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Advocates Say Tuskegee Study Overshadows Other Health Care Inequities

NOEL KING, HOST:

Are Black Americans more skeptical about getting the COVID-19 vaccine than people in other demographic groups? A poll from NPR/PBS NewsHour tells us no. They are not. But in all communities, there is some skepticism. Politicians, health officials and journalists have been talking about an infamously cruel medical study to explain why some Black Americans might be skeptical.

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UNIDENTIFIED PERSON #1: Because of things like the Tuskegee experience.

UNIDENTIFIED PERSON #2: The Tuskegee experiment...

UNIDENTIFIED PERSON #3: The Tuskegee experiment.

UNIDENTIFIED PERSON #4: Remember Tuskegee? Is this the federal government trying to fool you again?

KING: But some advocates say all of this emphasis on Tuskegee may be overplayed because there are plenty of current examples of unequal treatment in the health care system. Here's April Dembosky from KQED.

APRIL DEMBOSKY, BYLINE: The focus on Tuskegee to the exclusion of contemporary inequalities bothers Maxine Toler. She's 72 and lives outside Los Angeles. Toler talks with her friends and neighbors about the vaccine all the time. She's Black. They are. And hardly anyone brings up Tuskegee. Toler says the handful that do are fuzzy on the details.

MAXINE TOLER: If you ask them, well, what was it about, and why do you feel like it would impact your receiving the vaccine now, they can't even tell you.

DEMBOSKY: Most people she talks to cite very current reasons for not wanting the vaccine - religious beliefs or safety concerns, or they think the former president rushed it for political gain. Toler calls the Tuskegee references a distraction, irrelevant even.

TOLER: It's almost the opposite of Tuskegee because they were being denied treatment (laughter), right? And this is like, you know, we're pushing people forward, like go and get this vaccine.

DEMBOSKY: She says the point of Tuskegee was to study what happened when syphilis went untreated. It began in 1932 with about 400 Black men who had the disease. But they didn't know that.

TOLER: And they weren't told that they had it, and they didn't get any treatment for it.

DEMBOSKY: Even when a cure - penicillin - became widely available in the 1940s, government doctors withheld it from the men for another 25 years.

TOLER: Because the people involved, the white people involved, wanted to see how sick they were going to get.

DEMBOSKY: By the time the study was exposed and shut down in 1972, 128 men had died from syphilis or related complications. Forty wives and 19 children were infected. With a horrific history like this, you might assume that Black people would lose trust in the medical system or at least avoid participating in clinical trials. Over the next three decades, various books, articles and films repeated this assumption over and over.

REUBEN WARREN: That was a false assumption.

DEMBOSKY: Dr. Reuben Warren is in charge of bioethics at Tuskegee University in Alabama and is a former associate director of minority health at the CDC. He says starting in the '90s, researchers began hunting for evidence that Black people would not participate in research. Over the course of a dozen years, they completed 17 studies, including surveys of thousands of people across several cities, from Baltimore to San Antonio to Tuskegee. The conclusions were definitive.

WARREN: The hesitancy is there, but the refusal is not. And that's an important difference.

DEMBOSKY: While Black people were more wary of participating in research compared to white people, they were equally willing to actually participate if they were asked.

WARREN: Hesitant? Yes but not refusal.

DEMBOSKY: Tuskegee was not the deal-breaker everyone thought it was. Warren says this did not go over well at the CDC and in other research circles.

WARREN: Much of it indicted and contradicted what the government said.

DEMBOSKY: Now researchers had to confront the real problem. Many of them never invited Black people to participate in their studies in the first place. When they did, they didn't try very hard. Tuskegee was a scapegoat.

WARREN: That was the excuse that they used to not include Black and other communities of color in the research enterprise. If I don't want to go to the extra energy resources to include the population, I can simply say they were not interested. They refuse.

DEMBOSKY: Warren says many of the same presumptions that were made about clinical research are resurfacing now around the coronavirus vaccine. A lot of hesitancy is being confused for refusal. USC sociologist Karen Lincoln says Tuskegee is once again being used as a scapegoat.

KAREN LINCOLN: It's an excuse if you continue to use it as a way of explaining why many African Americans are hesitant. It almost absolves you of having to learn more, do more, involve other people, admit that racism is actually a thing today.

DEMBOSKY: The memory of Tuskegee is still very present for some people. But Lincoln says it's the contemporary failures of the health care system that are causing more distrust than events of the past.

LINCOLN: It's what happened to me yesterday.

DEMBOSKY: Not what happened 50 years ago. Lincoln works with an advocacy group for African American elders. She says seniors complain to her all the time about doctors dismissing their concerns or nurses answering the call button for their white roommate more than them.

LINCOLN: And the word travels fast when people have negative experiences. They share it.

DEMBOSKY: Like the Facebook live video of Susan Moore that went viral. Moore, a Black doctor with COVID, said she had to beg her physician to give her remdesivir, the drug that speeds up recovery from COVID. She was wearing her hospital gown, sitting in her hospital bed near Indianapolis, an oxygen tube in her nose as she spoke into the camera on her phone.

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SUSAN MOORE: He said, oh, you don't need it. You're not even short of breath. I said, yes, I am. He further stated you should just go home right now. I put forth and I maintain if I was white, I wouldn't have to go through that.

DEMBOSKY: Dr. Moore died two weeks later. It's stories like these that stoke mistrust. Dr. Ruben Warren says if you want to shift that, if you want Black people to trust doctors and trust the vaccine, don't blame them for distrusting it. The onus is on the health institutions to listen, to be accountable and make the vaccine easy to get.

WARREN: Prove yourself trustworthy, and trust will follow.

DEMBOSKY: Warren says Black people will come when institutions and officials take responsibility and stop making excuses. For NPR News, I'm April Dembosky.

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KING: That story came from NPR's partnership with KQED and Kaiser Health News. Transcript provided by NPR, Copyright NPR.

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