Bipartisan Legislation to Support Equity in Alzheimer’s Clinical Trials Endorsed by Alzheimer’s Association, Alzheimer’s Impact Movement
WASHINGTON, D.C., May 11, 2021
— The Alzheimer’s Association and the Alzheimer’s Impact Movement (AIM) are proud to support the bipartisan Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act
, legislation introduced to increase clinical trial participation among underrepresented populations. The ENACT Act was introduced by Sens. Ben Ray Luján (D-N.M.) and Susan Collins (R-Maine), and Reps. Lisa Blunt Rochester (D-Del.), Jaime Herrera Beutler (R-Wash.), Chris Smith (R-N.J.), John Curtis (R-Utah) and Maxine Waters (D-Calif.).
“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 Black, Hispanic, Asian, and Native Americans,” said Carl V. Hill, Ph.D., MPH, Alzheimer’s Association chief diversity, equity and inclusion officer. “There is an urgent need for our nation to do more to encourage and ensure diversity in clinical trial participation, and the ENACT Act is an important step to addressing this shortcoming in our pursuit of health equity.”
The ENACT Act would increase the participation of underrepresented populations in dementia clinical trials by expanding education and outreach to these populations, encouraging the diversity of clinical trial staff, and reducing participation burden, among other priorities.
“To ensure future treatments and means of prevention are effective in all populations, Alzheimer’s and dementia trials must reflect the U.S. population,” said Robert Egge, Alzheimer’s Association chief public policy officer and AIM executive director. “We are grateful to the bill’s sponsors for their leadership introducing legislation that prioritizes research.”
The underrepresentation of these populations not only hinders the ability of researchers to understand health disparities, it also restricts their knowledge of how an approved therapy or diagnostic may affect the population most likely to need the drug.
“While much progress has been made in understanding Alzheimer’s related brain changes and their impact on a person’s symptoms, we know more work remains. Of critical need, we must design future trials to be reflective of all communities impacted. It is only when measures outlined in the ENACT Act are implemented across the research field will we improve health equity,” said Maria Carrillo Ph.D., Alzheimer’s Association chief science officer.
“Alzheimer’s disease and dementia impacts thousands of Delawareans and their families each year. While underrepresented communities are disproportionately affected by these conditions, a lack of diversity in clinical trial research means we’re missing insight on how a potential treatment or cure could impact these patients,” said Rep. Blunt Rochester. “I’m proud to join my colleague, Congresswoman Herrera Beutler, in introducing the ENACT Act so we can reduce barriers to participation and improve diversity among clinical trial participants and staff.”
“Anyone who has been diagnosed or had a family member diagnosed with Alzheimer’s knows of its devastating impact. To defeat this disease, we need to invest in strengthening clinical trials to ensure they’re efficient, effective, and representative of populations in rural Southwest Washington and across our country. That’s why I’m introducing bipartisan legislation, the ENACT Act, which will invest in improved clinical trials and increased access for patients to help fight and find a cure to Alzheimer’s,” said Rep. Herrera Beutler.
“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 Sen. 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 Sen. 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.”
Among other elements, the ENACT Act would provide funding for the National Institute on Aging (NIA) to expand the number of Alzheimer's Disease Research Centers (ADRCs) in areas with higher concentrations of underrepresented populations. The ENACT Act would also provide funding for ADRCs and Resource Centers for Minority Aging Research (RCMAR) to increase education and outreach to underrepresented communities and primary care physicians to let them know about current trial opportunities, the importance of participation and the disparate impact of the disease on their populations. Equally important, the ENACT Act would direct NIA to enhance the diversity of principal investigators and study staff conducting Alzheimer’s and other dementia clinical trials, so they are more representative of the populations they’re trying to enroll.
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia®. For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.