ORANGE COUNTY, Fla. - As health officials across the country are working to combat COVID-19 vaccine hesitancy, one group is speaking out directly to the African-American community.
Descendants of the infamous syphilis experiment at Tuskegee are encouraging Black people to get the vaccine despite many Black people citing the experiment as a reason why they do not trust doctors or the vaccine.
The experiment was an ethically abusive 40-year study conducted by the U.S. Public Health Service starting in 1932. More than 600 Black men were told they were being treated for "bad blood", a local term used to describe various ailments during that time, when, in fact, doctors were not treating them at all. Even when penicillin became available to treat syphilis the participants were not offered it.
The purpose of the study was to observe the natural progression of untreated syphilis. The study was conducted without the patients’ informed consent. Many of the participants suffered severe health problems.
Both of Orlando resident Leo Ware’s grandfathers were part of the experiment. He said one of them had syphilis and went blind because of the disease.
"It was a burden on the whole family," Ware said. "I had a reflection of the things that I could’ve accomplished and the things that I could’ve done if I’d have had full support of my grandfather on both sides."
Lillie Head’s father was also part of the experiment but cautions people against using the experiment as a reason not to get the vaccine. She said there are myths around the experiment and the non-profit Voices for our Fathers’ Legacy Foundation is working to dispel them.
"A lot of people still believe the men were injected and they were not," Head said. Nearly 400 of the men already had syphilis when the joined the study while 200 did not. "They stepped out on faith to get better and to cure what they had. If we deny ourselves the vaccine we are doing injustice to what the men were trying to do." Head encourages people to do their research and talk to their doctors to make a decison on whether to get the vaccine. She recently received the COVID vaccine along with Ware.
The descendants met with Orange County Mayor Jerry Demings and U.S. Representative Val Demings on Monday about their efforts. Mayor Demings is working hard to fight vaccine hesitancy and recently launched a campaign about it. He said it is important to hear from the descendants because there is misinformation circulating about the experiment.
Head, who is the president of the Voices for our Fathers’ Legacy Foundation, said the organization is also working to change the negative perception around the men who participated in the experiment.
"All of the pictures that are left of the study paint them in a very negative and vulnerable light and they were more than that. We want to transform that legacy that was left by the study, especially the narrative that was left, showing the image of the men who were in the study as being poor uneducated, guinea pigs and abused and used as victims. They were human beings and they also had lives. They had legacies, they had loved ones."
The foundation is working to fundraise for scholarship money and to build a monument and garden at Tuskegee to honor the men. They are also looking to identify all the men involved in the study. Members of the foundation are in Orlando this week interviewing five descendants with the help of Howard University professor Dr. Arvilla Jackson.
Mayor Demings said he plans to help the foundation with its efforts.
For more information about the foundation and its work visit the Voices for Our Fathers’ Legacy Foundation website.