Chadwick Boseman and the changing landscape of who gets colon cancer

This article is reproduced with permission from STAT. It was first published on Aug. 31, 2020 Find the original story here.

People across the country are mourning the death of actor Chadwick Boseman, who died from colon cancer at the age of 43.

An actor best known for the title role of T'Challa in Marvel's "Black Panther," Boseman died on this year's Jackie Robinson Day, a day celebrating the legendary Black baseball player that Boseman portrayed in a 2013 film.

Boseman kept his battle with colon cancer private. Several of his movies, including "Black Panther," were filmed after he was diagnosed with stage 3 colon cancer in 2016.

Boseman's death, while a shock, reflects a rise in colorectal cancer rates among young adults. One of us (Y.D.C.) knew a Black man taken too soon by colon cancer. Tyrone Gayle, who died in 2018, was a political aide who had worked for Hillary Clinton and Kamala Harris, as well as being the little brother of a close friend. Learning he had been diagnosed with colon cancer was devastating. Even physicians are often surprised when a young man dies at age 30 from what is often considered an old person's disease.

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Boseman's death is reinvigorating discussions about the rising incidence of colon cancer in young people, meaning those under age 50, as well as about racial inequities in colon cancer screening and deaths from the disease.

On Twitter this weekend, many doctors engaged in education about screening guidelines and the disparate effects of colon cancer on Black communities compared to white ones.

The facts are these: Colorectal cancer is the third most common cancer in men and women (excluding skin cancer). Over the past decade, the rate of new colorectal cancer cases has been rising in younger individuals, although it is still relatively uncommon in this age group. In an American Cancer Society study of adults between the ages of 20 and 39, the rate of new colon cancer diagnoses increased by 1% to 2% each year from the 1980s until at least 2013. Even more striking, the incidence of rectal cancer rose 3% per year in adults in this age group over the same time. The result is that 1 in 5 cases of colorectal cancer are now in people between the ages of 20 and 54.

The cause of this uptick is unclear. It may be due to better screening of high-risk individuals, such as those with a family history of colorectal cancer or heritable genetic mutations, the latter of which make up 5% of cases. But this does not completely explain the increase, because individuals under age 55 are 58% more likely to be diagnosed with late-stage colorectal cancer, which may appear as symptoms such as a change in bowel habits, rectal bleeding, unintended weight loss, or fatigue.

The likelihood of surviving colorectal cancer largely depends on when it is diagnosed. If detected early, up to 90% of individuals survive for five years or more. But if found at more advanced stages, the five-year survival rate is as low as 14% across all races. This is especially worrisome for Black men, who are more likely to be diagnosed with advanced disease: Only 9% survive five years or more after diagnosis.

Non-Hispanic Black individuals have the highest rates of colorectal cancer incidence and death across all racial groups in the United States. Black Americans have a relative five-year survival rate of 58.1%, while that survival rate is 64.2% for white Americans. The reason for the gap is incompletely understood, but is likely due, at least in part, to a lack of research into minority health outcomes. The National Institutes of Health considers health care disparities as one of the most important issues facing the U.S. health system. Yet some — possibly many — in the scientific community have "not embraced the message."

A factor contributing to inadequate screening of Black individuals for colorectal cancer may be variability across different screening guidelines. Racial and ethnic variations in guidelines are not unique to colon cancer. For example, body-mass index recommendations for people of Asian descent vary from those for other races, as does breast cancer screening in Ashkenazi Jews. This variability, although appropriate, adds complexity to care.

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It is further compounded by inconsistency between organizations. For example, until the past year, both the United States Preventive Services Task Force and the American Cancer Society recommended that screening for colorectal begin at age 50 for all average risk individuals, regardless of race. In contrast, the American College of Gastroenterology has for several years recommended that Black people should start being screened for colorectal cancer at age 45, while the American College of Physicians advises that screening in Black men and women begin at age 40.

There is compelling evidence that both physicians and patients are not aware of the different recommendations for Black individuals, resulting in inadequate screening.

In 2018, however, the American Cancer Society shifted its recommendations for screening to start at 45 years old for all average-risk individuals. Though the guidelines from the U.S. Preventive Services Task Force have not changed, we hope the update from the American Cancer Society will lead to earlier screening in Black people.

Between the updated guidelines and innovative programs emerging from new research showing the effectiveness of patient navigator programs using Black barbershops to engage the community, we hope to see improved colon cancer screening in Black communities leading to earlier detection and fewer deaths.

In Boseman's case, diagnosed at age 39 and with a celebrity's access to world-class care, we cannot know if his race affected his outcome. We do not know his personal risk factors or family history, or the initial symptoms of his cancer. Yet his death creates an opportunity — an imperative — to call for better research, better screening, and better outcomes for colon cancer.

We must address inadequate knowledge of colon cancer symptoms among younger people, particularly in Black communities, and improve awareness of screening guidelines among these individuals and their health care providers. Without such action, cases like Boseman's and Gayle's will continue to occur. They may even become more commonplace.

Lydia A. Flier is a primary care physician at Mount Auburn Hospital in Cambridge, Mass., and an instructor in medicine at Harvard Medical School. Gabriela Rico is an undergraduate student and member of a Harvard Medical School outreach program. Yamicia D. Connor is an OB-GYN and a Commonwealth Fund Fellow in Minority Health Policy at the Harvard T.H. Chan School of Public Health. Connor and Flier are two of the co-founders of Race to Better Health, an organization that seeks to reduce health care disparities through interprofessional coalition building.