Hispanic and Black Americans disproportionately impacted by Alzheimer’s, underrepresented in clinical trials
Washington, D.C. – U.S. Senators Ben Ray Luján (D-N.M.) and Susan Collins (R-Maine) today introduced legislation to increase racial and ethnic diversity in clinical trials for Alzheimer’s disease and related dementias. The Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act aims to increase diversity in clinical trials and study staff, reduce the burden of study participants, and improve health outcomes for people of color through new treatments. Congresswoman Lisa Blunt-Rochester introduced its companion legislation in the U.S. House of Representatives.
According to a recent Alzheimer’s Association report, Hispanics and African Americans are at a higher risk of developing Alzheimer’s disease and other forms of dementia. African Americans are twice as likely as whites to develop Alzheimer’s, while Hispanics are 1.5 times as likely. While dementia is more prevalent among Hispanic and Black Americans, it is more likely to go undiagnosed – or be diagnosed at a later stage – in these patients. More than six million Americans are living with Alzheimer’s, including more than 43,000 New Mexicans. As the U.S. population ages, the number of people living with the disease is expected to increase rapidly, reaching an estimated 14 million by 2060.
“There is a future in which no family will have to experience ‘the long goodbye’ of losing a loved one to Alzheimer’s. To bring that future into reach, medical research must include all of the communities touched by this disease,” said Senator Luján. “Despite suffering at greater rates, Hispanics and African Americans are underrepresented in the clinical trials that develop the newest Alzheimer’s diagnostics and treatments. This lack of diversity hurts patients of color and hinders researchers’ ability to fully understand the disease. The ENACT Act removes obstacles to diverse participation in Alzheimer’s clinical trials and brings us one step closer to ending this terrible illness.”
“Alzheimer’s disease is one of the greatest and most under-recognized public health threats of our time. Millions of Americans and thousands of Mainers are living with the disease, which imposes a devastating human and financial cost,” said Senator Collins, a founder and co-chair of the Congressional Task Force on Alzheimer's Disease. “Hispanics and African Americans are disproportionately affected by Alzheimer’s, yet they are underrepresented in current research. Our bipartisan legislation would increase diversity in clinical trials for Alzheimer’s disease, which will help improve outcomes for these populations while enhancing our understanding of the disease.”
“As scientists work to advance Alzheimer’s and dementia research, clinical trials must represent all those impacted by the disease. The ENACT Act would ensure Black, Hispanic, Asian, and Native Americans are better represented in Alzheimer’s and dementia clinical trials. On behalf of the 43,000 people living with Alzheimer’s in New Mexico and 85,000 more providing unpaid care, we’d like to thank Sen. Ben Ray Luján for his leadership introducing the bipartisan ENACT Act and for his support in the fight to end Alzheimer’s and all other dementia,” said Robert Egge, Alzheimer’s Association chief public policy officer and Alzheimer’s Impact Movement executive director.
Click here to download the text of the bill.