The shameful legacy of Tuskegee syphilis study still impacts African-American men today
Herman Shaw was a 30-year-old cotton farmer in Tuskegee, Alabama, when he saw a flyer offering free medical care by the U.S. government.
This was back in 1932 and the Great Depression was bearing down hard on the already poor black farmers in the Deep South. Shaw jumped at what he said seemed like a godsend at the time.
“Every year they would give us a full examination and a free meal,” Shaw told The Baltimore Sun for a story in 1997. The men were also offered free burial insurance.
What Shaw would learn 40 years later was the U.S. Public Health Service was unwittingly testing him for syphilis, a little-understood sexually transmitted disease that was devastating black communities in rural Alabama.
What’s worse, even after Shaw tested positive for the disease — which can cause blindness, paralysis, heart failure, bone deformities and even death if left unchecked — he was never told, nor treated.
“The thing that disturbs me now is that they found a cure,” Shaw told the Baltimore Sun. “They found penicillin. And they never gave it to us. It vexed me awfully sadly.”
Shaw was one of the 600 African-American men chosen for the “Tuskegee Study of Untreated Syphilis in the Negro Male.” They were told they had “bad blood” and many underwent painful spinal taps. Of those 600 men, 399 had syphilis.
Even after the Centers for Disease Control in 1945 approved penicillin to treat the disease, the study that began in 1932 would continue until 1972 without the men being treated — all in the name of medical research.
Stanford sophomore Javarcia Ivory (biology, ’19), remembers hearing this medical horror story growing up in neighboring Mississippi. He vowed to become a doctor and help revive the lost trust in public health in the Deep South.
When Ivory learned about a Stanford-led research project in Oakland, one that would dig deeper into this legacy of mistrust stemming from Tuskegee, he jumped.
“As an African-American and someone who aspires to one day become a doctor, I just knew I had to get involved,” he said.
Researchers connect Tuskegee trials to lower life expectancy
“The (Tuskegee) study’s methods have become synonymous with exploitation and mistreatment by the medical community,” write Stanford Health Policy’s Marcella Alsan and her colleague Marianne Wanamaker at the University of Tennessee.
The two have found that the disclosure of the study in 1972 is correlated with increases in medical mistrust and mortality among African-American men. They published their findings in a working paper for the National Bureau of Economic Research last year.
Using publicly accessible data, the researchers estimated life expectancy at age 45 for black men fell by up to 1.4 years in response to the disclosure, accounting for about 35 percent of the 1980 life-expectancy gap between black and white men.
Alsan and Wanamaker used data on medical trust, migration and health utilization from the General Social Survey and the National Health Interview Survey, as well as morbidity and mortality data from the Centers for Disease Control and Prevention.
Their paper touched a nerve among some prominent African-Americans, some of whom praised the work as a model for understanding medical mistrust today.
“The story that Alsan and Wanamaker uncovered is even deeper than the direct effects of the Tuskegee Study,” wrote Vann R. Newkirk II in the Atlantic.
“Their research helps validate the anecdotal experiences of physicians, historians, and public health workers in black communities and gives new power to them,” Newkirk wrote. “These findings are also useful in framing health-care debates and discussions of health disparities today.”
Health disparities run deep
African-American men today have the worst health outcomes of all major ethnic, racial and demographic groups in the United States. Life expectancy for black men at age 45 is three years less than their white male peers, and five years less than for black women.
In the years following the disclosure of the Tuskegee trials, medical researchers have repeatedly pointed to the U.S. Public Health Service experiment as one reason African-Americans remain wary of mainstream medicine and health-care providers.
“Mistrust may function as a tax on the price you pay to see a doctor,” said Alsan.
To further test this hypothesis beyond their data research, Alsan launched a pilot project in Oakland this past summer to evaluate the willingness of black men to seek preventative medical screenings.
The Oakland Health Disparities Pilot Project partnered with Dr. Owen Garrick, president and COO of Bridge Clinical Research, an organization based in Oakland that helps clinical researchers find patients from targeted ethnic groups.
Alsan and Garrick worked alongside Stanford and UC Berkeley students, as well as recent EMT students from the Oakland community to help run the project.
“We believe that even if you remove all the obstacles: transportation, access to health care and insurance — if you don’t trust the provider, you won’t follow their advice,” said Garrick, a physician whose mission is to get more people of color involved in clinical trials.
“But if you can push through this issue of mistrust, then you really begin to reap the benefits of the wealth of our health-care system, and then take advantage of the things that we as Americans have been afforded,” he said.
Oakland barbers partnered with the researchers and the barbershops served as recruitment sites. Uber also donated rides to the clinic for screening services.
Some 200 men filled out a medical survey; of those, 60 then agreed to clinical care.
Chris Colter, a master barber and manager for Station 33 Barber Shop in downtown Oakland, was pleased to participate in the pilot.
“It feels good that we’re helping out the community and that we’re instrumental in helping black men with health issues,” said Colter.
The pilot results are encouraging, Alsan said, given the high number of those who took up the offer for medical screenings. The team is hoping to scale up the research if they secure additional funding.
Ivory spent his summer in the Oakland barbershops, urging patrons to fill out the surveys and get the free checkup.
“I was really surprised at how easily they opened up with me and how interested they were that I went to Stanford,” said Ivory, who intends to go to medical school and return to rural Mississippi to practice medicine.
African-American men have a 70 percent higher risk of developing heart failure than white men, prompting Ivory’s desire to become a cardiologist.
“Working in the barbershops really gave me an in-depth understanding of how important diversity and inclusion in medicine are for some American populations,” said Ivory. “Medical mistrust does not have to dissuade black men from seeking health care in contemporary America — but it does. And this has galvanized my passion for wanting to become a doctor.”
Berkeley graduate student Grant Graziani, three years into a PhD in economics with a focus on health policy, helped design and implement the Oakland study.
“One area that I think has gotten too little study is how race affects health outcomes,” said Graziani. “I think really zooming in on race and studying a diverse population pool is going to open up a new area of research with a lot of interesting policy implications. Ultimately we just want to help people have healthier lives.”
A Presidential Apology
Shaw was one of eight Tuskegee survivors invited to a White House ceremony in 1997, to meet President Bill Clinton, who formally apologized for one of the most macabre clinical trials in American history.
The last of the Tuskegee survivors, Ernest Hendon, died in 2004 at the age of 96.
“The wounds that were inflicted upon us cannot be undone,” Shaw said at the White House ceremony, after being helped to the podium by Clinton. “I’m saddened today to think of those who did not survive and whose families will forever live with the knowledge that their death and suffering was preventable.”
The valedictorian of his 1922 high school class had wanted to go to college to study engineering, but his father insisted he stay back to run the family farm. He died in 1999 at the age of 97.
Two years earlier, at the White House ceremony, Shaw still found it in his heart to say it was never too late to “restore faith and trust.”
“In order for America to reach its full potential, “Shaw said, “we must truly be one America — black, red, white together — trusting each other, caring for each other, and never allowing the kind of tragedy which has happened to us in the Tuskegee study to ever happen again."