Despite African Americans’ Fear of Research Bias, Alzheimer’s Experts Deliver a Call for Wider Participation in Clinical Trials

Special to The Truth

The statistics are real: African American seniors are twice as likely as White Americans to get Alzheimer’s disease.

But according to the Alzheimer’s Association’s 2021 Alzheimer’s Disease Facts and Figures report, among all Americans, African Americans have less interest in clinical research trials to prevent or slow the progression of Alzheimer’s disease.

That will have to change to ensure that new Alzheimer’s and dementia drug treatments are effective for all individuals who fit the targeted medical diagnosis.

Dr. Rebecca M. Edelmayer, Senior Director of Scientific Engagement for the Alzheimer’s Association, said, “We know that there are gender, racial, and ethnic disparities that exist in Alzheimer’s prevalence. This is due to a constellation of reasons that are both fundamental and unique. But we also know that historically less than 5 percent of dementia trial participants are individuals from underrepresented populations. Equity in dementia diagnosis, treatment and care requires inclusion in dementia research, so that the discoveries we make will benefit all.”

For example, Dr. Babak Tousi, head of the clinical trials program at the Cleveland Clinic Lou Ruvo Center for Brain Health, said he is not sure how the new Alzheimer’s drug, Aducanumab/Aduhelm, would work for African Americans and Hispanic Americans because there were so few diverse individuals in those drug clinical trials.

“We don’t know what the barriers are,” Dr. Tousi said. “We always encourage in every trial that more minorities, more diverse populations are a part of the study,” he said. “Hopefully that is something we will achieve more for future trials.”

Rebecca Edelmayer, MD

Those issues and others will be discussed at a February 24 virtual statewide event “The Future of Alzheimer’s Research and Treatment” sponsored by the Alzheimer’s Association. The free webinar, which will be from 5-6:30 p.m., will feature a panel of distinguished researchers from Ohio, Michigan and West Virginia led by Dr. Edelmayer, who is based in Chicago. Pre-registration is required to receive the event link. To register, go to:

Dr. Edelmayer said “we’re learning more and more that early detection and accurate diagnosis will be the key to hopefully reducing risk and developing the most effective treatment strategies that will help everyone.” That is important because historically African Americans are diagnosed late, which limits treatment options.

According to the Alzheimer’s Facts and Figures report:

  • Nearly two-thirds of African Americans (62 percent) believe medical research is biased against people of color
  • Only half of African Americans (53%) trust a future cure for Alzheimer’s will be shared equally

Eric VanVlymen, Regional Leader for the Alzheimer’s Association in Ohio, said the Association is actively working to address those perceptions by developing community partnerships to be able to serve more diverse individuals and launching clinical trials that require a higher level of participation by diverse individuals.

In terms of access to future treatments, the Alzheimer’s Association is currently lobbying the Centers for Medicare & Medicaid Services to change its draft coverage decision on Aduhelm – calling the decision one that further exacerbates disparities among women, African Americans and Hispanic Americans.

Aducanumab/Aduhelm targets amyloid in the brain, with amyloid being one of the hallmarks of Alzheimer’s disease. But Dr. Edelmayer said, “there are over 100 different types of drugs, unique approaches that are not anti-amyloid and many of them are in the pipeline today in phase one, phase two, and phase three trials.”

“You may see in the future someone taking an anti-amyloid plus an anti-tau treatment plus something to help with neuroinflammation,” she said.

The Alzheimer’s Association is leading two major clinical trials with a strong focus on diverse participation. The New IDEAS Study, which is investigating the impact of a brain amyloid PET scan on clinical care outcomes, is recruiting 2,000 Latinos and 2,000 African Americans. Also, the U.S. Study to Protect Brain Health Through Lifestyle Intervention to Reduce Risk (U.S.POINTER) study is a two-year clinical trial studying the effects of multi-component lifestyle interventions on risk of cognitive decline in a diverse population in the United States.

Individuals interested in finding out more about clinical trials can go to the Alzheimer’s Association’s TrialMatch®. which is a free matching tool for research studies and treatment trials for Alzheimer’s and other dementias.