Closing the Gap: Addressing Age-Related Disparities in Colorectal Cancer Screening
Written by Melissa Schenkman, MPH, MSJ
How many times have you not been treated equally or taken seriously by the healthcare system?
If you are a person in your 20s, 30s, or 40s, today the answer is likely either “at least once” or “more times than you care to remember.” From push back about the seriousness of our symptoms to lack of insurance coverage for tests, millennials and Gen Z can face uphill battles to accessing the preventive care they want and need.
The irony, of course, is that we live in a time in which healthcare equity is a nationwide often publicized goal that our public health system strives for. As defined by the Centers for Disease Control and Prevention, health equity is “the state in which everyone has a fair and just opportunity to attain their highest level of health.”
When we think of health disparities and equity, we typically think about race, gender, ethnicity, and sexual orientation, but what about age? Not for people 55+ whose healthcare needs are at least recognized, but rather equity for people under 50, who are commonly deemed ‘young and invincible.’
So many millennials, me included, would like to know why we too are not offered “a fair and just opportunity” to achieve our best health. And one area where that question could not be more pressing is colon cancer screening.
The number of people in their 20s, 30s, and 40s, getting diagnosed with colorectal cancer (CRC) is staggering—27,400 projected by 2030—yet access to colon cancer screening and diagnostic tests can be far more difficult for these age groups. As a result, millennials face age-related health disparities for one of the most preventable cancers in existence.
From the continual cycle of news stories reporting an increased risk of CRC in millennials to innovative new screening tests on the market, it can be challenging to know what direction to take, so we talked with Fola May, MD, PhD, MPhil, who is a gastroenterologist and a premiere expert in health disparities research in cancer.
She is the Associate Director of the UCLA Kaiser Permanente Center for Health Equity and Director of the May Lab, where her team’s research includes studies to understand barriers to cancer screening and the effectiveness of interventions to increase CRC screening rates.
May puts into context how we should look at the disturbing statistics, make decisions about CRC screening for ourselves, what we should know about young-onset CRC, genetic testing, and the actions we can take to address age-related disparities to improve healthcare outcomes for millennials.
Current state of CRC screening for millennials
Currently, the American Cancer Society and US Preventive Services Task Force recommended colon cancer screening age for people of average risk is 45. That’s when you can start getting screened and the cost is fully covered.
Clearly, millennials do not fall into this category with the oldest amongst us turning 43 this year and the youngest being just 28.
For us, colon cancer screening tests are not covered, except an initial screening receiving some coverage if you have medical history that puts you at a higher risk. This includes having family history of CRC or colon polyps (which requires your first colonoscopy to be by age 40 or at least 10 years before that family member was diagnosed), inflammatory bowel disease, or a genetic syndrome like Lynch Syndrome.
That’s why it is very important that every person in their 20s, 30s, and 40s, is aware of the symptoms of colorectal cancer and if you are experiencing them that you do not ignore them.
While many millennials may not be eligible for screening, we can be our own health advocates. We can recognize the symptoms of colorectal cancer—new and persistent diarrhea, constipation or abdominal pain, unexplained weight loss, low iron levels—and seek medical attention without delay when we are having one of these symptoms, so we can receive a diagnostic work-up.
From being below the recommended colon cancer screening age to missed opportunities for CRC education and awareness, millennials face many age-related health disparities in access and utilization of colon cancer screening.
“People still don't know that at 45 you're supposed to start screening. They're still thinking it's 50 or even older sometimes. To me, that's the biggest barrier. For young individuals, it is getting that knowledge out there and connectedness to primary care. In most cases, you need a primary care doctor to get a screening test and follow up after an abnormal screening test,” May emphasized.
“We need to encourage young adults to have a primary care doctor even when you feel healthy and to see that doctor once a year. It is important, as they are going to bring up all the things that you need to be getting checked out annually.”
Fola May, MD, PhD, MPhil, is an Associate Professor of Medicine at UCLA Health in the Division of Digestive Diseases, Associate Director of UCLA’s Kaiser Permanente Center for Health Equity, Director of the May Health Services Research Laboratory, Co-director of the Global Health Education Program at the UCLA Center for World Health, and a member of UCLA Health Jonsson Comprehensive Cancer Center.
