In August 2020, Chadwick Boseman, actor and playwright, died at the age of 43 from colon cancer. The news shocked the nation and drew widespread attention to the disproportionate impact of the disease on Black people. Boseman’s passing also renewed attention to the importance of regular screenings, which can help identify cancers like colon cancer earlier, when it’s easier to treat.
What’s more, the “Black Panther” star’s legacy also brought to light the fact that Black and Latinx communities are underrepresented in clinical trials, especially for cancers in which they are at higher risk.
For example, despite making up 13.4 percent of the United States population, only 5 percent of Black patients with cancer are enrolled in clinical trials. Of 8,700 patients who participated in trials nationwide related to the 28 oncology drugs approved by the U.S. Food and Drug Administration in 2018 and 2019, only 4 percent were Black, according to FDA Drug Trial Snapshot reports.
Why does clinical trial participation matter? The newest cures are only available in clinical trials — these trials provide access to potential treatments that might be better than standard of care treatments now. Efforts at Penn Medicine are underway to take on both issues of equity in clinical trials and screening access through community engagement programs and expanded education.
Powering up Community Engagement
Saddened and troubled by Boseman’s death, Armenta Washington, a senior research coordinator at the Abramson Cancer Center, who had lost her cousin to colon cancer before the age of 50, was fueled by a mission, to improve education for Black people about higher risk cancers while also encouraging screenings (which should start at 45, or earlier if there is a family history). “If we can help eliminate those barriers to accessing colorectal cancer screenings, we would find it earlier and maybe prevent its progression, and reduce the rates of colorectal cancer death in our region that disproportionately falls on Black and Latinx people,” Washington said.
According to the American Cancer Society, during the COVID-19 pandemic, unfortunately many people held off on getting preventative screenings for cancer, despite their risk, due to fear of getting the virus.
Last year, Washington and Carmen Guerra, MD, MSCE, FACP, an Internal Medicine physician and vice chair of diversity and inclusion for the department of Medicine, established a program called Flu-FIT, which used local connections and community events to create opportunities for people to get screened for colorectal cancer and receive their flu vaccine. The first such drive- and walk- through event was held with the Enon Tabernacle Baptist Church, the largest African American church in Philadelphia, led by Reverend Leroy Miles, last October.
Washington and Guerra were also among the Penn Medicine partners who joined a unique community outreach-based campaign, with WURD, Philadelphia’s Black-owned and -operated talk radio station, along with other organizations to provide free FIT kits and follow-up support to Philadelphia residents, as well as education about colorectal cancer and its prevention to countless others.
And it doesn’t stop there. In addition to disease prevention efforts, Washington and Guerra launched a pilot program to encourage clinical trial participation among the underserved community. Penn’s Abramson Cancer Center (ACC)'s Cancer Clinical Trials Community Ambassador Training Program was established in August 2021 to create cancer clinical trial community spokespersons and resources to increase awareness and access to cancer clinical trials in the diverse Philadelphia communities.
The program trained a cohort of cancer survivors and caregivers of patients with cancer on how to engage with primarily Black communities in conversations about cancer and the importance of cancer clinical trial research participation.
As one of the 19 individuals who graduated from the eight-week program this October, Edwina Griggs, a Philadelphia senior center program coordinator, who has been motivated by members who have found a safe space in the center she works at, shared that she feels armed and ready to engage with the seniors she works with in activities that are meaningful to them staying active and healthy.
History, culture, and language all contribute to low minority participation in clinical trials in the United States. Low participation means that underserved populations including Black and Latinx people are less likely to benefit from the latest scientific discoveries and best hope for cure. ACC and its Office of Diversity continue their commitment to increasing participation in clinical trials among these populations to improve health outcomes for all residents in the region.
The ACC recently achieved a major equity milestone after a five-year effort to enroll more Black patients with cancer in clinical trials. In 2014, Black residents comprised 19 percent of the 12-county area around and including Philadelphia. And 16.5 percent of cancer patients were Black. Yet at Penn Medicine, only 12.2 percent of patients in cancer treatment trials were Black. After the five-year effort, the number of Black patients enrolled in the trials nearly doubled — to 20.9 percent.
The ACC achieved this through a focused community outreach and engagement effort reaching more than 10,000 individuals in churches, neighborhoods, community parks and centers, and health centers with formats ranging from educational forums to wellness fairs. These efforts drew on prior research in the field that identified many of the barriers to participation in clinical trials for Black patients, as well as potential strategies to enhance participation including provider referrals of under-represented patients, community outreach, acknowledging and addressing issues of trust, flexibility in intervention methods, and population targeted materials. Therefore, the ACC’s effort included culturally tailored marketing strategies; new partnerships with faith-based organizations serving Black communities to conduct educational events; establishment of an ACC community Advisory Board and community educational forums; pilot programs with Lyft and Ride Health to address transportation barriers; and patient education by nurse navigators regarding cancer and clinical trials.
“At Penn Medicine, eliminating health disparities is an important public health issue that remains top of mind, so that equal care is expected across the health system for all patients regardless of race, gender, socioeconomics, demographics, and more,” said Washington. “When health care providers and trusted community partners come together in service to people, everyone wins.”
Patients or community members interested in speaking with an ambassador or in undergoing training to become a cancer clinical trials ambassador may contact ACC Office of Diversity at 215-349-5007.