ORANGE COUNTY, Fla. – Some of the descendants of victims of the study near Tuskegee, Alabama are speaking out and encouraging others to trust the medical experts and get vaccinated — all as they’re working to dispel myths and tell the untold stories from that 40-year study.
83-year-old Orange County resident Leo Ware will never forget what he says happened to both his grandfathers during an experimental study.
“It’s no question what happened was wrong,” Ware said. “They thought they were being treated but it wasn’t for the syphilis it was for what they call bad blood.”
Researchers told the men they were being treated for “bad blood,” but they did not receive the proper treatment needed to cure their illness. More than 600 Black men were originally used in the study, according to Voices for Our Fathers Legacy Foundation, a nonprofit dedicated to raising awareness to the men victimized by the study.
He said they both went blind, but never knew they were part of the United States Public Health Service syphilis study at Tuskegee. It was a 40-year study where hundreds of Black men were untreated for syphilis.
“They didn’t give them the cure. They just wanted to see what the disease was going to do,” Ware said.
Monday, several descendants from the study met with Orange County Mayor Jerry Demings and his wife Rep. Val Demings (D- Fla.) to share their stories and also to discuss the misconceptions.
“The men were not injected with syphilis,” Lillie Head said.
Head said her father was also a part of the study, unknowingly. He died at 82 years old in 1988. She said she wants to encourage more people, especially Black people who may be on the fence to get the COVID-19 vaccine.
“We should not deny ourselves the vaccine because we need it. The vaccine is important,” Head said. “The men stepped out to be cured and they were denied.”
It’s welcome news for Demings, as he’s pushing to get more people vaccinated and he wanted people to hear stories from these descendants.
“I’m encouraged by these descendants. Obviously, it was a myth that was told for decades,” Jerry Demings said. “We wanted to be really clear with our community about what we’re asking them to do — to get vaccinated, especially as we try to reach herd immunity within our community.”
Head is the president of Voices for our Fathers Legacy Foundation, working to gather more stories from descendants and even give scholarships for them to work in the medical field. She said she’s doing it for her late father and the other more than 600 men who she says were victimized.
“It was up to us to make sure that did it ever happen again to anyone,” Head said.
They’re also working to build a memorial garden at Tuskegee and a documentary along with more outreach.
To find out more about the research this organization is doing and how to get more involved or donate, click here.