It has been some 45 years since the horrific “Tuskegee Study of Untreated Syphilis in the Negro Male,” also known as the Tuskegee Syphilis Study, came to an end after it was exposed that medical workers, working with the U.S. Public Health Service, were withholding treatment from nonconsenting and unsuspecting black men infected with syphilis—which became relatively easily treated within the study’s life span—solely so that doctors could track how the deadly disease ravaged the human body and then later dissect those bodies.
I believe it’s safe to say that most people have a working knowledge of these experiments, which took place from 1932 to 1972, in which some 600 men in rural Alabama were “enrolled” into the study with the promise of free medical checks, free food, free transportation and burial insurance. Those men were tested and then sorted into two groups: 399 who had syphilis and another 201 who were not infected.
The disease-free men were used as a control group, while the sick men were told only that they had “bad blood,” with the study’s purpose hidden from them. They were even given pills and tonic to make them believe that they were being treated when they weren’t. In the mid-1940s, when penicillin became the standard treatment for syphilis, doctors never provided the men with the lifesaving treatment.
As the Associated Press notes, the government went about its merry way, publishing reports on the study, including the findings that showed men with syphilis were dying at a faster rate than the uninfected. But it is unlikely that any of the men—or their families—knew what had actually happened until AP busted the story wide open on July 26, 1972.
The result was a lawsuit launched on behalf of the victims of the study, which led to a $9 million settlement on Aug. 28, 1975. Payments were given to the men and their descendants based on whether the men were infected or were part of the control group, and whether they were dead or alive. Living participants who were infected with syphilis got $37,500, and heirs of dead members of the control group got $5,000. Women and children who were infected with the disease were given lifetime medical and health benefits, and a handful survive to this day.
But the legal fallout is not quite over yet.
According to AP, the settlement funds were used for decades to compensate study participants and more than 9,000 of their relatives. However, court workers were unable to track down some descendants, and yet others never responded to letters from the clerk’s office, which had already allocated millions of dollars before the last recorded payment in 2008.
It is not clear how much money from the settlement is left over—court officials won’t say. However, documents indicate that most of it is interest earnings from money paid by the government decades ago. Civil rights lawyer Fred Gray, who represented plaintiffs in the lawsuit against the government for the Tuskegee study, said that he’s heard it’s less than $100,000.
Some family members want the money to be used for additional funding for medical screenings for the families of the men in the study, while others want a memorial at an old hospital where the study was run at Tuskegee University in Macon County, Ala.
As AP notes, U.S. District Judge Myron Thompson is currently considering a request filed by Gray in August to use the remaining money to fund the operation of the Tuskegee Human and Civil Rights Multicultural Center, which is a combination museum and town welcome center that includes a display about the study.
The center is operated by a nonprofit organization headed by Gray and his daughter. The names of the men involved in the study are etched on the floor as a memorial. A judge had refused a similar request from Gray in 2004, according to the report, after the government claimed that it should get the money, according to records, AP reports.
In the meantime, as the case remains in limbo, the families of the men continue to remember, grappling with the stigma of being linked to the experiment and also working to deepen the narrative.
Lille Tyson Head is one of those people. The 72-year-old chairs Voices of Our Fathers Legacy Foundation, a nonprofit formed in 2014 by relatives to tell the story of the victims of the experiment.
Head’s father, Freddie Lee Tyson, was one of those men, but also so much more.
“He was a wise man, very gentle. He was a disciplined man. Active in the church, loved his family and his extended family,” Head, who was one of eight children, recalled. “He was a good man. He had a sense of humor; he was a good dancer.”
Although Tyson displayed no outward symptoms, he was born with congenital syphilis that he inherited from his mother, Head told AP, which is how he became a part of the study. However, in the 1950s, Tyson quit after hearing that “something was wrong.”
He still did not discover the truth behind the study until the rest of the country did, Head said. He remained unaffected by the disease despite years of being in the study’s syphilitic group. His wife and children all ended up testing negative, but Tyson was reportedly still traumatized and fearful that the disease would show up somewhere in his family.
“After he found out about it, he had to live with it. That could bring a person down if he wasn’t strong. He was angry and he was upset,” Head explained.
Tyson died in 1988 at the age of 82 after an automobile accident. His memory, however, lives on in the foundation.
A little under 20 years ago, the descendants of the men began to meet in private. This year, for the first time, the public was invited to a ceremony—a “community day of healing” attended by 110 descendants, friends, community members, public officials and others—where the relatives lit candles in remembrance of the men. (The last man in the study died in 2004.)
“It was important that the people of Macon County knew what the descendants were doing, and it gave them a chance to come out and be a part not only of the healing but also remembering of the men,” Head said.
She hopes that in the future, more descendants “will come out of the shadows and be a voice for their fathers and grandfathers.”
Read more at the Associated Press.