Ask the Expert: Why Is a Lack of Diversity in Skin Cancer Trials a Problem?

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Spreading Awareness: The film Bob Marley: One Love broke records at the box office in February 2024 — and on SkinCancer.org. More than 1.2 million people visited our website to learn more about acral lentiginous melanoma, the rare type of skin cancer that led to Marley’s death. 

Q: People of color are underrepresented in all areas of clinical research, but especially in skin cancer clinical trials, because the disease is more common in white individuals. Why is this an issue, and what can we learn from more diversified trials?  

Kiyanna Williams, MD: We still do not know enough about skin cancer in patients of color, and this impacts our ability to diagnose it in its early, more treatable stages. Skin cancer presents differently in patients of color — occurring on different locations of the body and with different clinical features. When patients of color have skin cancer, the time it takes for them to get a diagnosis is much longer than it is for their white counterparts. Since they have had the skin cancer for a longer period of time, it tends to be diagnosed at a much worse stage. With melanoma, there are many disparities.  

People of color are more commonly diagnosed with a form of melanoma called acral lentiginous melanoma (ALM), a rare, aggressive and sometimes deadly type of skin cancer that appears on the palms of the hands, the soles of the feet or under the nails. This is the type of melanoma that killed singer Bob Marley. It often requires specialized treatment, including surgery and immunotherapy, and a multidisciplinary medical team. It takes longer for patients of color to receive treatment — even if you control for other factors like lack of insurance or proximity to a hospital. One study found that the five-year survival rate for Black people with melanoma is only 71 percent. 

Another issue is that the risk of skin cancer in patients of color is generally lower compared to white patients, so clinical suspicion may not be as high in this patient population. This can result in a lesser tendency to biopsy a lesion found on patients with darker skin. We should lower our threshold for doing biopsies on patients of color. Even if a lesion does not look like a “classic” skin cancer, I will go ahead and biopsy it if the patient is telling me that a spot is changing, itching or bleeding. 

There is also a lot of misinformation out there that more diversity in research could help correct. For example, some physicians tell patients of color that they don’t need sunscreen. While it’s true that having more melanin in your skin provides some UV protection, it’s not enough. (The darkest skin tone only provides the equivalent of SPF 13.) Everyone still needs to wear sunscreen to protect against skin cancer and other skin problems, such as hyperpigmentation.  

We have to increase patient and provider awareness and make sure people of color know that they should be getting annual skin cancer checks. They should also learn to do regular skin self-exams to look for anything new, changing or unusual, as The Skin Cancer Foundation’s Big See campaign teaches. And find a dermatologist they like, so they can follow up. 

Across the board in dermatology, there is a massive lack of proper representation in research, and we won’t have statistical significance in our calculations unless we have a larger number of diverse patients participating. Why does it take longer from diagnosis to treatment in patients of color? Why do they have a higher morbidity and mortality rate from skin cancer? We need more people of color in skin cancer research to help answer these questions and get them better care.  

Diversity in research is important; the more we know, the better able we are to diagnose and treat skin cancer, and the better able we are to combat these disparities that are inherent in our society. — Interview by Amy Brightfield 

About the Expert:

Kiyanna Williams, MD, is a board-certified dermatologist and Mohs surgeon in Cleveland, specializing in skin of color, surgical and cosmetic dermatology.