A Focus on Brain Health Research in the African American Community

by Latorius Adams, MS, Social/Clinical Research Coordinator

As we celebrate Black History Month, it is good to keep in mind a sobering statistic. According to the Alzheimer’s Association, African Americans are two to three times more likely than whites to develop dementia.  They are also much less likely to participate in research. More than 6 million people in the United States have Alzheimer’s and this number is expected to double by the year 2030. About one out of every nine persons over the age of 65 is living with Alzheimer’s and one in three will die with this incurable disease. Because our population is growing, African Americans who are entering “the age of risk” (age 65 and over) will more than double to 6.9 million over the next 30 years. What does this mean for you and your loved ones when it comes to finding new tests and treatments and, we hope, eventually a cure?

The main goal of clinical trials is to see if new drugs, tests, vaccines, changes in behavior or technologies are safe and effective to cure or treat the illness being studied. In the past, most drugs were tested on white men. Groups such as African Americans, Hispanic Americans, Native Indians, Asian Americans, and women usually did not participate in high numbers. Why is this a problem? Studies have shown that drugs work differently among different people. It is important to make sure we understand how to use drugs to get the best results in all people.

Why don’t African Americans sign up for studies? For many there is a lingering fear that they will be joining harmful medical experimentation based on unethical and cruel clinical trials that took place in the past. You may have heard of the “Tuskegee experiment,” which was conducted from 1932 to 1972 by the U.S. Public Health Service. In this study, researchers knowingly withheld treatment from African American sharecroppers with syphilis to study the disease.  Another high-profile example is that of Henrietta Lacks, a poor black tobacco farmer whose cancer cells were taken without her knowledge in 1951. Henrietta Lacks’ cells, today called “HELA” cells, became one of the most important tools in medicine.

This lack of trust in the healthcare system makes people not want to join studies and so researchers learn less about Alzheimer’s disease in African Americans.  This, in turn, contributes to care that is based on studies of white people and isn’t proven effective for African Americans.  Learning about how Alzheimer’s disease affects African Americans differently than whites can only happen if African Americans participate in the research that is needed to improve drug therapies, patient care and understanding of the disease in this group.

As a research coordinator one of my goals is to help people understand the value of medical research among African Americans. I want to reassure you, the reader, that safeguards are in place to ensure that the abuses of the past will not occur again.  For example, all researchers must now get approval from the Institutional Review Board before they can ask anyone to be a part of their research. This approval requires that potential risks and benefits along with specific study requirements are clearly explained to all participants. Participants give their voluntary consent to participate and know that they can withdraw at any time. These protections benefit all research participants.

Many people living with Alzheimer’s disease want to do something to help find a better treatment or a cure. They want to help others. One way to help is to participate in research. Not only does research help future generations, but in some studies, it may help those participating as well. Study participants may receive new medications or free check-ups as a part of their participation or maybe they join a study looking at whether improving one’s diet lowers risk of dementia.

The goal of the NC Registry for Brain Health is to encourage all groups to participate in research so that everyone has an equal chance for early diagnosis and quality care. When you join the Registry, you will receive regular updates including quarterly newsletters filled with brain health information, research discoveries, events, and resources to help you and your loved ones. You will also hear about studies that you might want to join (this is up to you to get in touch with the study team or not – we don’t share your information). As a caregiver, you will be doing something positive to help move us forward in understanding this disease you experience each day.

Any North Carolinian over the age of 18, with or without a memory disorder, is welcome to join the Registry. To learn more and join, please visit: ncbrainhealth.org; you can also contact the registry staff at 919.613.8633 or NCBrainHealth@duke.edu