On Saturday, December 22nd, Susan G Komen of Florida released a video featuring Susan Brown, Senior Director of Education & Patient Support. The 2:11 min. video entitled “Say This, Not That” leveraged Susan G Komen National’s partnership with the Metastatic Breast Cancer Alliance to take subtly aim at the widely accepted statistics regarding Metastatic Breast Cancer patients.

Ms. Brown begins by referencing a study authored by MBC Alliance and the National Research Center that used a model to determine the number of women living with MBC which is 154,000 and growing. She goes on to say the study concluded the increasing number of women living with Metastatic Breast Cancer is due to an aging population and better treatments.

Ms. Brown fails to include the Population Impact of the study, which is biggest takeaway from the study. The study concluded that The increasing burden of MBC highlights the importance of documenting recurrence to foster more research into the specific needs of this understudied population. Additionally, the death rate from Metastatic Breast Cancer has not significantly changed in over 30 yrs. It has actually increased 10% for both women and men since 2015. (ACS).

Ms. Brown then focuses directly on the widely accepted statistic that 20-30% of those diagnosed with early stage breast cancer can and do go on to develop Metastatic Disease. Ms. Brown proudly proclaims that Komen Florida doesn’t say that because there is no reliable source for that data. Additionally, she claims that many of those previously treated for early stage breast cancer won’t develop Metastatic Disease.

That is a very concerning and frankly highly irresponsible to be reporting information that contradicts many studies and even peer reviewed data presented by respected Researchers at the 2018 San Antonio Breast Cancer Symposium held earlier this month. A study entitled “Dynamics of breast cancer relapse reveal molecularly defined late recurring ER-positive subgroups: Results from the METABRIC Study,” was presented by Christina Curtis from Stanford University.

One of the most important slides from that presentation can be found here:

Presented by Christina Curtis from Stanford University.

The very first point clearly called out that “While prognosis from early stage Breast Cancer has improved dramatically, 20-30% of patients will recur with incurable disease.” While it’s common knowledge that SEER does not count Metastatic Breast Cancer Patients correctly, this statistic isn’t one that was pulled out of the air on a whim. There is no benefit in disputing this information, in fact to do so is counteractive to Komens “Bold Goal,” Metastatic marketing plan and new partnerships they have been trying to forge within the community to prove their sincerity.

If Susan G Komen wants the Metastatic Community at large to take them seriously, that they are really trying to change, they’ll correct this with their Florida affiliate. Responsible & respected non-profits don’t talk out of both sides of their mouth. They can’t have a “Bold Goal” campaign when the issue is turned into a half-hearted objective by local executives. Responsible & respected non-profits have the same cohesive message across the board.

It is the position of METUP that Komen Florida do the following:

1. Pull the “Say This Not That” video from all social networks and public viewing.

2. Ms. Susan Brown issue a public apology for using the Metastatic Breast Cancer Alliance as a platform for her agenda in which she tries to discredit the seriousness of a disease that kills 114 lives every day. As a Senior Director of Education & Patient Support, she is neither educating nor supporting patients in saying many early stage patients won’t ever recur.

Susan R – President &
METUP Executive Board Members

METUP Statement RE: Komen Florida

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