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Lillie Tyson Head and her daughter, Carmen Head Thornton, have reason to be skeptical of the COVID-19 vaccine. After all, it was Head’s father, Freddie Lee Tyson, who was unknowingly recruited into the now infamous Tuskegee Syphilis Study.
Farmer from Alabama in 1932, Tyson was one of 623 black men recruited for the American Public Health Study at the Tuskegee Institute. The study aimed to record the natural progression of syphilis infection in black men, but the researchers did not tell those who signed up. Tyson, who had congenital syphilis, was only told he would receive free health care.
“They didn’t tell them they had syphilis, and the only thing they told them was they had bad blood and they were dealing with bad blood,” said Head, co-host of “Nightline”, Byron Pitts. “But they weren’t. They were lying to people about it. They were deceiving them.
The experiment lasted 40 years. Meanwhile, the US government has made efforts to ensure that study participants never know the researchers’ true intentions. Even when they discovered that penicillin was a reliable treatment for the infection, participants were actively blocked from receiving it.
Thornton says she was just a child when her grandfather answered the call from the U.S. Centers for Disease Control and Prevention to tell her what really happened. Head said his father was a gentle, kind and wise man, but this call upset and disappointed him.
“My dad was a proud man and he was honest,” Head said. “Someone call him and tell him he’s been a part of something for 40 years and he’s never been told the truth, and he wasn’t aware of it, then that would be. also ashamed. And you also have to understand that syphilis was not something that people were proud of.
Although Tyson died in 1988, Head and Thornton carried on his legacy in the hope that something like the experience would never happen again. In memory of the men who unknowingly brought their bodies to the study, they launched the Voices of our Fathers Legacy Foundation, which aims to change the narrative surrounding the experience and its participants and connect their descendants through the generations.
“There is a desire and a need for us, through our foundation and through my professional work, to want to evolve this story from the study of syphilis to a story that talks about being a victim to being a winner. , to go from trauma to triumph, ”said Thornton, who works as director of research, grants, manpower and development at the National Academy of Child and Adolescent Psychiatry.
The two women say they understand why black Americans are skeptical of taking the COVID-19 vaccine. Although 27% of the public say they probably would not or definitely not get vaccinated, 35% of black adults say the same, despite being disproportionately affected by the virus, according to a Kaiser Family survey. Foundation.
“The story hasn’t been kind to African Americans,” Thornton said. “It wasn’t nice, and because of some misconceptions about what happened in the study… I think it helps increase mistrust, and that’s one of the things we owe to face.”
Among the misconceptions surrounding the experience of syphilis, Head said many people believed study participants were injected with the virus. “They weren’t,” she said, but instead had frequent blood tests.
Thornton said rebuilding that trust requires more people of color in the medical field. Her mother said that even though there are more people of color in these positions now, and “things have changed, things have improved”, they could still get better.
“I’m determined to spend my life in public health and work the way I do because we need that representation,” Thornton said. “This is the reason why the study on syphilis started because there was no such representation. There weren’t those voices around the table. And so, we really need to have this representation engaged in science, engaged in research, and engaged in respectful health care.
When asked if they would take the COVID-19 vaccine themselves, they both said yes.
“Without hesitation,” Head said. “As soon as the vaccine is available to me, I take it.”
Citing other health disparities that prevail within communities of color, Head also implored people to take charge of their health.
“I want people of color to be able to look at situations, especially when it comes to protecting their health, and do their due diligence to find the information they need so they can make the right decisions and not have scared, ”she said. . “We need to move forward and not be afraid to improve our lives.”
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