comscoreMany Black Metastatic Breast Cancer Patients Never Informed About Clinical Trials

Many Black Metastatic Breast Cancer Patients Never Informed About Clinical Trials

Many Black people diagnosed with metastatic breast cancer never find out about clinical trials from their doctors even though most of them are open to participating in one.
Jun 9, 2022.
 

Many Black people diagnosed with metastatic breast cancer never find out about clinical trials from their doctors even though most of them are open to participating in one, according to a small study.

The research was presented on May 26, 2022, at a media briefing for the 2022 American Society of Clinical Oncology (ASCO) Annual Meeting. Read the abstract of “Increasing Black patient participation in metastatic breast cancer clinical trials: The BECOME (Black Experience of Clinical Trials and Opportunities for Meaningful Engagement) project.”

 

Black women and breast cancer clinical trials

According to a 2020 study, only about 8% of eligible people choose to participate in clinical trials for new medicines and other treatments. But this statistic is even worse for Black people. According to the American Cancer Society and the U.S. Centers for Disease Control and Prevention (CDC), Black people made up 12% of new breast cancer cases in 2020 but only 3% of the participants in breast cancer clinical trials that led to U.S. Food and Drug Administration (FDA) approvals between 2008 and 2018.

In this study, the researchers wanted to understand some of the reasons why Black people with metastatic breast cancer aren’t enrolling in clinical trials.

 

About the study

The study was made up of three parts:

  • a literature review of 34 articles on clinical trial participation by Black patients

  • virtual interviews of 31 people, including people living with metastatic breast cancer, doctors who treat metastatic breast cancer, and hospital administrators, to identify some of the concerns and barriers related to metastatic breast cancer

  • a survey of 424 people diagnosed with metastatic breast cancer

The researchers used the information they collected during the literature review and the interviews to write the survey questions.

The survey is part of the BECOME (Black Experience of Clinical Trials and Opportunities for Meaningful Engagement) initiative, which is sponsored by the Metastatic Breast Cancer Alliance, a consortium of non-profits, pharmaceutical and biotech companies, and patient advocates. Breastcancer.org is proud to be a founding member of the Metastatic Breast Cancer Alliance.

Of the 424 people who completed the survey, 102 people (24%) self-identified as Black.

Of the 102 Black people diagnosed with metastatic breast cancer:

  • more than 90% were satisfied with and trusted their oncology care team

  • 83% were likely to consider participating in a clinical trial

  • 40% said no one on their care team had talked to them about clinical trials

  • 73% said concerns about side effects were a reason they didn’t want to participate in a clinical trial

Of all the people who completed the survey, Black people were:

  • more likely to be concerned that unstudied treatments could be harmful

  • less likely to trust clinical trials

  • less likely to trust that people of all races and ethnicities are treated fairly in trials

  • more likely to value receiving information about clinical trials from other Black people or someone with the same health experiences

  • more likely to participate in a clinical trial to ensure other Black people benefit

“This study was initiated in 2019 and led by a very special and ardent advocate of inclusivity in breast cancer trial enrollment,” lead author Stephanie Walker, RN, said in a statement. Walker is also the project lead for the BECOME initiative. “Sadly, she passed away from metastatic breast cancer, but we all strive to continue her efforts by bringing the patient voice and authenticity of advocacy to our work so that we can demonstrate the impact that patients can have on the clinical trials process.”

Based on the study’s results, the researchers want to add steps to the clinical trials enrollment process to increase participation by Black patients, including:

  • informing Black patients about clinical trials

  • training doctors and other healthcare providers to talk about clinical trials in an unbiased, patient-friendly way

  • having patients talk to people of their same race and ethnicity about clinical trials

  • having patients talk to people with the same health experiences as them about clinical trials

  • addressing concerns about side effects, effectiveness, and fair treatment

  • helping patients find and access clinical trials

“These study findings reinforce the important role that healthcare teams have in boosting participation in clinical trials, particularly for Black patients living with metastatic breast cancer,” Julie R. Gralow, MD, FACP, FASCO, ASCO chief medical officer and executive vice president, said at the media briefing.

 

What this means for you

For Black people diagnosed with metastatic breast cancer, the results of this study are likely discouraging.

But the good news is that you can help bring about change in breast cancer research. By being your own advocate and asking your doctor about clinical trials that might be a good fit for your situation, you can start to transform clinical trial participation.

If you’d like to do your own research on clinical trials, the Metastatic Breast Cancer Alliance offers MBC Connect, a registry where you can share your diagnosis and treatment history and get potential matches to clinical trials.

Nadine Barrett, PhD, founding director of the Office of Health Equity and Disparities at the Duke Cancer Institute, joined the Breastcancer.org Podcast to discuss how the Just Ask program is increasing diversity in clinical trials.

Learn more about Clinical Trials.

Written by: Jamie DePolo, senior editor

— Last updated on June 22, 2022, 4:11 PM

Reviewed by 1 medical adviser
 
Brian Wojciechowski, MD
Crozer Health System, Philadelphia area, PA
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