Komen Shuts Down Other Opinions

from politico.com

Yesterday I wrote about my utter astonishment in the “Singing Mammogram” released by Komen. A quick read of Twitter, as well as comments on my blog, suggest I’m not alone. In fact, it would seem that enough people offered negative feedback on the YouTube page that Komen has turned off the comments.

As the president of another breast cancer organization, I readily recognize that not everyone will agree with me, or with our organization’s take on the issues. I know that there are many opinions. I also know that I’m pretty strong in stating mine. I don’t tell people that they were wrong, but rather that I disagree. I don’t eliminate opinions I disagree with. And I most certainly never, EVER, no matter how confrontational or oppositional a comment, fail to invite open discourse on my blog.

As amazed as I am that Komen approved such a demeaning and sexist video, I’m even more amazed that they have sought to avoid dialogue by simply ignoring the voices of anyone who doesn’t support them.

Is this really how a leading breast cancer organization should behave? How will shutting down our voices lead to “the cure?” What say you?

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OUTRAGE!

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In 2012 METAvivor launched it’s “Elephant in the Pink Room” campaign to highlight that despite pervasive awareness of breast cancer thanks to both legitimate awareness campaigns and “Pinktober” marketing, what we still try to ignore is the reality of getting, living with and dying from metastatic breast cancer.

This morning I discovered that the campaign was essentially stolen by Kohl’s Department Stores to “fundraise” for Susan G. Komen and I am truly outraged! (Find the Kohl’s Cares campaign here.) First and foremost, it is disgusting that Kohl’s would impinge on a small non-profit organization’s pre-existing campaign in such a blatant and unethical manner, and do so to sell more products (like their “pink elephant” necklace) and direct “charitable” dollars to another, behemoth of an organization.

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#BCNext

We are constantly confronted by “breast cancer marketing,” the barrage of pink, from funding free mammograms and research, to supporting individuals with cancer, some of whom can’t even afford child care and transportation to treatment. We range from those with strong family histories, whether BRCA positive or not, to those enduring treatment, to long-time survivors with metastatic breast cancer, to those we have loved and lost. We are each the face of breast cancer.

In America, and I presume elsewhere, there is a great divide between those of us on the ground, living with and dying from cancer – and the other side of breast cancer, those who make funding decisions and allocations of both donated and allocated dollars, private, public and NGO.

If you could have their ear for a moment, if you could tell them what YOU think, what YOU see, what YOUR breast cancer priority is? What if your voice, combined with others like you, like me, could help influence our future?

Comment below or tweet to #BCNext to join the dialogue and spread the word! Let your voice ring out!

A Good Year…

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From: shiratdevorah.blogspot.com

I recently stopped into a class being taught by one of the Rabbis at work. It was a primer about the Jewish High Holy Days – Rosh Hashanah (New Year) and Yom Kippur (Day of Atonement). I walked in as the Rabbi was talking about how we greet one another on Rosh Hashanah, the Jewish New Year. In Hebrew we say “Shanah tovah u’metukah,” which interestingly doesn’t translate to Happy New Year.

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Beating a Dead Horse

For most of us the days of being told how to live our cancer journey fell away when our treatments were over. Gone are the frustrating moments when well-meaning friends and strangers at Starbucks offer remedies, alternative therapies, and all manner of unsolicited advice.

But when you have mets, those opportunities keep on giving, until – well, until the treatment ends, and we all know when that is. Never.

So you can imagine my frustration by the wave of Good Samaritans, breast cancer survivors all, who seem to think that because they once had early stage breast cancer they are in a position to advise me about mine.

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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

NaBloPoMo 2: A New Low in Pink

I know, it’s supposed to be over. But anyone living with, or loving someone with, breast cancer knows it’s never over. Pink-tober may be more offensive than the other 11 months of the year, but breast cancer is always around, whether it’s front and center, or lurking in the dark.

November is always a relief for me. I am happy to hand the pink spotlight over to the Movember crowd and just crawl into a hole for a while. But on the VERY last day of October, THIS was brought to my attention. (You have to see it to believe it!) Pink Lemonade Spot

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