By April Dembosky | KQED
As more surveys come out showing that Black Americans are more hesitant than white Americans to get the coronavirus vaccine, more journalists, politicians and health officials — from New York Gov. Andrew Cuomo to Dr. Anthony Fauci — are invoking the infamous Tuskegee syphilis study to explain why.
“It’s ‘Oh, Tuskegee, Tuskegee, Tuskegee,’ and it’s mentioned every single time,” says Karen Lincoln, a professor of social work at the University of Southern California. “We make these assumptions that it’s Tuskegee. We don’t ask people.”
When she asks the Black seniors she works with in Los Angeles about the vaccine, Tuskegee rarely comes up. People in the community are more interested in talking about contemporary racism and barriers to health care, she says, while it seems to be mainly academics and officials who are preoccupied with the history of Tuskegee.
“It’s a scapegoat,” Lincoln says. “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.”
It’s the health inequities of today that Maxine Toler, 72, hears about when she talks to her friends and neighbors in LA about the vaccine. Toler is president of her city’s senior advocacy council and her neighborhood block club. She and most of the other Black seniors she talks to want the vaccine, but are having trouble getting it, she says, and that alone is sowing mistrust.
Those who don’t want the vaccine have very modern reasons for not wanting it. They tell Toler it’s because of religious beliefs, safety concerns or distrust for the former U.S. president and his relationship to science. Only a handful mention Tuskegee, she says, and when they do, they’re fuzzy on the details of what happened during the 40-year study.
“If you ask them what was it about and why do you feel like it would impact your receiving the vaccine, they can’t even tell you,” she says.
Toler remembers, and says the history is a distraction; it’s not relevant to what’s happening now.
“It’s almost the opposite of Tuskegee,” she says. “Because they were being denied treatment. And this is like, we’re pushing people forward: Go and get this vaccine. We want everybody to be protected from COVID.”
Questioning the Tuskegee Legacy
The “Tuskegee Study of Untreated Syphilis in the Negro Male” was a government-sponsored, taxpayer-funded study that began in 1932. Some people believe that researchers injected the men with syphilis, but that’s not true. Rather, they recruited 399 Black men from Alabama who already had the disease, though the government doctors never told them they had it.
Instead, researchers told the men they had come to cure “bad blood,” though they never intended to cure anything. Even when a cure for syphilis – penicillin – became widely available in the 1940s, the researchers withheld it and continued the study for decades, determined to track the disease to its end point: autopsy.
By the time the study was exposed and shut down in 1972, 128 of the men involved had died from syphilis or related complications; 40 of their wives and 19 children had also been infected.
With a horrific history like this, many scientists assumed that Black people would never want to participate in clinical research again. Over the next three decades, various books, articles and films repeated this assumption until it became gospel.
“That was a false assumption,” says Dr. Rueben Warren, director of the National Center for Bioethics in Research and Health Care at Tuskegee University in Alabama, and former associate director of Minority Health at the Centers for Disease Control and Prevention, from 1988 to 1997.
Several researchers began to question this assumption at a 1994 bioethics conference, where almost all the speakers seemed to accept it as a given. The doubters asked, what kind of scientific evidence is there to support the notion that Black people would refuse to participate in research because of Tuskegee?
When those researchers did a comprehensive search of the existing literature, they found nothing.
“It was apparently a ‘fact’ known more in the gut than in the head,” wrote lead doubter Ralph Katz, a dentist from New York.
So Katz formed a research team to look for this evidence. They completed a series of studies over the next 14 years, focused mainly on surveying thousands of people across seven cities, from Baltimore to San Antonio to Tuskegee.
The conclusions were definitive: While Black people were twice as “wary” of participating in research, as compared to white people, they were equally willing to actually participate. And, there was no association between knowledge of Tuskegee and willingness to participate.
“The hesitancy is there, but the refusal is not. And that’s an important difference,” says Warren, who later joined Katz in editing “The Search for the Legacy of the USPHS Syphilis Study at Tuskegee,” a book about the research. “Hesitant, yes. But not refusal.”
Tuskegee was not the deal breaker everyone thought it was.
These results did not go over well within academic and government research circles, Warren says, as they “indicted and contradicted” the common belief that low minority enrollment in research was the result of Tuskegee.
“That was the excuse that they used,” Warren says. “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 refused.”
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. For example, two studies of cardiovascular disease offered enrollment to more than 2,000 white people, compared to no more than 30 people from minority groups.
“We have a tendency to use Tuskegee as a scapegoat, for us, as researchers, not doing what we need to do to ensure that people are well-educated about the benefits of participating in a clinical trial,” says B. Lee Green, vice president of diversity at Moffitt Cancer Center in Florida, who worked on the early research.
“There may be individuals in the community who absolutely remember Tuskegee, and we should not discount that,” he adds. But hesitancy “is more related to individuals’ lived experiences, what people live each and every day.”
‘It’s What Happened to Me Yesterday’
Some of the same presumptions that were made about clinical research are resurfacing today around the coronavirus vaccine. A lot of hesitancy is being confused for refusal, Warren says. And so many of the entrenched structural barriers that are limiting access to the vaccine in Black communities are not being sufficiently addressed.
Tuskegee is once again being used as a scapegoat, says USC professor of social work Karen Lincoln.
“If you say Tuskegee, then you don’t have to acknowledge things like pharmacy deserts, things like poverty and unemployment,” she says. “You can just say, ‘That happened then. Things are different now and there’s nothing we can do about it.’ “
She says the contemporary failures of the health care system are causing more distrust than the events of the past.
“It’s what happened to me yesterday,” she says. “Not what happened in the ’50s or ’60s, when Tuskegee was actually active.”
The seniors she works with, through her group Advocates for African American Elders, complain all the time about doctors dismissing their concerns and talking down to them, or nurses answering the hospital call buttons for their white roommates more often than for them.
They point to the recent Facebook Live video of Susan Moore as a prime example of the unequal treatment Black people receive. Moore, a Black doctor from Indiana who got COVID-19, filmed herself from her hospital bed, an oxygen tube in her nose. She said she had to beg her physician to continue her course of Remdesivir, the drug that speeds up recovery from the disease.
“He said, ‘Ah, you don’t need it. You’re not even short of breath.’ I said ‘Yes, I am,’ ” Moore said into the camera. “I put forward and I maintain, if I was white, I wouldn’t have to go through that.”
Moore died two weeks later.
“She knew what kind of treatment she should be getting and she wasn’t getting it,” said Maxine Toler, the 72-year-old from LA. “We saw it up close and personal with the president, that he got the best of everything. They cured him in a couple of days, and our people are dying like flies.”
Toler and her neighbors are watching the same inequity play out with the vaccine. The first mass vaccination sites set up in LA – at Dodger Stadium and Disneyland – are difficult to get to from Black neighborhoods without a car, and you practically needed a computer science degree to get an online appointment for the early doses.
White people are snatching up appointments, even at clinics intended for disadvantaged communities, while people of color can’t get through. So far, Black people make up just 2.9% of Californians who have received the vaccination, even though they account for 6.2% of the state’s COVID-19 deaths.
It’s stories like these that stoke mistrust, Lincoln says. “And the word travels fast when people have negative experiences. They share it.”
The key to addressing this mistrust requires a paradigm shift, says Warren of Tuskegee University. If you want Black people to trust doctors and trust the vaccine, don’t blame them for distrusting it, he says. The obligation is on health institutions to first show they are trustworthy: to listen, take responsibility, show accountability and stop making excuses. That, he adds, means providing information about the vaccine without being paternalistic and making it easier to access in Black communities.
“Prove yourself trustworthy and trust will follow,” he says.