Creating cures that work for all
Cancer is a devastating disease for anyone, but in many Black communities, it leaves a path of destruction – wiping out finances, futures and families. Black patients die from cancer more than any other racial or ethnic group in the U.S. Yet, Black patients comprise only a small fraction of participants in clinical trials for new cancer therapies. How can we expect treatments to be effective for all if we don’t have diverse representation in treatment design and testing?
Working with the V Foundation, ESPN is funding the work of Nita K. Lee, M.D., M.P.H., Associate Professor and Assistant Director at the University of Chicago Comprehensive Cancer Center Community Outreach and Engagement; and Gina Curry, Director, Office of Community Engagement and Cancer Health Equity, who are leading EMPOWERED U, a community research program to better understand and address the gaps in cancer research in Chicago’s minority communities.
Communities left behind
According to the American Society of Clinical Oncology, the diversity of patients in cancer clinical trials is far lower than the overall diversity of patients with cancer in every area except pediatric oncology. Despite efforts by the National Cancer Institute to improve minority representation, approximately 1% of registered cancer clinical trials are directed toward racial and ethnic minority populations, and only about 33% of registered trials even report race and ethnicity in trial results. Minority patients are less frequently offered the opportunity to enroll in clinical trials and face greater barriers to participation when they do enroll.
As cancer treatments become increasingly tailored to precise patient or tumor characteristics, inclusivity in clinical trials becomes even more critical to improving care and saving lives.
“Without capturing a diverse segment of our population in trials, especially therapeutic and biobanking tissue studies, we may not have the correct data and outcomes of research to treat patients effectively once these innovations are adopted into standard clinical practice,” says Lee. “We must focus our studies on cancers disproportionately affecting communities and make sure minorities are reflected in trials of those cancers.”
Breaking through barriers
ESPN’s support of the EMPOWERED U program allows researchers to work directly with patients, caregivers, local community leaders and medical providers to understand the barriers, myths and fears, along with the factors that can improve trial participation and the patient experience.
One lesson that has emerged so far is that the logistics of participating in a clinical trial can be daunting, especially for patients with low income, mobility challenges or work and family obligations. Curry shares, “Parking and transportation may sound trivial, but for many patients, the cost of traveling to the hospital can add up quickly on a fixed income. Additionally, the walk from a bus stop or parking lot to the hospital entrance, and finally to the treatment area can be quite lengthy, especially if a patient has obesity, respiratory problems or other medical issues.” Cost to caregivers and patients for time away from work is also often underestimated.
As another example, a clinical trial studying the use of MRIs and mammograms for dense breast tissue is particularly important given the disparities in breast cancer in younger Black women, but may be nearly impossible if the time commitment, child care and transportation are not addressed during recruitment. Patients participating in some blood cancer trials may require multiple blood draws and appointments each week. The cost of lost wages, parking and transportation add up, even with vouchers.
One goal of the EMPOWERED U program is to make the designers of clinical trials aware of such challenges and encourage creative solutions to meet the needs of the patients they hope to recruit. For example, researchers could explore sending a phlebotomist to the patient’s home for blood draws instead of requiring participants to travel to the clinic each time. Telemedicine visits could be better leveraged as well.
Another barrier to minority participation in trials is that quite often, physicians, even when well-meaning, do not ask patients to participate because of pre-existing conditions. Comorbidities such as high blood pressure, kidney disease and obesity, common in Black patients and older patients, make patients ineligible for many clinical trials with strict criteria.
In addition, historical medical mistreatment and systemic racism experienced by minority communities has led to distrust handed down from generation to generation. The lack of information and knowledge of the benefits of participating in a trial adds to financial and health challenges.
Boosting visibility and inclusion
With EMPOWERED U, researchers hope to improve communication and integration between teams and ultimately increase participation in trials for cancers with the most significant disparities – colon, breast, prostate and lung. “This program intends to break down misconceptions from the community perspective as well as medical trial team perspectives. We have two groups of people who want the same thing, but a mismatch to who is getting treatment,” explained Curry.
Strong outreach and engagement projects with community partners and survivor advocates already embedded in Chicago communities will be used to capture patient and community voices through focus groups and interviews. The research team will use the input to design a Community Clinical Trials Toolkit consisting of booklets, cards, and video vignettes to answer questions and concerns related to clinical trials. During the six-month campaign, the EMPOWER U team will target minority-focused media outlets to air radio and television ads, PSAs and podcasts.
The data generated and the developed messaging will help inform the community and individual patients on how to advocate for trials. “We want patients to ask, ‘What are my choices, doc?’” said Curry. From a community perspective, knowledge gives patients more control. Equally important, the team will educate medical providers and clinical research teams about community and patient views and provide best practices to support minority patients.
Opportunities with lasting impact
The impact of increasing trial participation can be lifesaving for many patients and is critical for establishing future standard treatments. For patients for whom standard treatments are not effective, clinical trials may offer the only option to slow or stop the course of their disease, possibly providing them with additional months or even years of life. Ensuring that all communities and individuals, especially Black and other minority cancer survivors who remain disproportionately underrepresented, are active participants in outreach, education and design of the trials is critical. Ultimately, the knowledge gained in trials will alter the course of cancer treatments for generations to come.
As we work to close the gap in cancer disparities, we are grateful to ESPN for their partnership. Together, we are one team with one mission: to declare Victory Over Cancer®.