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Where is the Data? The Epidemiology of Metastatic Breast Cancer

Marc Hurlbert

Marc Hurlbert

Marc Hurlbert, PhD Chief Mission Officer of the Breast Cancer Research Foundation (BCRF) writes: 

Today, we are missing important data. We don’t know how many people are living with metastatic breast cancer (MBC), how many early stage breast cancer patients have recurrences, and how the incidence and outcome of MBC have changed over time for the common subtypes of breast cancer.

There are 3.5 million women and men in the US that have had a history of breast cancer, but of these, we do not know how many are living with MBC today. A lack of information on the incidence and prevalence of MBC is a critical issue: it hinders an understanding of the scope of MBC and limits the ability to convey the urgency for more research and the development and deployment of support services. It is impossible to effectively advocate for this group of patients without key data about the population and the disease, for which there is no cure.

In contrast, consider the numbers that inform decisions in other critical diseases. More than 23,000 people in the mainland US and Puerto Rico have contracted the Zika virus, according to the Centers for Disease Control and Prevention (CDC), including 2,000 pregnant women. The CDC estimates 21 babies have been born with birth defects related to Zika.

How is it that we have such solid estimates, and nuanced details, of a new health threat but we don’t have accurate statistics on a disease that kills 41,000 women and 500 men each year in the US?

Read the rest of this article here. 

Sign our petition here: “SEER & CDC: Start Counting ALL People Living With Metastatic Breast Cancer!”