Brykyta Shelton found herself standing in a checkout line of a big-box retailer, uncomfortably aware as a woman ahead of her stared at her sandaled feet.
Shelton had been taking medication for months for what her doctor said was toenail fungus, but one nail still looked gross.
After Shelton completed her purchase, the woman pulled her aside and said that, while she wasn't a doctor, she thought Shelton was dealing with something more serious than fungus.
"She’s like: 'I know I’m just a random stranger, but please, go get it checked out by someone else,'" said Shelton, who lives in a Maryland suburb of Washington, D.C.
Shelton, now 42, took the advice.
The initial lab work didn't give a clear diagnosis, but her new doctor said he was confident she had acral lentiginous melanoma, a form of skin cancer. Additional testing proved him right. While rare, it is the most common subtype of melanoma in Black people, like Shelton. It is the disease that killed reggae star Bob Marley at age 36, and is most often found on skin less frequently exposed to the sun, such as the hands, the soles of the feet, and under nails. Researchers do not understand what causes acral lentiginous melanoma, and they don't know how to prevent it. It is often overlooked in skin checks or misdiagnosed.
Skin cancer, in general, is often missed or misdiagnosed in Black patients.
Historically, Black people and those with dark skin have been left out of efforts to combat skin cancer. Long neglected by sunscreen manufacturers and a medical community lagging in diversity and cultural competency — the acknowledgment of a patient's heritage, beliefs, and values — many have not been informed about sun safety or how to check their skin for signs of damage or cancer.
To be sure, skin cancer rates are lower for people with dark skin tones. Melanoma is more than 20 times as common in white people as in African Americans, with an overall lifetime risk of 1 in 38 for white people compared with 1 in 1,000 for Black people. Melanin does provide some protection against sun damage, so those with more of it — those with darker skin — are better protected than those with fairer skin.
But overall, Black patients are more likely to be diagnosed with various forms of skin cancer at more advanced stages and have a higher mortality rate, said Dr. Janiene Luke, with the Skin of Color Society, a nonprofit that works to educate doctors and the public on skin health.
The five-year melanoma survival rate among non-Hispanic Black people is 66%, compared with 90% for non-Hispanic white people, according to a report by the Centers for Disease Control and Prevention. And 1 in 3 Black men or women diagnosed with melanoma in the U.S. die of the disease, compared with at least 1 in 7 for non-Hispanic white people, says the American Cancer Society.
Given the known disparities in outcomes, Dr. Valerie Harvey, president of the Skin of Color Society, said two areas of research are needed: studying educational initiatives to see if awareness might lead to earlier diagnosis and improved survival; and determining risk factors in patients with dark skin, especially factors leading to the occurrence of melanoma in places less exposed to the sun.
Improving cultural competency and diversity within dermatology is just one step toward improving diagnosis and outcomes. According to the most recent data, fewer than 3% of dermatologists nationwide are Black. Orthopedics is the only medical specialty with a smaller share.
Dermatology has traditionally been one of the most competitive specialties in medicine, said Dr. Michelle Henry, a clinical instructor of dermatology at Weill Cornell Medicine. In addition to stiff academic requirements, admission to dermatology programs also depends on connecting with mentors and extensive networking, which can be expensive. And that, Henry said, has traditionally created barriers for Black medical students who want to pursue dermatology.
"There are so many hurdles that make it difficult for a lot of students of color to do the things that they need to do in such an uber-exclusive and small space," she said.
Recent initiatives to help students overcome those barriers are beginning to work, said Dr. Susan Taylor, vice chair for diversity, equity, and inclusion in the dermatology department at the University of Pennsylvania and founder of the Skin of Color Society. Initiatives from the American Academy of Dermatology include holistic reviews of residency applications, mentorships, and programs to increase interest among and prepare high school students for college and medical school.
Medical app company VisualDX is working to reduce disparities in medicine through Project Impact by creating a catalog of images reflecting various diseases in different skin colors. Skin cancers may appear different on fairer skin than on darker skin, and because doctors may have been trained only with fair-skin depictions, the chance for misdiagnosis in people with dark skin increases.
Change has also come to the sunscreen industry.
Jorge Martínez-Bonilla, senior vice president and partner with Chicago market research company C + R Research, said failures within the medical community to provide adequate skin care for people with dark skin mirror the lack of availability of sunscreens to meet patients' needs, especially for Black people.
"What that has done is that it has pushed Black entrepreneurs, from one day to the next, to come up with their own solutions and their own products," Martínez-Bonilla said. "Not only from the lack of availability, but because these are the people who know their needs best."
Katonya Breaux is one of those entrepreneurs. She wasn't thrilled when, in her 30s and 40s, she noticed she was getting moles on her face and neck similar to those she'd seen on older family members while she was growing up. She assumed it was just part of aging. But her dermatologist said it was sun damage.
"I was, literally, shocked. I was like: 'But I'm Black,'" she said, adding that she had no experience with sunscreen growing up. "It was so foreign to me. I believed we just didn't need it."
After struggling to find a sunscreen that didn't leave a residue or feel like it was burning her skin, she worked with a chemist who helped her create a tinted mineral-based sunscreen. At first, she intended it just for her personal use, but she ultimately launched Unsun Cosmetics. The Los Angeles-based company educates about skin care and sells products designed for consumers with dark skin.
Shontay Lundy also struggled to find a sunscreen that didn't "leave a blue, purple, or other-colored hue on my skin." Until, she said, "I realized it didn't exist."
So, in 2016, she developed products that left no residue, ultimately launching Black Girl Sunscreen.
Education is fundamental to her company's advertising, Lundy said. "Our mission is to equip people of all ages and skin tones with the right sunscreen products to take their skin health seriously and protect themselves from sun damage."
Shelton, whose chance encounter in a store's checkout line led to her cancer diagnosis, said she has become an evangelist for skin self-checks and sunscreen, and is now known at her local pool as "the sunblock lady." The kind of skin cancer she had may not have stemmed from sun exposure, but it increased her awareness about skin damage and other types of skin cancers.
She has been cancer-free since the doctor successfully removed the tumor on her toe and she underwent chemotherapy and radiation. But the experience was traumatic.
"It's life-altering," she said.
Still, she said, she's resumed an active and full life. She said she will forever be grateful to the stranger who pulled her aside that day, as well as the doctor who disbelieved the first set of labs that came back, opting instead to trust his instincts to immediately begin treatment.
Tips for avoiding skin cancer for all skin tones
• Avoid direct sun, especially between 10 a.m. and 4 p.m. Keep babies out of the sun entirely.
• Use a broad-spectrum sunscreen with an SPF of 30 or higher every day. Reapply every two hours or after swimming or activity/sweating.
• Don't leave sunscreen in the car, because temperature fluctuations can cause it to break down and become less effective.
• Wear clothing that covers arms and legs.
• Wear a broad-brimmed hat to protect the face, ears, and neck.
• Wear UV-blocking sunglasses.
• Avoid indoor tanning beds.
• Examine skin from head to toe every month. Look for dark spots or patches, or growths that are growing, bleeding, or changing; sores that are slow to heal, or heal and return; patches of skin that feel rough and dry; and dark lines underneath or around fingernails or toenails. Be diligent in checking nail beds, palms, soles of the feet, the head, lower legs, the groin, and other places that get little sun. Contact a doctor if you have any concerns.
• See a board-certified dermatologist at least once a year for a full-body examination.
Sources: Skin Cancer Foundation, American Academy of Dermatology, Dr. Janiene Luke, Dr. Michelle Henry, Katonya Breaux
This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.