By Washington, DC – The National Black Church Initiative (NBCI), a faith-based coalition of 34,000 churches comprised of 15 denominations and 15.7 million African Americans, initiated the first high-level scientific meeting with the Food and Drug Administration officials, on the issue of the participation of African Americans in clinical trials. This marks the first time that the Black church has utilized its enormous power and influence in the area of clinical trials.
NBCI, five years ago, unveiled a comprehensive clinical trial initiative with the goal of increasing African American participation in clinical trials by 30% entitled, Clinical Trial Education Awareness and Participation Program (CTEAPP).
Rev. Anthony Evans President of the National Black Church Initiative says, “When we first sent our letter to Commissioner Gottlieb of the FDA, we expected to be out rightly rejected. But, he accepted our invitation to meet only to decide later, after the submission of our 125-page complaint and recommendations, to back out of a Commissioner level meeting. Then the FDA tried to send us to the NIH Office of Minority Health, who does not have any regulatory authority and lack sufficient staff and budget to adequately represent the health concerns of African Americans in this country. We rejected that idea and threatened to march 30,000 African Americans in front of the FDA in downtown DC unless a meeting on clinical trials took place at the highest possible level. Of course, after that they relented.”
“Earlier during that year, we reached out to pharma and Director Francis Collins, of the National Institutes of Health. They both outrightly rejected our overtures for a partnership. They never responded to three written requests just to meet around the issue of clinical trials. As one can see, this has turned into a David and Goliath story. Since 1776 this country has never adequately addressed African American health concerns. It was only in 1985 that this country ever had an official government report on the health of African Americans under the then Secretary of Health, Education and Welfare, Margaret Heckler. Both the pharmaceutical companies and the government have consistently resisted any attempt to improve African American health, then and now. Recently we tried working with Bristol Myers-Squibb over the last two and half years and after ten face-to-face meetings and repeated promises, nothing happened. This underscores NBCI’s insistence of utilizing its broad moral authority to force the discussions around African American health outcomes and the value of clinical trials over the next five years.”
Our efforts have been centered around NBCI’s Health Emergency Declaration (HED) which is one of the most effective faith-based health models in the country, utilizing the Black Church as a health educator. The National Black Church Initiative has been around for some twenty-five years now and is building a healthcare structure in the Black church that will last for at least one hundred years to come; impacting every major demographic group in the African American community.
After over twenty years of mastering health education in the Black Church and screenings, five years ago it became apparent to NBCI and to many researchers around the country, that African American health cannot move forward unless we participate at a 30% level into clinical trials. This means that we know how to achieve parity in health statistics with the white community’s outcomes simply by including African Americans in every major clinical trial in this country. Currently, the participation rate of African Americans in clinical trials, over the last 30 years, hovers between 1 and 5% depending on the study.
Access to care, critical science-based health education, clinical trials and healthy lifestyles, are the panacea of excellent health outcomes in African Americans. These are also the four pillars of NBCI’s HED program.
There are no mysteries as to why we have bad health outcomes, and it is not our fault. The black community continues to pay for the mistakes of both the government and the pharmaceutical companies. Even within the minefield of the current opioid crisis NBCI still has hope for African Americans in clinical trials
The reason why African Americans do not participate in clinical trials is due to a dark history of racist medical practices and experiments on them. Harriet A. Washington, in her book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present, brilliantly underscores those reasons and the history behind them. The three entities that undermine African American participation in clinical trials are:
1) the lack of friendly, safe and enforceable policies and regulations by the Food and Drug Administration to compel pharma to provide the necessary