Legacy of Tuskegee syphilis project is fear of research Many blacks suspicious of doctors

August 31, 1993|By Donna St. George | Donna St. George,Knight-Ridder News Service

William Mason of Baltimore is suspicious of doctors and medicines and government health programs, even now when he desperately needs them. As he considers why, his reason settles on a name that has lurked in his mind for 15 or 20 years.

Tuskegee. In one word, all the proof in the world. It is a word that resonates fearfully in black communities throughout America when critical health-care decisions are made. Often they are life and death decisions.

Tuskegee was the rural Alabama town where the government lied to 400 black men who were sick with syphilis. It told them their problem was "bad blood" and that they were being treated.

But the doctors never really gave them medicine. Not even after the men shriveled up and went blind and went insane. Not even as the men died.

For 40 years, the government just watched. This was research. And the doctors wanted to study these men all the way to the autopsy table.

"When you know about what happened in Tuskegee, you don't forget," says Mr. Mason, a slender, soft-spoken man of 48. "You may think you've dismissed it from your mind, but you find it's still locked up in your consciousness when you make a decision."

That wrenching moment has come for Mr. Mason, who has the AIDS virus, and he believes that his only chance to survive may be to join an experimental trial for a brand-new drug. It is a slim hope. But it is all he has.

6* Then he thinks of the men of Tuskegee.

Worrying about priorities

Like them, Mr. Mason is black. He worries that the doctors will be more concerned with their research than his health. That he will end up more sickly instead of healthier.

"I haven't decided what to do," Mr. Mason concedes one Saturday, conflict in his angular face.

He is caught between two of life's most powerful forces -- the force of his will to survive and the force of his history, which was told and retold among family and friends until it became part of a common faith.

Among many blacks in America, that faith says: Don't believe what the doctors say. Don't let them experiment on you. If they did it once, they could do it again.

It is a voice of warning that has spoken with particular shrillness and consequence when it comes to the spread and treatment of AIDS. Let Karen Reddick tell you about the legacy of Tuskegee. She is minority program coordinator for the AIDS task force in Pittsburgh and it is her job to bring AIDS education programs into the black community.

At every neighborhood program, at every community forum on AIDS, someone raises the issue of Tuskegee, she says.

"I feel like it's this barrier even before I open my mouth," Ms. Reddick says. "And it has a profound effect. They disbelieve what you're telling them, and they disbelieve the process of treatment.

"Where we have gone wrong in AIDS education is that we don't acknowledge that this is a problem. We don't acknowledge Tuskegee still exists for people."

Let Dr. Richard E. Chaisson tell you about the legacy of Tuskegee. He is director of the AIDS Service at Johns Hopkins Hospital in Baltimore, which treats 3,000 people with AIDS.

At Hopkins, Tuskegee comes up regularly -- in the examination room, at community advisory board meetings and in discussions of clinical trials for new drugs.

"I would say that Tuskegee is a major issue in the African American community and it has an extraordinary legacy," he says.

-! There are plenty of examples:

Deterrent in Prince George's

In Prince George's County, Tuskegee keeps many blacks who are in need of medical care from coming into the public-health clinic, Director Maureen McCleary says.

In Atlanta, Tuskegee is one reason so many blacks have refused to take the drug AZT, says Terri Creagh, clinical director of the AIDS Research Consortium of Atlanta.

In Chicago, Tuskegee scares people even from answering AIDS survey questions.

"I'm just trying to get their opinions," laments Michael Norman Haynes, an AIDS activist in Chicago. "And as many as 30 percent of the people bring Tuskegee up and don't want to get involved."

In New York City, 25 to 33 percent of those asked to join in research trials decline "either because of Tuskegee or some variation thereof," says Dr. Lawrence S. Brown, staff physician at Harlem Hospital and assistant clinical professor of medicine at Columbia University.

"Tuskegee unfortunately lives on," Dr. Brown says.

In Philadelphia, Tuskegee has been one reason this summer that the city's free immunization for children has drawn far fewer youngsters than expected, says City Health Commissioner Robert K. Ross.

"There is still a lot of residual distrust that haunts public health from the Tuskegee study," Mr. Ross says.

Even Howard University in Washington, one of the nation's premier black institutions, has trouble getting blacks to join clinical trials, says study coordinator Viktoria Holley Trimmer.

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