This year in the United States, an estimated 2 million people will receive a new cancer diagnosis, and a growing proportion will be younger adults and people of color. Many of these cases could be prevented — nearly 60 percent of colorectal cancers, for example, could be avoided with early detection.
Physician and UCLA researcher Dr. Folasade May is trying to understand why cancer screening rates are lagging, and what we can do to get people these potentially lifesaving tests.
On The Dose podcast, host Joel Bervell talks to Dr. May about what might be behind the rise in colorectal cancer among younger people, the barriers to widespread cancer screening — especially for underserved communities — and her work empowering people to save their lives. This episode kicks off a new series of conversations with leaders at the forefront of health equity.
Transcript
JOEL BERVELL: This year in the United States, an estimated 2 million people will receive a new cancer diagnosis. That’s a record-high number. And part of what is disturbing in this trend is that the number of younger adults with cancer is increasing. And of all cancer deaths in people under age 50, colorectal cancer is now the number one cause of death in men and number two in women. These statistics are in stark contrast to the wealth of information and modalities of treatment for cancer in this country.
So what’s going on here, and why is this happening here in the United States, where hundreds of millions of dollars are spent on cancer treatment every year? Is the work on prevention, screening, and wellness having any impact? In this episode of The Dose, my guest is Dr. Folasade May, a physician and researcher who is at the very forefront of working both in her lab and with her patients on these critical issues that are affecting the quality of life of so many Americans and their families, while also impacting people of color at disproportionate levels.
At UCLA, Dr. May is associate professor of medicine in the Division of Digestive Diseases and the director of the Gastroenterology Quality Improvement Program. She also serves as the associate director for Kaiser Permanente Center for Health Equity in the UCLA Health Jonsson Comprehensive Cancer Center, and associate director of UCLA’s Specialty Training and Advanced Research Program at the David Geffen School of Medicine. And she made time out of all of that to be here with me today. Thank you so much, Dr. May.
FOLASADE MAY: Thank you for having me. Of course I’m here! This is an amazing opportunity to share a little bit about what I think is important in cancer research, so thank you.
JOEL BERVELL: I love it. Well, right now, you have a comprehensive NIH grant that you’re using to work with multidisciplinary teams that include informatics, health services, pathology, and health economics to evaluate a multilevel health system intervention. The goal here is to increase guideline concordance surveillance colonoscopies for UCLA Health patients with high-risk colorectal polyps.
And I know that the intervention is using artificial intelligence and natural language processing to identify patients at the highest risk for developing colorectal cancer. So I really want to start the conversation there. You received that grant about 18 months ago, and your lab is focused on that work. What are the big questions right now, the questions that you think most urgently need to be answered in your field? And I actually just got off of my colorectal surgery rotation, learning all about colorectal cancer and how we treat it. So I’m really excited for this conversation because I think, I mean, as a student, I’m just geeking out right now. But yes.
FOLASADE MAY: Oh my goodness.
JOEL BERVELL: What are the questions do you think most urgently need to be answered?
FOLASADE MAY: Absolutely, and I’ll say I almost went into colorectal surgery. I loved . . .
JOEL BERVELL: Really.
FOLASADE MAY: . . . that rotation. I’m happy I didn’t because I love my career now, and I wouldn’t change it for anything. But I just was fascinated by the diseases that affect the abdomen, affect the colon, which makes sense because I’m a gastroenterologist. But I think at some point in my training I got really interested in understanding how we can improve population-level health. I had this amazing opportunity to go back and do a Ph.D. at UCLA in health policy and management and really kind of pivoted my career towards understanding these big problems in cancer and in cancer research, focusing specifically on GI cancers and having a heavy emphasis on colorectal cancer because, as you said, it’s become the number one cancer killer for men, the number two cancer killer for women.
And on top of that, we have profound disparities in this disease. It was an area that wasn’t heavily funded or studied at the time, and now it’s actually gotten a lot of attention, which is wonderful. I think that there’s some more awareness, but we still have so much work to do. You mentioned that grant. That was a mouthful. Unfortunately, we have to write grants that are a mouthful these days to get funding from the NIH. It’s a labor of love just to get them to get that first R01. But with that funding support, we were able to combine all these different disciplines into a study that’s going to help us look into health system interventions to better track patients and get them in for timely screening.
And that’s important because colorectal cancer is common. It has this huge burden in the United States, but it’s largely preventable. We think we can really prevent almost 60 percent of cases with effective screening, with early detection. But for some darn reason, people don’t want to participate in screening. They don’t like the idea of talking about their rectum, stool, getting a colonoscopy. So my career really is about making people aware that these technologies exist and helping people, kind of empowering them to save their own lives by getting screened at the right time.
