Watching the Tokyo Games this summer took me back to the carefree days of my early youth, racing through the open field behind my home and dreaming of becoming a track star. The goal wasn’t as improbable as you may think. My family is a speedy bunch; my nephew won a gold medal in track and field at the 2000 Summer Games. Cancer, however, had other plans for me.
When I was diagnosed with osteosarcoma at age 9, I didn’t really know what “cancer” meant. But I could hear my mother’s muffled cries in the next room when she thought I was out of earshot. Doctors found my bone tumor in the 1960s in the segregated south. My hometown hospital had an oncology ward, but not for Black cancer patients. Instead, I was admitted into the “colored ward” in the hospital’s basement, sharing a windowless room with pregnant women and people with broken bones.
My first exposure to health inequity in America was stark. While some patients received premium care a few floors above me, down in the basement doctors amputated my leg above the knee – a high cut they believed would give me the best survival odds.
They were right. Sixty years later, I’m still cancer-free.
While I had to let go of my track and field dreams, my experience with cancer gave me an even higher purpose than athletic glory. I have dedicated a big part of my life to supporting cancer survivors by fighting to reduce racial disparities in cancer care, and by spreading knowledge and awareness.
Segregated wards may be in the rear-view mirror, but the historic legacies of the medical mistrust they fostered are not. Too many cancer deaths today are still attributable to a patient’s “ZNA” – their zip code – instead of their DNA. Economic challenges are real for millions stuck in jobs that don’t offer health coverage or a living wage. People who cancel or miss appointments aren’t recklessly non-compliant or indifferent to their fate. They are afraid of getting fired for missing work. Or, sometimes, they can’t find a babysitter. Or a ride to the doctor. These people are suffering and scared, yet many decide to prioritize their family’s welfare over their own health.
More recently, the disproportionate death toll of COVID-19 in underinsured Black and LatinX communities was a shocking reminder of the vast swaths of minority patients that our healthcare system has failed to protect.
Yet, I never underestimate our human capacity to turn a crisis into inspiration to create change. When I lost my leg to cancer, my local community rallied around me during that terrifying month in treatment and the critical years to follow. The hospital gave me a job at the main reception desk. And, even though my parents couldn’t afford to take time off work with 10 kids to feed, they made sure our home was filled with family and friends committed to my well-being. That made all the difference in my life.
Today, I am an ambassador with the National Coalition for Cancer Survivorship (NCCS), and I’m partnering with Bristol Myers Squibb to share my story as part of Survivorship Today – an online resource that aims to help advance our collective understanding of what it’s like to live with cancer over the long haul.
Breakthroughs in cancer research have made it possible for more people to live with cancer than ever before. Yet, for the about 17 million survivors in the U.S. today, there are still lifelong physical, mental and emotional challenges ahead. Survivorship Today is primarily a resource for them, but it’s also for others who can gain a better understanding of what cancer survivors endure even after treatment ends. For many, remission is the beginning of a lifelong journey that includes psychological stressors that outlast their cancer treatment.
I’ve met brilliant, good-hearted oncologists who want to do more to meaningfully address long-term challenges that cancer survivors face, especially in light of the fact that the Black community has the highest death rate and shortest survival rate for most cancers. [1]
But how?
Dr. Karen Winkfield, executive director of the Meharry-Vanderbilt Alliance, persuasively argues that we must institutionalize medical practices that treat the whole patient, not just the disease. In a paper she published last year with a team of colleagues, “Why Racial Justice Matters in Radiation Oncology,” they outline a model called LEADS (Learn, Engage, Advocate, Defend, Support) aimed at reducing racial disparities in their field.
I’ve made it my mission to help educate healthcare professionals about health equity and help them be sensitive to the needs of their patients. For example, one meaningful thing oncologists can do is to be intentional with bedside manner. When doctors embrace their humanity over clinical detachment, it helps chip away at a long legacy of medical mistrust in communities of color.
Most people of color are aware of Tuskegee and other stories where minority patients were used as guinea pigs in unethical medical experiments. [2] Whether patients leave their first oncology appointment feeling compassion or confusion may determine if they feel optimistic about their cancer journey ahead.
Hospitals that include transportation costs as part of treatment packages address the number one barrier to adherence in communities of color, according to Dr. Winkfield. Offering childcare services and healthy meals can also break down barriers and make an outsized difference.
The oncologists I know are deeply committed to finding the right regimen to put cancer in remission for every patient they see. When they succeed, the achievement is a cause for celebration. Yet, from the cancer survivor’s perspective, the journey is just beginning. Oncologists who deliver good news to their patients do them a great service when they package it with community and survivorship resources for the uncertainty ahead.
As we all stare into an anxious future with no end to COVID-19 in sight, oncologists have an opportunity to bring some light into a season of darkness. They have an opportunity to rebuild trust and create more 60-year stories of survivorship like mine. I hope they seize it and honor the words of poet Maya Angelou, who wrote: “Do the best you can until you know better. Then when you know better, do better.”
Reference
[1] American Cancer Society. Cancer Fact and Figures for African Americans, 2019-2021. Online. Last accessed on August 19, 2021
[2] Alsan M, Wanamaker M, Hardeman RR. The Tuskegee Study of Untreated Syphilis: A Case Study in Peripheral Trauma with Implications for Health Professionals. J Gen Intern Med. 2020 Jan;35(1):322-325. doi: 10.1007/s11606-019-05309-8. Epub 2019 Oct 23. PMID: 31646456; PMCID: PMC6957600.
Featured image: Doctor talking to a patient. Photo courtesy: © 2016 – 2021 Fotolia/Adobe. used with permission.
