A North Carolina Coalition Pushes for Inclusive Clinical Trials

Source: North Carolina Health News

The lack of diversity in clinical trials can have significant consequences for public health – resulting in drugs, treatments, diets, and surgeries that are less effective for underrepresented populations. 

An analysis of 32,000 individuals who participated in new drug trials in the US during 2020 showed that only 8% were Black, 6% Asian, 11% Hispanic and 30% were age 65 and older – showing the underrepresentation of diverse populations in clinical trials. 

A new coalition, called THIS-NC, hopes to make health care research more inclusive by working with providers who provide care to historically underrepresented communities.

Organizations affiliated with the coalition include North Carolina Central University, the North Carolina Rural Health Leadership Alliance and the North Carolina Association of Free and Charitable Clinics.

April Cook, chair of THIS-NC’s board of directors, stated that the 70 free and charitable clinics represented by her association, serve an uninsured population that “typically doesn’t have a voice.”

“They’re just not heard a lot of the time except within the walls of the safety net,” Cook told NC Health News. “They have very complex challenges that they face on a daily basis, but they’re often not even included in the research.”

Although improving diversity in clinical trials is essential to produce better results, medical research has a long history of discrimination and unethical practices. According to NC Health News, the most infamous examples are the Tuskegee Syphilis Study on Black men in Alabama, or the use of cancer cells harvested from Henrietta Lacks in research without consent or compensation from her and her family. 

“If you think about the history of clinical trials and certain populations over the years, there’s a real reason for that mistrust,” Becca Hayes, director of health research equity for the North Carolina Community Health Center Association, told NC Health News. “Even if people are not completely aware of which study it was and what year it happened, it’s just ingrained — and it should be.”

Through a partnership with North Carolina Central University and free clinics and federally qualified health centers, the coalition, researchers, and associates hope to look for ways they can work together to address systemic inequities in health research.

“We don’t have billions of dollars,” Deepak Kumar, a cancer biologist and health equity researcher at North Carolina Central University,  told NC Health News. “But we hope that if we join hands and come together, then we will be at least able to sit at the same table and advocate for our population.”

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