JOEL BERVELL: One of the questions I always ask myself too is why is the incidence of cancers rising right now in young people? I know it’s a hard question. The answer’s multifactorial, but we’d love to hear your response.
FOLASADE MAY: Yeah, I call it kind of the golden question in cancer research right now. It’s really profound because when I was at your level of training, when I was a medical student, I was really taught that colorectal cancer was a cancer that affected people in their 60s and 70s. We never really considered it anyone less than 60, and I can’t teach my residents and fellows and medical students that anymore. I have to tell them to be aware about this disease and people in their 30s and in their 40s and in their early 50s. So we’ve seen a profound evolution in the epidemiology of this disease in a pretty short time. I’m not that old. It wasn’t that long ago that I was in medical school.
And the big question is why? The short answer is we don’t know. And the other part of that answer is that it’s likely a combination of many different environmental factors. We don’t think it’s genetic. It happened too fast for it to be a genetic change in the human genome. But we do think that there are several environmental factors that might be a cause here. So I like to think about them as things that are occurring in the environment that we are doing to the environment, and then also the ways that we’re living our lives. So environmental factors like radiation, pollutants, pesticides, plastics. There’s a lot of hypotheses about these things that we have more exposure to now than we did before the 1950s and 60s.
And then there’s certain ways that we live our lives that are putting us at higher risk, not only for early-onset colorectal cancer, but early-onset breast cancer, lung cancer, stomach cancer, prostate cancer. And we think that it has a lot to do with our lack of physical activity, our lack of exercise, our high intake of alcohol, our intake of tobacco, metabolic disarray, which we see in obesity, specifically type 2 diabetes. And then, unfortunately, what we eat and drink. So our diets that are heavily, I say, polluted with red meats, processed meats, things that we love, like our charcuterie boards that people probably have taken a little bit overboard and eating them a little too often now.
So it’s a combination likely of all of these factors that are culminating in some sort of gene–environmental interaction that’s predisposing us to getting cancer at a younger age. And I think that’s so unfortunate because it’s always horrible to give a cancer diagnosis. I don’t care how old anyone is, it’s terrible to have to say those words, “You have cancer.” But there’s something even more destructive to the human species when you do it to a 30-year-old, to a new father, or to someone who’s just entered the workspace, or someone who’s actively contributing to the economy or has a young family. So I think there’s a lot we need to do to better understand why it’s happening and to also raise awareness about symptoms and screening so that we don’t have young people dying from cancers.
JOEL BERVELL: I’m so glad you brought up screening because right now, one of the challenges in cancer treatment and prevention is recovering from post-COVID drop in screenings. That’s significant because we know that even slight delays can impact outcomes for patients. So what work is being done in making screenings attractive? Even with robust outreach, is there buy-in from target audiences?
FOLASADE MAY: Yeah, it’s not working. What we’re doing is not working. We could do so much better with screening, and I will say we weren’t doing well before COVID, but then COVID was another hit to our efforts. We do a little bit better with screening for the women cancers. So when we look at breast cancer and cervical cancer, our screening rates are actually pretty high across the nation, although I will point out low among certain racial-ethnic groups. So Black individuals, Latino individuals, people of American Indian, Alaska Native descent — those are populations that we need to work on across the board.
But I think what happened during COVID is that, rightfully, we pivoted a lot of our efforts to the acute situation of addressing the threat to humanity, which was this virus, right. It stopped people from going to the hospital, people missed their annual appointments. We have women now who just in that one year that they missed their mammogram during COVID because everybody was saying, “Stay home,” had breast cancer. And they were coming out now with breast cancers that they missed . . . we probably missed the opportunity to catch early because we weren’t screening them during those couple years of COVID. Same with prostate cancer, same with cervical cancer. And now, unfortunately, with colorectal cancer.
There is actually some national data, and I think this was released in JAMA about a year ago, that we’ve done a pretty good job in the last two years catching up with some of the cancer screenings that we do on a national level, like breast cancer screening, like prostate cancer screening, but colorectal cancer screening we tend to still lag behind. And in the populations that I’m particularly interested in, underserved communities, populations that receive care in federally qualified health centers, we have not rebounded.
We actually have a paper that’s coming out any day now from the May Laboratory that looks specifically at colorectal cancer screening rebound in federally qualified health centers. And we show on this paper, which is actually led by a medical student, a phenomenal medical . . .
JOEL BERVELL: Oh, wow.
