“Alzheimer’s and other dementia disproportionately affect older Black and Hispanic Americans compared to older Whites. Yet too often the clinical trial staff and participants have not included sufficient numbers of Blacks, Hispanic, Asian, and Native American,” said Carl V. Hill, Ph.D., MPH, Alzheimer’s Association chief diversity, equity and inclusion officer.
Black Americans are two to three times more likely to develop Alzheimer’s, and Hispanic Americans are one to two times more likely to develop the disease. In 2018, across all clinical trials (not just Alzheimer’s), Blacks represented only 5% of trial participants and Hispanics represented only 1%, despite representing 13% and 18% of the population, respectively. The best available evidence suggests that this trend is similar in Alzheimer’s research. A study from 2016 found that among 10 recent Alzheimer’s biomarker studies, only 2 of them had recruited adequate numbers of Blacks.
Including more individuals from traditionally underrepresented populations in Alzheimer’s clinical trials will require establishing trust and lowering the burden of participation. According to a recent survey, nearly two-thirds of Blacks believe that medical research is biased against people of color. This belief is also held by more than a third of Asian Americans, Hispanics, and Native Americans.
The Equity in Neuroscience and Alzheimer’s Clinical Trial (ENACT) Act (S.1548/H.R. 3085) is bipartisan legislation that seeks to increase the participation of underrepresented populations in Alzheimer’s clinical trial by expanding education and outreach to these populations.
Please join me and the Alzheimer’s Association in asking our Congressional representative, the Honorable David Scott, District 13, to support the Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act.