courtesy of Audrey Davis.
Eighteen years ago, when I was a senior at Carleton College in Minnesota, I received a phone call from my dad. He said three words that would forever change the trajectory of my life: “I have cancer.” I soon learned that his diagnosis of Stage IV colorectal cancer also held a grim prognosis for his particular case and that he did not expect to attend my graduation that spring due to the aggressive chemotherapy and radiation treatments that would be needed. Instead, my dad’s brother and best friend, my uncle Wilfrid, cheered me on as I walked the stage to collect my diploma that May.
Dad, Wilfrid, and their brother, Jacques, emigrated from Haiti to the U.S. as teenagers without their parents, who died on the island before any of them became adults. They trusted each other with their lives and livelihoods as they traveled from everything that they knew to a completely foreign country and language.
Wilfrid is now a retired internal medicine doctor and remains my biggest cheerleader. He and my parents supported me in my decision to pivot away from plans to move to Washington State after graduation and instead return home to the East Coast so that I could help with caregiving for my dad. Uncle Wilfrid remained in Illinois with his immediate family while I collaborated with our relatives in Philadelphia to coordinate my dad’s care and treatment.
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When my dad and I went to his appointments together, I noticed a few things—I was disappointed and surprised to see that even in a bustling multicultural city and within a university hospital, the majority of individuals who resembled my Black Haitian father were primarily custodial engineers, support staff, and some allied health professionals. I was incensed by certain assumptions made about my dad’s ability to comprehend the information given to him—this was a man who spoke over five languages fluently! His thick Caribbean accent remained, but he was treated as though he could not comprehend information about his own body and care unless I, or in certain cases, Uncle Wilfrid, intervened.
His doctor briefly mentioned clinical trials as a treatment option, but the idea was not revisited until my dad asked additional questions. And when these questions were asked, he posed them to Uncle Wilfrd rather than his doctor. Dad knew my uncle would not make negative assumptions about his intellect or intelligence. He knew he would be honest with him about the potential risks and benefits of clinical trial participation. They had mutual respect for each other, and the care and compassion that my uncle had for my dad was believed and felt wholeheartedly.
Here is what we know: Black and African-American people make up approximately 14.4 percent of the population in the United States. A recent JAMA Network Open review concluded that from 2017-2022, only 4.4 percent of clinical trial participants for any cancer type were Black or African American. Unfortunately, Black people are more likely than their White compatriots to be diagnosed with female breast, lung, and colorectal cancers at late stages. Moreover, the overall five-year cancer survival rate for Black patients is lower than it is for White people, and of all races and ethnicities, Black people have the highest cancer death rates.
Why is this? Although the causes for these differences in clinical trial participation rates are multifaceted and multifactorial, one major reason is medical mistrust and distrust among Black Americans. Medical mistrust (which can result in medical distrust) can be conceptualized as a “protective response against the pervasive, interlocking structural inequalities that result in restricted access to resources, including housing, educational opportunities, employment, and healthcare, in addition to daily experiences of racism, stigma and discrimination.”
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My dad was eventually willing to engage in clinical research because he trusted my uncle. He knew that Uncle Wilfrid was a competent medical doctor well-versed in academic research. He was certain that my uncle cared about him and had his best interests in mind. There are ways to improve clinical trial participation among Black and African American cancer patients at both the individual and systemic levels and my uncle’s interactions with my dad underscore that the onus is not solely on Black and African American patients.
In my dad’s case, clinical trial participation improved his prognosis and prolonged his life. He was initially given less than a year to live, but made it to over three additional years here with us.
During that time, he enjoyed the company of relatives and friends, listened to his favorite jazz and classical music, and witnessed several milestones in my life. I am so grateful for the time that he was granted, as I pivoted away from law school and into clinical psychology graduate studies. I made the intentional choice to spend my life helping others achieve their highest level of health and continue to focus on ensuring that every person impacted by cancer and other illnesses has access to the services that they want and need.
We must educate the Black and African American community about clinical trials not only from a place of expertise, but also with the intent of doing no harm and having that patient’s best possible outcomes as part of our calculus. We must also teach patients about the variety and types of clinical trials that exist. While treatment trials are often thought of when we mention clinical research, there are screening trials, prevention trials, behavioral trials, quality-of-life trials, and other options that allow us to not only contribute to research but also potentially benefit from its findings.
The Cancer Support Community (CSC) and other patient advocacy groups have free resources available to patients who might be considering a clinical trial, including ones specially tailored for those communities that have been historically under-resourced and medically underserved. I serve as the producer of CSC’s docuseries, “Justified Medical Mistrust: Acknowledging the Past to Change the Future”, which features Black medical doctors and past cancer clinical trial participants from the Black community to help patients and their loved ones make an informed and empowered decision about whether a clinical trial might be an option for them.
In leading this project, I have often kept my dad’s experience and questions at the forefront of my mind. “What would dad think about this? Would he be convinced or compelled to take action?”
I also think about him when planning new programs and initiatives, such as our Increasing Diversity and Equity through Advocacy Leadership (IDEAL) Ambassadors program. Through IDEAL, cancer patients like my dad and loved ones will learn about legislative and policy issues that directly and indirectly affect their cancer care, and become advocates by using their voice at state and federal levels. My Haitian immigrant dad would have been proud to partake in our country’s political process in a way that was personal to him, and I am eager to see the impact of our work as this project is launched this year.
It is my sincere hope and vision that Black and African-American cancer patients and their loved ones consider participation in clinical trials as part of their treatment options from the moment that they receive a cancer diagnosis. I desire that we confidently advocate for clinical trial participation opportunities so that we can consider all options and make informed decisions about our care. Without our participation and inclusion in clinical research, the drugs and treatments being developed might not actually help improve our quality of life or prolong it, as researchers will not have the opportunity to see how we specifically respond to these treatments. If you are interested in more information and where to start, please visit the Cancer Support Community’s Health Equity resources.
For more information on clinical trials and how to find one for yourself or a loved one, explore BlackDoctor.org's Clinical Trial Resource Center.
Audrey Davis, LPC, PM-LPC serves as the Senior Director, Health Equity at the Cancer Support Community, a nonprofit that uplifts and strengthens people impacted by cancer by providing support, fostering compassionate communities, and breaking down barriers to care through education, research, and advocacy.
