I am a cancer survivor. It feels great to say that 20 years after being diagnosed with colorectal cancer. But as is the experience of many African Americans, my journey was full of challenges — depression, unemployment and eventually, homelessness.
It wasn’t just the physical and mental toll of the disease that made it difficult. My address made it far more burdensome. I live on the South Side, where top-rate inpatient cancer care is inaccessible to many African Americans.
We have a top-rated hospital, UChicago Medicine, but it has been unable to fully accommodate an area where cancer rates are among the highest in the city and twice the national average. As a result, 67% of residents seeking inpatient care leave the South Side to receive it, according to a UChicago Medicine analysis.
Long-standing health care inequities contribute to cancer being the second-leading cause of death on the South Side, behind heart disease.
Recently, the American Cancer Society released more distressing news. Colorectal cancer, the second most common cause of cancer deaths, is on the rise for young people. It is estimated that by 2030, it will be the No. 1 most fatal cancer for people age 20 to 49.
There is never a right time to receive a cancer diagnosis. But my colon cancer diagnosis in 2003 could not have come at a worse time. I was a 36-year-old mother of five girls between the ages of 4 and 16. My husband and I were divorcing, and other than the support of a few family members and friends, I was completely on my own.
It was bad enough enduring several painful surgeries and undergoing exhausting radiation treatments. But on top of that, I was leaving the South Side to get my treatments. While it would have been far more convenient for me to get care in my community, I drove many miles, month after month, even in heavy winter snow.
No one should have to endure such a heavy burden. But on the South Side, people do it every day.
Having cancer isn’t just a physical issue. The emotional and financial toll can be just as devastating. After my surgery, I could no longer perform my job as a CTA bus driver and had very little disability coverage, so I couldn’t pay my bills. We eventually lost our home and had to move in with a family friend.
Finding hope
I was overwhelmed and felt defeated. But I had a wonderful nurse who helped me realize that I needed to survive for my children’s sake. I found hope again.
I feel blessed to have survived the surmountable toll of cancer. And I made a commitment to do whatever I could to make sure others don’t have to experience the trauma my daughters and I went through.
In 2015, I founded the Blue Hat Foundation to raise awareness among people of color about colorectal cancer, one of the deadliest forms of cancer among African Americans, and to advocate for equitable care on their behalf.
Our foundation’s mission is to educate, raise awareness and provide resources, including free screenings, to minority and other medically underserved communities in Chicago. We work hard to take care of the neediest members of our community and provide them with unconditional support.
But we can’t do it alone. We need the medical community to make bold moves.
UChicago Medicine recently announced an $815 million project to build a freestanding cancer pavilion on its South Side campus — one of the largest investments made by the academic health system and a major step toward promoting cancer health equity.
With a state-of-the-art cancer facility right in our backyard, we won’t need to travel outside our community for follow-up visits with the doctor. We will have better access to life-saving screenings. And it will be more convenient for us to participate in cancer trials and other studies that previously have largely excluded African Americans.
To bring about transformational change that drastically improves cancer outcomes, it’s going to take a targeted focus on African Americans, like UChicago Medicine’s new pavilion.
We need more health care leaders paying increased attention to people like my neighbors and me. It’s necessary. And it’s long overdue.
Candace Henley is the founder of The Blue Hat Foundation, a South Side organization that supports people with colon cancer. She chairs UChicago Medicine’s Community Advisory Council.
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