As colon cancer rates are rising among people in their 20s and 30s, some adults in the US who are under 45 and experiencing worrying symptoms are struggling to get insurance coverage for colonoscopies, which can detect colon cancer.
The Affordable Care Act (ACA) requires insurance companies to cover colonoscopies for people over 45 “because it’s been recommended by the US Preventive Services Task Force”, says Caitlin Murphy, a cancer epidemiologist and professor at the University of Chicago. The ACA requires preventive screenings, including pap smears, for example, to be completely covered.
But, Murphy noted, for people “under 45, if you have symptoms like rectal bleeding, a colonoscopy would be considered a diagnostic test, and so it’s not going to be covered in the same way as a screening test would be”. She added that the cost of a diagnostic colonoscopy a given insurance plan will cover varies widely.
Hurdles to receiving a colon cancer diagnosis for young people are alarming as increasingly more and more research indicates that the rate of colon cancer is rising significantly in people under 40.
“The increase is proportionally a lot higher among adults in their 20s and 30s, as opposed to 40s,” said Paul Brennan of the International Agency for Research on Cancer. His research shows that while the risk of colon cancer continues to rise with age, the number of young people getting diagnosed is going up – while rates for people over 60 are declining.
Dominick, a 35-year-old software engineer living in Florida who asked to only be identified by his first name, learned about the distinction between preventative and diagnostic colonoscopy the hard way. His doctor recommended a colonoscopy after he experienced bowel movement changes, stomach pain and weight loss. At first, his insurance company said it would be covered. Then, three hours before the procedure was scheduled, he got a call saying the colonoscopy wouldn’t be covered because it was considered diagnostic.
“It was just terrifying in the moment. I’d already gone through my prep,” Dominick said. Preparation for a colonoscopy usually involves eating a low fiber diet for days, then taking a strong laxative to clear out the system.
The out-of-pocket cost for Dominick’s colonoscopy was roughly $2,000, which he paid for with a credit card because he didn’t have the cash readily available. The procedure later revealed a precancerous polyp, which he had removed – he said it’s scary to think about what could have happened if he hadn’t been able to find a way to pay.
For people who try to get insurance approvals for diagnostic colonoscopies, the process can take longer.
“It’s awful. I hear at least once a week, someone who has had symptoms for years, and they get stuck in these referral loops,” Murphy said. Doctors often attribute their symptoms to hemorrhoids or recent childbirth. “They go from doctor to doctor and don’t get evaluated. That’s a huge problem that seems fixable to me,” Murphy continued.
Murphy and Rebecca Siegel, an epidemiologist at the American Cancer Society, said the question on everyone’s mind is whether the recommended screening age should be reduced even further. But the answer is complicated. The recommended screening age was only lowered to 45 in the last few years and Siegel pointed out that when the American Cancer Society pushed for the change in 2018, there was substantial pushback.
“People were saying the risk was too low. We were going to take screening away from older adults who have a higher burden, and we were going to exacerbate disparities, because young people were going to be taking screening away from people of color,” Siegel said.
Since the age was lowered, Siegel and Murphy noted the data has found earlier screening likely helped more patients catch their cancer earlier. But “this is not something that’s done lightly,” Siegel said. There are only so many gastroenterologists, and a colonoscopy comes with its own risks.
For people under 45 who are struggling to get insurance approval while they are experiencing symptoms, a stool test such as Cologuard might help speed up the process, Murphy and Siegel suggested. Ideally, they added, someone who is experiencing rectal bleeding would just be able to get a colonoscopy approved immediately.
Murphy and Siegel are advocates for helping more people recognize potential symptoms of colon cancer and suggest that everyone who can should invest in research on the causes. There are “probably thousands of possibilities” as to what’s causing the increase in colon cancer, Murphy said, and researchers should start using methods “that allow us to at least get to a list of top 10 suspects by considering thousands of possibilities at once”.
One approach would be to focus on the “exposome”, which Murphy said “is sort of like a complement to the genome, but it’s the entirety of exposures in your lifetime”. Mass spectrometry technology now allows researchers to ascertain many lifetime exposures from small amounts of blood or plasma.
“From a big-picture perspective,” Murphy said, “we want to be careful not to chase this problem with lowering the screening age at the cost of ignoring what might be causing it.”
