Alzheimer’s advocate Ernestine Jones Jolivet encourages African Americans to participate in clinical trials that determine the effectiveness of treatments and therapies.
By AFRO Staff
Statistics show that African Americans are less likely to be asked to participate in clinical trials. The reason this disparity exists—and the method to solve the problem—was presented at the 2021 Alzheimer’s Association International Conference.
“There is a well-recognized need for diversity in clinical trial populations to ensure diagnostics and treatments are safe and effective for everyone,” says Carl V. Hill, Alzheimer’s Association chief diversity, equity and inclusion officer. Noting the impact of historical racism and current discrimination in health care, Hill says that it is important to find what approach works when asking historically underrepresented people to take part in clinical trials.
Shared experiences matter
Research shows that participation increases when the recruiter of the clinical trial is the same race. Sharing research goals with potential participants also increases enrollment. African Americans, Latinos and American Indians have a greater concern than Whites about how participation will affect employment, childcare, family responsibilities and transportation. Exclusion criteria for clinical trials also have the potential to disproportionately affect African Americans and Latinos, which may contribute to reduced enrollment in research.
Clinical trials with diverse populations in mind
The Alzheimer’s Association is leading two major clinical trials that focus on participation from diverse populations: the NEW IDEAS study and the U.S. POINTER study (Protect Brain Health Through Lifestyle Intervention to Reduce Risk). NEW IDEAS is recruiting 2,000 African Americans and 2,000 Latinos to learn how having a brain amyloid PET scan impacts clinical care for diagnosis and treatment. The two-year U.S. POINTER study examines the effects of lifestyle choices including diet, rest, physical activity, mental stimulation and socialization on reducing cognitive decline in diverse populations.
Emeobong Martin, regional director for health systems, spearheads activities for the NEW IDEAS study that begins participant recruitment in the fall. Through partnerships with leading healthcare organizations in Maryland, Virginia and Washington, D.C., she works to improve access to services, education and outreach for people living with Alzheimer’s disease and other dementia. Martin says, “As an African American woman, it is especially important to me, professionally and personally, to connect with healthcare providers who deliver care and recruit African Americans into clinical research.”
Information at your fingertips
The National Institute on Aging, in collaboration with the Alzheimer’s Association, created Outreach Pro (v1.0), an online tool to increase Alzheimer’s awareness and participation from underrepresented communities. It allows researchers and clinicians/staff to create customized outreach material for websites, handouts, videos and social media posts. The goal is to educate people about Alzheimer’s and dementia, increase awareness about clinical trials and provide criteria for specific clinical studies.
The Alzheimer’s Association’s TrialMatch® creates a customized list of clinical studies based on user-provided information that is available at alz.org/trialmatch.
A family mission to raise awareness
Ernestine Jones Jolivet’s experience with clinical trials includes being part of a longitudinal study on memory and aging at Johns Hopkins, a Delta Sigma Theta study on the health of African American women, and a Johns Hopkins School of Nursing COVID-19 preventative behavior study. The retired educator encourages others to follow her example, stating, “I believe in helping people be more responsible for their health, and to ask people to enroll, I have to practice what I preach.” For successful recruitment of African Americans in Johns Hopkins’ clinical trials, she was named research ambassador.
Jolivet’s Alzheimer’s advocacy includes working with her sister, former state Senator Verna Jones-Rodwell, and the Alzheimer’s Association to create the Pythias A. and Virginia I. Jones African American Community Forum on Memory Loss, an annual event in its seventeenth year that is named in memory of their parents who both died from dementia. “It took God to do this. We just knew God had put in our spirit to help people, along with the Alzheimer’s Association.”
Commenting on clinical trials, she continues, “If we want to be a part of the solution, it’s important to be involved in medical research that has traditionally been based on White males. We need to be a part of the research efforts that determine what medical treatments we receive. We can take charge of our health outcomes.”
To participate in any listed clinical trials, call the 24/7 Helpline at 800.272.3900.
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