Long before the COVID-19 pandemic, people have been stressing the importance of diversity within medicine and connecting with physicians from minoritized and marginalized groups. Within the last few years, the demand has significantly increased, as conversations in health care have shifted to prioritize health equity, addressing social determinants to care for patients and developing greater pathways for diverse populations to secure careers in the medical field.
For Black patients and families impacted by rare disease, seeking health care professionals who are also Black can be uniquely challenging. Unfortunately, years of systemic racism in the form of discriminatory laws, education policies and other practices prohibited or limited the ability of many Black individuals from obtaining a medical education and subsequently accessing careers in rare disease.
Today, Black physicians make up roughly 5% of the current physician workforce (compared to 1.3% in 1900) — and an even smaller percentage specialize in rare diseases. According to the Association of American Medical Colleges (AAMC), the top five specialties for physicians who identify as Black or African American are: internal medicine, family medicine/general practice, anesthesiology, obstetrics/gynecology and emergency medicine. While the number of Black physicians has grown over the years, as many of those same laws and policies were abolished, many Black physicians continue to face challenges even still today as we drastically try to play catch up.
How did we end up here?
The underrepresentation of Black physicians in America can be traced back to after the Civil War, when Jim Crow laws, state and local laws that legalized segregation, were enacted. Such laws impacted many areas of life from hotels, restaurants, movie theaters to schools. This meant that Black students who wanted to attend medical school at a white institution were prevented from attending and either enrolled in Black institutions or opted for another career path. While it might sound like an easy choice, it wasn’t: Black medical schools didn’t have the means for large class sizes, which means very few applicants were admitted, forcing others to pursue very limited employment options.
While medical schools were being established throughout the United States, only seven schools were predominantly Black: Howard University Medical School, Meharry Medical College, Leonard Medical School (Shaw University), New Orleans University Medical College, Knoxville College Medical Department, Chattanooga National Medical College and University of West Tennessee College of Physicians and Surgeons.
In the 1880s, Leonard Medical School made history as the first institution in the entire country to offer a four-year program for medical students. Soon after, other schools across the nation began to follow suit by developing four-year curriculums. As medical schools continued to surface, there became a growing concern that medical education in the United States lacked standards and uniformity and needed to be reformed.
In 1908, the American Medical Association and the Carnegie Foundation for the Advancement of Teaching solicited the assistance of Abraham Flexner, an educator with a classics background, not medicine, to conduct a survey of all the 148 medical schools that existed at the time in North America. In 1910, he published the Flexner Report, which led to the transformation of American medical education by setting strict standards that included harsh criticism of Black patients, physicians and medical institutions. Flexner argued that, if not properly trained and treated, Black people posed a health threat to middle- and upper-class whites. His critique led to the closure of five of the seven Black medical schools that existed at that time, leaving only Howard and Meharry.
Despite desegregation and the eradication of other discriminatory laws and policies, the physician workforce has continued to lack diversity and attempts to increase Black medical student enrollment over the years have yielded slight growth. New research has shown estimates of the number of African American students who would have graduated from historically Black medical schools had they not been closed. Collectively, they could have produced a 29% increase in the number of graduating Black physicians in 2019 alone.
Where we hope to go
Today, many are hopeful that the overwhelming movement toward health equity and the acknowledgment of the need for diversity within medicine will lead to patients seeing increased representation and a shift in health outcomes. In December 2021, the AAMC reported that U.S. medical schools attracted and subsequently enrolled a more diverse class in the 2021-22 academic year, with increased numbers for Black, Hispanic and women applicants. The number of Black students entering medical school in 2021 increased by 21.0%. Black students made up 11.3% of first-year students in 2021, up from 9.5% in 2020.
While this is a great step in the right direction, it does not solve the immediate problem of rare disease patients seeking providers who look like them. It is clear that more concentrated efforts should be placed on attracting medical graduates to specialties that would allow for more Black physicians to be able to treat Black patients with rare diseases.
Thankfully, there is a growing interest in not just diversity within medicine and culturally competent care, but also rare disease diversity education amongst practicing physicians and medical students. The Black Women’s Health Imperative’s Rare Disease Diversity Coalition and other groups are working hard to ensure Black families impacted by rare disease get access to the care and treatments they need to not only survive, but to thrive. It may take some time, but the future does look bright.
Kimberly Ramseur is a Senior Policy Analyst and the creator of Rare Melanin.
