Editor’s Note: Dr. Fola P. May is a gastroenterologist and cancer researcher at UCLA Health and in the Veterans Health Administration and a Quality Director for UCLA Health. She is on the faculty of the UCLA Kaiser Permanente Center for Health Equity where her research focuses on health care delivery, health equity, and health policy. The opinions expressed in this commentary are those of the author. Read more opinion on CNN.
It is harder because it was so sudden. It is harder because it is a disease that I know all too well. It is harder because he was young, gifted and Black. It is harder because our community has already endured so much in this cold and callous year that is 2020.
Like Kobe Bryant and George Floyd and John Lewis and the other Black men whose untimely deaths have occurred this year, the passing of Chadwick Boseman at the age of 43 sent shock waves through not just the Black community, but the entire world. His death from colon cancer leaves a vacuum in the world; on the silver screen Boseman embodied legendary men and myths that transcended race and appealed to the best in us all – historical figures, cultural icons and superheroes that it seemed he alone could portray. And off-screen, he graced us with his wisdom, strength, and compassion for others in a way that only a real-life superhero could.
I was not his doctor and cannot speak to the specifics of his clinical course with colon cancer, but as a physician and cancer researcher who has focused her career on disparities in colorectal cancer, I take no pride in sharing that my profession has failed at controlling this disease.
Colorectal cancer is the second most common cause of cancer-related deaths among men and women combined in the United States.
While traditionally a disease of older adults, it has crept into younger and younger age groups. There are also racial and ethnic groups that see its devastating consequences at a higher frequency. This heavy toll is particularly ironic given that the disease is largely preventable and 90% of the cases are curable if caught early.
The impact of colorectal cancer is unrelenting. And without diligently addressing four key features of this disease, it will continue to be so.
No longer a disease of older adults
I had the honor of participating in a public tribute to Mr. Boseman the weekend after his death. In the impossible circumstance of mourning a fallen hero while also fulfilling a responsibility to provide education on a disease that is killing too many, I found strength in the example Chadwick Boseman set. If he could continue to inspire millions in the face of his own mortality, I can surely exercise my craft in the midst of my sadness and shed light on this common disease far too often shrouded in mystery.
Boseman’s diagnosis with colon cancer at 39 is rare and far from the typical presentation of the disease. Traditionally, we think of colorectal cancer as a disease of the elderly. And, in many respects, it is. The mean age of onset is 66 years for men and 69 years for women.
The American Cancer Society estimates that only about 11 in 100,000 people will develop colorectal cancer between the ages 35 and 39, compared to about 120 in 100,0000 individuals ages 65 to 69.
But the unfortunate reality over the past two decades is that we are seeing this condition more and more in young adults, who we define as those under 50. The number of colorectal cancer cases in that age group is increasing by 2.2% per year.
Currently, 11% of colorectal cancer cases occur in this age group.
Symptoms too often ignored
In many cases, symptoms that are classic for colorectal cancer go unevaluated in young adults, largely because the disease is not highly suspected. Too often, the classic signs – blood in the stool, new abdominal pain or rectal pain– are explained away by the patient or by medical providers as benign conditions like hemorrhoids or chronic gastrointestinal conditions. For these individuals, work-up and diagnostic studies are delayed and the diagnosis is missed or pushed further along in time until the best options for treatment or cure are no longer available.
With the changing epidemiology of colorectal cancer, we must be more alert when signs of it are present in young adults. Gone are the days of this being a disease of the elderly. All patients with worrisome symptoms should be evaluated and considered for a colonoscopy, regardless of age.
The role of race and ethnicity
African Americans also must recognize their elevated risk. Incidence of colorectal cancer is 20% higher in Blacks than in Whites, and Blacks are 40% more likely to die from the disease than Whites. These disparities are rooted in long-existing policies and social determinants of health that include living environment, lifestyle factors, medical co-morbidities, differences in screening utilization and health insurance, as well as unequal treatment by health care systems. As a result, Blacks see disparities in every aspect of the colorectal cancer continuum, from prevention and early detection to treatment and survival.
Latinos and people of Native American or Alaskan Native descent also face unique barriers to colorectal cancer screening that contribute to low screening rates and poor outcomes.
Though public health efforts have focused on addressing disparities in these groups, there is an urgent need for national attention to these health differences. Particularly at a time when the Covid-19 pandemic has increased apprehension about going to health facilities, we need to inform patients that there are safe procedures in place to perform screening.
Cancer will not wait for Covid-19 to go away.
A lasting legacy through awareness
In the passing of Chadwick Boseman, I find only one sliver of solace: By honoring his memory and teaching young people, the Black community and other underserved populations about this devastating disease, we may be able to save lives. Everyone needs to be screened for colorectal cancer.
For those with a family history of disease, screening should start at age 40 – or 10 years before the age the earliest family member was diagnosed (whichever is earliest). To get this right, those diagnosed with colorectal cancer must share their medical history with other family members so that we avoid missed opportunities for screening. In addition, genetic testing should also be performed for families with multiple cases.
Individuals with predisposing medical conditions like inflammatory bowel disease or a history of radiation to the abdomen or pelvis should discuss with their medical providers the timing of colorectal cancer screening, as early screening is also likely indicated.
Get our free weekly newsletter
For African Americans without a family history of colorectal cancer, screening should begin at age 45. And non-Blacks without a family history should initiate screening at age 45 or 50. Fortunately, there are many screening options, including at-home, stool-based screening tests, in addition to colonoscopy. Implementation of programs to encourage screening in the United States has sharply decreased the number of annual colorectal cancer cases and deaths attributed to the disease since the 1990s.
However, with nearly 150,000 cases per year, more than 50,000 deaths per year, and too few people using life-saving screening tests, it’s clear our efforts to head off the disease are insufficient.
A public health priority set by the National Colorectal Cancer Roundtable, a coalition dedicated to reducing the incidence and mortality from colorectal cancer in the United States, challenges us to achieve the goal of getting 80% of Americans screened for colorectal cancer in every community.
“Every community” specifically refers to elevating screening rates not only for majority populations that have access to high-quality health care but also among low-income, underserved populations and Black and brown communities where we often see the lowest screening rates. These are also the communities in which we see countless barriers to screening, the highest rates of Covid-19 and the greatest potential to stem the impact of colorectal cancer in our nation.
We will never fully resolve the loss of such an extraordinary soul as Chadwick Boseman. He helped remind a generation of African Americans of the greatness from which they came and stirred our imaginations to dream of the heroes we can become. He has earned a place in our collective memory, and through his movies, we will celebrate his legacy.
As we honor him, we can also continue to highlight the disease that took this remarkable talent too soon. We must increase attention to the factors associated with colorectal cancer risk and the importance of symptoms and screening regardless of age, race, or historical marginalization. In doing so, we can continue to increase public awareness, patient empowerment, and health care access– and perhaps prevent another brilliant star from fading too soon.