This past week, the Global Alzheimer’s Platform Foundation, which works with a national network of clinical research centers, held its annual Site Optimization Conference in Orlando. The conference brings together the leaders of more than 80 clinical trial sites throughout the U.S. and Canada who work day in and day out to identify a cure for Alzheimer’s disease.
More than 580,000 Floridians have Alzheimer’s disease, a progressive brain condition for which there is no cure. That number is expected to grow to 720,000 by 2025 unless effective treatments are developed and approved. African Americans are hit particularly hard by Alzheimer’s – they are twice as likely as whites to have the disease.
Clinical trials – scientific studies that investigate whether certain drugs are effective – are the key to solving the Alzheimer’s crisis. One of the primary goals of the GAP Network, including its ten partner sites in Central Florida, is involving more African Americans as research participants.
“There is reason to believe the research community is on the verge of a medical breakthrough,” said John Dwyer, President of the Global Alzheimer’s Platform Foundation. “But we want to ensure that a new Alzheimer’s medicine works for African Americans so it is critical that they are adequately represented in the studies used to evaluate new treatments.”
Twenty percent of Americans with Alzheimer’s are African-Americans, and they bear 33 percent of its national cost – including the costs of caregiving. However, African Americans make up very small percentage of clinical trial volunteers. That’s a problem because researchers need to know if a drug that is effective for one race is effective for another – a goal that is best achieved if the studies have a diverse pool of participants.
Prominent African American leaders are outspoken about this problem. The restaurateur, model, and author B. Smith relentlessly encouraged African Americans to support Alzheimer’s research before she died on February 22, 2020 after a long battle with the disease. Civil rights leader Reverend Al Sharpton lost his mother to Alzheimer’s. He is a strong proponent of greater involvement in clinical trials from the African American community. “If people were excluding us from clinical trials, we’d be marching,” he told interviewers last year. “Why are we not marching to the clinical trials?”
“The research community is removing obstacles to participate in Alzheimer’s research, and helping the African American Community be part of finding a cure,” said Dr. Malisa Agard, the Medical Director of ClinCloud, a clinical research center in Maitland, FL. “For one thing, we’re helping people understand the benefits of joining a clinical trial. Some people volunteer because they hope to get access to medicine that might slow the disease, others want to find out if they may have the disease since loved ones have battled it, and some simply want to be part of the team searching for a cure.”
Rochelle Long of Shaker Heights, OH, will address the GAP conference about minority recruitment. She is the inaugural winner of GAP’s Citizen Scientist Cornerstone Award, which recognizes a clinical trial participant who has personally made extraordinary efforts to support local research and participate in a trial. Long has been the primary caregiver for her mother and aunt for years, watching Alzheimer’s disease gradually steal their memories, personalities, identities and, ultimately, her aunt’s life.
“I’ve spent nearly every free moment of the last 15 years as a trial volunteer, caregiver, and recruiter doing what I can to advance Alzheimer’s research,” said Long. “Helping my mother and aunt participate in research gave me a sense of purpose, a feeling that we weren’t just waiting for the disease to do its damage. I joined a study as soon as I qualified.”
In general, researchers hope to attract African Americans age 50 and older who have concerns about their memory or just want to do their part for the sake of future generations. Many research centers, including ClinCloud in Maitland, FL, offer free consultations or memory evaluations. You can find additional Florida research centers at https://globalalzplatform.org/gap-net/#FL-location.“We need more African Americans in Alzheimer’s clinical trials,” said Long. “If they don’t participate, our seniors will die in greater numbers, our families will continue to be unequally burdened by the demands of caregiving, and our children will risk inheriting a world without a cure for everyone.”
Originally published in The Orlando Times vol. 43 NO. 09.
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