Responding to Komen’s New Awareness

MBNCBuzz just posted this advertisement by the Komen Foundation.  It is the first time that the Komen Foundation has acknowledged metastatic breast cancer, Stage IV, in a marketing campaign.

The irony that Susan Komen died of metastatic breast cancer is not lost on those who live with it.   Recurrences of breast cancer are not uncommon.  Close to one-third of the women considered “cured” of breast cancer will suffer from a spread of the cancer called metastases.  This can happen many years after their initial diagnosis.  Over 90% of breast cancer deaths are due to the spread of the disease to other parts of the body, such as bone, lungs, liver and brain.  Although there is no exact numbers collected, a rough estimate is that around 162,000 women are living with metastatic breast cancer in the United States.  There is no information collected on historic trends.  Treatments to prevent metastases do not exist.  Treatment to eradicate metastases do not exist.

There has been much discussion in the cyber world of the foibles of the Komen Foundation.  One of the best descriptions of the use of monies by Komen was written by an financial analyst Rachel Moro in her blog The Cancer Culture Chronicles.  She explains in pie charts and graphs the intricacies of Komen’s spending and reveals how in 2010 only $66 million to research in a year when its total revenues were $389 million.

Those who live with breast cancer wonder where all the money that has been raised has gone.  They are concerned that funding for research to cure breast cancer has not been directed at what actually kills breast cancer patients, metastases.  So many loved ones have been taken by metastatic breast cancer.  One of those who has been lost is Rachel Moro.

This advertisement does not come close to the whole story of Bridget Spence’s life with breast cancer.  Her most recent post on My Big Girl Pants is a poignant reminder of the suffering experienced by those who have metastatic disease.  As of August 28, 2012 Bridget’s cancer has spread.  She is not able to be a part of a clinical trial.

The National Breast Cancer Coalition has set the year 2020 as the end of breast cancer deadline.  The organization has put together a Blue Print  for the End of Breast Cancer.  The Coalition is bringing together researchers in a series of summits.  Suggestions for research provided by just one of the summits include developing technologies to detect the first signs of metastasis . Another suggestion is to do longitudinal cohort study, to follow women from the time of diagnosis, comparing those who develop distant metastases with those who do not.  A third idea is to do this in conjunction with tissue collection and genome sampling.

Funds from the Komen Foundation could be used for any of these ideas.  As Ginny Knackmuhs stated in her post the best copy for this marketing campaign would be

“The true source of HOPE for metastatic disease is research. That’s why we at Komen are dramatically increasing funding for research into the cause of metastases (the spread of cancer) to stop it in its tracks and save the lives of the estimated 155,000 women and men living with metastatic or stage IV breast cancer in the US, as well as the lives of 30% of early stage survivors who will have metastatic recurrences in the future.”

Please look at all the links to blogs of women who are trying to make a difference.  Perhaps putting more pressure on the Komen Foundation to partner with NBCC or communicate with MBCC is in order.  Ask yourself what you can do to be a part of the solution.  This effort to save those with breast cancer needs ideas and action.