A: As many as half of Black Americans have expressed reluctance to take the COVID-19 vaccines (1), which some attribute to the enduring legacy of the egregious Tuskegee Syphilis Study.
Reticence to take the coronavirus vaccine is complicated. Listening and understanding history is critical.
Contrary to many peoples’ understanding of the Tuskegee Syphilis Study, Black people were not injected with syphilis bacterium. Rather, Black men in Macon County Alabama who had already contracted syphilis were recruited to participate. The US Public Health Service (PHS) and the federal Centers for Disease Control (CDC) began the study in 1932.(2) The men were told they would be treated for syphilis when in fact the purpose of the study was to learn whether syphilis progressed differently in Black people compared to white people. The federal government never intended to provide treatment, and though penicillin became available for national distribution in 1943, the men were not treated. At least 28 and perhaps up to 100 men died from syphilis or its complications by the time the study was finally halted in 1972. Hundreds went on to infect their wives and children through congenital exposure.(3)
For a thorough history, check out Bad Blood: The Tuskegee Syphilis Experiment, by James H. Jones.
To my mind, what actually happened in Tuskegee is even more horrible than the myths that circulate through our society.
First, the Study was developed to see if Black people were akin to a different biological entity than white people.
This repulsive idea is still rampant in medical training and practice suggesting Black people are somehow less than human.(4) We still see these differences in treatment throughout the entire healthcare sector, including in the ways Black people have been treated during the pandemic. There have been many reports of Black people being turned away at emergency departments; sent home without having been heard or treated, many of whom later died of the virus.(5)
Second, the federal government knowingly *withheld* an effective treatment for syphilis for 40 years. They withheld a lifesaving treatment from the same citizens they were supposed to protect.
This critical point bears important lessons for how we go forward from the pandemic, the vaccine, and beyond. Black peoples’ distrust of vaccines in particular and healthcare in general, goes much deeper than the Tuskegee Study. For one thing, Black people live in a country organized around structural racism. This means we are less likely to receive the health care we deserve.(6) We are more likely to live in neighborhoods with poor air quality (7) and fewer outlets to purchase healthy food.(8) We are more likely to work in low-paying “essential” jobs that make us more at risk for contracting COVID-19 (9). All of these factors make us more likely to die of the virus–which is to say we are living with and dying of racism.
Yet, at this moment, we have a chance to protect ourselves from a deadly virus that is tearing our country and our communities apart. In my opinion, vaccines have changed societies for the better and this vaccine has not come a minute too soon. Still, we should look carefully for potential side effects and serious adverse reactions. Because the vaccine came to market so quickly, we do not have long term studies and there are still many unanswered questions.
But one of the lasting takeaways of Tuskegee is that denying medical care is among the biggest breaches of trust between citizens and their governments.
As the vaccine rollout has expanded across the country, it’s already clear that Black people are much less likely to have gotten the vaccine compared to white people.
It is unlikely that this difference can be attributed to Black people simply not want to take the vaccine. Rather, ensuring equitable access to it is a bigger problem.
We must ensure that marginalized groups like Black, indigenous and people of color, immigrants, disabled people, and people in prison, can access COVID-19 vaccines. We must also ensure people are allowed to ask questions so that they can make informed decisions about their own healthcare, without coercion or deception. Finally, the legacies of Tuskegee and COVID both expose the depth of structural discrimination in the United States. Both remind us to believe patients when they express distrust or reticence about medical treatment.
I am so fortunate to have gotten one dose of the vaccine.
I long for an end to the loneliness and grief the pandemic has wrought and I believe the vaccine is one step in the right direction. Although the distrust of many Black people is absolutely warranted, we suffer more from not getting access to life saving treatments than being injected with nefarious vaccines.
We have seen time and time again that vulnerable people, and obviously Black people, are at the back of the line when it comes to access to care. The vaccine is no exception.
This guest post was authored by Dr. Tina K. Sacks, PhD, an assistant professor in the School of Social Welfare at the University of California at Berkeley.
It originally appeared as an op-ed on CNN on December 17, 2020, and has been updated for Dear Pandemic.
Links from text:
1. Kaiser Family Foundation
2. Brandt AM. Racism and research: the case of the Tuskegee Syphilis Study. Hastings Cent Rep. 1978;8(6):21-29.
3. Washington H. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. New York: First Anchor Books; 2006.
4. Proceedings of the National Academy of Sciences
5. California Health Care Foundation
6. Health Affairs
8. Diabetes Care