FOLASADE MAY: . . . student in my lab, Matthew Zhao. He was able to do some really incredible analysis, looking at national data, to show that colorectal cancer screening rates are still lagging in underserved communities. So although the nation as a whole is doing better and has some signs of recovery, when we look at the people who are the most underserved, we did not recover. And in some of those populations, including Black individuals, the screening rates actually look like they might even be going down even more after COVID.
So we’ve got a lot to do. You asked me what the problem is. I think it’s awareness. I think it’s education. I do think it’s access, but I also think it’s competing demands. Whether you’re talking about the COVID epidemic or even after that, a lot of people, especially in underserved communities, have so much going on — multiple jobs, multiple people to take care of, stressors, socially, in their employment even — that it’s really hard to get them to focus on screening for a disease they don’t even have.
They might even have multiple medical problems they can’t even find time to cope with. And then now we’re going to ask them to go get a screening test for a disease that they’ve rarely heard of, it’s not in their family, and they don’t even have yet. It’s really hard to get people to recognize the power of screening and to participate at the right time.
JOEL BERVELL: Mm-hmm. Can you describe some of the barriers, especially for patients who may be getting their primary care from so-called safety-net hospitals? You’ve described some of them, but what are other barriers that patients have to face?
FOLASADE MAY: These patients face extraordinary adverse social determinants of health, and those social determinants of health affect their opportunity even to step into the clinic, right? So I talk about barriers at the patient–provider, health system, and health policy level, but I also talk about barriers at the before-care and after-care. So let’s start with the fact that 20 percent of people don’t even identify with having a doctor or a health system, okay? So that’s 20 percent of the population, mostly underserved, mostly Black and brown, who don’t even have a place to go when they get sick or if they want to get screened or preventive measures.
Those people are typically using emergency rooms as their primary care, okay? That’s that population unlikely to get screened. Immense barriers there, just getting them attached to health care systems. Okay, the next group of people, they have some attachment. They identify with a safety net, with a primary care provider. But again, when they come into the clinic, usually for their annual exam or a problem place visit, there’s so much focus on their active medical problems that it’s not the provider’s fault, it’s not the patient’s fault, but there’s often not enough time to talk about preventive health.
We’re dealing with the ongoing diabetes that’s out of control, the hypertension. We’re dealing with the fact that they need new medications refilled. It’s hard to find time in that short appointment, because now we have very short appointment times with our patients, to also address that they need to be screened for a bunch of cancers that they don’t already have. So that’s an immense barrier. If a provider is lucky to get to that conversation, then it’s the patient finding the time, finding the agency, finding the access to complete the test.
We’re lucky now in colorectal cancer that some of these tests you can do at home. They’re stool-based tests. And a lot of the research projects that I have, many of them were actually getting these tests into the hands of people so they can get screened in the comfort of their own home. But if you do want people to get that colonoscopy, that gold standard test, they got to take a day off of work the day of the procedure. They often even need to take some time off of work the day before to do the laxative prep, which cleanses the colon of all the stool that’s in there, and they’ve got recovery time.
Most of these people who are seen in safety-net hospitals, they don’t have jobs like I do, where they can take a Monday through Friday off, nine-to-five, to get a colonoscopy. That’s when we offer the service. So it’s almost like we’re putting people in the worst possible scenario by not giving them access to a potentially lifesaving procedure unless we’re offering it at night or on Saturdays and Sundays, which you rarely see.
JOEL BERVELL: Yep. How would you characterize the research environment right now?
FOLASADE MAY: Yeah. I think that the research in the cancer space is heavily leaned towards cure. Everyone wants to find a cure to cancer. We need those researchers. I love my basic science colleagues that are in their laboratories. They’ve made incredible discoveries. They’ve found chemotherapy, radiation, and technologies that have kept people who are diagnosed with cancer alive, and we need to continue funding in that space. But what I am urgently pleading for in the research space is that we pivot or we add additional funding, I should say, to the prevention and early detection side of the cancer care continuum.
So what do I mean by the cancer care continuum? We talk about a continuum that starts with risk factors for disease, to screening for disease, to diagnosis of disease, to treatment, all the way up to survivorship or survivorhood. A lot of the funding right now is on that treatment-type part of the spectrum. We are asking further to be even more funding on the prevention. Not only prevention of getting cancer but prevention of the other chronic diseases like diabetes, like obesity, that we know are linked to cancer overall and to early-onset cancers. So that’s the biggest challenge with the funding space is that it’s heavily leaned towards cures and treatment.
