Improving Diversity in Alzheimer’s Research is Critical

Black Americans are disproportionately affected by Alzheimer’s disease and other related dementias when compared to White Americans, yet have been critically underrepresented in much of the Alzheimer’s research to date. Congress has the opportunity to drastically impact the future of research with legislation that would help ensure diverse populations are represented in clinical trials and fundamental observational research. Speaker Pelosi should be at the forefront of this effort.

As we recognized the important historical contributions of Black Americans in all facets of society this past Black History Month, we must also recognize the disparities still facing people of color, especially when it comes to caring for our aging population already reeling from decades of health inequities.

In 2019, there were more than 34,500 Black Californians living with Alzheimer’s, according to the latest data published last year by the California Department of Public Health. That number is expected to more than triple by the year 2040 while the number for all Californians is expected to double, illustrating the health disparities faced by communities of color.

It’s also important to acknowledge the perceptions of Black Americans and other communities of color towards many of the institutions and workgroups leading efforts in health research.

According to the Alzheimer's Association 2021 Alzheimer's Disease Facts and Figures special report, nearly two-thirds of Black Americans (62%) believe medical research is biased against people of color — a view shared by substantial numbers of Asian Americans (45%), Native Americans (40%), and Hispanic Americans (36%) as well. These perceptions are often driven by negative experiences endured by persons of color in a healthcare or research setting.

In fact, only half of Black Americans (53%) trust a future cure for Alzheimer’s will be shared equally regardless of race, color or ethnicity. Building and restoring trust in Black and other underrepresented communities is essential to ensuring equity in distribution of benefits from advances in Alzheimer’s research as we prepare for the future medical needs and care of those disproportionately affected.

Community-based participatory research (CBPR) and engagement with community-based organizations (CBOs) are two strategies that can accomplish this goal.

The Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act, introduced in both the Senate and House of Representatives under a banner of bipartisan authorship, 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.

Specifically, the ENACT Act would provide funding for the National Institute on Aging (NIA), $60 million per year for five years, to expand the number of Alzheimer’s Disease Research Centers (ADRCs) in areas with higher concentrations of underrepresented populations, such as through entities like Historically Black Colleges, and use their own community-based engagement strategies in their outreach.

The NIA would also be directed to enhance the diversity of principal investigators and study staff conducting clinical trials so they are more representative of the populations they’re trying to enroll.

Lastly, the bill would make it easier for these communities to participate by providing incentives for locating Alzheimer’s clinical trial sites in areas with high concentrations of underrepresented populations, and by utilizing remote patient monitoring to help ease the burden of participation.

The current underrepresentation of these populations not only hinders the ability of researchers to understand these health disparities, it also restricts their knowledge of how an approved therapy or diagnostic may affect the population most likely to need the drug.

Acting now to improve future outcomes is critical, especially in a state as diverse and heavily populated as California. Speaker Pelosi should sign on as co-sponsor of the ENACT Act and champion the effort to address health disparities in our state and across the nation.