By Deborah King, Associated Press
February 26, 2003

Researchers trying to learn more about 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 Tuskegee Syphilis Study, conducted by the federal government between 1932 and 1972, researchers withheld medical treatment from poor, black men in Macon County, Ala., for experimental purposes. The men were not told they had syphilis and weren't treated for the disease even after penicillin became available. By the time the study was exposed, 128 men had died of syphilis or related complications.

More than 30 years later, the damage done by that study still lingers, black activists say — even hindering efforts to halt the AIDS epidemic.

"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."

J. Lawrence Miller, executive director of the Black Educational AIDS Project in Baltimore calls it the "Tuskegee mentality."

"That distrust has become cultural," Miller said. "How do you fight culture? You can't, except for education."

Blacks have been hit harder by AIDS than any other racial or ethnic group in America. They represented about half of new HIV cases reported in the United States in 2001 — the largest of any group, according to the Centers for Disease Control and Prevention.

"Given the disproportionate impact that the AIDS epidemic has on black people, we stand to gain the most by the development of an effective HIV/AIDS vaccine," Wilson said. "We need to do a better job of recruiting black volunteers for these clinical trials."

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.

In whole numbers, that meant four of the 203 blacks who received the vaccine became infected while nine of the 111 who received the placebo were infected. 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.

There were similar results among the small number of Asians involved in the study.

VaxGen spokesman 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."

Pernessa Seele, founder of The Balm in Gilead, a nonprofit that works with black churches to stop the spread of AIDS, agreed that the "small numbers of blacks in the study clearly indicates how reluctant African-Americans are" to participate in trials.

"Because of our history, we really believe it's another opportunity to take advantage of black people," she said.

That suspicion is so pervasive that some blacks think HIV was designed to kill them — either by the government or other white institutions, Seele said. Medical professionals and AIDS activists try to dispel such ideas.

Steve Wakefield, of the HIV Vaccine Trials Network, worries that if too few blacks participate in research, scientists won't have enough information to help people, both here and in Africa.

Wakefield, the network's associate director for community relations, said he is always asked about Tuskegee when he makes presentations to minority groups in this country.

In Africa, "the one question I get asked from country to country is 'How many black Americans have already taken this product or been in research with this?'" said Wakefield, who is black.

While studies continue to document disparities in health care between American blacks and whites, much has changed since the Tuskegee study, he said. In government-sponsored trials, there are now volunteer community advisory boards that monitor safety — and informed consent is required.

But Seele thinks that vaccine research also must include more black scientists.

"It is very important," she said, "to have black folks in research who understand black culture — who understand some of the fundamental beliefs we have in our community."