“I joined him when he provided free healthcare to local communities, and the experience — the way he interacted with people, the enormous gratitude they expressed — profoundly affected me,” says Dr. May, an associate professor of medicine at the University of California in Los Angeles, where she directs the Melvin and Bren Simon Gastroenterology Quality Improvement program. Nowadays, May, whose expertise is in colorectal cancer, follows in her father’s footsteps as the founder of UCLA’s May Laboratory, through which she aims to eradicate the inequities that lead Black Americans to a 20 percent higher incidence of colorectal cancer than white Americans. Black Americans are at higher risk, are less likely to be screened, are diagnosed at later stages, and are more likely to die from colorectal cancers than non-Hispanic white Americans, says May. “From diagnosis to treatment to survival and mortality,” she says, “Black Americans are disproportionately affected.” As part of Closing the Cancer Gap, a continuing series on cancer disparities, May explains the factors fueling the disparities in care for Black Americans and shares how this became her mission. The interview has been edited for length and clarity. Everyday Health: What drew you to healthcare? Folasade May: My unique upbringing brought multiple perspectives on the global Black diaspora, race, and social determinants of health, or SDOH. During college, I spent time working and studying in West Africa and Central America. Later, I did health-related work in South Africa, Uganda, Tanzania, and Peru. After college, I realized how deeply the things I’d witnessed with my father growing up had affected me. So, after some time in the UK, I came back to the States and started at Harvard Medical School. I found gastroenterology fascinating and went to UCLA for a fellowship. For my PhD dissertation, I wanted a topic that was understudied, relevant to my field, and affected a diverse population. Colorectal cancer met all my criteria. EH: At that point, colorectal cancer was the third most common cancer in the United States and the second leading cause of cancer-related deaths nationwide. But while cases were declining among white Americans, it wasn’t among Black Americans. Why? FM: Colorectal cancer originally affected more white than Black populations. Then, in the late 1960s and ’70s, Black Americans began developing the disease at higher rates and later stages. Colorectal cancer mortality in the United States is now 44 percent and 31 percent higher in Black men and women, respectively, than in their white counterparts. Since the human genome can’t change that quickly, something else was clearly happening in Black American communities. We now suspect several factors, including the environments and conditions in which people live and function. These include our built environment, the surroundings that we ourselves have made. Our daily habits, environmental exposures, what we eat, the obesity epidemic, maybe even things like early antibiotic exposure, and so much more: Together, they can determine what occurs 20, 30, 40 years later. EH: In what other ways did the disease appear differently in this population? FM: Black people in particular were increasingly developing the cancer in their forties or early fifties. The death of (multi-award-winning actor) Chadwick Aaron Boseman at age 43 in 2020 brought that point home. He’d first been diagnosed in 2016, too young for screening. We’d been taught in medical school that colorectal cancer was a disease of older people. But the age of onset dropped enough to prompt the USPSTF (the U.S. Preventive Services Task Force) to recommend a first screening, colonoscopy, or other test at 45 rather than 50. EH: Still, Black Americans are screened far less often than white Americans. Why is that? FM: Many people in underserved areas either don’t know about or don’t take advantage of this amazing tool. Compared with 8.2 percent of non-Hispanic white Americans living in poverty, more than 19 percent of Black Americans live below the poverty line, facing numerous obstacles to accessing regular medical care, tests, and treatments. Some barely make ends meet, have poor or absent insurance, hold several jobs while caring for relatives, and have few resources and little time to prioritize their health or get high-quality medical care. Black Americans also tend to have more chronic health problems, including overweight and diabetes, that increase colorectal cancer risk. Dealing with multiple medical problems, physicians have less time to discuss cancer prevention. Even if a physician suggests screening, it’s for something people aren’t aware of, haven’t seen in their own families, and hasn’t caused symptoms. They may believe the disease won’t affect them, and, compared with their other responsibilities, isn’t a priority. Also, a colonoscopy requires hours of preparation, time off work, a trip to a hospital or clinic, and a companion for the ride home — all on a weekday. I worry that we can’t eliminate disparities until we acknowledge these social barriers and provide support, better insurance, and improved access. EH: Does the test itself