The Alzheimer’s Association and the Alzheimer’s Impact Movement are looking at a potentially groundbreaking legal policy win in the Equity in Neuroscience and Alzheimer’s Clinical Trials Act (ENACT). Alzheimer’s is currently an incurable and ultimately fatal disease that affects minorities at an order of magnitude greater than white Americans. This Act is a step towards bridging a divide between these groups in crucial early diagnosis and medical care.
Minorities are affected at a higher rate than white Americans
According to the Alzheimer’s Impact Movement, older Black and Hispanic Americans are twice and 1.5 times as likely to develop Alzheimer’s and other dementias as older White Americans. The bulk of Alzheimer’s research in the U.S. has included whites, which may contribute to a lack of focus on the importance of early diagnosis for these and other minority groups.
In a bi-partisan effort, the ENACT act was advanced by Senators 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.) The Act’s goal is to increase the participation of minority groups in participation in future Alzheimer’s trials.
Alzheimer’s Association Chief Diversity, Equity, and Inclusion Officer, Carl V. Hill stated, “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.”
How ENACT works
The Act aims to target the affected populations with education and outreach campaigns to affected minorities, increase the clinical staff’s cultural diversity, and decrease barriers to trial participation.
A 2021 Alzheimer’s Association Disease Facts and Figures report indicated that over one-third of black Americans, 18% of Hispanic-Americans, and 19% of Asian-Americans believe that discrimination would be a barrier to receiving effective Alzheimer’s care. Over half of non-white caregivers claim to have observed their patients experiencing discrimination in health care settings.
According to the ENACT Bill, the National Institute of Aging would extend grants to 22 medical institutes in areas with a higher concentration of these minority groups.
The Act encourages grant recipients to dedicate funds to ongoing community outreach to make minorities aware of the studies. In addition, the bill suggests that study directors include members of the underrepresented groups as much as possible.
It’s always encouraging to see bi-partisan legislation. Alzheimer’s is a disease that can affect anyone and that’s of particular interest to elder law attorneys.
