Clare Ansberry, Wall Street Journal, August 31, 2020
Brian Van Buren applied to five Alzheimer’s disease clinical trials after being diagnosed with mild cognitive impairment and losing his mother and aunt to the illness.
But Mr. Van Buren, 69, thinks it’s crucial to have more Black representation in clinical trials—especially for Alzheimer’s disease. The condition disproportionately affects African-Americans yet includes few of them in research. Mr. Van Buren has been rejected from all five trials, in part due to underlying health conditions that affect many African-Americans.
Blacks are twice as likely to develop Alzheimer’s disease as whites, according to several studies. Researchers are still trying to understand why but believe it’s a mix of socioeconomic disparities, higher rates of chronic diseases such as diabetes and heart disease, and genetics. Yet, Blacks represent less than 5% of participants in most clinical trials for new drugs and therapies, according to the U.S. Food and Drug Administration. There’s no breakout for Alzheimer’s specifically, but researchers in the field say the numbers are similar.
Latinos are 50% more likely to develop Alzheimer’s, but are also underrepresented in clinical trials. As a result, those at greatest risk may not be well served by new treatments—effectiveness may depend on factors that can be linked to race, such as socio-economic disparities and other health conditions, researchers in the field say.
Blacks and Latinos are underrepresented in clinical trials in large part because they aren’t asked, says Stephanie Monroe, director of the African American Network Against Alzheimer’s. Research shows most would participate if invited but many have limited access to doctors, who routinely refer individuals to clinical trials.
Minority participation targets should be built into trials at the outset, says John Dwyer, president of Global Alzheimer’s Platform Foundation, a nonprofit foundation that works with more than 80 clinical trial sites across North America.
One coming trial, which is looking for markers in the blood that help identify whether a person is at higher risk for Alzheimer’s, requires that 20% of the participants are either African-American or Latino. “We will keep the study open until we meet those numbers,” he says. “It’s an irreducible minimum.” That study, which begins later this year, will be conducted in communities with large minority populations and at clinical sites staffed in part with African-Americans and Latinos.
Mr. Van Buren, of Charlotte, N.C., cared for both his mother and aunt after they were diagnosed with Alzheimer’s. He registered with an Alzheimer’s Association database to be notified of coming clinical trials. He applied to five and was rejected because of his diabetes, high cholesterol, sleep apnea and obesity. Two of the trials rejected him because he lives alone and doesn’t have 24/7 care.
He was able to participate in a genetic study, as was his daughter, to see if they carry a gene that puts them at higher risk. His mother, Billie, was part of that study, too, before she died.