As African Americans continue to grapple with health inequities, the Congressional Black Caucus Foundation (CBCF) Annual Legislative Conference (ALC), held Sept. 11-Sept. 15, provided a safe space for conversations on how to eradicate disparities in Black communities. In the Sept. 12 panel “The Road to Health Equity,” examined the justified mistrust, representation and inclusion of Black communities in varying clinical trials.
In a conversation moderated by Anthony Coley, political analyst, and NBC, CNBC, and MSNBC on-air contributor, panelists discussed the importance of inclusive and equitable clinical trials, trusted messengers, and the need to address past and present barriers to encourage community engagement.
“Historically, minorities, due to…medical apartheid in this country, like we fear the police, I think we also have this in our DNA to be mistrustful of any kind of research that we don’t understand, that we might be guinea pigs for,” said panelist Dr. Leroy O. Perry Jr., pastor of St. Stephens AME Zion Church and Cultural Ambassador to the Yale Clinical Research program. “And so, this is almost a natural distrust. The question is, how do we get beyond that?”
From the Tuskegee experiment, where Black men were not treated to cure complications from syphilis, to Henrietta Lacks, whose cancer cells were taken without her permission and used for research that has been critical to modern medicine, Black Americans have a reason to be wary of clinical trials.
However, clinical trials, a method of research that assesses the effects of interventions on health-related biomedical or behavioral outcomes, are critical to the advancement of medical equity and medicinal improvements. Inclusivity and diversity in clinical trials are imperative to find treatments for those persons who are most impacted by the particular condition or disease being studied.
Clinical trials can provide access to new treatments and approaches to care that may not be available to patients commercially. However, Coley echoed the extreme apprehension that many Black Americans feel at the offer of clinical trials or promotion of medical interventions, similar to the COVID-19 vaccine.
“I remember when COVID started. [At the time], Johns Hopkins was in Southeast D.C., and they were passing out the vaccine. I respected the vaccine, and my problem wasn’t with the drug maker, but it was Johns Hopkins,” Coley shared. “Henrietta Lacks was in the back of my mind. The skepticism is real. It is deep, and it is rooted.”
According to the American Society of Clinical Oncology, an analysis of over 433,000 patients taking part in interventional clinical trials in the United States between 2010 and 2021, showed that Black people represented just 15% of participants overall. Further, only 8.5% of that population participated in oncology trials, despite representing 14.6% of the American population.
Historically, statistics show a disproportionately high percentage of White patients included in clinical trials nationwide, while minority groups are often underrecruited.
Increasing diversity in clinical trials is critical in improving health equity and the quality of care, including advancing more effective drugs, surgeries, diets, lifestyle interventions, and behavioral approaches.
“The importance here is: how can we partner within the health ecosystem with folks that are trusted within those communities to ensure that we’re bringing how to access, how to get the care or the treatment needed, and where clinical trials can be a part of that healthcare continuum and not something that is unattainable,” panelist, Dr. Daryl Sleep, Amgen’s senior vice president for Global Medical explained.
Healing Medical Mistrust In the Black Community
Further adding to the conversation, Teshia Harris, MBA, MHS, chief strategy officer at Yale Center for Clinical Investigation (YCCI) at Yale School of Medicine, discussed a collaborative partnership entitled Equitable Breakthroughs in Medicine Development (EQBMED). This collaboration, with Morehouse School of Medicine, Yale School of Medicine, the Research Centers in Minority Institutions Coordinating Center (RCMI-CC) at Morehouse School of Medicine, and Vanderbilt University Medical Center is leading a national effort to diversify participation in clinical trials.
The initiative aims to address misinformation and historical mistrust, ensure easy accessibility to trials, and increase awareness of the various benefits of diverse participation in clinical trials.
“When you talk about bringing clinical research to our community… it’s about making sure that the community will trust, participate and take action,” Harris explained. “Part of EQBMED is making sure that the sites that are in the community, where the community members live, work, play, pray, [are] around the corner, [so they can] have the same opportunity to participate in innovative drug discovery.
Launched this year, the initiative will include cardiovascular trials, obesity trials, diabetes trials, and cancer trials, underscoring diseases that are disproportionately affecting Black community.
Partners of the initiative are working to ultimately reframe the narrative and mistrust between African Americans and the health care system, eager to implement studies that will improve health outcomes and reduce disparities.
“It is so important and so central to where we are in the community and partnering with the community. Making sure that those sites know how to have a sustainable partnership so that the conversation can happen in their community, and that individuals can trust what they’re hearing and who they’re hearing it from,” Harris said.