A Legacy of Racism in the Healthcare System: Learning from the Past and Working in the Present to Create a More Equitable Future
Black History Month is a time when we commemorate and celebrate historical icons who devoted their lives to justice, human dignity, and the liberation of African Americans. However, we must place these celebrations in their historical context, acknowledging the legacy of slavery, racial discrimination, and the multi-layered systemic and institutional oppression that continue to harm Black people in the United States.
Martin Luther King Jr. once said, “Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane.”
The history of medicine in the United States is rooted in racism and stained with fatal negligence and blatant malpractice on Black bodies. Growing up during the height of Jim Crow in the 1960s, Dr. Tom Ellison, the Medical Service Director and Principal Investigator for Made to Save grassroots partner PROJECT H.E.L.P., talked to us about the distrust many Black people have in the healthcare system.
“I’m from Birmingham, so we had a lot of distrust with the healthcare system, and they really wanted nothing to do with [Black people],” Dr. Ellison said. “It was also the indifference that you were treated with when you presented yourself for services or care…you simply were not worthy.”
As we analyze the history of the healthcare system, we first must acknowledge the contributions made to modern medicine by unwilling victims, how a legacy of racism still significantly affects present-day healthcare, and what must change to center health equity in the future.
For instance, Anarcha, Lucy, and Betsy were enslaved Black women from Alabama who contributed to the transformation of modern gynecology. During the 1840s, Dr. J. Marion Sims, who would become the “father of modern gynecology,” experimented on these three women, with neither consent nor anesthesia. By contrast, Anarcha, Lucy, and Betsey received little to no acknowledgment, despite serving as the “Mothers of Modern Gynecology.”
In 1951, a Black woman named Henrietta Lacks sought medical care at the Johns Hopkins Hospital for vaginal bleeding. After medical examinations discovered a large, malignant tumor on her cervix, doctors took samples of her cancer cells without her consent. Lacks’ cells were used in various experiments to study the effects of toxins, drugs, and viruses on the growth of cancer cells. Without her family’s knowledge, her tissues were patented and generated millions of dollars for medical researchers who unethically experimented on her body. Lacks’s cells are still used today to examine the effects of toxins, drugs, hormones, and played a critical role in the development of the polio and COVID-19 vaccines.
Perhaps one of the most infamous examples of medical racism and malpractice is the Tuskegee syphilis study beginning in 1932 and lasted 40 years. The United States Public Health Service examined the effects of syphilis on the body. Hundreds of Black men who had already contracted syphilis were told that they were being treated for “bad blood,” when in reality they were given placebos. Penicillin proved to be a highly effective treatment for syphilis in 1942, but doctors concealed this information from study participants because they wanted to analyze the long-term effects of syphilis. If left untreated, this disease can cause brain and heart failure, dementia, blindness, stroke, and death. As a result, 128 Black men who were involved died.
The extensive history of abuse on Black bodies, in part, led to “informed consent,” which legally requires healthcare professionals to educate patients about potential risks, benefits, and alternative options before conducting any medical procedure on their body. Since the implementation of this mandate, any patient has the power to approve, reject, or delay any medical procedure proposed by healthcare providers.
Despite some institutional improvements, racial disparities persist to this day.
According to the U.S. Department of Health and Human Services, Black women have the highest infant mortality rate, are four times more likely to die from complications during birth, and are twice as likely to receive late or no prenatal care compared to non-Hispanic white women. A report published by the American Medical Association determined that social determinants of health are a factor for healthcare disparities and account for between 30-55 percent of healthcare outcomes.
Since the start of the coronavirus pandemic, the racial disparities in our healthcare system have been highlighted. Black people are more likely to be hospitalized and die after contracting COVID-19. Despite this disparity, Black people have played a crucial role in helping to stop the spread of the virus. One of those instrumental players is Dr. Kizzmekia Corbett, whose years of research were central to the creation of the Moderna vaccine.
But given the historical racism within our healthcare system, it is understandable why some Black Americans may feel reluctant to take the COVID-19 vaccine. In response, many Black-led organizations across the country are working tirelessly to help rebuild trust and confidence in the healthcare system by educating their Black community members about the efficacy of the COVID-19 vaccines.
Established in 2017, Detroit Change Initiative’s (DCI) work centered around increasing voter registration and participation, enhancing voter protection laws, and enriching youth development in Detroit. When the coronavirus pandemic hit, the organization shifted its efforts to distribute free meals and personal protection equipment to impacted community members in Detroit.
During the development of the vaccines, DCI founder Norman Clement, volunteered his ten-year-old and six-year-old children to participate in the early trials for the COVID-19 vaccine for kids between the ages of five and eleven.
“My children were in the test studies of Moderna and because [Black children] needed to be represented and that representation matters,” said Clement. “I was definitely nervous, but I [would] rather put them in the safety measures and protocols to see how the vaccines work… because we didn’t know what the long-term effects would’ve been if they contracted the virus.”
DCI has partnered with other Detroit-based organizations, like Michigan United (another of Made to Save’s grantees), in their COVID-19 outreach work. Before the pandemic, Michigan United’s work focused on advocating for criminal justice reform, workers’ rights, and other issues that impact Black communities. Last month, DCI and Michigan United teamed up with Wayne County University, Wayne County, and local healthcare professionals to host multiple vaccine clinics in the community.
“We launched this program to get our communities educated so that [Black people] are not falling through the cracks of misinformation, disinformation, or ignorance,” said executive director for Michigan United, Ken Whittaker. “We have to actually break down history about the Tuskegee experiments and teach people what actually happened and how it’s different.”
Having vaccine clinics, informational sessions, and other forms of civic engagement in the present day can serve as a crucial step in rebuilding trust within the healthcare system for the future.
Nicole Dixon, executive director and co-founder of Made to Save grassroots partner Real Women Radio Foundation, emphasized that there is still much work to be done to achieve equity in the healthcare system.
“We will continue with civic engagement and fight for health equity through political power,” said Dixon. “That means educating people about voting because nothing great has ever been done in this country…unless it was done through the electoral process.”
Black Americans have been historically oppressed since the first African people were robbed of their homeland, culture, and freedom in 1619. Though much progress has been made, racism and discrimination still pervade every aspect of American society, including healthcare. Combating systemic racism within the healthcare system starts with learning from the past and doing the work in the present to create a more equitable future for all Black people.
Trey Young is a communications associate at Made to Save, a national education and grassroots campaign focused on empowering community-based organizations to run outreach programs that increase vaccination rates in their communities. Young interviewed and incorporated the voices of community leaders from Made to Save grassroots partners PROJECT HELP, Detroit Change Initiatives, Michigan United, and Real Women Radio Foundation to reflect on the historical injustices within the healthcare system. We owe these organizations a debt of gratitude as they continue to fight for equality and justice for all Black Americans.