Black people with breast cancer want to know about clinical trials
BECOME is patient-led research that offers new insights into barriers and sets the course for members of the Metastatic Breast Cancer Alliance
Findings from the Black Experience of Clinical Trial and Opportunities for Meaningful Engagement (BECOME) study, sponsored by the Metastatic Breast Cancer Alliance, were presented at the annual meeting of the American Society of Clinical Oncology (ASCO) on June 6, 2022. Lead author Stephanie Walker, MS, a metastatic breast cancer advocate and graduate of LBBC’s Hear My Voice advocacy program, presented the findings during an ASCO poster discussion session – an honor bestowed on fewer than 1% of posters submitted.
Black people are diagnosed with breast cancer at younger ages, are more likely to have triple-negative breast cancer, and have worse survival outcomes as compared to white people. Research – often in the form of clinical trials – is key to understanding the reasons why and reducing these disparities. Yet doctors struggle to recruit Black people to participate in clinical trials.
Clinical trials offer people with cancer a way to try promising medications before they are approved by the Food and Drug Administration. The clinical trial approval process takes years. Early access to these drugs is crucial for people with metastatic breast cancer (MBC) that has grown on approved therapies.
The United States has a history of unethical treatment of Black people in medical research. Though today the law aims to protect participant safety, this legacy of mistreatment continues to influence everyone involved in the clinical trial process, from health care providers to people with cancer.
In 2020, ASCO began working with the Association of Community Cancer Centers to increase racial and ethnic diversity in cancer treatment trials. As part of this collaboration, they recently released recommendations for steps the clinical research community can take to increase participation of underrepresented groups in clinical trials.
The story of BECOME
The BECOME study was led by Walker as a continuation of research begun by Marina Kaplan, an epidemiologist. Both women turned to advocacy after being diagnosed with MBC and were trained as Living Beyond Breast Cancer Hear My Voice Advocates. In 2019, during her volunteer term, Kaplan conducted research into barriers that prevent people with MBC from participating in clinical trials, and her research was presented at the San Antonio Breast Cancer Symposium that year. At SABCS, Kaplan told Walker she was disappointed in the number of responses from Black people, and asked Walker to work with her on a similar study among Black people. Kaplan died of MBC not long after, leaving Walker to carry out her friend’s vision.
A strong voice for the MBC community, Walker is a member of the Metastatic Breast Cancer Alliance, serves on the advisory board for LBBC’s Knowledge is power program, and is a Susan G. Komen Advocates in Science member. Research, however, was new to her, but she was ready to learn. Her persistence resulted in eye-opening results that will inform clinical trials recruitment moving forward.
“Before her diagnosis with metastatic breast cancer, Stephanie was a hospice nurse. LBBC was her first stop, where she learned about advocacy. She went on to learn more about the science and research process,” said Janine Guglielmino, who represents LBBC on the BECOME subcommittee of the Metastatic Breast Cancer Alliance. “She also brings to this work her lived experience as a Black woman with metastatic breast cancer, ensuring every person diagnosed with metastatic disease can reap the benefits of treatment given through clinical trials.”
The BECOME study revealed that Black people with MBC are interested in learning about clinical trials, but their health care teams infrequently tell them about them. It also offered insight into their perceptions of clinical trials and why they may be more or less likely to join a trial.
A total of 424 people with MBC responded to the survey, which was shared through social media networks and in paper, with 102 participants who identified themselves as Black. The findings for Black respondents were:
- 83% reported being somewhat or very likely to consider a clinical trial. Yet 40% said that their health care team had not discussed clinical trials with them. This compares to 33% of non-Black respondents.
- Most (90%) Black respondents trust and are satisfied with their cancer care team.
- Black respondents were more likely than non-Black respondents to have concerns about side effects (73% vs. 63%) and more likely to believe unstudied treatments may be harmful (57% vs. 31%).
- Importantly, Black respondents value learning about clinical trials from someone of the same race/ethnic identity (67% vs. 10%), who had breast cancer (73% vs. 44%), or had participated in a clinical trial (72% vs. 48%).
- Black respondents were more likely to join a trial to ensure people of their race or ethnicity would benefit (83% vs. 51%).
Walker emphasizes the role of clinician biases in how Black people are received by the health system and how this affects the health care they receive, including the opportunity to hear about clinical trials. “When a doctor comes into the room of a patient, they already have preconceived ideas. Black patients are seen as non-compliant, not educated enough, or hard to deal with. They will not complete treatment course, and they will not be interested in, qualify for, or afford clinical trials. These thoughts are there, even before having a conversation. You need to break down those stereotypical attitudes before you can progress on building a relationship with oncologist based on who you are.”
Walker hopes to see more larger studies and provider education come out of this research. A symposium among several organizations advocating for greater clinical trial access for Black people is being planned for the fall.
What this means for you
This study shows it may not be possible to rely on a health care provider to start a conversation about clinical trials. As a person with breast cancer, you can kick-start a conversation. Ask if your doctor knows of trials that might be a fit for you, or bring trials of interest to you by using the Metastatic Trial Search tool. Tell your doctor what you find, or call or email the trial coordinator on your own, even if they are at another hospital or cancer center. Clinical trials accept eligible patients from all over. You don’t have to live in the geographic area where a trial is based, and you can sometimes access assistance for travel or other support to make participating in a trial possible.
The Metastatic Breast Cancer Alliance is setting priorities to address the barriers identified in BECOME in the coming years, gathering the collective resources and power of its membership, including LBBC. Some strategies may include helping healthcare providers to understand their implicit and explicit biases that influence when, how, and how often they suggest clinical trials. Keep up to date on the activities of this initiative by visiting the BECOME project page of the alliance.