And then the other challenge that we see in the funding space is the types of cancers we fund. So there’s incredible support, as there should be, for breast cancer research. I mean, it’s the number one killer among women. It’s the most common cancer a woman’s most likely to get. But colorectal cancer does not see even a fraction of the funding that breast cancer research does. So we’re also asking for additional funding. We’re actually going to be in D.C. I call on Congress to ask for additional funding for colorectal cancer, which, as you said, is now the number one killer for men, number two for women, and increasing in young adults.
JOEL BERVELL: Mm-hmm. Absolutely. When you think about the barriers that patients are having to face as well, as you mentioned, having to take an entire day off. I remember when I was watching a colonoscopy just a few weeks ago, it was the first one I’d ever seen, but I didn’t realize just how extensive it is. You hear about it, but actually seeing the process, you’re like, “This is a full surgery.”
FOLASADE MAY: Yeah.
JOEL BERVELL: It’s like you’re doing the same exact prep for it. And then, as well for the research funding, you hear about breast cancer all the time, but colorectal cancer seems like there’s still a stigma just in terms of understanding it. I think it comes from partly we stay away from conversations of things that are happening down there, right?
FOLASADE MAY: Mm-hmm.
JOEL BERVELL: But I think it’s so important as these cancer rates are rising. Do you think there’s a lack of data at all? And if so, what kinds of data would be helpful?
FOLASADE MAY: Our biggest challenge in cancer prevention is that we have lack of national data. So I am privileged to have colleagues in the Netherlands, let’s say for example, where they have . . . imagine having an EHR where everybody in the United States is on the same EHR. So no matter what hospital a patient walks into, you can look them up in Seattle or Portland. I can look them up here in Los Angeles, and we would be able to see the same data for the same patient. You would be able to see whether they’ve been screened, I’d be able to see whether they’ve been screened.
We have nothing like that, right? We have this fractured system. We’ve got a thousand different EHRs or electronic health records. They don’t talk to each other. We don’t have collective data. We barely can even measure things. And then that becomes a problem for looking at how many people are participating in screening. And it becomes a problem with equity because we can’t really see what populations need more efforts. So, to me, that’s the biggest challenge we face in cancer research is a lack of data that’s coordinated across the country or even across states, right?
And then I think the other challenge that we face right now is just the opportunity to reach people the way that they need to be reached. So we’ve come a long way in implementation science of coming up with interventions that are effective. We know in colorectal cancer, for example, that patient education can work. Even educating providers is important because sometimes providers don’t follow guidelines. It’s not always the patient’s fault. We know that interventions that happen at the health system level are effective. We’ve done a lot of work about mailing screening tests to patients that they can do in the comfort of their own home. But what happens there is that not all populations are going to respond the same way to the same interventions.
So we have to find a better way to tailor the interventions to the unique populations that are currently underserved. You can’t take an intervention that I roll out here at UCLA Health in our middle class, pretty much affluent population, and go over to East LA or South LA, which is mostly Latino Black individuals, and give them the same intervention. It’s probably not going to work, right? We need to look at the language. We need to look at the literacy. We need to look at the color of the people on the pamphlets, right?
JOEL BERVELL: Mm-hmm.
FOLASADE MAY: We need to find ways to connect with people so that they know that that intervention’s for them and that they know that they need to take action and get screened as a result of communication that is talking to them.
JOEL BERVELL: Absolutely. And what about compliance? A team from your lab published in JAMA about how patients use and respond to a patient portal, MyChart type of prompt. How do patient outcomes fare with this type of digital prompting and interface? Does that research point towards evolving kinds of patient-facing tech?
FOLASADE MAY: Yeah. I really love what we’re seeing within the electronic health records right now. I call it nudge science because it’s happening on both levels, and I’m really excited about the provider side of it. So we are able to nudge providers in the electronic health record. Think about the primary care provider who’s overwhelmed with huge panels of patients, and for each of those patients has to, what, I think it’s 26 preventive health measures that they have to keep track of.
If we can nudge the provider who maybe didn’t get to talking about colorectal cancer screening or breast cancer screening and remind that provider, “Hey, you might not have seen that this patient’s overdue. Do you want us to go ahead and take care of that? Click here yes, and we’ll do it for you.” That’s a huge help. We’re offloading super busy primary care providers. So I love all of those interventions that we’re seeing in the electronic health record to do that, to really nudge and help our primary care providers.
And then now, as you alluded to, we’re doing it for patients. So we have a lot of interventions here at UCLA Health where we’re actually communicating with patients through the patient portal part of the EHR. We’re sending them letters and notifications. We’re saying, “You’re due for this test, or you’re overdue for this test. Click right here, and we’ll have someone call you to schedule it, or we’ll send you the test so that you can do it in the comfort of your own home.”
