Minority Participation in Clinical Trials can Help Everyone Fight Alzheimer’s

Growing up as an African-American in the South over 75 years ago, my family didn’t have the access to medical care we do today. One event from my childhood changed my life. 

My mother went to the doctor’s office. She was quite ill and needed help. The doctor said she had to wait to be seen until after all of the white patients were assisted. It was at that moment I decided to become a doctor. 

Since then, times have changed and gotten better, but there’s still a pervasive problem in health care for the African-American community. We are underrepresented in medical research and therefore often last in line when finding effective treatments and therapies for diseases. A particular area that should be of concern to all minority populations is Alzheimer’s disease.

African-Americans are twice as likely to have Alzheimer’s than Caucasians according to the Alzheimer’s Association. The higher rate of prevalence unfortunately translates into a higher death rate. Alzheimer’s deaths increased 55 percent among all Americans between 1999 and 2014, and these deaths increased 99 percent for African-Americans, according to the Centers for Disease Control and Prevention. But this is a point of disparity that we, as a community, can help repair. 

This alarming gap has developed for many reasons. All minority communities are often underrepresented in clinical trials. According to the Food and Drug Administration, while African-Americans represent 12 percent of the total U.S. population, they comprise just 5 percent of clinical trial participants. 

Minority groups are essential to clinical trials and can become powerful advocates for change. Clinical trials are the key to finding a treatment, and one day a cure, for Alzheimer’s disease. The University of Kansas Alzheimer’s Disease Center, or KUADC, is leading this effort. Named by the National Institute of Aging as one of 31 nationally-designated Alzheimer’s disease centers, the KUADC is working with local organizations and community groups to drive participation in clinical trials among African-Americans. These groups include: the Global Alzheimer’s Platform Foundation and the Black Health Care Coalition

This collaboration is part of the Memory Strings Kansas City Alliance, an initiative developed by the Global Alzheimer’s Platform Foundation and its president, John Dwyer. It is the first of its kind to address the growing impact of Alzheimer’s on our local community through research, education and engagement. 

For researchers to cure Alzheimer’s, participants from all walks of life need to join clinical trials — and that includes those who aren’t diagnosed with Alzheimer’s. Simply visit www.memorystrings.org and then search for active clinical trials in the Kansas City area. As Mr. Dwyer says, “The first person to be cured of Alzheimer’s will be a clinical trial participant.” 

Ultimately, we’ll all enjoy better health and treatment outcomes through the benefits of research. It’s not only time for African-Americans, but for all of us to get in the front of the line by volunteering to participate in research.

Jasper Fullard recently retired after 40 years as a doctor of internal medicine in the Kansas City area.

Originally posted on The Kansas City Star on November 6, 2017. Available as a PDF here.

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