their heads and say, `How could they ever do that?"' Danckers said.

Closely related to public discomfort with the uncertainty of science is a distrust of medical experts, which also feeds support for unorthodox positions.

So when AIDS treatments weren't having much effect, more people were apt to listen to dissenters than to mainstream researchers. When the first wave of effective drug treatments emerged, the support for dissenters declined.

Public health officials know that sometimes, actual scientific knowledge is not nearly as important as the way it plays in the real world.

"How people choose to interpret all kinds of [medical] advice is heard in a context that makes sense for your life and you select out what's important to you," said Naomi Rogers, who has a doctorate in medical history and lectures in the women and gender studies program at Yale School of Medicine.

At the turn of the century in the U.S., the latest science advocated bottle feeding as the most nutritious for infants. "New mothers chose to hear this not necessarily as `doctor knows best,"' said Rogers, "but as a kind of generational protest to mothers and grandmothers who said they should stick to the breast. They'd say, `Mom, you don't know what the new science is."'

Public health officials also know that there is no cookie-cutter approach to preventing disease. Public appeals that work in Asia won't sell in Australia. The strategy to deliver the safe-sex message in San Francisco is not a successful strategy for the Bible Belt--or for Pretoria, for that matter.

Mbeki and his health minister are emphasizing the need for unique action in Africa toward the AIDS crisis. "A simple superimposition of Western experience on African reality would be absurd and illogical," wrote Mbeki in a letter to world leaders.

Mbeki has incensed scientists by questioning the efficacy of giving the anti-AIDS drug AZT to infected pregnant women to reduce disease transmission to infants. His health minister has accused the scientific community of using South Africa as a dumping ground where drugs can be tested but where most people would not benefit because they couldn't afford them long-term.

One in eight South African adults is HIV positive. Fifteen hundred more people are infected daily.

An invitation to Mbeki's expert panel arrived at the Loop office of Jose Zuniga, president of the International Association of Physicians in AIDS Care, prompting a bit of soul-searching.

Ultimately, Zuniga decided to accept Mbeki's invitation so as not to "cede the debate to individuals we feel are wrong on these issues." "We're almost 20 years into the epidemic," he said. "With 16,000 new infections a day worldwide, a majority in sub-Saharan Africa, we can ill afford to take a step backward."

Zuniga wants to settle the debate over whether HIV causes AIDS, in order to progress to what he sees are far more pressing issues such as allocating resources, distributing drugs to needy people and reducing mother-to-child disease transmission.

The myths and misconceptions about HIV and AIDS began as soon as the epidemic was identified in 1981. During his tenure as surgeon general, C. Everett Koop defied the Reagan administration and published a pamphlet explaining how the disease was transmitted.

"It was not from a toilet seat and not from sharing a drinking cup," Zuniga said. "But it took time to combat those fears."

Of course, it always takes time to combat the fears, to quell the superstitions, to correct misimpressions, to square science with people's cultural attitudes and religious beliefs. History tells us that the way to reconcile public health and public attitudes is through open discussion and debate. So this weekend's unusual AIDS conference in Pretoria may not be so odd after all.
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