Although race is known to dramatically impact the risk for Alzheimer’s disease (AD), the number of minorities involved in clinical trials is reportedly very low. In fact, African-Americans (and other minorities) are seriously underrepresented in current AD clinical trials.
Evidence has shown that people respond very differently to AD drugs, depending on race and ethnicity. Therefore, the National Institutes of Health mandated a policy to ensure that participant enrollment in clinical trials mirrors the makeup of gender and racial breakdown in the general population.
Research has indicated that compared to whites, AD is two times as likely to occur in African Americans, and 1.5 times more apt to affect Hispanics. In fact, according to the Alzheimer’s Association, AD affects more African Americans than whites, with an estimate of a rate of around 14% to nearly 100% higher. “Genetic and environmental factors may work differently to cause Alzheimer’s disease in African-Americans,” says the Alzheimer’s Association.
Ethnic and Cultural Trends in the U.S. Population
Currently, Caucasians account for over 61% of the population in the United States, and according to recent trends reported by the U.S. Census Bureau, the number of whites is progressively declining (projected to drop below 44% by the year 2060). By 2020, it’s estimated that over 50% of the children in the United States will be of color. This statistic could be very impactful when it comes to the growing number of people with AD in the future.
Minorities and Clinical Trials
A recent report by the National Institutes of Health (NIH), released in 2013, said that minorities comprised 36.5% of the individuals enrolled in clinical trials for drugs and various medical treatments. But, other statistics show very different results. For example, “Empact Consortium,” an organization that provides training to increase minority participation in clinical trials, says that the number of participants in clinical trials is as low as 10%, or less.
One of the biggest problems with limiting the diversity of ethnic backgrounds represented in clinical trials, is that identifying drugs to treat only one group of people (white Caucasians), is not feasible when it comes to an effective Alzheimer’s treatment protocol for the future.
According to Willie Deese, former executive VP at Merck Pharmaceutical, “Given the nation’s changing demographics, it’s neither good health policy, nor good business to be developing drugs and possible cures that are tested in only a subset of the population.” Deese, an African American, has a mother who was diagnosed with AD. He remarked that within the black community, more and more people are beginning to realize that African Americans must begin to be better represented in clinical trials for AD. “We have to be included,” he said. “Enlightened companies are ensuring that that’s taking place today.” Deese added.
Before he retired from Merck, Deese earmarked $1 million dollars to be put aside for research at the Alzheimer’s, Aging and Community Health Center, located at North Carolina Agricultural and Technical State University, in Greensboro’s Center for Outreach. The center collects and studies the DNA of black patients with AD, and provides support services for its AD patients and their caregivers, while educating blacks about scientific research.
While the public is beginning to become more educated and involved in clinical trials for minorities, some significant challenges remain. For one, how to approach the high percentage of minority research participants with co-morbidities (2 or more illnesses). Another major challenge is how to encourage private healthcare providers to refer more minorities to clinical trials. According to experts, referrals from university medical centers are more equally comprised of minorities, because university staff members are more familiar with on-campus research, and how important it is to involve patients of various ethnic backgrounds in research studies.
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