She is also very active in advocacy work at the state and national level, including in her work as a Board Member at Fight Colorectal Cancer.
Learn more about Dr. May’s extraordinary work here.
There are multiple CRC screening options available with some out-of-pocket cost because of our age, including less invasive and time-consuming tests. According to the American Cancer Society, colon cancer screening options include:
Stool-based tests (at-home kits you return to your doctor/a lab)
Highly sensitive guaiac-based fecal occult blood test (gFOBT) - performed yearly
Highly sensitive fecal immunochemical test (FIT) - performed yearly
Multi-targeted stool DNA test with fecal immunochemical testing - performed every 3 years
Visual exams of the colon and rectum
Colonoscopy – performed every 10 years for a person at average risk if no polyps are found (or more frequently if abnormalities are found)
CT colonography (virtual colonoscopy) – performed every 5 years
Sigmoidoscopy – performed every 5 years
Ultimately, a colonoscopy is the gold standard, as it allows gastroenterologists to see your entire colon and remove precancerous polyps. Putting this into perspective financially, a colonoscopy’s average cost is $2,750 versus $5-25 for a guaiac-based fecal occult blood test and $25 for the FIT test.
“You should pick the test that's best for you. The one that you are interested in and that you know you are going to follow the directions for,” May said. “The important thing is to start your screening at the right time—age 45 or earlier if you have a family history—and do it at the right intervals. When you do, it can help save your life.”
Obesity and early-onset CRC
When you read about the potential causes of early-onset CRC in millennials, you will frequently find obesity at the top of the list. While it’s traditionally been linked to increasing overall cancer risk, obesity does not fully explain early-onset CRC.
In fact, the story is often the total opposite. The overwhelming majority of millennial-aged cancer survivors YMyHealth has interviewed had always maintained a healthy weight, exercised regularly, and ate healthy for years prior to receiving their cancer diagnosis. So, where does the obesity and early-onset cancer connection really come from?
“We've always associated cancer with being older. Now, we are seeing cancers that traditionally we saw in people who are in their 60s, 70s, 80s, increase in people who are younger,” May said. “We're pretty sure it's not for a genetic reason, as our human genes haven't changed since the 1950s. So, we're rapidly and very consciously looking at environmental factors.”
Obesity is one of them. It keeps coming up in research, as scientists search for the causes behind 17 different types of young-onset cancers that have recently been found to be increasing in millennials.
“I personally don't think it's obesity itself. I think obesity is a proxy for metabolic disarray. Either the way that we eat or the way that we process our foods, or the microbiome changes over time have led to a difference in the metabolic state of the human body in some people,” May explained.
Other people, she noted, have a different pathway to cancer or might have metabolic disarray but not develop obesity or cancer.
“So, yes, we do see a lot of people who don't have obesity who are getting early-onset cancers. You can't use that as a marker,” May said.
Additional causes under consideration are the highly processed foods that we ate growing up, antibiotic use, sleep deprivation, and alcohol consumption.
Dr. May speaking at the White House Cancer Moonshot Colorectal Cancer Forum, where she was one of the health experts invited to present at the 2023 panel. Dr. May was an invited to discuss equitable access to high-quality cancer care and the need to invest in research to enable us to determine how to deliver the best care and perform effective outreach to underserved communities. Dr. May shared with the audience that we cannot find solutions if we do not have the metrics that allow us to ensure that all communities are being accounted for when performing research.
Genetic testing for CRC risk
One preventive tool available that is not used enough is genetic testing. Genetics are a significant risk factor for CRC, and by finding out you’re at a higher risk, the sooner you can get screened.
May shared with us that genetic testing is especially important in families where there are multiple cancers at any age, regardless of cancer type.
“You hear about conditions like Lynch Syndrome, where you can have cancers that are related to the gastrointestinal tract, the colon, and beyond. Even some gynecologic cancers, like uterine cancer can happen with Lynch Syndrome. So, anytime I'm hearing about a family where multiple blood-related relatives are having cancers, I recommend that they see a genetic counselor,” May said.
A genetic counselor will talk with you about the medical history of your mother, father, brothers, sisters, and aunts and uncles (on both sides of the family). Then, they'll decide which genetic tests are appropriate for you.
