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These are numbers that we do not wish to see: African-Americans have the highest death rates for most cancers compared to other racial groups. Black patients also have the shortest survival rates for most cancers. Florida has the second highest cancer incidences than any other states.
Yet we see them every day, and not just as numbers – but as brothers, fathers, husbands, sons, friends, and fellow community members who succumbed to cancer.
Disproportionately sick
According to the American Cancer Society, Black Americans continue to carry the greater burden for cancer in America. Even as overall cancer incidence and mortality rates continue to improve, thanks to better diagnostics and cure, Black patients continue to lag behind their White counterparts in this improvement.
By a startling contrast, Black patients’ enrollment in clinical trials – a scientific way of testing new and often breakthrough diagnostics or therapeutics for any given disease – is oftentimes a dismal low.
Clinical trials are known to promote better understanding of diseases and therefore improve on methods of disease prevention and cure, and it is often a critical step toward medical innovation and better patient care. Yet, clinicians and researchers continue to note low Black patient participation, which in the past has resulted in failed trials.
Known risks
Clinical trials are known to bear some risks, such as unexpected side effects after a new drug is received, for example – but these risks are controlled through stringent scientific and medical rules set by the federal government agencies, including the National Institutes of Health, the Department of Health and Human Services and the Food and Drug Administration, that provide oversight.
Conversely, participating patients often feel that benefits, such as being among the first to receive breakthrough care and treatment when other measures have been exhausted – or contributing to medical research that will ultimately benefit the larger community – far outweigh the risks. Additionally, as Blacks continue to be underrepresented in clinical trials, it also means that their genetic, social and cultural makeup continue to be missing in scientific research and medical care benchmarking that might improve overall quality of life for the entire group.
Why aren’t Black patients participating in clinical trials? Previously documented barriers include social, cultural and historical factors. Everyday-life circumstances such as overall lack of access to care, health insurance limitations, lack of childcare, and work-hour demands all pose as challenges to participation.
Tuskegee remembered
Myths, disbeliefs and mistrust serve as further mental roadblocks. The Tuskegee clinical study, which lasted until 1972 and led to legislation for protection of human subjects in studies, is still a recent memory. Cultural concepts associated with diseases, or the assumption of blood involved, may act as deterrents too.
There also have been instances of physician-centric barriers, such as researcher or physician stereotype of the "non-compliant minority patient," resulting in exclusion criteria being written into the research protocol.
But all this is about to change. A research project is under way to not only identify key barriers, but also unlock any key motivators that may impact Black men’s participation in prostate cancer clinical trials.
The long-term goal of our research program is to eliminate barriers impacting Black men’s participation in biomedical and clinical research. University of Florida researchers are exploring highly innovative community-based interventions to educate Blacks, such as providing education and resources through community pharmacies in minority and medically underserved communities.
Ultimately, we want to see an equitable distribution across all major racial and ethnic groups in the participation in clinical trials. At present, as Black men are disproportionately affected by prostate cancer, correspondingly, we need to understand and breakdown those barriers that prevent them from participating in prostate cancer clinical trials.
Project underway
A one-year project to learn more about these barriers began in December 2010, with 10 community pharmacies owned or managed by Black pharmacists in Hillsborough County (Tampa) serving as centers to recruit 300 eligible participants.
For more information and to learn more about participating in biomedical research and clinical trials, please contact one of the participating pharmacies:
• Tampa Drugs, 1010 E. Busch, Suite 102, Tampa, 813-231-7788;
• Hillsborough Specialty Pharmacy, 4505 E. Hillsborough Ave., Suite D, Tampa, 813-628-8400;
• KABS Pharmacy of Brandon, 652 Oakfield Dr., 813-413-8362;
• KABS Pharmacy of Tampa, 2812 E. Bearss Ave., (813) 988-4000;
• Extra Care Pharmacy, 2001 East Fletcher Ave, Suite 101, Tampa, 813-558-9300.
Folakemi Odedina, Ph.D., a professor in the College of Pharmacy and outreach director for the College of Medicine’s Prostate Disease Center at the University of Florida.