Researchers call for Alzheimer’s trials for African-Americans
African-Americans are twice as likely as white Americans to develop Alzheimer’s, but are massively underrepresented in clinical trials — an issue local researchers say could lead to medications that are ineffective for a key demographic.
“We’ve realized that the lack of diversity in our clinical trials is not a good thing if you’re trying to figure out the value of a drug,” said Dorene Rentz, co-director for the Center for Alzheimer Research and Treatment at Brigham and Women’s Hospital. “You don’t want it to only be successful in white folks, you want it to be successful in all folks.”
About 20 percent of the 5.5 million Americans who suffer from the progressive and devastating illness are black, but only comprise about 3 to 5 percent of trial participants.
The glaring disparity has led Rentz and her fellow researchers to bump up outreach efforts for a pioneering study — the A4 — which aims to identify physical signs of disease in the brain long before symptoms arise.
African-Americans are more likely to carry the E4 allele, a gene that increases the risk of Alzheimer’s, Rentz said.
And along with the lack of representation in trials, black patients are less likely to be diagnosed.
“Genetically, there are some factors associated with it. They also come to care later in the disease, because of normalizing it culturally, and because of disparities in health care,” she said.
Rentz is one of several researchers who have been going to African-American communities to educate members about early warning signs.
And today, she will serve as a panelist during an event at Boston’s Hibernian Hall hosted by AfricanAmericans Against Alzheimer’s, which includes a play called “Forget Me Not” about a black family struggling to cope with a family member’s symptoms.
“Most African-Americans believe memory loss and other symptoms of Alzheimer’s are a normal part of aging,” said Stephanie Monroe, executive director of African-Americans Against Alzheimer’s. “They’re willing to accept these terrible symptoms and challenges.”
She added, “There’s also a stigma. It’s thought of as a mental health issue.”
Plays like “Forget Me Not” — and educational efforts that include stops at trusted institutions like barber shops, churches and Greek organizations — can help show members of black communities exactly what the disease looks like.
And that will hopefully inspire more black patients to volunteer for trials if medical professionals fail to ask.
“We need to make sure we’re putting out the most effective medication,” she said. “And the only way to do this is to get those numbers up.”