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A documentary series aims to shed light on an issue that Black American communities know well: medical mistrust.
“Justified Medical Mistrust: Acknowledging the Past to Change the Future” is a six-part film produced by global nonprofit Cancer Support Community (CSC).
The film was recently presented to an audience at the Pennsylvania Convention Center in Philadelphia for the inaugural CINEHEALTH International Health and Wellness Film Festival.
The film covers medical mistrust among communities of color broadly. But the documentary also highlights how the lack of racial diversity in clinical trials impacts cancer research.
Audrey Davis, senior director of health equity at Cancer Support Community, is a Philadelphia native who served as her father’s caregiver after he was diagnosed with colorectal cancer. Clinical trials were offered as an option, but Davis said her father was reluctant to get involved.
“My dad passed away when I was 24,” she said. “I thought of people like my dad who maybe would have wanted to hear from a trusted source, someone who looks like them, to talk to them not only about what their concerns about clinical trial participation are, but also what the benefits of clinical trials can be for both the individual and also the community.”
Medical mistrust and clinical trials have caused profound harm in Black communities, Davis said. The infamous study of syphilis in Tuskegee, Alabama is one of several controversial examples of medical research involving African Americans, as well as Dr. J. Marion Sims’ — the “father of gynecology” — experiments of enslaved women.
Like Davis, many medical researchers are concerned medical mistrust is leading to large disparities in diversity and ethnicity in disease trials.
In 2022, a report showed that a lack of clinical trial diversity leads to billions of dollars in losses for diabetes and cardiovascular disease research. Similarly, the Food and Drug Administration (FDA) reported that an approved drug for early Alzheimer’s involved clinical trials of fewer than 20% of Black participants.
“If we have lower clinical trial participation rates by a particular group, in this case, African American and Black patients,” Davis said, “then what we’re going to see, not only in terms of having skewed data, is guidelines that are coming out in terms of prevention and screening are also not accurate for these groups.”