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Incredible progress has been made in the fight against breast cancer, from screening to treatment – but this progress has not reached everyone equally. Compared to white women, Black women are more likely to have metastatic breast cancer – cancer that has spread to other areas of the body – as well as aggressive forms that are challenging to treat. And despite having a lower rate of breast cancer than white women, Black women are 40 percent more likely to die from the disease. There are multiple contributing factors, including that Black women are less likely to receive guideline recommended care. Additionally, there is a lack of racial diversity in clinical research for breast cancer treatments.
“Despite the impact breast cancer has on our community, some studies have shown that as few as 3 percent of breast cancer clinical trial participants are Black,” said Ricki Fairley, Chief Executive Officer of the patient advocacy group TOUCH, The Black Breast Cancer Alliance. “Ensuring diversity in breast cancer research is critical to understanding which treatments are most effective in Black women and addressing the disparities our community faces. Through TOUCH’s initiative When We Tri(al) , we are working to empower Black women to learn more about the clinical trial process and opportunities to participate.”
Types of Studies that Evaluate Breast Cancer Treatments
Randomized clinical trials are considered the gold standard and are reviewed by the U.S. Food and Drug Administration (FDA) to decide if a treatment is safe and effective. However, there are challenges: in addition to Black individuals, older people are underrepresented in clinical trials. Given that a greater number of older adults of color are expected to face a cancer diagnosis in the coming years, improvements in clinical trial diversity are needed. The FDA Oncology Center of Excellence has established Project Equity, a public health initiative working to improve access to oncology clinical trials for underrepresented groups.
Clinical research can be complemented with real-world evidence: information gathered after the FDA approves a medicine to learn more about patients’ experiences. Although real-world evidence is not meant to replace randomized clinical trials, it can be an important consideration for Black women with breast cancer, as it can provide insights into the use of a treatment among a more diverse group. Taken together, clinical trial data and real-world evidence can provide information to help decide on an appropriate treatment plan.
Importance of Self-Advocacy
“After finding a lump in one of my breasts at the age of 32 and being told initially that I was ‘too young’ to have breast cancer, I know firsthand the power of self-advocacy and of empowering others, particularly marginalized communities, which is why I have spent the past 18 years amplifying patients’ voices, and working to ensure that Black women have more equity in healthcare,” said Maimah Karmo, Founder and Chief Executive Officer of the Tigerlily Foundation, which provides breast health, educational, empowerment wellness and transformational programs to young women. “My goal is that every woman facing a breast cancer diagnosis feels empowered to work with their healthcare team to understand their treatment options and get the care they deserve.”
Those diagnosed with breast cancer can consider talking with their doctor about the research results and effectiveness of treatments in both clinical trials and everyday practice. Some questions to ask include:
- How have these medicines been studied?
- What were the experiences of others who were treated with these medicines?
- Have these medicines been studied in people of the same ethnic group or age as me?
More resources are available at ThisIsLivingWithCancer.com. You can learn more about TOUCH at touchbbca.org and Tigerlily Foundation at TigerlilyFoundation.org.
Please hyperlink to: Working to make a difference in breast cancer research – YouTube
The post Why Real-World Learnings Matter for Black Women Living with Breast Cancer appeared first on AFRO American Newspapers.
