Can You Hear Me Now? An Open Letter to NBCC

An email today from Sharon Ford Watkins of the National Breast Cancer Coalition is requesting input on defining the 2013 Legislative and Public Policy priorities. The fact that they are asking the “masses” what we think is a good thing. The fact that the “masses” have not yet been heard on the topic of metastatic breast cancer – not so good. Below you will find my response to their request.

Dear Sharon,

You don’t know me, but I have been an eager and vocal supporter of NBCC for the last four years or so. As soon as I had learned about NBCC I knew I had found an organization that “got it” and a place where my voice would reach much further and deeper than it ever could on my own.

When Deadline 2020 was launched I, along with so many others, stood with NBCC in supporting and even justifying the strategy. As a LEAD graduate, both my advocacy and my own healthcare have benefited from what you have taught me. With the skills and encouragement found at the annual Advocacy Summit I have launched a blog, served on peer review with the Department of Defense, attended the 33rd San Antonio Breast Cancer symposium, and found a place for myself in a variety of specific breast cancer communities/organizations. I know my annual membership and limited monthly contribution cannot begin to cover your investment in me. For all of this, I thank you.

But…

I was devastated by the email you sent today requesting feedback on Legislative and Public Policy priorities for the coming year. In it you state:

As you know, in 2010, NBCC set a deadline and developed a strategic plan to end breast cancer by 2020. The plan focuses on primary prevention, stopping women from getting breast cancer, and understanding and preventing metastasis (the spread of cancer), which is responsible for 90% of breast cancer deaths. Recommendations for 2013 should take into account how the proposed priority moves our plan towards meeting the overall goal of Breast Cancer Deadline 2020—ending breast cancer by January 1, 2020.  (Emphasis mine)

I have spoken out on this matter before (Life on the Margins) and I thought in the past year we had seen improvement, but this was a major slide backwards; one that has me on the edge of withdrawing my support in shame.

As you state in your own email, metastatic breast cancer is responsible for 90% of breast cancer deaths. (One might argue that number is even higher…) You also share that your “plan” focuses on the prevention of mets. A lofty and worthy goal, to be sure. And a goal that leaves the estimated 162,000 of us living with mets in the dirt, trampled by the stampede of sexier topics like the Artemis vaccine. Your  recurring choice to focus on the prevention of metastatic breast cancer quite simply writes off our lives.

Part of what drew me to NBCC was my sense that priorities were set based on science, on objective need not impulsive topics that “sell.” Part of what will send me away is to see you sell you like so many other breast cancer organizations have. Please, Sharon, don’t allow NBCC to douse itself in the same pink rhetoric we see everywhere. Women die from mets; let’s focus our attention on the real issue at hand. Let’s tackle what kills us…

Sincerely,

Lori Marx-Rubiner

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21 Comments (+add yours?)

  1. Kathleen Hoffman, PhD
    Jan 03, 2013 @ 12:34:16

    I’ve shared your post on twitter and G+ great job!

    Reply

  2. Susan Zager
    Jan 03, 2013 @ 13:34:24

    Lori, this is a great letter to the NBCC and very important. Like Kathleen I agree you did a great job with it. Let’s hope they are listening.

    Reply

  3. The Accidental Amazon
    Jan 03, 2013 @ 14:59:46

    Yup. Words matter. Priorities matter. Reality matters.

    Reply

  4. vtashman
    Jan 03, 2013 @ 15:05:09

    Very good point, Lori. I received the same email but didn’t think that the words “preventing mets” was offensive and you’ve brought to light that it is! We not only want to prevent mets, but we want to CURE mets as well! Thank you! I’ll be sending Sharon an email sharing my thoughts about this.

    Reply

  5. Scorchy
    Jan 03, 2013 @ 20:39:52

    Brilliant. I will add my voice to the NBCC call for input.

    Reply

  6. Scorchy
    Jan 04, 2013 @ 04:57:57

    Reblogged this on The Sarcastic Boob and commented:
    Let the good folks at NBCC know how you feel.
    National Breast Cancer Coalition
    1101 17th Street, NW, Suite 1300
    Washington, DC 20036
    USA
    800-622-2838 or 202-296-7477
    @NBCC
    http://www.facebook.com/StopBreastCancer
    Fax:
    202-265-6854

    Reply

    • Lori
      Jan 08, 2013 @ 20:31:12

      I debated including their contact info – glad you did. I do respect that a membership organization should take input directly from its members, but….

      Reply

  7. chemobrainfog
    Jan 04, 2013 @ 06:48:21

    Got your back, Lori… But then, you already knew that….
    I hope they are listening and will adjust their priorities but then, you already knew that, too….

    Love you massively (that has to be a grammatical nightmarish phrase but this ongoing doublespeak about “stopping death from mets” is not only a nightmare, it’s disgraceful)…..

    About the love thing, you already know this, too…

    Me
    xoxox

    Reply

  8. Kerry Sanchez
    Jan 04, 2013 @ 16:20:02

    After picking up my jaw from the floor and clearing away the blinding, angry tears, I figured I should step back into my normal self and say something.

    Me: Prevention of metastases, brilliant! Awesome! But of course! But, uh, what do we tell the other ones?

    NBCC: WHAT other ones?

    Me: SERIOUSLY?!

    NBCC: Yeah, seriously! WHAT other ones?

    Me: Well, the others that already HAVE metastases, that are in a race against time, and are already PAST prevention.

    NBCC: Blink, blink…_________________________________________________________

    There is, above, an enormous blank for NBCC to fill. Until it is filled with something that makes sense, Deadline 2020 is simply my personal Titanic, and NBCC simply rearranged my deck chairs and is keeping the lifeboat on the other deck.

    Fortunately, there is time to backpedal! See, I’m a pretty positive person…

    Reply

  9. irenen
    Jan 05, 2013 @ 15:05:56

    Even low grade tumors can “shed” cells so maybe we should consider ALL breast cancer patients as having distant cells on diagnosis. Then the focus could be on ways to prevent these from growing or treating those that do, which would be inclusive and lengthen the lives of those living with “confirmed” metastatic disease.

    Reply

  10. Acacia
    Jan 05, 2013 @ 20:23:40

    Wonderful letter Lori! Just like all the breast cancer “awareness” crap in October, it’s sexier to work on prevention rather than trying to save those of us who are dying. So, again, we’re marginalized because we can’t promise a happy ending.

    Reply

    • Lori
      Jan 08, 2013 @ 20:37:07

      I couldn’t agree more! I am so very SICK AND TIRED of “failing” the mainstream breast cancer community. THEY HAVE FAILED US!!!!!!!!

      Reply

  11. The Savvy Sister
    Jan 12, 2013 @ 19:23:27

    There’s a great discussion about this. (you’ve probably seen and heard this) on NPR via Nancy’s Point
    http://nancyspoint.com/provocative-publicity-in-breast-cancer-awareness-campaigns-does-the-end-justify-the-means/

    Reply

  12. rachelpappas
    Feb 14, 2013 @ 21:47:31

    Not nearly enough attention on mets and I applaud you and the other metavivors, their family and friends for speaking anything but softly. I do think we need to continue focusing on prevention and cutting chance for mets; these are important, but it’s plain wrong to, as you put it, leave those with mets in the dirt.

    Reply

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