Advocates Say AIDS Vaccine Researchers Need to Break Through Blacks' Mistrust of Medical Community

Researchers trying to learn why an AIDS vaccine appeared to work well in a small number of black volunteers may have trouble finding people for further studies, advocates and educators warn.

Suspicion of medical research runs deep among many blacks, they say, and the reason can be summarized in one word: Tuskegee. In the federal government's Tuskegee Syphilis Study, researchers withheld medical treatment from poor, black men in Macon County, Ala. The men were not told they had syphilis, and they were not treated even after penicillin became available. By 1972, when the study was exposed, 128 men had died of syphilis or related complications; at least 40 wives had been infected; and 19 children had contracted the disease at birth.

"Many African-Americans are suspicious of the health care system and suspicious of doctors and scientists because there's a legacy of mistreatment," said Phill Wilson, executive director of the Los Angeles-based Black AIDS Institute. "Even though people may or may not know the specifics of the Tuskegee trials, they know that there are health disparities and that blacks often get inferior treatment based on race."

Blacks made up just 6 percent of the 5,009 volunteers who participated in VaxGen Inc.'s AIDS vaccine experiment. The experiment showed that there were 78 percent fewer infections among black volunteers who took the vaccine than in those who received a placebo. The company said those results were statistically significant and showed that the vaccine has value. But some observers warned that the sample size was too small.

VaxGen spokesperson Jim Key said it was difficult for the company to recruit minority participants. "There was still considerable skepticism among people of color regarding medical research and specifically regarding HIV vaccine research. There are so many myths and fears and conspiracy theories regarding HIV," Key said. "My hope is that this will be a catalyst."

Balm in Gilead founder Pernessa Seele said that suspicion is so pervasive some blacks believe AIDS was designed to kill them. "It is very important to have black folks in research who understand black culture -- who understand some of the fundamental beliefs we have in our community," Seele said.

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