“The need for change bulldozed a road down the center of my mind.” Maya Angelou
If ever there were a need for change to our health care delivery system, it is now. To date, there have been more than 28 million confirmed cases of COVID-19 in the U.S. resulting in over 500,000 deaths. Black Americans that contract the virus are dying at nearly twice the rate of whites. Nevertheless, during the rollout of the COVID-19 vaccine, in 16 states that release data by race, Black residents have been vaccinated at significantly lower rates than white residents. In fact, in Pennsylvania 1.2% of whites had been vaccinated compared with only .3% of Blacks.
Factors such as reduced access to health insurance and reduced availability of medical resources, disparities rooted in structural racism, are, no doubt, impacting the availability of vaccinations in marginalized communities. Yet, that is only part of the story. In a December Kaiser Family Foundation poll, 35% of Black Americans adults say they definitely or probably would not get vaccinated. Similarly,41% Black women and 45% of Black men who plan to get the vaccine said they’d wait to see how well it’s working in others before getting it themselves. Why would communities that have been ravaged by a deadly virus be hesitant about taking a life-saving vaccination? While the Black community is not a monolithic group, shared cultural experiences inform beliefs, and historically, the relationship between Black Americans and the medical community has been problematic. This history is a structural barrier to health care access today.
What’s Past Is Prologue
Nineteenth-century physician, James Marion Sims, has been lauded for his contributions to gynecological surgical innovation, but Sims gained his surgical expertise by operating on at least 10 enslaved women – without anesthesia. One enslaved woman, Anarcha, endured at least 30 painful surgeries. Still, the medical community lionized Sims as the “father of modern gynecology,” erecting numerous monuments in his honor throughout the twentieth century.
From the 1920s to the 1970s, Native American, Puerto Rican, and Black women, were sterilized without their knowledge or consent. Many southern Black women such as Mississippi civil rights icon, Fannie Lou Hamer were admitted to hospitals for other surgical procedures and then sterilized without their consent. Other Black and Indigenous women were threatened with termination of welfare benefits or denial of medical care if they didn’t “consent” to sterilization. In fact, the practice of having medical residents perform nonconsensual hysterectomies on southern Black women was so prevalent that the procedures were euphemistically referred to as “Mississippi appendectomies.”
In 1932, some 600 Black men in Macon County, Alabama, were told that they could receive free treatment for bad blood through the United States Public Health Service (USPHS). 399 of those men had been diagnosed with syphilis, and these men received no treatment at all even after penicillin became a recognized cure for the disease. Their inability to access available treatment was not mere happenstance. In 1936 and again in 1940 USPHS researchers gave Alabama medical providers lists of the infected men’s names and asked doctors not give them treatment. Area doctors complied. This study became known as the Tuskegee Experiment, and both the American Medical Association and the National Medical Association voted to continue the study in 1969. The Tuskegee Experiment ended in 1972 only after a Public Health Service investigator leaked a story to the Associated Press.
Anecdotal accounts of forced sterilizations and unethical medical studies have been recounted in Black households for generations. When a study was conducted among Black and white residents of Detroit from January 1998 to March 1999, to examine impediments to Black participation in medical research studies, 81% of Black Americans knew about the Tuskegee Experiment while only 28% of whites had knowledge of it.
The troubled dynamic between many Black Americans and the medical community, however, is not rooted solely in 20th century occurrences. In 2002, the Institute of Medicine released the findings from a comprehensive 18-month study entitled “Unequal Treatment: Confronting Racial/Ethnic Disparities in Healthcare” that determined that racial and ethnic disparities in health care can be traced to “bias, stereotyping, prejudice, and clinical uncertainty on the part of healthcare providers.”
Similarly, in 2016, a study released by the official journal of the National Academy of Sciences, the Proceedings of the National Academy of Sciences (PNAS) linked racial disparities in pain assessment and treatment recommendations to false beliefs about biological differences between Black and white people. Black patients often have longer wait times in hospital emergency department waiting rooms than their white counterparts, only to have doctors spend less time examining them. These studies are in line with the lived experiences that many Black people have had in interactions with the medical community.
In numerous surveys, Black adults have consistently expressed more wariness and less trust in medical experts. This complicated dynamic, itself the product of generations of abuses, creates substantial barriers to care at a time when doctors and Black patients need to work in tandem to combat a public health emergency.
The Path Forward
Dorothy Roberts, founding director of the University of Pennsylvania Program on Race, Science & Society, insists that the framing of the issue is important. She states, ““If we start out with the assumption that Black people have to be convinced to trust the vaccine because there’s a problem with Black people’s attitude toward medicine and science, that’s the wrong approach.” Roberts places the onus of establishing trustworthiness in Black communities on medical and science professionals. That process begins with listening to and acknowledging that skepticism based on history and lived experiences is rational.
According to Tom Frieden, former CDC director, personal stories from people who are most like the people that they are trying to reach is a crucial component of any successful public health campaign. There must be “trusted messengers and trusted messages.” Since the message resonates better when disseminated by familiar and consistent voices, health officials should ask faith and community leaders to be at the forefront of messaging about the vaccine. Similarly, vaccine sites should be set up in the communities that need to be reached. In North Carolina, this meant that a church choir hall became a vaccination room and Sunday school classrooms served as post-vaccination observation spaces.
The relationship between the Black community and medical providers and researchers has been fraught with inequity. Distrust that has developed over generations will not be eradicated immediately. Acknowledging and correcting past injustice and current biases will be crucial to combatting both COVID-19 and health care disparities.