Alzheimer’s research advocate pushes for more diversity in clinical trials
Cheryll Woods-Flowers, once the mayor of Mount Pleasant, South Carolina, lost her father to Alzheimer's disease in February 2018.
Cheryll Woods-Flowers was once the mayor of Mount Pleasant, South Carolina, the affluent city just across the Cooper River from Charleston. Now the real estate professional is an ambassador for the Alzheimer’s Impact Movement, and she will soon travel to Washington, D.C., to advocate for more diversity in clinical trials and more research into Alzheimer’s.
Woods-Flowers, who lost her father to the disease in February 2018, told the Post and Courier the experience was “like you lose your family members a little bit at a time.”
“It’s not like any other way that you lose somebody,” she said.
One bill that Woods-Flowers will advocate for with her state’s delegation on Capitol Hill seeks to address the lack of Black and brown people in Alzheimer’s research, despite a high risk of the disease in those communities.
The federal Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act would fund new Alzheimer’s disease centers for research, facilities that would specifically be tasked with increasing minority representation in clinical trial participation.
According to the Alzheimer’s Association, Blacks have a twofold higher risk of developing the disease than whites, and Latinos are 1.5 times more likely. In South Carolina, Black people 65 and older are 45% more likely to develop the disease or other dementias than white residents.
The Post and Courier notes that despite these statistics, only 5% of people participating in all clinical trials at the University of South Carolina are Black, and only 1% are Latino.
The lack of representation impacts treatments. “That’s a major problem because the therapies that are developed are developed based on the people who are participating in the trials,” Dr. Marvella Ford told the newspaper. Ford is co-leader of the Research Education Component of the Carolina Center on Alzheimer’s Disease and Minority Research at USC.
The report notes that systemic disparities impact why minority groups are underrepresented in trials, and also affect African Americans’ long-standing distrust of medical professionals.
“That’s where building partnerships and relationships with communities and with community organizations and leaders is going to be so critical to the success of this new act,” Ford said.
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