Black/African-Americans are diagnosed with and die from cancer, including breast cancer, at higher rates than those in other ethnic groups. A key factor contributing to these disparities is low representation in cancer studies and clinical trials. As patients with lobular breast cancer are all too aware, when specific types of cancer or groups of people are not included in research in great enough numbers, it is much more difficult and takes longer to discover the most effective and relevant treatments for the specific populations.
Black/African-Americans’ cancer experiences, their voices, and their stories are not being heard. Alongside members of the community, Count Me In (CMI) developed and co-designed the Amplifying Black Voices Across Cancer (#AmpBlackVoices) digital initiative as a means to lift up, share, and shed light on the lived experiences and disparities in care and access to care that exist within the Black cancer community.
It is hoped that the effort will not only raise awareness, but will help Black patients and their loved ones feel empowered to advocate for their health. It aims to spark the conversations and actions necessary among patients, advocates, physicians and researchers, for moving forward towards true equity within cancer research and beyond.
Seeing the alignment between our organizations, given LBCA’s commitment to raising awareness about invasive lobular breast cancer (ILC), supporting patient advocacy and promoting ILC research, CMI asked LBCA to help spread the word about this initiative.
“As a leading organization in engaging patients, clinicians, and researchers for lobular breast cancer, CMI is proud to partner with LBCA in sharing the voices of Black cancer patients, caregivers, and advocates through the #AmpBlackVoices digital initiative,” commented CMI Community Engagement Manager Colleen Nguyen.
LBCA believes this initiative is extremely important and is happy to take part.
One woman sharing her experiences is Sedruola ‘Sedie’ Maruska. After a routine check-up with her nurse practitioner regarding a suspected mass, Sedie was referred to a specialist who informed her that she had lobular breast cancer. Watch Sedie’s story.
By amplifying voices like Sedie’s, the hope is that action will be taken to further include Black/African-Americans in cancer research, including ILC research. This will undoubtedly drive actionable, lasting, and transformational change within cancer research itself.
To explore, read, listen, watch, or submit your cancer story, please visit: BlackCancerVoices.org. To learn more about CMI and how to help accelerate discoveries within cancer, visit JoinCountMeIn.org.