Open letter to Dr Snyderman

Stage IV metastatic breast cancer (MBC), women and men alike, remember Julie A. Eisele (1963 – 2012) who advocated for MBC awareness via political parties, the media, Susan G Komen and other organizations. This is a mission statement to ask to be SEEN and HEARD; for the public to look beyond the pink ribbons of survivorship, and realise that research for those with incurable metastatic breast cancer is underfunded. We feel as though we are ignored by the ‘survivors’, the media and breast cancer charities who are the very people who should be supporting us.

Dr Snyderman, you were one of those that Julie reached out to in the hope of starting a dialogue and to get some media attention of the problems that we face within the breast cancer community. Julie contacted your office in mid May but she died on 8th July 2012 at the age of 49 having been diagnosed with breast cancer 9 years ago and lived with MBC for 3 years. Her research showed that the average survival time from a mets diagnosis was 2 – 3 years, which proved to be so for Julie.

Less that 2% of breast cancer research funding is devoted to MBC, although we make up about 30% of the breast cancer community. If Julie had the same breadth of treatment options that are available to early stage breast cancer ‘survivors’ she may still be with us, playing with her children and advocating for the rights of her Mets Sister who, like her, are dying to make a difference.
The members of the newly formed group “Inspired Metastatic Breast Cancer Advocacy” invite you, Dr Snyderman, to join our discussion so we can fulfill Julie’s aspiration of a better understanding of this disease. We respectfully ask that you help us to make this dream a reality because Julie’s voice and message still echo in our hearts and gives us hope for a better tomorrow. MBC robs many of us of that hope and without a fair share of the research and funding we only have today, but we also want tomorrow.

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4 Comments

  1. Judith Curtis Brown

    Clarification please: You mention that only 2% of funding is for MBC. What funding? In the UK or worldwide? I certainly understand your point. If 30% of the BC community are MBCs (like you and me) then it seems we should get a bigger share of the funding. Good luck with your advocacy. Judi, Inspire member, USA

    • The best figure that I have seen for Mets research in general is 4% in Europe. A few years ago I asked Cancer Research UK how much of their £400m research budget they spent on any form of metastatic cancer research and the answer was about 1%. As breast cancer is the most high profile cancer it is possible that a lot of that £4m goes to MBC, but bearing in mind that these are the cancers that kill that is not a very high percentage.

      It is not just the amount of money, it is also a matter of how it is used. Pharmaceutical companies produce the meds that we need but their focus is on profit and not finding a cure, and they rely heavily on publicly funded research paid for by the tax payers of various countries for their ‘break thoughs’. I am reading Marcia Angell’s book ‘The Truth About Drug Companies, and how they decieve us. It is shocking and even more so because she is a M.D. who was the editor of The New England Journal of Medicine for many years and so she has been able to see how these companies work during 20 years working at one of the world’s premier peer-reviewed medical journals.

  2. There was a report done by NCI researchers Patricia Steeg, Ph.D. and Jonathan Sleeman, Ph.D. that appeared in the European Journal of Cancerr in 2010 (Cancer Metastasis as a Therapeutic Target) on stage IV research – all cancers. They studied representative organizations in the U.S., Canada, and western Europe. The highest percentage came in at 11.6% (Switzerland), the lowest at 2.3% (US – American Cancer Society). No comprehensive study has been done that I am aware of since Clifton Leaf’s work (US only) in 2004 (Why We’re Losing the War on Cancer [and How to Win It]) at which time he assessed stage IV research in the US as being less than 1%. It is pitiful. I applaud this new website and all initiatives to raise awareness and funding for the stage IV community. I would mention that METAvivor has doubled it’s research program and will award at least $150,000 in MBC research grants in 2012 and we are on schedule to award over $200,000 in MBC research grants next year.

    • I knew I had seen some stats in a journal somewhere, so thanks for reuniting me with the source! Sadly there is no organisation here in the UK for mets which is very frustrating. I am fed-up with everything seeming to be about survivorship and what to do after you have finished treatment. I just find it amazing that so little is being done to research the types of cancer that kills, even though they use the numbers who die to raise funds. When did they become so soulless and avaristic?

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