For months, journalists, politicians and health officials – including New York Governor Andrew Cuomo and Dr. Anthony Fauci – invoked Tuskegee’s infamous syphilis study to explain why black Americans are more hesitant than white Americans in get the COVID-19 vaccine.
“It’s ‘Oh, Tuskegee, Tuskegee, Tuskegee’ and it’s mentioned every time,” he said Karen Lincoln, professor of social work at USC and founder of Defenders of African-American Seniors. “We assume that it is Tuskegee. We don’t ask people. “
When she asks elderly blacks in Los Angeles about the vaccine, Tuskegee rarely appears. People in the community talk about contemporary racism and barriers to health, she said, although it appears to be mainly academics and officials who are concerned with Tuskegee’s story.
“He’s a scapegoat,” said Lincoln. “It is an excuse. If you continue to use it as a way of explaining why many African Americans are hesitant, it almost absolves you from having to learn more, do more, involve other people – admit that racism is really one thing today. “
These are the health inequities of today that Maxine Toler, 72, hears about when she asks her friends and neighbors in Los Angeles what they think of the vaccine. As chairman of her city’s senior defense council and neighborhood club, Toler said she and most of the other black elderly people she talks to want the vaccine, but are having trouble getting it. And that alone sows suspicion, she said.
Toler said the blacks she knows who don’t want the vaccine have very modern reasons for not wanting it. They talk about religious beliefs, security concerns or a distrust of former President Trump and his contentious relationship with science. Only a handful mention Tuskegee, she said, and when they do, they are confused about the details of what happened during the 40-year study.
“If you ask them ‘What was it about?’ and ‘Why do you think it would affect the fact that you get the vaccine?’, they can’t even say, ”she said.
Toler knows the details, but she said the story is a distraction from today’s effort to vaccinate people against the coronavirus.
“It’s almost the opposite of Tuskegee,” she said. “Because treatment was being denied. And so, we are pushing people forward: go and get this vaccine. We want everyone to be protected from COVID. “
The “Tuskegee Study of Untreated Syphilis in Black Men” was a government-sponsored, taxpayer-funded study that started in 1932. Some people believe that researchers injected men with syphilis, but that is not true. Instead, scientists recruited 399 black men from Alabama who already had the disease.
The researchers told the men that they had come to Tuskegee to cure “bad blood”, but they were never told they had syphilis. And government doctors never intended to cure men. Even when an effective treatment for syphilis – penicillin – became widely available in the 1940s, researchers denied it to infected men and continued the study for decades, determined to trace the disease to its final point: autopsy.
By the time the study was exposed and closed in 1972, 128 of the men involved had died of syphilis or related complications, and 40 of their wives and 19 children had been infected.
A researcher draws blood from a participant in the government study of Tuskegee syphilis, which began in 1932 and ended in 1972, in rural Macon County, Ala.
(Tuskegee Multicultural Center for Human and Civil Rights)
Given this horrible story, many scientists assumed that blacks would no longer want to have anything to do with the medical establishment, particularly with clinical research. Over the next three decades, several books, articles and films repeated this assumption until it became a gospel.
“That was a false assumption,” he said. Dr. Rueben Warren, director of the National Center for Bioethics in Research and Health at Tuskegee University in Alabama and former associate director of minority health at the Centers for Disease Control and Prevention from 1988 to 1997.
Some researchers began to question this assumption at a 1994 bioethics conference, where almost all of the speakers seemed to take it for granted. Skeptics asked: what kind of scientific evidence is there to support the notion that blacks would refuse to participate in the research because of Tuskegee?
When these 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 the main skeptic. Dr. Ralph Katz, epidemiologist at New York University College of Dentistry.
So Katz formed a research team to look for that evidence. They completed a series of studies over the next 14 years, he focused primarily on researching thousands of people in seven cities, from Tuskegee to Baltimore and San Antonio.
The conclusions were definitive: while blacks were twice as “cautious” about participating in research, compared to whites, they were equally willing to participate when asked. And no association was found between Tuskegee’s knowledge and willingness to participate.
“Hesitation exists, but refusal does not. And that’s an important difference, ”said Warren, who later joined Katz on the issue. a book about the research. “Hesitant, yes. But don’t refuse. “
Tuskegee was not the business destroyer that everyone thought.
These results were not well accepted by academic and governmental research circles, Warren said, as they “indicted and contradicted” the common belief that the low minority participation in the research was the result of Tuskegee.
