Last year, former model, designer and restaurateur B. Smith (nee Barbara Smith) revealed her longstanding battle with Alzheimer’s disease during an emotional interview with CBS News.
For Smith, who was the first African-American model to cover Mademoiselle magazine in July 1976, going public with the revelation has inspired her and her caregiver-husband, Dan Gasby to team up with the Brain Health Registry in an effort to urge minorities to enroll in clinical trials for cognitive disease.
According to the Alzheimer’s Association, of the more than five million Americans affected, elderly African-Americans are two times more likely than elderly whites to develop Alzheimer's -- and less likely to have a diagnosis of their condition. Such contributing factors can stem from the risk of genetic underpinnings or Alzheimer’s relationship to heart disease, hypertension and diabetes, rates of which are higher in the black community.
During a recent interview with the Huffington Post, Gasby explained the couple’s goals to have more people of color involved in Alzheimer's research, and to work to dismiss preconceived notions about the disease.
“The biggest misconception is people believe that only old people can get it. And the reality is people now in their 40s and 50s are showing signs of early-onset Alzheimer’s and dementia,” he revealed. “And then within the African-American community we don’t want to deal with things that have certain stigmas to them. And so, we don’t want to talk about it and we try to hide it. And that’s not the way to get it done.”
Studies have suggested up to five percent of people living with the disease have younger-onset Alzheimer’s, affecting people under the age of 65 and as young as those in their 40s and 50s.
“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, 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.”
The staggering underrepresentation of clinical trial diversity has been attributed to an array of factors for subjects from diverse racial backgrounds, including mistrust of the medical establishments, logistical barriers and cost to name a few, according to a 2014 Health Affairs article.
Gasby went on to explain to HuffPost through his experiences raising awareness that African-Americans often express a significant amount of mistrust with the medical community. In fact, the television producer compared their apprehension to the ongoing mistrusts of policing in many of America’s black communities.
“It’s all systemic. This is at the very root of race and government and feeling oppressed, and so we the people don’t trust these organizations,” he admitted to HuffPost. “And we gotta find a way to build trust, because it’s in 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.”
“This is a 21st century civil rights issue in terms of understanding that Alzheimer’s have to be dealt with, and that we have to find a way to work with pharmaceutical companies and research companies to get involved so that the data that they collect is going to help us.”
To help close the gap on clinical trial diversity, in 2011 President Obama signed the National Alzheimer’s Project Act. In addition to Obama’s efforts, last year the Pharmaceutical Research and Manufacturers of America (PhRMA) partnered with the National Minority Quality Forum to launch a national education program, “I’m In,” to raise awareness amongst underrepresented participant populations to help researchers develop potential life-saving medicines.
Smith and Gasby will be celebrated for their efforts to raise awareness about the disease during an intimate fundraiser in New York City on May 11. Proceeds will support the educational efforts of Positive Approach to Care, a non-profit organization that helps people to cope with changing needs due to the effects of dementia.
To find out more on the couple's Brain Health Registry initiative check out B. Smith's PSA below and click here.