Doctors and other leaders discuss the prostate cancer disparity, clinical trials enrollment and solutions to increase participation of African American men in clinical trials.
- While the FDA has recently taken important steps to increase racial and ethnic diversity in clinical trials, panelists agree that Black patients are underrepresented in most prostate cancer clinical trials (approximately 5% of the 22% US prostate cancer population), due to many socioeconomic disparities.
- Panelists agree that there is still an unquestionable need to increase participation of African American men in clinical trials to improve trial results and provide them access to equitable care.
- PHEN’s Clinical Trials Rally objective is to increase African American Participation in Clinical Trials and includes numerous tools and resources to help men navigate the clinical trial process.
“More and more clinical trials are being developed for patients with specific molecular findings, but the question is—does it really matter, if we don’t have diverse representation in these clinical trials?” asked Kim. “Patients must have access to new molecular testing and imaging technologies, but are we sure that there will be equitable access to allow all our patients to participate to those patients who need it the most? And again, that’s our black men.”
-Won Kim, MD, Senior Medical Director in Clinical Oncology, Janssen
‘Diversity of Enrollment in Prostate Cancer Clinical Trials: Current Status and Future Directions.’ “If you look at the numbers between 1995-2014, the trials had a decrease in population of African American men from 11.3 percent to 2.8 percent. Yikes! What is happening there?”
-Elisabeth Heath, MD, FACP, Professor of Oncology & Medicine, Karmanos Cancer Institute
“The type of trials that are important to the communities that we are discussing here is done without a lot of input from the community and that’s something we need to do a better job of addressing as a research community.”
“An important part of this is considering different ways that we can bring these trials closer to where these patients, live and worship and work, rather than expect participants to make that trek to that large academic center.”
–Lola A. Fashoyin-Aje, MD, MPH, Oncologist and Deputy Division Director, Food and Drug Administration (FDA)
“If you take a step back, we could do better as a society for engaging men, not only men of color, but all men around early detection and screening so they don’t end up in a metastatic trial.”
-Neil Fleshner, MD, MPH, FRCSC, Chair, Division of Urology, Professor, Department of Surgery, University of Toronto
“I come from that great population that is disenfranchised, who didn’t give a hoot what my PSA reading, weather I needed a DRE or needed genetic testing. I never even had a general practitioner until I was diagnosed, with prostate cancer.”
“When I was offered the opportunity to participate in a clinical trial. And I’m not here representing them, but because I’m alive, I’m representing something.”
“It’s going on 12 years, and I had stage four prostate cancer. I was not a candidate for surgery, chemo, or radiation.”
Mr. Euvon Jones, PHEN Ambassador
“If there are gaps in understanding what’s genetically predisposing people and we’re making inferences about the rest of the world based on the big chunk of the population that has already been tested, it’s a disservice.”
Justin Lorentz, MS, Genetic Counselor, Odette Cancer Center, Sunny Brook Health Center
“For us it isn’t about a checklist, it’s about meaningful engagement to make sure that we are including diverse populations.”
Four years ago, we partnered with PHEN to create PHEN path. And for us it was important because it was something that you and your organization had the idea for how you were going to bring it to life, pin it to NCC guidelines and drop the education level so that it was easy to understand.”
“One of the most amazing things that PHEN did was spend time with my family talking them through what the options look like. One of the most important messages you shared with them was to think about clinical trials as a form of treatment, and it wasn’t something that they had considered in that regard.”
Linda Murakami, Director of Advocacy, Amgen Oncology
“There are multiple barriers that make a clinical trial inaccessible, like distrust/mistrust, and the financial burden of participation.”
“In some of our trials, we’re trying to have 100 percent of our participants be black men, because we’re trying to develop studies that are going to get rid of some of the disparities and inequities that we see.”
Yaw Nyame, MD, Assistant Professor and OCOE Program Lead, Department of Urology, Fred Hutch Cancer Center, University of Washington
“We know that inclusive participation will move science forward for those who are adversely impacted by conditions like prostate cancer.”