Colorectal Cancer Research, Health Inequities, and Advocacy: A Conversation with Dr. Fola May
Written by Melissa Schenkman, MPH, MSJ
Dr. Fola May is an Associate Professor of Medicine at UCLA and a leading voice in colorectal cancer prevention, research, and health equity. In this Q&A, Dr. May discusses her journey into gastroenterology, the current landscape of colorectal cancer disparities, and her work to improve screening rates and outcomes across different populations.
What brought you into the field of gastroenterology and colorectal cancer research?
Dr. May: I was always fascinated by the abdomen during my pre-medical training and medical school. I used to call it "the black box" because I was so curious about what was going on in there. I knew I wanted to do something in colorectal surgery or gastroenterology, and I ultimately went towards medicine rather than surgery.
When I had to pick a research focus during my training, colorectal cancer seemed like a great area. At that time, no one was really talking about colorectal cancer, especially early-onset disease in younger people, and certainly no one was talking about disparities. Ironically, right after I declared colorectal cancer as my research area, I found out that I had family members affected by the disease. So I feel it was meant to be, as my research ended up helping my own family.
What disparities exist in colorectal cancer across different populations?
There are many types of disparities in colorectal cancer. We have racial disparities, ethnic disparities, age disparities, regional disparities, and urban-rural disparities.
When we look at racial disparities, Native Americans have the highest rates of colorectal cancer in the United States, with Black Americans just under them. These two groups have the most cases, the most deaths, and unfortunately, their screening rates are lower than other groups.
For our Hispanic population, they actually have lower numbers of cases and deaths from colorectal cancer than white individuals, but they have some of the lowest screening rates. The Latino population is also experiencing a bigger impact of early-onset disease, which is why we focus on that disparity – not because of the overall incidence and mortality numbers, but because of the low screening rates and early-onset cases.
Regionally, it's the southern United States where we see the biggest impact of this disease across all ages. We used to call it the obesity belt or the metabolic belt, but it's also a cancer belt. Additionally, in recent years, we've been focusing on early-onset colorectal cancer in people under 50, where rates are unfortunately increasing.
What are the challenges and opportunities in addressing these disparities?
The tricky thing about colorectal cancer is that while we've had some successes – rates and deaths are down for individuals over 50 – for those under 50, rates and deaths are going up. So we still have a lot of work to do.
I think the biggest challenge is getting information out there. As someone who deals with colorectal cancer every day, it seems like everyone should know about it, but many people have no idea that colorectal cancer is such a major killer. We need to overcome the stigma, talk about it, and make sure everyone knows they should be screened at age 45.
There's also a nuance many people don't understand: if you develop symptoms before age 45, you should get tested earlier. Many people think they're supposed to just wait until 45, so there's a lot of misinformation we need to correct.
Can you tell us about your research on testing different interventions for screening among younger populations?
When the screening age was lowered to 45, our health system at UCLA identified about 25,000 people between the ages of 45 and 49 who suddenly needed screening, but there was no real instruction on how to get those people screened.
We designed a study where we split that group into four subgroups and tried four different approaches:
For one group, we sent a FIT kit directly in the mail
For another, we sent an electronic medical record message asking if they would like a colonoscopy
For the third group, we sent a similar message asking if they would like a FIT test
For the fourth group, we presented both options and asked which one they preferred
This gave us the opportunity to evaluate which method was most effective for encouraging screening in this age group. The publication will be out soon showing which method was most successful.
Tell us about the Colorectal Cancer Care Initiative with Fight CRC.
This is an incredible initiative that Fight Colorectal Cancer has been working on for years, bringing together patients, survivors, caregivers, and people involved in policy and research to understand the continued challenges in colorectal cancer care and establish metrics that we can all aim for as a country.
We've announced several goals, including increasing the screening rate in the United States to 80%. We also set a goal that 80% of people who have an abnormal non-invasive screening test, like a stool test, need to have a follow-up colonoscopy within three months.
The initiative goes beyond screening to address cancer care as well. There are goals about ensuring patients diagnosed with colorectal cancer get genetic testing, receive treatment, and have treatment started in a timely manner. It looks across the whole spectrum of disease from screening to treatment.
How does your advocacy work fit together with your clinical practice and research?
This has been a major highlight of my career. I discovered a few years ago that the best way to get the public to understand our research is to partner with people who are directly impacted by the disease.
I love that I can work in a clinical setting caring for patients one-on-one, while also developing research in my lab. But advocacy gives me the opportunity to talk to people who are invested on the patient side, which helps push our research toward developing policy.
I don't see the point of research and publishing papers if it's not changing how we deliver care in the United States. By being involved with organizations like Fight CRC and being an advocate as a physician-scientist, we've been able to push our research to policy and actually create change.
What advice do you have for primary care physicians working with millennials who might not yet be at screening age?
I try to remind my friends and family who are in that later Gen X, early millennial phase that it's really important to establish care with a healthcare professional. Often when you're young and healthy, you feel like you don't need a doctor. Statistically, women are much more likely to have a doctor, often because of pregnancy and childbirth bringing them into the healthcare system.
For men especially, it's hard to get young men attached to care. The first step is increasing awareness that even if you think you're healthy, you need a primary care doctor – someone you see once a year before you're sick.
Second, when you get into that doctor's office, be honest about your health and vigilant about your symptoms. Don't be embarrassed to tell your doctor about what's happening with your body – I promise they've heard it all before.
Even in your late 30s, you should be talking about colorectal cancer screening to determine if you have a family history, which would mean starting screening at age 40. If you have a family history of Lynch syndrome, which causes colorectal cancer, screening starts even before 40.
For those in their early 40s without family history factors, it doesn't hurt to start discussing the different screening tests with your doctor and determine what will be best for you when you turn 45. This should be part of the conversation with your primary care doctor in your late 30s and early 40s, so you have a plan ready when you hit 45.
What upcoming research or initiatives are you excited about?
We have a couple of papers coming out from our lab that I'm excited about. I also recently joined a panel with the NCQA (National Committee for Quality Assurance), which makes metrics for quality of care. We're creating a new metric to measure how many people in health systems who had an abnormal screening test received appropriate follow-up care.
This metric doesn't exist right now, and I'm a true believer that if you don't measure things, you don't know there's a problem. If you don't know there's a problem, you can't develop research and solutions. Making the country measure this problem is the first step, and then we can develop better solutions. It's an honor to be on that panel, and though it will take a few years to complete all the steps, I'm really excited about what this will mean for improving care.
Want to hear more from Dr. Fola May? Check out the YMyHealth podcast!