This week, people around the country celebrated Indigenous Peoples' Day — a holiday that honors Native American peoples and commemorates their histories and cultures — as well as the end of Hispanic Heritage Month, which celebrates the achievements and contributions of Hispanic Americans. We take the time to recognize these occasions because, as a country made up of people from so many varied backgrounds, inclusion is incredibly important.
But inclusion isn’t only important in terms of looking back at our histories, it’s equally important to making advancements for our collective future. This is particularly true as it relates to health and science. In order to achieve better health outcomes for everyone in the country, our scientific research needs to be inclusive, reflecting the U.S. population.
Unfortunately, we continue to see a lack of representation across multiple minority populations in clinical trials. In fact, Hispanics represent only 1% of clinical trial participants, despite representing 18% of the population. For Black Americans, they represent only 5% of clinical trial participants, despite representing 13% of the population. Available data suggests that participation of Native Americans in clinical trials is also not representative.
In the case of Alzheimer’s and other dementias, this is especially troubling because those most likely to need a treatment for Alzheimer’s are also those most underrepresented in clinical trials. Native Americans, Hispanics, African Americans and Asian Americans/Pacific Islanders are all disproportionately affected by Alzheimer’s, but are also the populations least represented in clinical trials where crucial research is being done to find treatments or a cure for this fatal disease.
This lack of inclusion limits the ability of researchers to understand health disparities and restricts their knowledge of how an approved Alzheimer’s therapy or diagnostic may affect them.
While significant barriers for these populations to access clinical trials was well-documented in the 2021 Alzheimer’s Association’s Special Report: Race, Ethnicity and Alzheimer’s in America, fortunately, there is also a solution: legislation that aims to improve health care equity by taking deliberate actions to foster the inclusion of diversity in Alzheimer’s and other dementia clinical trials.
The bipartisan Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act (S. 1548/H.R. 3085) would increase the participation of underrepresented populations in clinical trials by expanding education and outreach to these populations, encouraging the diversity of clinical trial staff and reducing participation burden.
What’s more, a foundation for success already exists to help remove barriers and ensure that future Alzheimer’s treatments and means of prevention are effective in all populations.
The National Institute on Aging (NIA) has established centers across the country that offer support and opportunities to participate in Alzheimer’s research, and which are already well-positioned to increase education and outreach activities to underrepresented populations within their communities. This includes 33 Alzheimer’s Disease Research Centers (ADRCs) at major medical institutions; four Exploratory ADRCs designed to expand and diversify research and education opportunities to new areas of the country and new populations; and eight Alzheimer’s disease-focused Resource Centers for Minority Aging Research (RCMARs) to enhance the diversity of the clinical trial staff by mentoring promising scientists from underrepresented groups.
The ENACT Act would provide funding for NIA to expand the number of ADRCs in areas with higher concentrations of underrepresented populations, such as through entities like Historically Black Colleges and Universities (HBCUs), Hispanic-Serving Institutions, Tribal Colleges and Universities (TCUs), or centers of excellence for other underrepresented populations. It would also provide funding for ADRCs and RCMARs 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. Additionally, ADRCs and RCMARs would use community-based engagement strategies in their outreach to underrepresented populations, including community presentations, media outreach, community advisory boards, and flagship events.
All told, enabling more inclusive research through the passage of the ENACT Act is not just the right thing to do, it will also have a meaningful impact on communities across the country.
The need for current and future research to include Native Americans, Hispanics, African Americans and Asian Americans/Pacific Islanders in clinical trials is an urgent one. We cannot ensure that all populations benefit from advances in Alzheimer’s science unless all populations are represented in the clinical trials.
Supporting the bipartisan ENACT Act is the right and necessary step to secure the increased participation of underrepresented populations in Alzheimer’s and other dementia clinical trials.
To help us grow support for this legislation take action today.