People of colour with melanoma often face delayed diagnosis and fatal outcomes. Equitable access to healthcare systems informed by diversity can turn the tide against this largely treatable disease.
People of colour are less likely to get skin cancer from the sun’s UV rays than white people, but outcomes are significantly worse, often fatally. Photo: Michal Dziekonski
One was a reggae legend who sold more than 75 million records worldwide and the other a towering athlete at the peak of his sporting prowess. Despite their different paths in life, Jamaican singer Bob Marley and American NFL star Josh Paschal did share one commonality that spotlights a disturbing inequity in global healthcare.
Both men, who are people of colour, discovered dark lesions on their feet that defied speedy diagnosis and treatment. It proved fatal for Marley when he was just 36, while Paschal was luckier as his well-resourced medical team diagnosed the malady—malignant melanoma, the most dangerous type of skin cancer—and, through swift and successful intervention, ensured that his career continued to climb.
Only 4.5% of images in general medical textbooks feature black skin, deepening the racial inequality in healthcare.
The distinctly different trajectories of the illness in the two men aptly illustrates the persistent disparity in access to medical care for this largely treatable condition among people of colour.
While people of colour are far less likely to get skin cancer from the sun’s ultraviolet (UV) rays, there is frequently a delay in seeking treatment compared to white people. By then the cancer may have developed into a more aggressive state with risk of metastasis. It may have been misdiagnosed or even brushed aside. Outcomes for people of colour are significantly worse, often fatally, with the estimated five-year melanoma survival rate for black patients at 71% compared to 94% for white patients, according to the American Cancer Society.
The root of the issue is a tangle of genetic, physical, and societal factors: many black communities have a mistrust of the medical profession; malignant melanoma in black patients can affect any part of the body but often presents on the palms, soles of feet, in the mouth, or on genitals as opposed to skin exposed to sunlight; and medical education is predominantly oriented towards white skin. Only 4.5% of images in general medical textbooks feature black skin, deepening the racial inequality in healthcare.
“There is a supposition that people of colour can’t get skin cancer; [on the contrary] anybody with skin can get skin cancer,” emphasises Dr Jeanine Downie, a leading US dermatologist, former chief resident at New York’s prestigious Mt Sinai Medical Center, and the founder of New Jersey-based Image Dermatology.
“As an African-American dermatologist, [I find] this view completely inaccurate and offensive. Yet it persists across society and in the medical profession and is [the reason] why too many black people with developing melanoma are either told there is nothing wrong or the signs of cancer are not even spotted.
“One woman came to me recently and she had been told that the spot underneath her toenail was dirt. It was obviously not dirt and she ended up losing her big toe but, thankfully, she did not lose her life.”
Improving diversity in dermatology
The case closely resembles that of Bob Marley, who had a similar mark dismissed as a footballing injury. He was diagnosed with melanoma too late to be saved. Paschal spotted a dark patch of skin on the sole of his foot that was originally thought to be a result of intense training. It was monitored by staff at the University of Kentucky and the 1.9m tall defensive end, who now plays for the Detroit Lions, recovered after surgery and a course of immunotherapy drugs.
“If you catch melanoma early, there is a very good survival rate but, sadly, people are dying needlessly,” Downie says. “There is a change in attitudes and approach, but it is not swift enough.”
She says one of the easiest and fastest ways to improve outcomes for people of colour is to improve diversity, equity, inclusion, and accessibility in dermatology. At present, only 3.4% of dermatologists in the US are African-American, less than 5% are Latino, and less than 1% are Native American.
“Doctors must be comfortable diagnosing on all skin colours. It is a betrayal when someone has a concern and is told it is nothing, then two years later they find they have skin cancer.”
“We need more diverse training programmes, and we need diversity of thought so that every patient can be taken seriously,” Downie says. “The issues we see with late diagnosis and poor outcomes is not just a medical problem; it is intertwined with deep societal issues that are uncomfortable for many people to address. We can’t just say let’s speed up diagnoses—we must unpick the reasons why first.”
Downie, a member of the Skin Cancer Foundation, an organisation dedicated to improving prevention, detection, and treatment, has been a vocal critic of racism in healthcare and its ‘pernicious influence’ in dermatology, and campaigns for greater education, access, and awareness.
“In a sense, this all combines into a betrayal of patients with skin of colour,” she adds. “The lack of diversity in clinicians is not talked about enough. Doctors must be comfortable diagnosing on all skin colours. It is a betrayal when someone has a concern and is told it is nothing, then two years later they find they have skin cancer.”
The worry is compounded by projections of a steep rise in the incidence of melanoma—from 325,000 new melanoma cases and 57,000 melanoma-related deaths in 2020 to 510,000 new cases and 96,000 deaths a year by 2040.
Statistics on the link between melanoma and race are patchy, particularly in low- and middle-income countries (LMICs), but there is a clear pattern of inequality in multicultural, higher-income countries like Australia—which has the highest incidence of melanoma in the world, with even further increases projected.
Dr Michelle Rodrigues, an Australian dermatologist who consults at several leading public hospitals and private clinics in Melbourne, says differences in the clinical presentation of melanoma can be a compounding factor for people of colour in the Oceania region.
