Celestine Tention’s grandmother used to chase antacid tablets with ginger ale, one after another, day after day.
Years passed before the pain was so bad that she had to get help, but by then there wasn’t much doctors could do. Tention’s grandmother moved from her home in Harlem to live with Tention’s family, and they did their best to care for her.
“We had to watch her — literally watch her — die from colon cancer,” said Tention, 64, of Philadelphia.
Tention thought back on her grandmother’s experience when, getting older herself, she started having acid reflux. Reaching for the antacid bottle one day, she froze.
“I said, wait a minute. History is not going to repeat itself,” Tention recalled.
That was eight years ago. She had some polyps removed during a colonoscopy, and her doctors determined that she should repeat the procedure every three years to make sure no cancer had developed.
Colon cancer is among the few cancers that are preventable with routine screening, because early malignancies can be removed during a colonoscopy. Yet it is the second-leading cause of cancer deaths in the United States, behind lung cancer.
New colon cancer cases have been steadily declining among older adults for decades, as a major push for early screening has helped catch problems early. But cases are rising among adults under age 50 who aren’t being routinely screened.
The startling trend prompted cancer agencies to recommend that routine screening begin at 45. But as with many aspects of the U.S. health care system, many people cannot find, much less pay for, the care they need.
“Undoubtedly, colorectal screening and outcomes are health-equity issues,” said Samir Gupta, a gastroenterologist and co-lead of the cancer control program at University of California-San Diego’s Moores Cancer Center, who has researched the issue extensively.
“Disparities are there by race and ethnicity, income level, education level, time in the U.S,” Gupta said. “The biggest disparity is screening for uninsured or Medicaid populations vs. other populations” such as people with Medicare and employer-based private insurance.
Cost of colonoscopy is a major barrier
For numerous reasons, Black people have a higher risk of developing colon cancer and higher death rates from the condition compared with white or Latino people. Compared with white men and women, colon cancer rates were 24% higher among Black men and 19% higher among Black women in 2019, according to a report by the American Cancer Society. All three groups get screened at about the same rate.
Research shows that the more glaring gaps in colon cancer screening rates fall along income and insurance divisions, rather than racial lines.
As many as 80% of people covered by Medicare — the federal insurance system for seniors and some disabled people — or private health insurance are up-to-date on their colon cancer screening. But just 30% of people who are uninsured and 50% of people with Medicaid, the state-federal plan for low-income Americans, have had their routine screening, according to data from the National Health Interview Survey.
Under the Affordable Care Act, insurance companies are required to cover without cost-sharing any procedure deemed an essential preventive screening. More recently, federal lawmakers fixed a loophole that allowed insurers to charge patients if polyps were removed during the procedure. People who are uninsured foot the bill themselves.
Part of the problem, doctors said, is that many people think a colonoscopy is the only way to screen for colon cancer. The procedure, done under sedation, involves using a small camera at the end of a flexible tube to scan the colon and large intestine for polyps — small growths of cells that can develop into cancer if not removed.
Without insurance, a colonoscopy could cost anywhere from about $1,000 at an outpatient facility to more than $3,000 if done at a hospital. Anesthesia is $500 more.
Lack of transportation, jobs that don’t allow sick leave — the test requires time for preparation and recovery — and lack of information about the importance of cancer screening are more hurdles.
“Historically, in this country, the main form of colorectal screening has been colonoscopy — it’s very effective, it’s widely available, and it’s been shown to reduce mortality from colorectal cancer,” said Shivan Mehta, a gastroenterologist and associate chief innovation officer at Penn Medicine. “But there are other strategies,” he said of the increasingly popular at-home tests to detect early possible signs of cancer.
“We can solve a lot of these equity issues [with at-home tests] because you’re not subject to all these other areas where things can fall off,” Mehta said.
Colon cancer education can dispel myths
Michael Goldberg, chair of the division of gastroenterology at Einstein Healthcare Network, has found success in bringing screening tests to people, rather than waiting for them to make an appointment.
Goldberg and his colleagues routinely hand out at-home test kits at churches in Einstein’s North Philadelphia neighborhood, where Goldberg said screening rates are especially low.
“Our goal is to educate people so they can make an educated decision — which we feel is screening,” he said.
Holding test kit distribution at churches and other community gathering places also presents an opportunity for doctors to talk to people about the risks of colon cancer and dispel myths about colonoscopy, such as that it will hurt.
Tention met Goldberg at her church, Enon Tabernacle Baptist Church in Northwest Philadelphia.
Too often, Tention said, “we listen to other people’s experience or other people’s lack of knowledge, and we take that as bible instead of doing our own research or talking to our own doctors.”
Part of the problem is finding doctors you feel comfortable talking to. Even Tention, who knew from her family’s experience the importance of getting screened, didn’t feel comfortable with the last gastroenterologist she’d seen.
But she liked that the Einstein doctors had taken the time on a weekend to come to her church and answer questions.
When the opportunity arises, Tention also tells people why they should get screened, though her encouragement is doused in tough love.
“Anyone who would not get it done is a fool,” she said. “It can save your life.”