The Breastcancer.org Special Report pinpoints barriers that prevent people of color from participating in clinical trials, and examines how to overcome those obstacles
Breastcancer.org, a leading source of patient-focused breast cancer information and an online community for people impacted by breast cancer, released a new Special Report today on increasing racial diversity in breast cancer clinical trials. Several experts leading efforts to improve access to clinical trials will be speaking at the organization’s virtual town hall on Wednesday, October 13, at 7 p.m. ET and answering audience questions about clinical trials. The event is free and open to the public, and everyone who registers will receive a recording of the program.
In the United States, racial and ethnic minorities have been underrepresented in cancer clinical trials for decades, even when they have a similar or higher risk of the type of cancer being studied. Not being included in clinical trials may be one of the reasons that Black women have worse breast cancer outcomes than other racial and ethnic groups. Black women and white women in the United States get breast cancer at about the same rate, but Black women are 40% more likely to die of breast cancer.
“We need everyone appropriately represented because we want to make sure a therapy works the same way and the side effects are the same in different populations,” said Karen Winkfield, M.D., Ph.D., executive director of the Meharry-Vanderbilt Alliance in Nashville, Tennessee, and a contributor to the Special Report.
The Breastcancer.org report examines common barriers that prevent people from enrolling or remaining in a clinical trial, including:
- Not finding out about clinical trial opportunities. Many people of color don’t learn about clinical trial opportunities because their doctors don’t present them as an option.
- Lack of trust in the healthcare system. Some people, especially Black people, may not trust that clinical trials are conducted in a safe and fair way because of their own personal experience of discrimination in a healthcare setting or historical incidents involving highly unethical medical research practices, or both.
- Out-of-pocket costs. Clinical trial participants often have out-of-pocket expenses like parking, gas, taxis, airfare, and lodging that are not covered by the trial or health insurance.
- Travel and transportation. To participate in a clinical trial, people typically have to travel for regular in-person appointments at an academic medical center. Whether that center is across town or across the country, the travel can be time consuming and expensive.
Read the full list and learn how people affected by breast cancer can find clinical trials on Breastcancer.org.
The Special Report was developed with medical experts and through interviews with Black women who participated in breast cancer clinical trials. The resounding message is that awareness, education, and self-advocacy can improve clinical trial inclusion. Systemic change will be a result of doctors, researchers, pharmaceutical companies, medical societies, government health agencies, and research institutions doing their part to increase access to clinical trials for people of color.
The virtual event to discuss the report, Diversity In Clinical Trials: Your Participation Matters, begins at 7 p.m. ET on Wednesday, October 13. Featured speakers include Marisa Weiss, M.D., Breastcancer.org chief medical officer; Nadine J. Barrett, Ph.D., MS, MA, director, Center for Equity in Research, Duke Clinical Translational Science Institute, Duke University; Karen Winkfield, M.D., Ph.D., executive director of the Meharry-Vanderbilt Alliance in Nashville, Tennessee; Lola Fayanju, M.D., MA, MPHS, FACS, chief of breast surgery at Penn Medicine; and Athena Jones, CNN National Correspondent. Registration will remain open until the start of the program.
Breastcancer.org is a leading patient-focused resource for breast health and breast cancer education and support. Their mission is to engage and empower people with research, expert information, and a dynamic peer support community to help them make the best decisions for their lives. The nonprofit organization, founded in 2000 by chief medical officer Marisa C. Weiss, M.D., has reached 174 million people worldwide since inception. Visit www.Breastcancer.org for more information.
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