Talking about racial disparities, pushing for solutions
Patient advocates drive discussion of race, call for action
Race was top of mind at this year’s San Antonio Breast Cancer Symposium (SABCS), with talks focused on not only highlighting disparities but also finding solutions. The messaging was that it is no longer enough to know that more white women develop breast cancer, but Black women have worse outcomes, or that Black and Hispanic people are underrepresented in clinical trials. Rather, it is time to figure out why and take steps to close the gaps. Powerful patient advocates led the call for action.
The conversations started a day early with a first-ever Black Wo(men) Speak Symposium. A panel of patient advocates and physicians discussed clinical trial enrollment. The themes addressed on December 5 were echoed in the days that followed.
Black and Hispanic people are underrepresented in clinical trials. Patient-led research presented at ASCO 2022 revealed that Black people with metastatic breast cancer would be highly likely to join clinical trials if their health care team had a conversation with them about it.
In a keynote address Dr. Oluwadamilola “Lola” Fayanju, a surgical oncologist from the University of Pennsylvania, noted that conversations often focus on factors beyond our control, and that it is time to focus on what we can change.
Results from Dr. Fayanju’s research show that high-income Black women were less likely to join surgical oncology trials than low-income Black women, suggesting that even wealthy Black people experience racism in the health system. “You can be a very well-resourced Black person and still be treated very badly,” she said.
As clinical trials focus more on biomarkers, fewer people are eligible. It becomes even more important to ensure that people most affected by a subtype are represented on trials for that subtype. Dr. Fayanju cited the University of Pennsylvania’s successful outreach and engagement effort to increase participation among Black people in clinical trials as an example. The program tailored outreach and messaging to the community, incorporated strategies from the time of protocol development, used faith-based partnerships to reach people, and worked with Uber and Lyft to address transportation barriers.
Ricki Fairley of TOUCH, the Black Breast Cancer Alliance, leads “When We Trial,” an effort that promotes clinical trial participation through peer support. Peers or “breasties” talk one on one with other women about clinical trials. The organization has facilitated the registration of 5,000 women on clinical trials portals.
Peer conversations can begin to address misconceptions like the ones Jasmine Souers of For the Breast of Us has found in her work. A survey found that both Black and white women believed that only wealthy or connected people could participate in clinical trials. Black women said that a trusting relationship with a healthcare provider was most important in persuading them to participate in a trial — more important even than the race of the provider.
Souers says it is not enough to empower patients to ask about clinical trials; efforts need to focus on making it easier to participate in a clinical trial through:
- Clear communication
- Easy-to-use tools to find trials
- Financial assistance
- Logistical help
- Emotional support and access to counseling
Building a diverse database
In a session on Big Data and Health Equity, Dr. Martin Mendoza, who directs the National Institute of Health’s All of Us program, notes that Black people make up 13.4% of the U.S. population but only 6.7% of clinical trial participants. The gap is even wider among Hispanic people, who are 18.5% of the population and 3.1% of clinical trial participants.
All of Us seeks to change this by bringing together one million volunteers to accelerate research and improve health. Anyone is eligible to join. The program aims to form relationships with participants that span decades. As of December 1, there are over half a million participants in the program, 48% of whom are of non-white race or Hispanic/Latino ethnicity. Nearly 10% of participants are sexual and gender minorities, and 11.3% have a disability. All of Us collects data on social and biological factors of health from electronic medical records, surveys, and biologic samples. This effort uses strategies promoted by advocates:
- Build trust before recruiting people for trials through trusted messengers.
- Be transparent and give participants access to their own information.
- Ensure that data are secure and private.
- See volunteers as partners.
- Meet people where they are (e.g., mobile engagement for people with disabilities).
The program also tries to give value to participants. For example, participants receive ancestry data results or genetic data along with free genetic counseling.
Health disparities continue to be an active area of research. Below are a few of the new findings presented at SABCS 2022:
- Recurrence score (RS) can be used to identify post-menopausal women with early-stage HR-positive, HER2-negative breast cancer who do not benefit from chemotherapy. A new analysis of data from the RxPonder clinical trial (SWOG S1007) found that RS is not a useful tool to guide treatment for everyone. Black women in the trial had worse outcomes than white women with similar RS scores.
- Another line of research looks to the tumor microenvironment for answers. A study of tumor samples gathered from 2004 to 2014 found that the tumor microenvironment of metastasis (TMEM) is elevated in Black women with HR-positive, HER2-negative breast cancer, suggesting this could be a clue for prognosis. The same difference was not observed in samples of triple-negative breast cancer.
- In contrast, a study on the risk of contralateral breast cancer among women with BRCA mutations found very elevated risk among BRCA carriers; however, this risk was similar for both Black and white women.
Dr. Lori Pierce, a radiation oncologist from the University of Michigan, who served as a discussant from the RxPonder and TMEM research, urges thoughtfulness in how we interpret data on race. Reminding us that race is a social construct, she concluded, “Biology is indeed important, but we must also dig deeper to understand and address the hidden factors that contribute to disparities attributed to race.”
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