Roughly a year after former model and current restaurateur Barbara Smith, better known as B. Smith, opened up about her battle with Alzheimer’s disease, she and her husband are urging the Black community to look past their history with clinical trials in order to help further Alzheimer’s research.
Alzheimer’s is one of the many diseases that has a disproportionately greater impact on the Black community.
According to the Alzheimer’s Association, elderly Black citizens are twice as likely to develop the disease although they are less likely to actually have a diagnosis.
Stigmas in the Black community and a general mistrust of medical institutions have kept many people from seeking professional help even when they show early signs of having the illness.
With so few Black people seeking medical attention or volunteering to become a part of clinical trials, B. Smith and her husband, Dan Gasby, are concerned that there isn’t enough information available to completely understand Alzheimer’s impact on Black people.
“The big thing that Barbara and I talk about is that we need more Black people to take a chance on being a part of the drug trial movement,” Gasby told The Huffington Post. “Because if we don’t get this right and get the right medicines, our kids and our grandkids — 30, 40, 50 years from now, while groups may have figured out how to combat or change this — they could still be at a disadvantage because they don’t have the right sampling and representation.”
There is a clear lack of Black participants in clinical trials, but it’s generally believed to be a result of a troubling history that the community has had with such research.
In the past, trials have put Black participants at risk without making them aware of any risks while also targeting impoverished communities with predominantly Black residents who were participating in trials simply because they couldn’t afford any other option for medical care.
The medical community created a history of taking advantage of the Black participants rather than showing a genuine interest in helping them.
Despite that bleak history, Gasby hopes the Black community will understand that that they can’t live in fear of trials forever and still expect to see advances in medicine that will benefit them in the long run.
“It’s all systemic,” Gasby added. “This is at the very root of race and government and feeling oppressed, and so we the people don’t trust these organizations and we gotta find a way to build trust because it’s our own selfish interest to get the best medical care because we deal with all the other issues that some people don’t have to deal with by the virtue of not being Black.”
He added that without becoming an active part of finding the solution, medical researchers won’t be able to collect the kind of data that could truly help the Black community.
Smith and Gasby’s efforts in Alzheimer’s research were recently honored during a New York fundraiser on May 11. All proceeds from the fundraiser were donated to Positive Approach to Care, a nonprofit organization that helps people cope with changing needs due to the effects of dementia.