The Untreated Syphilis Study, And One Black Family's Work To Rebuild Trust In Medicine
Sean Walters wants to be a doctor someday. His great grandfather, Freddie Lee Tyson, was subjected to the infamous United States Public Health Service Syphilis Study in Tuskegee. For Walters, the legacy alone doesn’t create a pressure on him.
“Pressure?” he said, sitting on a park bench in Stamford’s Harbor Point. “I feel like there would still be pressure to at least address some of the issues that are going on in medicine.”
Walters and his family have been talking a lot more about the legacy of Tyson. The study is commonly referred to as the "Tuskegee Study of Untreated Syphilis in the Negro Male," and it has re-entered public discourse as an example of why there’s hesitancy in Black Americans to get the COVID vaccine. But experts say the topic of Black medical mistrust is more dynamic than a single story.
So what happened to Tyson? In 1932, he was one of the over 600 Black men enrolled, without his knowledge, in a study that aimed to track the natural course of the disease specific to Black people. The premise was based in harmful eugenics and the course of the disease in humans was already known due to a prior study, according to Lillie Tyson Head.
Head is the daughter of Freddie Lee Tyson and the president of Voices For Our Father’s Foundation, and she has been working to dispel myths about the study.
“The men in the study were not injected with syphilis,” Head said, adding that correcting the record on that myth is especially important. Because while African Americans are rolling up their sleeves to get the coronavirus vaccine, there’s this idea out there that people “hesitate because they feel as though they will be injected with something like the men were.”
But the men weren’t injected with it. In fact, her father was identified as already having syphilis. He had congenital syphilis, meaning he was born with it. He was tested, followed and denied care for 40 years.
"The immoral and evil thing that happened in that study was that the men were not provided penicillin when penicillin came out," Head said. Penicillin was discovered in 1945, the study was not revealed and ended until 1972.
Head would also like to set the record straight on the name. She says calling it "the Tuskegee Study" continues to place the ownership and accountability on Tuskegee. She feels calling it that is misleading and lacks transparency.
According to the CDC, it’s now referred to as the United States Public Health Service Syphilis Study at Tuskegee and originally was called "Tuskegee Study of Untreated Syphilis in the Negro Male."
There’s another myth Head would like to clear up: "The mistrust did not come about because of the Public Health Service Syphilis Study. That started in 1619 when the first slaves stepped on the grounds of America."
"Even the word hesitancy ascribes a certain individual level characteristic to what is a systemic problem," says Dr. Wizdom Powell, the Director of the Health Disparities Institute and a Professor of Psychiatry at UConn Health. "We are trying to solve medical mistrust as an individual level issue, when in fact systems, structures, and ecologic exposures are the catalyst for mistrust."
According to the Connecticut Health Foundation, Black people in Connecticut have shorter life expectancies. Black babies are four times more likely to die before their first birthday than their white counterparts. Over the lifetime of a Black Connecticut resident, asthma, diabetes, and prostate cancer are more frequent and more often fatal compared to white residents.
The Tyson family has plenty of reasons to mistrust the medical establishment. Three generations of them spoke to Connecticut Public for this story and they shared a similar attitude.
Wendy Tyson-Wood said she’s "very comfortable with the medical profession but there’s a lot of people that are not." Anthony Tyson recently lost his wife to cancer, and he advocates for people to "get checked out regularly and, you know, bring somebody who’s gonna listen because sometimes when doctors are telling you news, you’re not really comprehending it." And Walters said he always got advice from his mom: "Don’t hesitate to go to the doctor."
There’s a combination of trust and skepticism in their views, self-advocacy and awareness that the medical establishment has a lot of work to do.
"But it also comes with a lot of work on our part," Head says, "as being diligent in finding the facts, and making sure we’re getting the best healthcare possible."
Powell thinks that attitude "speaks to just the capacity for resilience and the true investment in healing, growing and thriving that exists within communities of color. That’s a narrative that we often don’t lift up but that’s so critically important."
And so Walters, 21, is taking this legacy and perspective into some field of science. He’s not sure yet if he’ll be in biomedical research or pediatric sports medicine. Regardless, he wants to see more African American men in science. Black people make up 5% of the US physician workforce but 14% of the U.S. population.
"Above anything a lot of the issues that we’re facing [are because] there’s a lack of representation, lack of the data, lack of people understanding that other people’s voices are being diminished," Walters says, "and that’s leading obviously to the issues we’re facing and the issues that we will face if things aren’t addressed."
Walters is addressing that as an intern at Pfizer this summer and as he continues in his field. He’s one part of the many Tyson family members investing in their own healing, growing, and thriving. It’s how the family is rebuilding trust in the medical system, and how they are rebuilding that medical system to protect their health.
This story has been updated to clarify the study's original name.
Ali Oshinskie is a corps member with Report for America, a national service program that places journalists into local newsrooms. Ali covers the Naugatuck River Valley for Connecticut Public Radio. Email her at firstname.lastname@example.org and follow her on Twitter at @ahleeoh.