These are incredible interventions that I think patients are excited about. They’re more effective in younger populations. So when you’re talking about screening, which we do up to age 85, it’s a little bit harder to get our older individuals using electronic health records through their phones or their smartphones. But I’m really excited about the generations coming up because they would’ve grown up in that technology. But it really speaks volumes for the possibilities in cancer research and in screening.
JOEL BERVELL: Absolutely. And right now, significant resources are spent on end-of-life treatments for cancer patients. How do you envision shifting resources? So we’ve talked a lot about where resources are gone, where effort is given. How do you envision shifting the resources to meet this moment where young people and people of color are increasingly becoming cancer patients?
FOLASADE MAY: Yeah, the whole body of research around survivorship is going to have to change, right? Let’s just . . . for example, the average survivor was older 10 years ago. So the resources they needed were about getting them a safe place to stay, having them have aid at home, services so that they could follow through with their normal activities of daily living. And those are things that we actually got pretty good at. We were so happy and blessed when we had survivors, and we were very good at supporting them.
But now, if you have survivors in their 40s and 50s, they have very different resource needs. They often have young children at the home. They suddenly become, in households where maybe they had two individuals providing income, and maybe now only their spouse can provide income. So there are a lot of different things that we need to think about. Not only that, there’s a potential for those individuals for living an even longer period of time, as opposed to the 70-year-old with cancer who might only live for 10 or 15 more years. These people might live for 40 more years. So there’s incredible resource needs, and that’s an area that is growing in cancer research, kind of on that end of the spectrum.
There’s also a lot of work about financial toxicity. You can’t imagine the cost burden that these patients have accumulated over time, not only with their direct care but also those ancillary services they need. Every kind of complication from their hair, their skin care, their physical care taking care of their families, paying for those very expensive medications. So there’s a lot of research right now in financial toxicity and how we can set up systems to support these younger patients who are getting cancer so that they can live and not be in debt for their entire lives or pass on that debt to their children.
JOEL BERVELL: Mm-hmm. That’s so important. You participated in the White House Cancer Moonshot Forum organized by President Biden. You were there as a presenter on colorectal cancers. But I’m wondering, is there a substantive takeaway from that type of event in the face of the challenges that we’re facing with rising cancer rates, especially for younger people, as we’ve been talking about? Or is it just that the optics of even having such a gathering is the most important?
FOLASADE MAY: I was so honored to get that invitation last year to join the Biden Cancer Moonshot on colorectal cancer in Washington, D.C. And I really saw it as an incredible recognition of colorectal cancer as a growing concern in this country, but also a recognition for disparities. Because as you know, my work is really in health equity, looking at different populations and how we can get everybody to a point where they have their best possible health. So it was really an honor to be there, and I think you’ve hit it right on. I really do think that the optics of an event like that are super powerful.
I think it puts it at the dinner table for people to talk about colorectal cancer when, maybe before, this wasn’t a cancer that they were talking about openly and having conversations about getting screened. I will admit, though, that the follow-through is challenging. I think that there could be a better effort in taking events like that, coming up with a specific list of action items, making sure that those activities actually occur in the year ahead, and maybe even potentially bringing those people back together to talk about where there have been successes, where there have been failures, where there’s been change, and what needs to happen going forward.
I am really kind of craving now, almost a year later, an opportunity to get those same people in the room and kind of recognize that we haven’t really pushed the needle that much since that event and that there’s so much that we need to do, but that we still have the opportunity to do that. So I think my challenge to the Moonshot has always been continue the talk because it’s extraordinary and it brings things to the surface. But let’s think about actually acting on things that are going to make a difference.
JOEL BERVELL: Dr. May, I just have to say, as a student, you are an inspiration of mine. You’re incredible.
FOLASADE MAY: Thank you.
JOEL BERVELL: And I think this podcast is going to be one of the most important that people listen to. Thank you so much for your time here, for sharing your knowledge, for sharing just your passion, for health equity, and for tackling colorectal cancer. I appreciate you so much and thank you for taking time out of your busy day to be here.
FOLASADE MAY: Thank you so much for having me and for talking about these important topics. I really appreciate it.
JOEL BERVELL: This episode of The Dose was produced by Jody Becker, Mickey Capper, and Bethanne Fox. Special thanks to Barry Scholl for editing, Jen Wilson and Rose Wong for art and design, and Paul Frame for web support. Our theme music is “Arizona Moon” by Blue Dot Sessions. If you want to check us out online, visit thedose.show. There, you’ll be able to learn more about today’s episode and explore other resources. That’s it for The Dose. I’m Joel Bervell, and thank you for listening.