Too Many Doctors Are Misdiagnosing Disease on Skin of Color

Lately, you’ve been experiencing fatigue and headaches. You notice a rash on your lower back where the skin, usually an even brown, is darker and slightly violet-tinged in some areas. A doctor sends you home with a prescription for a steroid cream, which seems to do nothing. Weeks later, the discoloration fades, but your muscles ache, and you still feel exhausted. Another physician finally runs the right tests and informs you that you have Lyme disease.

Similar scenarios play out again and again in doctors’ offices when people of color try to get help for illnesses that affect their skin.

Members of Black, Indigenous, and People of Color (BIPOC) communities with medium and dark skin tones face unique challenges that impede accurate, prompt diagnoses. These include a lack of access to quality healthcare in many neighborhoods and racial biases that lead doctors to distrust patients’ own descriptions of their symptoms and pain.

Medical training that focuses primarily on white individuals is another problem — and when it comes to diseases that affect the skin, issues are often hiding in plain sight.

Valerie Harvey, MD, MPH, a dermatologist and the president-elect of the Skin of Color Society — an education and advocacy group founded in 2004 — points out that there haven’t been enough clinical studies focused on skin conditions as they affect BIPOC groups.

“Certain conditions are more prevalent or present more uniquely across different populations,” says Dr. Harvey. “Some of these conditions haven’t been fully explored from a research basis.” She adds that there needs to be more training, “not only for dermatologists but for primary care physicians, too, to understand and be able to appreciate the nuances of how skin disease presents in different skin tones and hues and with different backgrounds.”

Diseases and conditions where this can come into play include:

• Melanoma Healthcare professionals often diagnose this dangerous skin cancer at a later stage in Black and Hispanic and Latino patients, per the Melanoma Research Alliance.

  [7]

  While people with light skin can develop melanoma lesions on the undersides of feet, on fingernails or toenails, on the palms of the hand, or inside the mouth, people of color more often develop melanoma in these areas. Individuals with lighter skin are more likely to find lesions on sun-exposed areas of skin. According to the Skin of Color Society, symptoms of melanoma on a fingernail or toenail can include a brown or black pigmented band.

  [8]

• Psoriasis On lighter skin tones, the condition typically looks red or pink with a silvery scale. Psoriasis may appear pink or red on those with light or fair skin tones. On medium skin tones, it can appear salmon-colored. People with darker skin tones might find that psoriasis appears violet or brown and is harder to identify.

  [9]

• Cellulitis This skin infection occurs when the immune system reacts to bacteria and causes a painful red mark to develop. This mark looks red on light skin, but on dark skin tones, it can appear dark purple. Warmth and swelling may also occur.

  [10]

• Vitiligo This condition, in which the immune system attacks pigment cells, results in white or lightened patches on the skin. Vitiligo affects all races, but as it progresses, it can be more distressing for patients of color because the discoloration is starker.

  [11]

  [12]

• Eczema According to the National Eczema Association, eczema patches on darker skin tones tend to look brown, violet, or ash gray — not reddish, as it typically does in patients with lighter skin.

  [13]

  People with dark skin are also more likely to develop small bumps on the arms, legs, and torso and around the hair follicles, as well as drier skin and dark under-eye circles that can thicken and become bumpy when scratched. Individuals are also more likely to experience post-inflammatory dyspigmentation. This is a condition in which the skin appears lighter or darker in areas the eczema has recently affected.

  [14]

A number of physicians and patients, including both people of color and their allies, are creating new ways to share images of skin conditions to show how they affect BIPOC adults and children.

In 2020, at age 21, a medical student in the UK named Malone Mukwende published the clinical handbook Mind the Gap, a photo-driven reference guide to signs and symptoms on skin of color. Available online for free, it has been downloaded more than 250,000 times in more than 100 countries; the actress Lupita Nyong’o has tweeted about it and Angelina Jolie interviewed Mukwende for Time.

Mukwende is now working on a related social platform called Hutano, on which people with a specific disease or condition that affects their skin can create a profile, join a community of others facing the same challenges, and discuss their shared experiences.

Another change-maker is a North Carolina mother named Ellen Buchanan Weiss, who discovered the lack of medical images of brown skin when her mixed-race son developed a rash at age 2. She started an Instagram feed called Brown Skin Matters where parents and the general public can upload images of what a skin condition — anything from shingles to cancer — looks like on a real patient of color (who remains incognito). An MD reviews the photos before Weiss posts them.

The company VisualDx, which makes desktop and mobile apps for physicians that help them recognize skin symptom patterns in patients with various skin tones with an assist from artificial intelligence, launched a larger-scale effort in collaboration with Project Impact, the Skin of Color Society, and the New England Journal of Medicine Group. Project Impact aims to raise awareness about misdiagnosis and share resources and strategies that help physicians more accurately diagnose disease in Black and brown skin.

“We’re focused on all kinds of bias — racial and gender bias — and the reasons doctors make mistakes,” says Art Papier, MD, a dermatologist at the University of Rochester in New York and the founder of VisualDx.

“The key to good AI is good data,” says Dr. Papier. “We’ve been very purposeful since the inception of our company to collect imagery from people of all skin tones.”

Papier says he was inspired to create VisualDx after witnessing a misdiagnosis early in his career. When he was in training as a dermatology resident more than 20 years ago, he was in the ER when a patient with dark skin came into the intensive care unit with a severe rash caused by a rare condition called Stevens-Johnson syndrome.

The patient said the rash had started two weeks earlier, but other healthcare professionals hadn’t recognized its severity because it looks subtler on brown skin, Papier recalls. “That made me get committed to the idea of getting as many images as we could find in patients of color,” he says.

A growing awareness of the impact of racism on dermatology is causing some institutions to come to terms with a problematic history and work to forge a new path forward.

A recent example involves Susan C. Taylor, MD, one of the founders of the Skin of Color Society and a coauthor of Dermatology for Skin of Color. In August 2021, Dr. Taylor became the vice chair of diversity, equity, and inclusion at the University of Pennsylvania’s Perelman School of Medicine (Penn Medicine) in Philadelphia.

Taylor was also named the university's inaugural Bernett L. Johnson Jr., MD, Professor. Dr. Johnson was a Black dermatology professor who distinguished himself for his work on diversity and inclusion during his more than two decades at Penn Medicine.

Acknowledging the various ways racism affects dermatology will hopefully pave the way to a healthier future for BIPOC patients. “I think there’s been appropriate attention finally being called to these issues,” says Harvey. “I hope it’s sustained and people will want to generally understand and improve, so we can deliver better care — excellent care — to our patients.”

• Doctors may be less likely to provide a timely diagnosis for skin conditions in people with medium or dark skin tones due to a shortage of studies and medical images in training materials.
• Conditions that present differently in those with medium or dark skin tones include melanoma, vitiligo, cellulitis, psoriasis, and eczema.
• Public, professional, and institutional collaborations and efforts like Brown Skin Matters and VisualDX are helping to close the knowledge gap and bring more timely skin disease diagnoses.