Black providers have been looking to the past as we confront the challenges of the COVID-19 crisis. Black Americans say they are less likely to get vaccinated for the disease compared to other ethnic groups. There are many causes for this, but some of it may be related to our country’s history of systemic racism.
From conducting experiments on slaves to treating black people for novel diseases without their consent, the black community had been made to suffer in the name of medicine in the past. The Tuskegee Syphilis Experiment is a part of this legacy. During the 1930s and 50s, the government knowingly lied to black patients while they participated in the study, leading to generations of distrust and skepticism within the black community.
Let’s revisit this period of history to gain insights into our present.
Searching for a Cure
Before condoms were invented, the disease known as syphilis was quite common back in the day. In the 1920s, providers estimated that around 35% of the reproductive age population had come down with the disease, and doctors didn’t have a lot of options when it came to treating it. They would use an aggressive treatment approach that included mercury and bismuth, but it only worked around 30% of the time. Worse yet, the treatment would often take months and the side effects were considered toxic, if not fatal.
In 1929, the stock market crashed, bankrupting most of the population. This left scant money for public health programs. In 1931, two researchers, Dr. Taliaferro Clark and Dr. Raymond H. Vonderlehr, began shadowing men all over the country who had the disease but were left untreated to raise support and money for a national treatment program.
They focused their attention African American males with syphilis. Thanks to the support of the Tuskegee Institute in Alabama, which wanted all the credit for itself, the two men created what became known as the “Tuskegee Study of Untreated Syphilis in the Negro Male.”
It included 600 black men, including 399 that had syphilis and 201 that didn’t.
But the researchers weren’t honest with the participants. They told them they were looking for “bad blood”, which was shorthand for a range of ailments and disease at the time, including syphilis, anemia, and fatigue.
In exchange for their participation, the men received free meals and medical tests, but they never were treated. In fact, many of them didn’t even know they had syphilis. They were told the experiment would only last 4 to 6 months, but it went on for 40 years.
It wasn’t until 1972 when the Associated Press wrote a story on the experiment that the public started to become aware of what actually happened all those years ago.
Under the Nixon Administration, the Assistant Secretary for Health and Scientific Affairs appointed an Ad Hoc Review Panel to investigate the incident. The panel was made up of nine members with a range of professional backgrounds and expertise. They found that the men willingly agreed to be examined, but the organizers withheld the true nature of the study. Both Clark and Vonderlehr intentionally misled the participants, so the men didn’t have all the facts before making decisions about their health.
Syphilis can be fatal if left untreated, and yet none of the men received treatment. In 1947, penicillin became the leading form of treatment for the disease, but even then, the researchers chose not to offer it to the participants.
After investigating the project, the review panel found that the experiment was “ethically unjustified,” considering the risk it posed to the patients. A month later, the Department of Health and Human services official ended the study, 40 years after it first began.
In 1973, the families of the men involved in the study filed a class-action lawsuit against the government. Just a year later, they reached a $10 million out-of-court settlement. As part of the agreement, the government granted lifetime medical benefits to the participants as well as burial services. In 1975, the men’s wives, widows, and children were included as well.
The last participant died in 2004 as well as the last widow in 2009. However, there are still 11 surviving children of the original participants. The program is still in effect today. It’s administered by the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention.
The experiment is a reminder of how black people were routinely denied care in the U.S.
The complicated legacy of the Tuskegee Syphilis Experiment lives on today. Black Americans tend to have less access to healthcare than their white counterparts. Lack of insurance, provider bias, and economic inequality all play a role, but providers of all backgrounds have a responsibility to overcome this legacy of distrust to make sure black Americans can get the care they need.