“Advanced presentation of skin cancer has also been identified in Australia’s Indigenous population as well as New Zealand’s Maori and Pacific population. Despite multiple genetic and social factors, including barriers in accessing healthcare services, impacting on patient outcomes, it is clear that the clinical differences in skin cancers in people with skin of colour can lead to missed or delayed diagnosis. This results in poorer clinical outcomes in people with skin of colour,” she writes in The Medical Journal of Australia.
Myths and misconceptions
Much of the melanoma burden will clearly fall on people with lighter skin pigmentation who are exposed to UV sunlight. Public awareness campaigns about the sun’s harmful rays and the need to wear sunscreen abound, but there is limited understanding of the effects of UV light on black and brown skin. White people are 20 times more likely to get melanoma compared to black people, but this figure has had unintended consequences for timely diagnoses among people of colour.
“This issue is a microcosm of healthcare inequalities that people with skin of colour face. The factors are, of course, complex and almost institutionalised.”
“It is true that people of colour are less likely to develop melanoma due, in part, to the protection that melanin provides from harmful or damaging UV rays. However, the fact that melanoma is less likely to develop in people of colour means it is often diagnosed at later stages, which typically makes treatment more difficult,” confirms James Merrick from the Melanoma Research Foundation, an independent organisation that promotes education for patients and physicians and supports research for a cure.
He blames the under-diagnosis largely on “cultural misconceptions or myths” around the impact of UV rays on skin colour, as well as inequalities in access to preventative healthcare through primary care and dermatological services.
“This issue is a microcosm of healthcare inequalities that people with skin of colour face. The factors are, of course, complex and almost institutionalised, but the hard reality is that if we do not get a grip then people of colour will continue to have worse outcomes and die from a condition that is treatable if diagnosed and addressed early,” Merrick says.
“It is mission critical to ensure that communities of colour have the awareness and education to dispel some of the common myths with respect to skin cancer and melanoma that have existed among them for centuries.”
The Melanoma Research Foundation convenes the Melanoma Global Coalition, comprising 44 organisations from 26 countries, to promote preventative awareness, greater research, more diverse clinical trials, and more equitable access to treatment. During Melanoma Awareness Month in May each year, it runs a #GetNaked campaign to raise awareness of melanoma prevention and encourage the public to have annual dermatological checks, besides featuring testimonials from people with skin of colour.
The growing public advocacy is backed by an increasing number of digital tools that make it easier for clinicians to spot melanoma early on all types of skin. One example is the Dream Initiative, a collaboration between pharmaceutical and skin product firms, which has produced a dermatology atlas of skin conditions to improve clinicians’ diagnostic fluency for different skin tones.
The scourge of social injustice
These initiatives enlighten and empower the medical community, but they cannot address the social determinants of health that impact access to healthcare.
A paucity of skin cancer research and a lack of diverse representation in clinical trials and dermatology practice lead to negative consequences for people of colour. Photo: Los Muertos Crew
“Numerous studies affirm that health outcomes and disparities, including in the case of skin cancer, result not strictly or even primarily from individual behaviours or genetics, but from policies, structures, and systems that shape social determinants of health—the conditions in which people are born, live, work, socialise, worship, and age that circumscribe individuals’ choices, access, and knowledge,” says leading dermatologist Dr Rebecca Vasquez, a board member of The Skin of Color Society, an international organisation promoting awareness on dermatologic health issues related to skin of colour.
“Social determinants of health, shaped by structural racism, explain many of the observed disparities in health, healthcare access and quality, and premature death, particularly among historically marginalised racial and ethnic groups. It will take advocacy across multiple levels to help eliminate these disparities.”
Vasquez, who is assistant professor in the Department of Dermatology at UT Southwestern Medical Center in the US, underlines that progress has been slow because of a paucity of research and a lack of diverse representation in clinical trials and dermatology practice. The Skin of Color Society has countered this with mentorship programmes to inspire the next generation of physicians to contribute to a greater understanding of issues related to skin of colour, as well as scholarships and grants for investigators from diverse backgrounds who are interested in skin of colour.
There is no one-size-fits-all solution and regional weather, a nation’s economics, and climate change all have influence. In Malawi, around 70% of the country’s significant albino community face a life expectancy of 30 years, compared to the national average of 65. Skin cancer is a significant contributor to the gap, exacerbated by lack of healthcare and the effects of a changing, warmer climate.
“Critical shortages of sunscreen, coupled with insufficient access to early screening and treatment, are leaving this community vulnerable to a largely preventable disease. The existential threat faced by Malawians with albinism underscores the broader, global clinical implications of climate change, and highlights that more needs to be done to mitigate its impact on vulnerable populations,” write the authors of a report in The Lancet.
Several organisations are developing educational tools to help people of colour become aware of their melanoma risk, recognise the early signs, and have the confidence to seek medical care that is aligned to their genetic and societal needs. Targeted educational programmes comprising pamphlets, social media messaging, and animated videos for the public; and textbooks and tutorials on diverse skin tones for clinicians are effective and can be tailored to different regions and cultures.
“There is a shifting narrative that really is looking at this topic through the lens of health equity and health access to improve outcomes for communities of colour,” Merrick says. “The voices and influences from trade associations, interest groups, and advocacy groups are getting stronger and we are making headway. But there is a lot more that needs to be done.”
The first steps of educating, enlightening, and enabling people of colour to reverse the melanoma disparity are clear; communities around the world now need wider political and economic support to facilitate representation of all skin colours within the healthcare sphere.