July 14, 2021 -- Colorful balloons, cake, and lots of smiles filled a socially distant gathering to celebrate my brother-in-law John Wagner’s 42nd birthday in late March 2021.
Only weeks later, we gathered again to celebrate his life after a 4-year battle with colon cancer.
John was among a growing number of people under age 50 in the United States diagnosed each year with colorectal cancer, the nation’s second leading cause of cancer deaths in both men and women combined.
Being Black meant that John was 20% more likely to get colorectal cancer, compared with whites -- which increases to 30% for Black men. Being Black also meant John was more likely to develop colorectal cancer at a younger age, more likely to be diagnosed further along in his illness, and more likely to die from the disease.
Sadly, for John, each of these statistics held true. He was diagnosed with stage IV colon cancer at age 38, and his symptoms were repeatedly dismissed by medical professionals because of his age -- and perhaps because of his race.
Studies have shown that nearly 70% of doctors show some level of implicit bias against Blacks. And from my perspective as a seasoned public health professional and his health advocate, John’s public insurance coverage at first undermined how quickly he got appointments, and the quality or diversity of treatment options provided to him.
But now, John’s story and statistics are a powerful call to action for the families of young Black men and women to get screened earlier than recommended.
Thirty-Eight and Thriving … or So We Thought
My husband’s brother, John, seemed to be a healthy man throughout his life. Born and raised in Louisville, KY, John was a big guy with a big heart and an infectious smile. He played semi-pro football, didn’t smoke or drink, and there was no known family history of colon cancer. Admittedly, John was overweight, enjoyed his “pop,” and his eating habits weren’t as healthy as they could have been.
Medical professionals brushed off his concerns and his symptoms at first. Instead, they repeatedly told John he was “too young” to be diagnosed with colon cancer. But thanks to a persistent emergency room nurse, John had a colonoscopy, and his life suddenly took a drastically different direction. All of our lives did. The family joined John on his health journey, and we learned much about colorectal cancer along the way.
We learned that obesity, physical inactivity, and unhealthy diet patterns increase the risks of early onset colorectal cancer. Those patterns are often tied to food deserts (neighborhoods with low access to healthy food) and lack of green spaces, which are common in low-income, racially minoritized communities that for a long time have been governed by policies that do not promote good life opportunities and health.
Due to the history of structural racism and its impact on the racial homogeneity and socioeconomics of neighborhoods where many young Black men and women in American reside, it is critical that young Black men and women get screened. Yet the danger is not only reserved for people of lower means. Just months before John’s death, the world mourned the loss of actor Chadwick Boseman, our Black Panther, to the same heart-wrenching disease.
After the Diagnosis, Make a Plan
Early on in John’s diagnosis, success with treatment gave him and our family -- including his fiancée and caregiver Sharise -- a sense that, “We can beat this.” When one is diagnosed with stage IV cancer, this essentially means one is beating the odds of how long they say you will survive.
Most people with stage IV colon cancer are given 24 months to live. John got 4 years. Four years during which he courageously fought the disease.
John’s diagnosis required all hands on deck for his care -- physically, emotionally, and logistically. The blessing in disguise is that I was able to leverage my work in public health across 2 decades to help us understand how to help John in his cancer journey and serve as his health advocate.
Working at The MayaTech Corporation has allowed me to gain knowledge of the different research institutes, associations, and the work of the U.S. Preventive Services Task Force in addressing colorectal cancer screening and treatment.
But I realize not everyone has the advantage of a family member with health care insights and networks, particularly in communities of color. So here are some tips for someone with a new colorectal cancer diagnosis:
1. Always advocate. Advocate for yourself with health care providers and insurance companies, and be an advocate for colorectal cancer awareness. John, Sharise, and our family actively posted his journey on Facebook to spread awareness about the cancer. My husband got screened at age 43, and our advocacy encouraged others in the Black community within our social circles to get screened.
2. Help is available. In addition to ensuring you have a trusted medical team, organize a support system or find community organizations to ensure your home (children, lawn, pets, laundry, etc.), meals, medication, and transportation to appointments are taken care of. The Cancer Financial Assistance Coalition has a searchable database of local and national organizations that offer financial aid and practical help to those impacted by cancer. National nonprofit CancerCare offers free professional support services and information to help people manage the emotional, practical, and financial challenges of cancer.
3. Make sure you fight! This is a fight that takes your daily strength and involvement, as well as a solid support system that actively fights with you and for you.
Celebrating Life With Colon Cancer
As a son, a brother, partner, friend, and uncle, John made an effort to enjoy life, especially during his fight with colon cancer. While I know my 5-year-old son and 3-year-old daughter will miss video calls, holidays, and racing remote-controlled cars with their uncle, I also realize we are fortunate that he was alive and present in their lives for as long as he was, given his prognosis. We are also grateful to Michael Driscoll, MD, and the incredible team at the Norton Cancer Institute, along with Hosparus Health, who made sure John was comfortable at the end of his brave journey.
The Preventive Services Task Force has recently lowered the recommended age to start screening for colon and rectal cancers from 50 to 45, which also means private insurers may cover this screening beginning at 45. So I hope that more families -- especially those with young Black men -- will be able to celebrate many more birthdays with their loved ones for many more years to come.
Kelly Wagner is senior technical vice president of The MayaTech Corporation, which works to tackle existing and emerging public health challenges through direct engagement with agencies, governments, communities, and individuals.