Heidi de Marco / KHN
For months, journalists, politicians and health officials – from New York Gov. Andrew Cuomo to Dr. Anthony Fauci – have invoked the infamous Tuskegee syphilis study to explain why Black Americans are more hesitant than white Americans to get the coronavirus vaccine.
“It’s ‘Oh, Tuskegee, Tuskegee, Tuskegee,’ and it’s mentioned every single time,” says Karen Lincoln, a professor of social work at USC and founder of Advocates for African American Elders. “We make these assumptions that it’s Tuskegee. We don’t ask people.”
When she asks Black seniors in Los Angeles about the vaccine, Tuskegee rarely comes up. People in the community talk 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 asks her friends and neighbors in LA what they think about the vaccine. Toler is president of her city’s senior advocacy council and her neighborhood block club. She says she and most of the other Black seniors she talks with want the vaccine, but are having trouble getting it. And that alone is sowing mistrust, she says.
Toler says the Black people she knows who don’t want the vaccine have very modern reasons for not wanting it. They talk about religious beliefs, safety concerns or distrust for former U.S. president Donald Trump and his contentious 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 knows all the details, but she says that history is a distraction from today’s effort to get people vaccinated against the coronavirus.
“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 Modern Uses of 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.
Researchers told the men they had come to Tuskegee to cure “bad blood,” but never told them they had syphilis, and the government doctors never intended to cure the men. Even when an effective treatment for syphilis – penicillin – became widely available in the 1940s, the researchers withheld it from the infected men 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, and 40 of their wives and 19 children had become infected.
With a horrific history like this, many scientists assumed that Black people would want nothing to do with the medical establishment again, particularly clinical research. 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.
A few 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, an epidemiologist at the NYU College of Dentistry.
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 when asked. 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 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 shortcomings of their own recruitment methods. Many of them never invited Black people to participate in their studies in the first place. When they did, they often did not 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 debunking the assumptions about Tuskegee’s legacy.
“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 sociologist 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…and there’s nothing we can do about it.’ “
She says the contemporary failures of the health care system are more pressing and 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 complain to her all the time about doctors dismissing their concerns, talking down to them, or nurses answering the hospital call buttons for their white roommates more often than for them.
As a prime example of the unequal treatment Black people receive, they point to the recent Facebook Live video of Dr. Susan Moore. When Moore, a geriatrician and family medicine physician from Indiana, got COVID-19, she filmed herself from her hospital bed, an oxygen tube in her nose. She told the camera that 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, contrasting Moore’s treatment with the care Donald Trump received.
“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 say that the same inequity is playing out with the vaccine. Three months into the vaccine roll out, 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.
The first mass vaccination sites set up in the Los Angeles area – at Dodgers Stadium and at Disneyland – are difficult to get to from Black neighborhoods without a car. And you practically needed a computer science degree to get an early dose, as snagging an online appointment required navigating the confusing interface or constantly refreshing the portal.
White, affluent people are snatching up appointments, even at clinics intended for hard-hit Black and Latino communities, while people of color can’t get through.
It’s stories like these, of unequal treatment and barriers to care, that stoke mistrust, Lincoln says. “And the word travels fast when people have negative experiences. They share it.”
To address this mistrust will require 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 the vaccine easy to access in Black communities.
“Prove yourself trustworthy and trust will follow,” he says.