Press Releases

WASHINGTON - Today, Congresswoman Lisa Blunt Rochester (D-Del.) and Congresswoman Jaime Herrera Beutler (R-Wash.), along with Congressman John Curtis (R-Utah), Congressman Christopher Smith (R-N.J.), and Congresswoman Maxine Waters (D-Calif.) introduced the Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act of 2021. Alzheimer’s disease and dementia disproportionately affect older Black and Hispanic Americans compared to older White Americans. Black Americans are twice as likely to develop Alzheimer’s and Hispanic Americans are one and a half times more likely to develop the disease. However, most of the Alzheimer’s research to date has not included sufficient numbers of Blacks, Hispanics, Asian Americans/Pacific Islanders, and Native Americans to be representative of the U.S. population. A companion bill was introduced in the Senate by Senator Ben Ray Luján (D-N.M.) and Senator Susan Collins (R-M.E.)

The ENACT Act would increase the participation of underrepresented populations in Alzheimer’s and other 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. 

“Alzheimer’s Disease and dementia impacts thousands of Delawareans and their families each year. Having had a grandmother and great-grandmother who suffered from dementia, I’ve seen first-hand the devastating impacts these diseases have on our loved ones and the toll they take on our families. 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,” said Rep. Herrera Beutler. “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.”

“Alzheimer’s and other dementia disproportionately affect older Black and Hispanic Americans compared to older Whites, yet much of our current research has not included sufficient numbers of underrepresented populations. More must be done to expand outreach and reduce participation burden for clinical trials. On behalf of the more than 6 million Americans living with Alzheimer’s and their 11 million caregivers, we’d like to thank Rep. Lisa Blunt Rochester, Rep. Jaime Herrera Beutler, Rep. Chris Smith, Rep. John Curtis and Rep. Maxine Waters for introducing the bipartisan ENACT Act, an important step to addressing health equity. We appreciate their leadership in the fight to end Alzheimer’s and all dementia,” said Robert Egge, Alzheimer’s Association chief public policy officer and Alzheimer’s Impact Movement executive director.

The ENACT Act would:

·      Expand clinical trial access and increase outreach and education to underrepresented populations

·      Reduce clinical trial participation burden

·      Increase flexibility of clinical trial design 

·      Enhance the diversity of principal investigators and study staff 

·      Maintain the National Institute on Aging Resource Center 

View the full one pager here and bill text here. 

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