NBCC: You Can Blow Out a Candle But You Can’t Blow Out a Fire

Let us pause and have a moment of grateful silence for whatever myopic moron at Komen signed off on the “Promise Me” perfume alliance. What a gift for the dog days of summer–so ripe for mocking.

Even the MSM couldn’t resist this one. OMG! Finally! Some national pushback against the great pink tidal wave that crests every October.

NBCC’s Breast Cancer Advocate blog  couldn’t overlook this big old pink elephant in the bathtub either. Established in 2009, this blog, subtitled “Blogging For an End to Breast Cancer,” kicks off with:  “Add disillusioned breast cancer survivors and the power of social media together and you have a storm brewing against the mother of all cause marketing – pink ribbons and breast cancer. ”

There’s mud in your eye, Nancy Brinker.

NBCC’s inaugural  Metastasis Summit,  (August 24-26, 201)  sounds like a step in the right direction.  According to NBCC, the Summit will “bring together 35-50 stakeholders, leading investigators, regulators, and advocates, to develop a strategic plan…  The goal of the Summit will be to identify the key questions to carry into catalytic  workshops [Catalytic? More matter with fewer adjectives, Polonius ]   in 2012, in order to  get the research accomplished and translated to the clinic as quickly as possible.”

NBCC says “Changing the conversation around breast cancer and metastasis must be much more than our Summit. The conversation needs to change in laboratories and classrooms, in the media, in the workplace, the halls of Congress, online, at the kitchen table. We want to hear from you. How are you changing the conversation? What do you think needs to happen to meet Breast Cancer Deadline 2020?”

I am so glad you asked!

I think there need to be less talking and more action.

Now.

As one of 155,000 people in the US currently living with metastatic breast cancer, I would like to know what NBCC plans to do specifically for us living with MBC right here, right now.

We can’t wait until 2020.

NBCC has steadfastly resisted a single focus on any one group of patients.They remind members “It’s not about YOUR cancer.”

Well why not???

If I am not for myself who will be for me?

Cancer is NOT a democracy. My needs and concerns as a 45-year-old woman with MBC are not the same as 65-year-old grandmother with DCIS. Yet, from what I can discern, NBCC expects all of us to do the same thing, to all move forward in lockstep.

Well slow and steady will lose the MBC race for me and my fellow 155,000 runners.

What about our African American brothers and sisters? Being a black woman with metastatic breast cancer is surely to be a minority within a minority.

Shouldn’t we be giving some priority to those who desperately need help right here, right now?

The head of the American Cancer Society thinks so:

“If we did what we already know, at least 37% of cancer deaths in people between the ages of 27 and 64 could be avoided right now,” writes ACS’s Dr. Len Lichtenfeld. “Where is the national conversation about the fact that poverty is a carcinogen?  Are you talking about it?  Is the media talking about it? If the silence is deafening, then perhaps you have your answer. ”

Rather than bashing a lamentably easy pink-ribbon target, I would love to see NBCC extend the olive branch to Komen, BCA and other “rival” pink groups.  Imagine all the advocacy groups working together. You may say I’m a dreamer. But  what would it take to make that happen?

I know that some patient advocates belong to several different groups. But what about the senior leadership of these groups? Are they attending each other’s summits/conferences/planning sessions? Couldn’t there be an open exchange of ideas? Don’t we all have something to learn from each other?

Are we having a true conversation? Or preaching to the choir?

Jane Soyer and Nina Schulman founded the Metastatic Breast Cancer Network  (MBCN) in 2004.

Soyer, an NYC public school teacher, mentor and guidance counselor died in 2005. Schulman, an Emmy Award-winning film editor, producer and director, died in 2008.

Schulman  ranted when other breast cancer organizations would light a candle for all who died that year and then go on with business as usual–business that excluded doing anything to meet the unique needs of the MBC population.

“We need to keep this awareness growing,” wrote Ellen Moskowitz in an email announcing Michele Przypyszny as her successor as the president of MBCN. “We need to speak up and not allow MBC to be put on the back burner. We need to ensure that National Breast Cancer Coalition (NBCC) includes research to STOP metastatic spread—and not just to prevent metastatic spread. So much has changed for us since I was diagnosed.  I am so proud to have been a contributing factor to this change. We are bonded and our voice is louder than ever–we are actually being heard!”

NBCC: Are you listening?

Candles are classy.

Moments of silence can be very comforting–for the living.

But that’s not good enough for me.

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6 thoughts on “NBCC: You Can Blow Out a Candle But You Can’t Blow Out a Fire

  1. Kathi says:

    Agreed. If MBC is not front and center in all our concerns and actions around breast cancer, then what is the point?

  2. Rose says:

    Katherine, you are an amazing woman.

  3. Katherine I think you make excellent points here in your blog….here is the comment that I posted to the BreastCancerAdvocate blog written by Laura N. who works for NBCC.

    “Thanks for this post Laura, and thanks for including me in your list of rebellious bloggers. There are certainly some other names that I would also include like Nancy’s Point, Bringing Up Goliath and most certainly IHateBreastCancer who has also commented here.

    Ironically it has taken a pink bottle of perfume to get this conversation into the national press, but the “perfume” to me has also become a metaphor for all that is wrong with the breast cancer movement in its present form. The questions raised by the bloggers, which appear on the surface to be just about Komen’s perfume and pink ribbons, in fact are much deeper. So far pink culture has not delivered on its promises and we have poured billions of dollars and resources into a cause with not much to show for our efforts. I firmly believe that NBCC and other organizations like Breast Cancer Action are leading the way in thought leadership providing a much-needed alternative perspective and actions to pull us out of the pink rut we seem to be stuck in.

    Sadly, it’s taken decades for the issue of metastatic breast cancer to make it onto the wider breast cancer agenda, but I feel that the NBCC’s Metastasis Prevention Summit is at least a good start. Komen is also starting to indicate an interest in MBC, not least with the recent appointment of mets researcher Danny Welch to their Scientific Advisory Council. And organizations like Metastatic Breast Cancer Network and MetaVivor continue to fiercely advocate for the needs of the mets community.

    But to KatherineMBC’s point there is more work to be done, particularly for those people living with MBC now, myself included. She is right, in that we cannot wait until 2020. My hope is that through this first NBCC summit, and with the Advanced BC conference in Lisbon later this year, that we will see some action items, that could provide benefit to the MBC community in the nearer term, or at least a plan of action for the future that includes help for those already dealing with metastatic disease. In particular, I am thinking of the work of mets researcher Pat Steeg, which if translated to the clinical setting, could provide enormous benefits, both for outright metastasis prevention, but also therapeutic benefit for existing metastases. (http://provocativequestions.nci.nih.gov/proposed-provocative-questions/Questions/question_1303305591)

    I’ll be watching very closely for action items and indeed questions from this August mets summit, that the bloggers can take up and amplify via social media. The clock is ticking towards 2020, but it’s also ticking a little bit louder for those of us in the mets community.

    Laura, I certainly do hope that we can all work TOGETHER to bring about real change to the outcomes of this wretched disease.”

  4. nancyspoint says:

    “We need to speak up and not allow MBC to be put on the back burner.” I could not agree more. Keep speaking up, Katherine. We all have to.

  5. Stacey says:

    Katherine, you are a stunning writer and exactly right. Hopefully, it won’t take until 2020 for positive change. As you said, we can’t wait. Thank you.

  6. Katherine, excellent posting. Maybe that bottle of perfume was just the straw that broke the camel’s back. Maybe the public will see the urgency of a cure….now!

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