A small percentage of patients with metastatic breast cancer participating in clinical trials in the U.S. are Black, which, according to a patient living with the disease is a huge concern since it doesn’t represent the general population.
Black patients with metastatic breast cancer are less likely to trust and participate in clinical trials due to a lack of information and assurance of equal treatment, according to the results of a recent survey.
Among racial and ethnic groups in the United States, Black patients who have breast cancer have the highest death rate and shortest survival — however, they are the least likely to enroll in clinical trials. Specifically, 15% of patients with cancer in the U.S. are Black but only 4% to 6% participate in clinical trials.
The issue, according to Stephanie Walker, is that oncologists can’t truly evaluate how a treatment will work across different patient populations if a clinical trial doesn’t include a sample of people that represent the general population.
Walker, who is Black, and is living with metastatic breast cancer presented the results of the survey during a press briefing ahead of the 2022 American Society of Clinical Oncology (ASCO) Annual Meeting.
The purpose of the survey, Walker said, was to better understand the barriers Black patients with metastatic breast cancer face in regard to participating in clinical trials. The survey was administered via social media, as well as by members of the Metastatic Breast Cancer Alliance and included 424 patients with metastatic breast cancer, 102 who self-identified as Black.
Black respondents trust and satisfaction rates with their oncology team were high, above 90%. Moreover, 83% of Black respondents were somewhat or very likely to consider participating in a clinical trial. However, 40% reported that their care team had not discussed clinical trials with them.
Additionally, Black respondents were more likely than non-Black respondents to believe unstudied treatments may be harmful (57% vs. 31%, respectively) and were less likely to trust trials (73% vs. 91%).
Other reasons for not participating in a clinical trial included worry about side effects (73%) and effectiveness (63%), as well as logistics such as travel and added cost.
Black respondents were also less likely than non-Black respondents to trust that people of all race and ethnicities would be given fair treatment in a trial (32% vs. 56%) and would be more motivated to participate if there were assurances that people of their race would benefit (83%).
Furthermore, Black respondents were more likely than non-Black respondents to value information on clinical trials if given by someone who is of the same race or ethnicity (67% vs. 10%), has had breast cancer (73% vs. 44%) or metastatic breast cancer (73% vs. 51%).
More Action is Needed
To address the concerns of Black patients with metastatic breast cancer, Walker said that more effort is needed to better inform patients, inspire their trust and ensure access to clinical trial.
Additionally, Walker noted that bringing in people who are of the same race and have been through a similar journey with breast cancer could help inspire Black patients to participate in, and trust clinical trials.
“We want to inspire Black people with metastatic breast cancer to participate in these clinical trials,” Walker explained. “So, in order for that to happen, we trust people that look like us, that are from the same racial or ethnic background, those that have … participated in clinical trials, those that have had breast cancer or metastatic breast cancer.”
Walker added that clinical trials are often held at teaching/university-based cancer centers, and not community-based cancer centers where some of these patients may be receiving treatment. As a result, many Black patients are either unaware of the trials or have limited access to get to them.
“To address the concerns that we have, you need to communicate clearly about the issues and worries that metastatic breast cancer patients have,” she said. “You have to understand that some of the compelling motivation for Black patients to participate in clinical trials is to ensure that people like (them) will benefit.”
Additionally, Walker said all stakeholders have a role to play in increasing trial participation. For instance, the survey-respondent base needs to be expanded. She highlighted that the investigators hope to reach a broader group of people to better represent the Black patient experience.
She also noted that members of the Black Experience of Clinical Trials and Opportunities for Meaningful Engagement, also known as BECOME, initiative will meet with other groups to share the results of future studies to create strategies to improve care.
Other initiatives that could increase clinical trial participation for Black patients with metastatic breast cancer, Walker added, may include improved patient education, training health care providers on effective patient communication and helping patients find and access clinical trials.
Health care providers also need to be better educated on how to communicate with Black patients, as well as to understand those who live in rural communities may not have the access they would need to participate in a clinical trial.
“You need to know where we are coming from. You need to know what we go home to everyday isn’t always what you believe it (to) be, as the White patient has all the support and resources that they need,” she concluded.
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