Doctors have earned a reputation of being the worst patients. Dr. Jeffery Wayne, a Sacramento internal medicine specialist, played into this stereotype in 2016 after refusing to go to the hospital despite experiencing chest pains. Once the symptoms reached a point where he could barely walk due to the pain, he finally agreed to visit the emergency room.
Wayne found out he was experiencing a heart attack. “I share this because maybe it’s relatable,” said Wayne at a California Black Health Network (CBHN) webinar held last week.
“This isn’t just a white doctor speaking to Black Americans — it’s one human being to another,” he said. “It was a wake-up call. Along with the heart attack, I was diagnosed with high blood pressure, high cholesterol, and pre-diabetes.”
The diagnosis and subsequent treatment drove Wayne’s interest in researching clinical trials and new medications. To date he has conducted over 300 clinical trials.
“Many people don’t know much about clinical trials, or they’re skeptical; fearing the unknown side effects or feeling like a ‘guinea pig.’ The benefits of participating include access to new treatments, enhanced medical care, and contributing to medical advancements. For many, it also provides a sense of purpose and greater involvement in their own healthcare,” Wayne stated. African Americans have been historically underrepresented in clinical trials. According to a 2020 FDA report, 8 percent of research participants were Black while 75 percent were white. Rhonda Smith, CEO of CBHN, attributes this lack of participation to individual, community, and systematic factors.
“At the individual level, our community often holds onto a mindset of mistrust — and rightly so. If you think about the Tuskegee Syphilis Study or the story of Henrietta Lacks, there’s a long history of reasons not to trust the healthcare system or providers,” Smith said during the webinar.
“At the community level,” she continued, “many clinical trials simply aren’t located where Black people live. At the system level, White providers don’t always present clinical trials as an option to patients of color, even in critical moments such as a stage four cancer diagnosis.”
California has taken measures to increase protections for research participants under the Clinical Trial Bill of Rights. The legislation guarantees their right to voluntary, informed consent and providing specific information about studies they participate in, ensuring access to care and respectful treatment, protecting their privacy and confidentiality, and upholding their right to withdraw from the study at any time without penalty.
California is the only state in the country with this specific type of legislation. Not only does participating in clinical trials present benefits for individuals, the information gathered from participants of color can also impact how communities are accounted for in groundbreaking medicine, public health experts say. For those interested in learning more about what clinical trials are available and how to participate, the most common first step would be starting with your doctor and telling them you’re interested in participating in a trial.