What would I say to the Media … about Komen

Susan G. Komen For The Cure has suggested that those of us with Metastatic Breast Cancer (aka Stage IV, Advanced or Secondary Breast Cancer) contact our local newspapers and media outlets to get them to feature awareness of Metastatic Breast Cancer. So here are a few facts that you might like to highlight.

• Metastatic Breast Cancer is incurable.
• Metastatic Breast Cancer is when the cancer has moved from the breast to distant places in the body, often the bones, liver, lung and brain.
• Metastatic Breast Cancer gets about 3% of research funding overall to enable treatments to be found for us (http://www.metavivor.org/Awareness_30430.html) which means that 97% of research funding goes to curable Early Stage Breast Cancer.
• Metastatic Breast Cancer affects 30% of the breast cancer community and causes 40,000 deaths in America and 400,000 deaths each year globally. Another 10% are diagnosed already at Stage IV.
• Metastatic Breast Cancer research received $79m from Komen between 2006 – 2011 http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&frm=1&source=web&cd=3&cad=rja&ved=0CGIQFjAC&url=http%3A%2F%2Fww5.komen.org%2FuploadedFiles%2FMBCAD%2520Komenlink%2520Article.pdf&ei=meQyUr-hPOrV0QW1n4CoCQ&usg=AFQjCNFgfFopkSkDLuOGXana4cyxwoezYg&sig2=3XhAcx4IweG_T8nC1NC_qw which would work out at about $13.1m a year.
• In the 2009-2010 fiscal year, ending March 31, 2010, Komen reported approximately US $400 million in earnings http://en.wikipedia.org/wiki/Susan_G._Komen_for_the_Cure, which could translate to $2.4billion in the same period. In 2009 – 2010 $75.4m was used for research, of which Metastatic Breast Cancer could have received about $13.1m. In the same year that they spent $40.6 million toward general and administrative costs.

Sadly the level of funding for Metastatic Breast Cancer research, which is the only Stage of the disease which actually kills, are universally low. There are about 162,000 http://mbcn.org/education/category/prevalence/ people (men get breast cancer too) living with Metastatic Breast Cancer in the US alone. We are dying because of the lack of research funding and also because too many researchers are clinging to a paradigm that is not producing results.

If you feature Metastatic Breast Cancer, especially in October during Breast Cancer Awareness Month (of which we have one day of awareness, the 13th) we may be able to change the funding of research to a more realistic level, and help change the paradigm that is holding back truly innovative research.

I think I have got the maths right, but that is one reason I included links to my sources, so others can check that my brain didn’t fart during the calculations.

Komen is the Big Mummy of breast cancer charities / non-profits, but sadly this could also apply to other organisations, and is also one of the main forces behind Pink anything and everything for breast cancer. This is why it is important for us all to THINK before we commit out hard earned money to any organisation, especially one which espouses PINK. I would never give to Komen, and I won’t give to any other charily / non-profit unless they have MBC at the centre of their ethos. In the past when asked to donate to a BC charity I have not given to the one suggested but to METAvivor.org who are the only non-profit that I know of anywhere in the world, who focus 100% of their donations on MBC research.

P.S. Seems I may have misinterpreted the forum post and it is not Komen who is suggesting that we do this, but that MBCers should contact the media to say that Komen, with its Pink Ribbons and awareness, but to point out that Komen is making a bit of a nonsense of it all with their obsession with Brand, Pinkness etc. I think my ‘letter’ still addresses some of these points.


1 Comment

  1. Sadly, the basics of this could apply to so many other charities and non-profits.

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Health Communications and Health Advocacy

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