Black women die of breast cancer at a rate 41% higher than their white counterparts. Black women are diagnosed when their breast cancer is at a later stage, their outcomes are much poorer, and incidents of breast cancer among Black women have been increasing despite a drop in other populations.

Those are just a few of the reasons we need events like National Black Family Cancer Awareness Week, according to San Antonio Breast Cancer Symposium Planning Committee member Thelma Brown.

“We need weeks like this to not only bring awareness to those disparities but to open those conversations about those disparities and to hear what is going to be done to address them,” Brown says. “We hear a lot of talk about diversity, equity and inclusion and this may be a watershed moment. Awareness is fine, but we need a moral imperative to change the tide and change the story.”

Brown, a patient advocate and breast cancer survivor, says everyone involved in the cancer journey — patients, family members, clinicians, patient advocates — needs to be treated as their counterparts. She says if she were rating the level of action taken to address disparities as compared to the level of discussion, “On a scale of one to 10, I would say we’re at a one. We see a lot of talk and see a lot of feel-good moments and people get excited because we’re at least part of the conversation now. But conversation will not save a life. It’s time to move.”

The FDA says National Black Cancer Awareness Week was created, “to increase cancer awareness in one of the most vulnerable segments of the U.S. population. This initiative aims to marshal community-based stakeholders to build knowledge surrounding cancer clinical trial participation and minority population specimen donations to national genomic databases for cancer research.”

There are still so many barriers that need to be dismantled, according to Brown, to increase participation. While much of the talk centers on mistrust of health care from the Black community because of horrible experiments on the population, she says it goes beyond that.

“It’s not just things like the Tuskegee Experiment,” Brown says. “It’s how we’re being treated each and every day we go into these institutions. We don’t just mistrust the system because of the history of mistreatment. We mistrust the system because when we go in, we get suboptimal treatment.”

Increased participation in clinical trials will require systemic change, which can be a long process. and it can’t rest solely with the Black community. “It’s very complex,” she says. “It means that ALL stakeholders are no longer just talking about it but saying, ‘What can I do to move this needle,’” and then taking substantive steps to do so.