The California Black Health Network (CBHN) hosted their Health4Life Series on breast health – “Clinical Trials and Triple Negative Breast Cancer,” for Metastatic Breast Cancer Awareness Day, in connection with the California Life Sciences and Women’s Cancer Resource Center. The discussion was moderated by CBHN’s Executive Director Rhonda Smith and included guest speakers Ricki Fairley, Cianna Leatherwood MD, MPH and Marya Shegog PhD, MPH.
Black women represent 5% of participants in breast cancer clinical trials, though. breast cancer is the leading cause of death in Black women aged 45-84.
Black women are three times more likely to be diagnosed with triple negative breast cancer compared to White women.
“Increased attention for diversity is on the rise with awareness events throughout the US and the implication of new FDA Guidance on requiring diversity plans. Advocacy for fair representation of minority groups have historically been a challenge in clinical trials,” said Leatherwood, clinical research director for Gilead Sciences.
Research studies need diverse participants to represent the patient populations that may use the treatment. Decreased participation in clinical trials is due to lack of opportunity, patients never being asked by their healthcare provider, fear, safety, unfamiliarity, transportation and time.
Triple Negative Breast Cancer is harder to treat because it does not respond to hormone treatments like other versions. It is a subtype with the fewest treatment options and no therapies to prevent recurrence. Two gene variants found in Black women may explain why they are more likely to be diagnosed with triple negative breast cancer than White women.
Fairley, co-founder of TOUCH-the Black Breast Cancer Alliance emphasized the importance of standard of care.
“Our When We Tri(al) Movement acknowledges earned mistrust in medical research, re-establishes trust, dispels myths, educates and empowers Black breast cancer patients to advocate for themselves.”
A clinical trial is a research study with participants to test medical products to demonstrate safety and to see if they are effective. There are four phases for a trial, some lasting from months to years.
Government agencies such as the Food and Drug Administration and the Office of Human Research Protections create and enforce the rules for clinical trials. Treatment is decided randomly, it may be blinded, placebo-controlled and include new therapy. Clinical trial participation is an opportunity to advance Black health equity. The factors of access to advances in treatment, resources, support, and understanding how treatments work.
“Whenever I would hear ‘clinical trial,’ I would always think ‘experiment’ because it was never really broken down to me, I never considered it, and I’ve never been approached personally to participate. But I know with my former oncologist, I wouldn’t say that I trusted him too much…he didn’t really answer a lot of my questions”, stated a patient.
Almost two-thirds of patients have discussed clinical trials with their doctor, but it’s the patient who is more likely to initiate this conversation.
About 30% of all newly diagnosed Black breast cancer patients are younger than 50 years old. Black women have the lowest survival rate after a breast cancer diagnosis. The five-year survival rate for Black women is 81% versus 92% for White women. Black women are 61% more likely to develop metastatic breast cancer, and are diagnosed with de novo metastatic breast cancer at a 58% higher rate than White women.
“When you’re being faced with a cancer in your body it’s a hard time and any help you can get will help. Understand what clinical trials are out there and what works and doesn’t work. You want to know what you can do. You want to be able to make an educated decision,” said Shegog, Health Equity and Diversity Director for Lazarex Cancer Foundation.
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