How a 1932 Federal Syphilis Study Helped Fuel Vaccine Hesitancy in Black Communities Today

A distrust of vaccines, as well as the distribution of misinformation about U.S. health care, is deeply rooted in American history

How a 1932 Federal Syphilis Study Helped Fuel Vaccine Hesitancy in Black Communities Today

More than 46 million people have gotten at least one dose of the COVID-19 vaccine so far. While that's a good start to beating the virus in the U.S., data shows a striking disparity in who those shots are going to: 64.3% of the doses administered has gone to white people. A shocking number when compared to the 6.5% that has gone to Black people.

While the disproportionate administration of vaccines in Black people can be attributed to a number of factors, there is a clear hesitancy keeping them from taking the shot. A distrust of vaccines, as well as the distribution of misinformation about U.S. health care, is deeply rooted in American history — which includes a 1932 study of syphilis in Black men that withheld lifesaving treatment and led to the death of dozens of people.

"It's just the deceitfulness that has taken place. We in the medical community have to do better — have to do more — in order to make sure that we even the playing field," Dr. Sampson Davis told Dr. Oz during a discussion about vaccine hesitancy in Black communities.

The U.S. Public Health Service Syphilis Study took place over 40 years in Tuskegee, Alabama. Today, it's also known as the "Tuskegee Study" or the "Tuskegee Experiment." The government and the Tuskegee Institute recruited 400 Black men with the disease and 200 men without it. They were promised free meals and free checkups — and free treatment. But it was all a ruse.

The men were never told they were part of a study — and thus could not give their consent to be part of medical research. And they never got the treatment either. The study was specifically designed to withhold treatment so officials could see how syphilis naturally progressed.

"They were victims, used as guinea pigs," Lillie Head told Dr. Oz. Head's father, Freddie Lee Tyson, was studied in Tuskegee.

"When my family first learned that my father was involved in this horrific study, we were traumatized, angry, disheartened and shocked at the fact that anyone could be treated in such an inhumane way medically," she added.

The study was originally scheduled to only last six months. But the ploy went on for decades.

Even when penicillin was discovered as a viable treatment for syphilis and became available in the late 1940s, study officials deliberately did not tell the men about it or offer it to them. And when some men obtained penicillin outside the study, officials wondered if that "defeated" the study.

By 1955, just about a third of the men with syphilis had died directly from advanced syphilis lesions. By 1972, at least 100 more men had died from complications, at least 40 spouses contracted the disease and 19 children were born with syphilis.

The study only ended then in 1972 when published news articles condemned and questioned it, and an advisory panel deemed it "ethically unjustified." In 1973, Congress held hearings on the study, and a class-action lawsuit was filed on behalf of the men and their families. A $10 million settlement was reached in 1974, and the Tuskegee Health Benefit Program was created to provide lifetime medical benefits and burial services to survivors. The program later expanded to include wives, widows and children.

The last survivor died in 2004. The last widow who was receiving benefits died in 2009, and as of March 2020, 11 children are still receiving benefits.

"The trust is the issue, it's not the vaccine. It's the trust, it's leveling the playing field, meeting people where they live to say, ''I'm here to give you the information and you can trust us not only because of what we're here to do — and we have great intentions, — but because so many eyes are watching. You can trust us," Dr. Davis added.

Lillie Head now leads the Voices of Our Fathers Legacy Foundation with other descendants. The group, Head said, aims to "transform and uplift" the legacy left by the study and "bring something good from an inhumane study." It changes and corrects the narrative about what happened, and it also connects descendants with each other.

"By doing so, we will remember these men's sacrifices, preserve history, foster social justice, public health equity, and begin to build a bridge to cross from mistrust to trust in biomedical research and in healthcare," Head said.

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