Today the Metastatic Breast Cancer Alliance (MBCA), a coalition of 29 breast cancer nonprofits, individuals and pharmaceutical companies, released the first-ever assessment of the metastatic breast cancer (MBC) community as whole, from basic statistics about the population to an analysis of current research to the prevailing stereotypes and gaps blocking progress in treatments.
The MBCA, established a year ago today on National Metastatic Breast Cancer Awareness Day, launched the report this morning at a reception in New York attended by advocates, alliance members, volunteers and stakeholders.
Metastatic disease, as most patients know, is when cancer has traveled from the primary site to another location in the body, typically the bone, lungs, liver, or brain. The disease, incurable but treatable, continues to claim approximately 40,000 lives a year. It is estimated that 150,000 people of all ages and all racial and ethnic groups are living with MBC. At best these are “creative estimates,” important to note since current recording systems established by SEER registries note the original breast cancer diagnosis, initial treatment then death. Consequently a diagnosis of either recurrent or metastatic disease isn’t recorded anywhere. As the authors point out, it is difficult to plan services for a population that is not fully defined.
The review also includes a thorough analysis of the current research scene, noting that only 7% of the breast cancer research investment in North America and the UK combined is dedicated to metastatic disease. Other areas comprehensively reviewed include quality of life studies of MBC patients, patient information and support services, the daunting gaps in epidemiology, and public misconceptions about metastatic breast cancer.
This is an important document for the #BCSM community with many topics to discuss. Let us know your areas of concern/interest and we will schedule a talk to address them. You can download a copy of the report here.
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