PHILADELPHIA — Celestine Tention’s grandmother used to chase antacid tablets with ginger ale, one after another, day after day.
Years passed before the pain got so bad that she needed to get help, but by then there was little the doctors could do. Tention’s grandmother left her home in Harlem to live with Tention’s family, and they did their best to take care of her.
“We had to watch her – literally watch her – die from colon cancer,” said Tention, 64, of Philadelphia.
Tention thought back to her grandmother’s experience when, getting older herself, she started having acid reflux. Reaching for the antacid bottle one day, it froze.
“I said, wait a minute. History is not going to repeat itself,” Tention said.
It was eight years ago. She had polyps removed during a colonoscopy, and her doctors decided she needed to repeat the procedure every three years to make sure no cancer had developed.
Colon cancer is among the few cancers preventable by routine screening, as early malignant tumors can be removed during a colonoscopy. Yet it is the second leading cause of cancer death in the United States, behind lung cancer.
New cases of colon cancer have been steadily declining among older adults for decades as a major push for early detection has caught problems earlier. But cases are increasing in adults under 50 who are not routinely screened.
This surprising trend has prompted cancer agencies to recommend that routine screening begin at age 45. But as with many aspects of the US healthcare system, many people cannot find, let alone afford, the care they need.
“There’s no doubt that colorectal screening and its outcomes are health equity issues,” said Samir Gupta, gastroenterologist and co-lead of the cancer program at Moores Cancer Center in Washington. University of California, San Diego, which has researched the issue extensively.
“There are disparities by race and ethnicity, income level, education level, time spent in the United States,” Gupta said. “The biggest disparity is screening uninsured or Medicaid populations versus other populations,” such as people with Medicare and employer-based private insurance.
For reasons that are not fully understood, blacks have a higher risk of developing colon cancer and higher death rates from this disease than whites or Latinos. Compared to 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. The three groups are screened at approximately the same rate.
Research shows that the most glaring gaps in colon cancer screening rates are along income and insurance divides, rather than racial lines.
Up to 80% of people covered by Medicare — the federal insurance system for the elderly and some people with disabilities — or private health insurance are up to date on their colon cancer screening. But only 30% of uninsured people and 50% of people on Medicaid, the state’s 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 provide free coverage for any procedure considered essential preventive screening. More recently, federal lawmakers fixed a loophole that allowed insurers to charge patients if polyps were removed during the procedure. Uninsured people foot the bill themselves.
Part of the problem, doctors say, is that many people think a colonoscopy is the only way to screen for colon cancer. The procedure, performed under sedation, involves using a small camera on the end of a flexible tube to scan the colon and large intestine for polyps – small growths of cells that can turn into cancer if left unchecked. are not removed.
Without insurance, a colonoscopy can cost anywhere from about $1,000 in an outpatient setting to over $3,000 if done in a hospital. Anesthesia costs an additional $500.
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 other barriers.
“Historically in this country, the main form of colorectal screening has been colonoscopy – it is very effective, it is widely available and has been shown to reduce colorectal cancer mortality,” said Shivan Mehta, gastro- enterologist and associate director of innovation at Penn Medicines. “But there are other strategies,” he said of the increasingly popular home tests to detect possible early 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,” Mehta said.
Einstein Healthcare Network gastroenterologist Mark Goldberg has been successful in offering people testing, rather than waiting for them to book an appointment.
Goldberg and his colleagues regularly distribute door-to-door testing kits at churches in Philadelphia’s West Einstein neighborhood, where Goldberg said testing rates are particularly low.
“Our goal is to educate people so they can make an informed decision – what we think is screening,” he said.
Distributing test kits in churches and other community gathering places also gives doctors an opportunity to talk to people about colon cancer risks and dispel myths about colonoscopy, such as that it will hurt.
Tention met Goldberg at his church, the 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 a 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 tested, did not feel comfortable with the last gastroenterologist she had seen.
But she liked that Einstein’s doctors took 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 tested, though his encouragement is showered with tough love.
“Anyone who wouldn’t is a fool,” she said. “It can save your life.”