#BlackDataMatters (#BDM) is our movement to mobilize the Black community to participate in clinical trial research.
Starting with Black Breast Cancer, the mission of #BDM is to put Black patients in a position of power to change clinical research and to catalyze change in the medical system that often fails us.
#BDM was founded in June 2020 on the premise that Black Breast Cancer deserves special attention and focus from the breast cancer ecosystem. Black breast cancer patients die at a 41% higher rate than white breast cancer patients—this devastating mortality statistic will not change until we better understand the physiology of Black women.
Therapies and drugs currently available for breast cancer have not been effectively tested on Black women, who make up less than 3% of breast cancer clinical trial participants. We just don’t have the science to know if approved treatments work on our bodies. And since Black women with breast cancer have a 71% higher relative risk of death than white women and a 39% higher recurrence rate, we know that current treatments aren’t working as well as they need to for us.
The thought of a clinical trial can be scary. In fact, part of Black women’s reluctance to get involved in medical research may be attributed to the fact that nearly one-third of us believe scientists cannot be trusted, compared to 4% of white women. Frankly, with stories like Henrietta Lacks and the many Black men who died at the hands of the Syphilis study at Tuskegee, the medical industry has earned our mistrust.
But without our participation in clinical research, Black women are missing out on access to the newly emerging and often life-extending treatments that could save us. Until we have more Black women included in research, we cannot put an end to the disparities that Black breasties face.