“That was the excuse they used,” said Warren. “If I don’t want to go for extra energy, resources to include the population, I can simply say that they were not interested. They refused. “
Now, the researchers have had to address the shortcomings of their own recruitment methods. Many of them never invited blacks to participate in their studies in the first place. When they did, they often did not try very hard. For example, two cardiovascular disease studies offered enrollment to more than 2,000 whites, compared to no more than 30 people from other racial and ethnic groups.
“We tend to use Tuskegee as a scapegoat for us as researchers, not doing what we need to do to ensure that people are well informed about the benefits of participating in a clinical trial,” he said. B. Lee Green, vice president of diversity at the Moffitt Cancer Center in Florida, who worked on early research to unmask assumptions about Tuskegee’s legacy.
“There may be individuals in the community who totally remember Tuskegee, and we shouldn’t rule that out,” he said. But hesitation “is more related to the experiences lived by individuals, to what people live each day”.
Some of the same assumptions made about clinical research are re-emerging today around the coronavirus vaccine. Much hesitation is being mistaken for refusal, Warren said. And many of the ingrained structural barriers that limit access to the vaccine in black communities are not addressed sufficiently.
Tuskegee is once again being used as a scapegoat, said Lincoln, the sociologist at USC.
“If you say ‘Tuskegee’, you don’t have to recognize things like drugstore deserts, things like poverty and unemployment,” she said. “You can just say, ‘It happened then … and there is nothing we can do about it.'”
If you say Tuskegee, you don’t have to recognize things like drugstore deserts, things like poverty and unemployment.
Karen Lincoln, professor of social work at USC
She said that contemporary failures in the health care system are more pressing and cause more distrust than the events of the past.
“It happened to me yesterday,” she said. “It was not what happened in the 50s or 60s, when Tuskegee was really active.”
The elderly people she works with complain to her all the time about doctors dismissing their concerns or talking quietly to them, and nurses answering the hospital call buttons to their white roommates more often than they do to them.
As an excellent example of the unequal treatment that blacks receive, they cite Dr. Susan Moore’s recent Facebook Live video.
When Moore, a geriatrician and family medicine doctor in Indiana, obtained COVID-19, she filmed herself from her hospital bed, with an oxygen tube in her nose. She told the camera that she needed to beg the doctor to continue her treatment with remdesivir, a drug that can speed recovery from the disease.
“He said, ‘Ah, you don’t need this. You are not even short of breath. I said, ‘Yes, I am,’ ”Moore said to the camera. “I propose and maintain, if I were white, I wouldn’t have to go through this.”
Moore died two weeks later.
“She knew what kind of treatment she should receive and was not receiving,” said Toler, from LA, comparing Moore’s treatment to the care Trump received.
“We saw closely with the president, that he got the best of everything,” she said. “They healed him in a few days, and our people are dying like flies.”
Toler and his neighbors said the same injustice was happening to the vaccine. Three months after the vaccine was launched, blacks invented 3% of Californians who received the vaccination, although they are responsible for 6.2% of the state’s COVID deaths.
Workers fill syringes with doses of the COVID-19 vaccine at the Kedren Community Health Center in South Los Angeles.
(Jason Armond / Los Angeles Times)
The first mass vaccination sites set up in the Los Angeles area – at Dodger Stadium and Disneyland – are difficult to reach from black neighborhoods without a car. And you practically needed a computer science degree to get an advance, because getting an online appointment required navigating a confusing interface or constantly updating the portal.
White, wealthy people have been able to get appointments, even in clinics aimed at the hard-hit black and Latino communities, while people of color find it difficult to serve them.
It is stories like these, of unequal treatment and barriers to care, that fuel distrust, Lincoln said. “And the word travels fast when people have negative experiences. They share. “
To deal with this distrust, a paradigm shift will be needed, said Warren of Tuskegee University. If you want blacks to trust doctors and the vaccine, don’t blame them for their distrust, he said. Health institutions have an obligation to show first that they are trustworthy: listen, take responsibility, show responsibility and stop making excuses. This, he added, means providing information about the vaccine without being patronizing and facilitating access to the vaccine in black communities.
“Prove that you are trustworthy and trust will follow,” he said.
This article is from a partnership that includes NPR, KQED and Kaiser Health News (KHN), a national newsroom that provides in-depth coverage of health issues. It is one of the three main operational programs of the Kaiser Family Foundation.