Malone Mukwende’s eyes light up when he talks about why he wants to be a doctor. “Going to medical school came from a place of understanding that medicine is the study of people,” he tells me via Zoom. “Once you know how people operate when they’re well, you can work backwards and figure out how they’ll be when they’re not.”
But in his first weeks at St George’s, University of London, he noticed a disheartening pattern. Mukwende wasn’t learning about what many conditions would look like on Black or brown skin. For example, jaundice, which makes white skin look yellow, might look more subtle on a Black or Latinx person.
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“At the time it made me feel a bit alienated,” he tells Refinery29. “I was seeing that I wouldn’t be able to identify some of the things we were learning on myself. I started asking, ‘how would I identify it on darker skin?’ I couldn’t really get an answer.”
About 75% of the skin tones represented in medical textbook imagery were “light’ and only about 5% were “dark,” according to a paper featured in the National Library of Medicine. Even in South Africa — where 79.2% of the population considers themselves Black — the majority of medical students are learning from textbooks featuring mainly white bodies, reported the paper’s co-author Patricia Louie, PhD.
Ultimately, Mukwende took matters into his own hands. With the help of professors, the 20-year-old created a manual called Mind the Gap: A Handbook of Clinical Signs in Black and Brown Skin. The book, which is free to download, features images depicting what conditions — from ulcers to chickenpox to eczema — look like on a variety of skin tones. This problem is so deeply ingrained that Mukwende says one of the hardest parts of this project was just finding images of conditions on non-white skin.
Mukwende’s handbook offers new, more inclusive language for healthcare workers to use, because current descriptors often assume a patient is white. “When we use terms such as a patient going “blue” around the lips we need to also acknowledge how this may appear differently on darker skins,” he explains.
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But when Mukwende first conceived of the idea, doctors, friends, and folks at medical journals who he approached all expressed doubt. “So many people don’t think this is a problem, and they don’t realize the impacts of the problem,” Mukwende says. “Many people ignore it and didn’t see why it was so relevant.”
“One factor that may contribute to this disparity is that the most commonly used medical textbooks are written by white people,” Louie, an assistant professor of sociology at the University of Washington, tells Refinery29. “Because people commonly use their own lived experience as their point of reference, I think that the representation of darker skin tones was likely not part of the authors’ thought process when selecting images for these textbooks.”
Intentional or not, Louie says the absence of dark skin in learning manuals can be dangerous for BIPOC (Black, indigenous and people of color). “Black Americans are three times more likely than white Americans to receive a late stage diagnosis for skin cancer,” she explains to illustrate her point. “This may be because doctors are not trained to recognize how skin cancer presents on darker skin tones.”
“People [are] dying as a result of doctors not being able to correctly diagnose them,” Mukwende tells Refinery29.
The lack of representation of non-white skin color in medical literature about skin-based symptoms — and the fact that at least some white physicians insist this lack of representation isn’t a “real” problem — is just another example of medical racism. Already, many cities and states across the country have been calling racism a public health crisis, as increasing attention is paid to all the ways that systemic and institutionalized racism harms Black people’s physical and mental health. Black people are more likely to have hypertension, diabetes, and depression, research shows. They also represent about 23% of COVID-19-related deaths in the US, but make up only about 13% of the population. A 2015 study found that most healthcare providers appeared to have implicit bias, demonstrating a more positive attitude toward white people, and a more negative attitude toward BIPOC, reports The American Journal of Medicine.
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“[Findings] suggest that the impact of skin tone on health operates, in part, through increased exposure to discrimination among Black Americans with darker skin tone,” Louie says. She believes that medical schools should require a course on “the role that racism plays both within and outside the medical profession in shaping racial disparities in health.”
“Race would have no impact on health, if racism did not systematically influence access to power, resources, and opportunities to help manage and avoid disease,” notes Louie, who says she was “thrilled” to hear about Mukwende’s project. “In order for doctors to properly treat minority patients, it is pertinent that they understand the role that structural racism plays in producing these disparities in the first place.”
Mukwende says he’s already heard from doctors who’ve said they used his handbook to help treat patients. “It was like 24 hours [after the August launch] when someone reached out, and so it’s great to hear that it’s already having an impact,” he says. “That people are benefitting from the work.”
After the handbook came out, some of the same doctors and friends who told him this wasn’t a big problem realized the value in the work Mukwende was doing. “Once there was so much attention around it, they were convinced,” he says. “They saw the light we were seeing all those months ago.”