Commentary: Health Equity for African Americans Demands Diversity in Clinical Trials
To achieve health equity, we must ensure that all populations have equitable access to clinical trials and the benefits of medical research. African Americans, who make up over 13% of the U.S. population, represent only a small fraction of clinical trial participants. With the right mix of resources, dedication, compassion, patience, and time, we can positively impact communities nationwide, write BrightFocus President and CEO Stacy Pagos Haller and board member Tonya M. Matthews, PhD, in a new op-ed.
By Tonya M. Matthews and Stacy Pagos Haller
To grow up African American is to experience health inequity first-hand, everywhere, all the time. You see loved ones and friends who aren’t well but can’t or won’t see a doctor to find out why, while others find out why but can’t afford the treatment they need.
You see your elders die without seeing their grandchildren’s faces one last time or remembering their own names. There are the sad, resigned stories of “well, that’s just old age and hard living for black folks”— but is it because they were never properly diagnosed, properly treated or properly considered for a potentially life-changing therapy in the first place?
Recent conversations have begun offering candid insight into the systemic and historical racial biases that impact health outcomes, from basic mental wellness to debilitating brain conditions such as Alzheimer’s disease. Two factors are essential prerequisites to better health outcomes for all: a transparent focus on the equitable application of medical treatment and cultural competence in health care.
To get there, however, we must also focus on equitable medical science, in the lab and in clinical trials. Just imagine: A game-changing new therapeutic breakthrough has arrived, and your loved ones can take it, confidently, because it was designed for them and tested in clinical trials on folks just like them. So they have lofty expectations it will work for them, safely. Now imagine: The same loved ones, the same therapy, but instead they’re told, “Sorry, this may not work for you because it wasn’t tested on anyone like you, with your background.”
Clinical trials are at the heart of medical research and fundamental to developing new, safe and effective medical treatments for everyone. The historical underrepresentation of racially diverse people in these trials persists to the detriment of millions today and also to future generations. While African Americans make up more than 13% of the U.S. population, their representation in most clinical trials is a small fraction of that and recently began heading in the wrong direction.
We live in an age of “personalized medicine” — when an individual’s genetic profile can help guide critical health-related decisions that need to be made for the prevention, diagnosis and treatment of diseases that arise as we age. Personalized medicine holds enormous promise — for those inside the clinical trial tent. For those left out, it’s just one more case of have-and-have-not health care.
Some good news: Congress recently required clinical trial sponsors to provide diverse enrollment action plans and directed the Food and Drug Administration to report annually on whether these plans are meeting their goals. An economist might say: “Great, this requirement should generate steady demand for minoritized participants. But that doesn’t guarantee that the supply will be there.”
Unlike in the film “Field of Dreams,” just because you build it doesn’t mean they will come. They may not have the opportunity to come. So how do we harness this new demand and build that opportunity, in the Lowcountry and beyond?
We must start by building trust. Seeing the doctor and seeking health treatment are steps that don’t always come easily to people whose well-founded mistrust of the medical establishment spans generations. Add to that, one has to volunteer as an experimental research subject in something called a “trial,” and the trust mountain is high and steep.
In rural Valdosta, Georgia, there’s one of the country’s most ambitious pilot projects to scale that summit. Focusing on brain health and the conditions of Alzheimer’s and dementia, the Valdosta Pilot has made great headway by engaging with community members collectively and one on one, over time — steadily building understanding, the will to be well and trust. The core takeaway: This isn’t a one-and-done deal. It’s an enduring people-focused community engagement that requires resources, dedication, compassion, patience and time.
This isn’t just about historical injustice. It’s about science — specifically, what we know about why different racial and ethnic groups vary significantly by genotype and environment, how prone they may be to a given condition and how they may respond differently to therapies.
Not long ago, raising the possibility of racial and ethnic genetic differences was seen as academic, irrelevant and even hurtful. Not anymore. Medical discovery is exploding at the genetic level. At the International African American Museum and BrightFocus Foundation, we understand that identity matters. Passing down family stories matters, including stories of health and wellness, of fighting for freedom and equity. We now know those stories are more interrelated than once realized.
The journey to health equity for African Americans is a complex, beckoning narrative that should command unwavering attention. Attaining equity in medical research will be a critical milestone.
Tonya M. Matthews is president and CEO of Charleston’s International African American Museum. Stacy Pagos Haller is president and CEO of BrightFocus Foundation, which supports scientific research worldwide to defeat Alzheimer’s, macular degeneration and glaucoma.
Bipartisan congressional briefing highlighted the importance of funding and diversity in research to improve health equity, cure brain and vision diseases.
Read about some of the ways BrightFocus Foundation is taking action to reduce health disparities and inequities among underrepresented communities and better meet the precise health needs of these populations.