discourage screening? FM: Yes, it’s a big factor. There’s a stigma attached to anything involving the colon, the rectum, the bowels, and the stool. We’ve heard some men describe the colonoscope (the tool inserted through the rectum to visualize the colon) as something that “violates” an intimate area. This concern is rooted in the historical violation of Black bodies in this country. There are also myths about homosexuality. Some men fear that any instrumentation in the rectum is too “sexually adjacent.” I try to reassure them that the colonoscope isn’t a sexual tool and isn’t meant to violate. But some still refuse the test. EH: Can you offer alternatives? FM: We’re fortunate to have home-based screening tests to detect microscopic evidence of cancerous or precancerous cells. Yes, there’s squeamishness because these tests require people to capture and sample the stool, though without touching it. Colonoscopies also allow doctors to immediately sample or remove a suspicious polyp at the time of screening. But self-tests are equally effective, so I strongly recommend them for people nervous about or unable to access a colonoscopy. EH: How can we convince more Black Americans to be screened? FM: Patient education delivered in a way that’s understood and valued is one of the best strategies. Working with trusted community members — pastors, community leaders, organizers, as well as through barber shops, hair salons, or sporting venues — is extremely effective. We have several programs and grants that allow us to do that. Just as important, we must stop blaming patients for not prioritizing their care, especially when we know that providers don’t invest adequate time to discussing prevention. Our own study underlined that a doctor recommendation is one of the biggest drivers for screening. It also revealed that Black patients are less likely than white patients to receive a screening recommendation. EH: Do findings like this surprise you? FM: I’ve been surprised by so many things, including our inability to determine what’s causing these cases earlier in life. As for disparities, I’ve been surprised by the colleagues who can’t or won’t understand the structural barriers patients face and that those obstacles are true causes of cancer disparities. This isn’t a patient problem. It’s a social determinants problem. When a 45-year-old mother of three who has no childcare, is helping her mother-in-law, works three jobs, and barely earns enough to pay rent, forgets to schedule a colonoscopy, you have to appreciate why. I’m often shocked — not just in medicine, but in the world generally — when people can’t look outside their lives. I worry it means the medical profession has a long way to go. EH: What’s next on your agenda? FM: We’re part of a team awarded an $8 million grant from Stand Up to Cancer, an organization to advance education, awareness, and screening in underserved communities. I’m a lead for the study, working with Boston, Los Angeles, and South Dakota colleagues to improve colorectal cancer screening and outcomes in low-income Black, Latino, and Native American communities. The funds will help us collect and archive blood and biological specimens from diverse subjects for future research. Current research uses mostly specimens from white individuals, who more often volunteer for scientific research. In another study in my laboratory, we’re investigating ways to use technology and artificial intelligence to improve the delivery of healthcare services such as screening colonoscopies. We’re about to start a National Institutes of Health project that will fund at least five years of research in this area. EH: Your work takes you on very demanding, emotional journeys with patients. Every cancer researcher and clinician deals with this reality differently. How do you balance your work with your home life? FM: I don’t believe in “balance” in a traditional sense. Rarely is a given day or week balanced. One week may be all clinical while the next is filled with research activities. And there are times when I’m fully engaged with my 4-, 7-, and 11-year-olds’ activities. So, balance occurs over time. My husband is a busy physician as well — we met in medical school — who fortunately believes fathers should be as involved as mothers in raising a family. The kids can be a handful and I sometimes feel overwhelmed. But with two involved parents, help in the home, and grandparents around, I’m blessed to be able to donate some of my passion back to society. It’s true, though, that it’s always painful to deliver a cancer diagnosis. So, people consider It unsettling that I talk about cancer all the time. But when I’ve reached someone — even someone I didn’t mean to affect — it’s so fulfilling. My best moments occur when someone says they were screened because of something our programs did. I smile when I hear from someone who saw an article or watched a YouTube video and whose subsequent test revealed a cancer just in time to beat something they otherwise might not have survived. That’s when I know that all my time doing this, and my constant shouting into the universe about cancer prevention, is making a difference.
