Clinical trials are crucial for advancing medical research and developing new treatments for diseases. However, Black Americans have historically been underrepresented in clinical trials, making up only about 5 percent of participants. This lack of diversity can have serious consequences, as certain conditions and treatments may affect different racial groups differently. BDO has launched a monthly clinical trials town hall where we speak to clinical trial experts and participants. This week, we spoke to Tasha White, the founder of My Walk With MG.
“I definitely do believe, each disease out here, and there’s way too many to count, affects different races differently,” said White, who has the rare autoimmune disease myasthenia gravis. White participated in a clinical trial studying her condition during the years she was in remission, allowing researchers to learn more about how the disease progresses.
Tasha’s myasthenia gravis clinical trial experience
White’s journey into clinical research began when her neurologist asked if she would be interested in joining a study. “This particular clinical trial was for me to give blood,” White explained. “They wanted to basically track how I go about day-to-day with MG, and I was still in remission as well.”
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While her participation was relatively straightforward, simply allowing blood samples over time, White recognized the broader significance of contributing her data and experiences.
“I didn’t have a problem [participating]. So over the course of a couple years, every time I went in, they drew blood,” White said. “They wanted to see how active the antibodies were or that presented themselves, while, you know, me being in remission and being med-free.”
Why Black Americans don’t totally trust clinical trials
Black underrepresentation in trials stems in part from a deep-seated medical mistrust rooted in past unethical experiments like the Tuskegee syphilis study. As Taylyn Washington-Harmon, BDO’s clinical trials editor, explained, “A lot of that fear stems from…the Tuskegee Syphilis Experiment where they were basically withholding treatment from Black men who had syphilis to see how it affected them.”
However, increasing diversity in clinical trials is critical for ensuring medical treatments are safe and effective for everyone. “The only way for medicine to continue to advance is because of the clinical trials, which is how we have all of these different types of treatments,” White said. “Participation in clinical trials, especially in the African American community is very, very important.”
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Why we need Black representation in clinical trials
In fact, research has already uncovered important differences in how some diseases manifest and treatments work in Black populations compared to whites. Washington-Harmon cited a study showing “Black men were responding differently to different drugs” for cardiovascular disease.
Increasing Black representation can also help address racial disparities in healthcare. As Washington-Harmon noted, “Once we actually study Black Americans and study how our conditions affect us, we can potentially stop dying prematurely of these diseases or potentially be diagnosed sooner.”
To increase trust and participation, efforts are underway to enforce diversity guidelines and ensure minorities receive equal protections in trials. “There’s actually a really great study that just came out last week about how minorities are basically being treated the same as white Americans in the majority of these clinical trials,” Washington-Harmon said.
Additionally, having Black doctors and medical professionals involved can help build confidence. “The studies show that Black Americans do feel more comfortable going to doctors who are the same race as them,” Washington-Harmon explained.
Ultimately, greater clinical trial diversity benefits everyone, leading to more knowledge and better treatments. As Tasha White put it, “I paved the way for the next person that could be doing the same thing.”
By overcoming historical barriers and increasing their clinical trial participation, Black Americans can play a vital role in advancing medical research while also improving health care for their own communities. The path forward starts with open conversations and patient-doctor partnerships.