Tips about genetic testing from Dr. May:
1) Find a genetic counselor who has completed certified training in genetics care
2) Seek genetics care at an academic or a cancer center if possible
3) Set aside a half hour (as painful as it is) and call you insurance company to talk to someone directly. Ask them if seeing a genetics counselor will be covered and, if not, how much your out-of-pocket costs will be.
4) Ask your counselor about the types of tests they recommended and make sure they are specific to you. It’s unhelpful to end up with an overwhelming amount of test results that might not be relevant.
Genetic testing’s benefits of early prevention and detection, May says, “are massive in some families.”
“For example, you might have been diagnosed because you were having colon cancer symptoms, but it also makes us check for gynecologic cancers and upper GI cancers. So, it can help you not only in your current condition but also help you prevent other cancers that you are predisposed to,” May said. “The other huge benefit is having the knowledge for your blood-related family members as well. This is priceless.”
Taking action to address disparities
Individual level actions
As millennials, we are one of the most proactive generations across the board and when it comes to our health. Despite facing age-related disparities, with our preventive mindset, we can make efforts to stay educated and up to date about CRC, spreading our awareness and knowledge to our friends. It is also key to be our own advocates in healthcare settings.
“The number one thing that I am advocating for among our younger adults and millennials is to take control of their own health. I'm trying to empower people to do this for themselves because there's only so much that the medical community and health systems are going to do,” May emphasized. “It's your health, and it’s your body. You have one body. You've got to get this right.”
Getting it right means “definitely seeing your primary care doctor at least once a year and talking about the tests that are indicated at each age that you reach,” she reminds us.
Dr. May at Fight Colorectal Cancer's Call-On Congress event in Washington, DC, in the see of flags on the National Mall representing the number of people 20-49 years old predicted to be diagnosed with colorectal cancer by 2030. Taking a photo that is a strong arm selfie like this and posting it on social media each March raises money for colorectal cancer research.
Collective actions
We can also work together as a group advocating for policy change at the national and state level. May is directly involved in this work as a Board Member at Fight Colorectal Cancer, the leading patient-empowerment and advocacy organization for colorectal cancer in the country.
“We're doing a lot of work on Capitol Hill at the national level and in each state to raise awareness about early-onset cancers, colorectal cancer, and beyond to make sure that Congress members and members of the Senate understand that this is a big problem. And, we are asking for more dollars for research in cancer prevention,” May explained. “We need more millennial voices in that work that we're doing in that space.”
There are also opportunities to be a part of community outreach and other support programs to help spread young-onset CRC education and awareness.
Improving healthcare outcomes for millennials
Disparities are not just defined by race, gender, ethnicity, sexual orientation, and older age. They exist for younger age groups too and in such a way that early-onset cancers are becoming one of the defining public health crises of our time for Generation Y, the millennials, and even some members of Generation Z.
We face unequal healthcare access (due to finances, lack of insurance coverage and time, etc.) and sometimes lack of equal recognition in the healthcare system, as we try to seek preventive care to lower our risk or catch cancer early.
We do not know when the enormous amount of data showing increased cases of young-onset CRC will change the minds of those who set screening recommendations, leading them to lower the age to below 45. Yet, what we do know is that each of us has the power to make a difference in the outcome of our own health and our loved ones.
While at YMyHealth we will continue to advocate for leaders to improve healthcare equity and access for people in their 20s, 30s, and 40s, at the same time, we call upon our fellow millennials and friends in Gen Z, to turn around the healthcare disparities we face with the tools that we do have.
Stay educated about colorectal cancer. Know the signs and pay attention to how you feel, and changes in your bowel habits.
Establish a relationship with a primary care doctor and see her or him each year. At your visit, talk about what screening tests you need to have and make the time to get them.
Learn your family medical history. If multiple members of your family have had cancer, seek genetic counseling and talk with your insurance company about coverage.
If you are experiencing symptoms that are out of the norm for you or are on the list of those related to CRC, go to your doctor and ask to be screened! And if your doctor will not order a diagnostic test, go to another doctor until you find one who will.
“I want millennials to be aware that the screening age is 45, but that if you have symptoms even before age 45, we're going to get you tested. We're not going to wait and wait until cancers are advanced and we can't do anything about it,” May emphasized.
“I think that millennials can teach each other and their families about colorectal cancer. Together, we can help prevent the devastating effects of colorectal cancer and other early onset cancers.”
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