Breast Cancer Awareness Patient Empowerment

METAvivor Won’t Go Quietly Into the Night

An Introduction to METAvivor

METAvivors are different from traditional cancer survivors (http://www.metavivor.org). This is a community of people living with stage IV cancer, and advocating for the research that may, one day, save their lives or the lives of others like them. The “meta” in METAvivor is a reference to Metastatic Breast Cancer (MBC) – or stage IV breast cancer. When breast cancer has spread to non-adjacent parts of the body (brain, spine, lungs) it is considered to be metastatic. The cancer has metastasized. This is the advanced breast cancer that kills; and it kills as many as 40,000 people each year. It is important to note that there has been no decline in the number of annual deaths due to MBC over the last two decades. None. Yet, of the billions raised annually for breast cancer research, only 2% goes to MBC – even though 30% of  breast cancer patients progress to stage IV.

METAvivor is an organization and community that has developed to raise awareness of Metastatic Breast Cancer and to provide researchers the grants they need to transform this from a terminal disease to a chronic disease. Below is a screenshot of the header image from the METAvivor Facebook page. Note the prominence of their Elephant in the Pink Room Campaign. I’ll talk more about that in a minute. Please keep reading.

Screen Shot 2014-03-03 at 5.37.54 PM

Here’s a video created by METAvivor to explain their cause and ask for our support:

There is friction between the “pink” organizations and the METAvivor Community. In the past I’ve written about some of the challenges the pink movement poses for those with stage IV breast cancer (“Think before you Pink”). One problem is that most of the funds raised through Pink campaigns (those that are legitimate) do not go to support MBC research. In many ways, the Pink Ribbon has become a divisive symbol within the breast cancer community – helping create a fracture.

Now The Rant

(I rarely use my blog as a bully pulpit, reserving that for special occasions. This is one such occasion. By the way, I can’t help but smile knowing that my mother would love the thought of me using of a Teddy Roosevelt related term – bully pulpit.) One of the most recent examples of the friction within the breast cancer world came when Kohl’s co-opted METAvivor’s “Elephant in the Pink Room” Campaign. The Kohl’s version is the “Pink Elephant in the Room.” Beginning in 2012, METAvivor used the Elephant in the Pink Room as a symbol of MBC – “the dark side of breast cancer that no one wants to acknowledge or talk about.” (Source: METAvivor letter to Kohl’s, February 24, 2014) Now, as you can see below, Kohl’s and Susan G. Komen have co-opted the Elephant campaign and are using it in their own breast cancer awareness campaign. The problem? The problem is that, as I pointed out at the beginning of this post, MBC is different and for once had its own strong campaign and messaging. Now all of that is being watered down by a corporate giant and the breast cancer awareness establishment.

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Here’s the letter that METAvivor’s president recently sent to Kohl’s, asking that they abandon the campaign and stop infringing on METAvivor’s intellectual property:

February 24, 2014

Kevin Mansell, President and CEO
Kohl’s Department Stores
N56 W17000 Ridgewood Drive
Menomonee Falls, WI 53051

Dear Mr. Mansell,

Your current Pink Elephant in the Room campaign is a clear infringement of METAvivor’s Elephant in the Pink Room Campaign (www.MBCaware.org) and has done considerable harm to the metastatic breast cancer community and to METAvivor.

The Elephant in the Pink Room is not merely a clever slogan, it represents the core of our work and what we stand for. In our campaign, which originated in 2012, the pink room represents the primary breast cancer community which has more funding, recognition and attention than any other disease. Primary breast cancer is hardly a pink elephant – women cannot escape that breast cancer conversation. The real elephant is metastatic breast cancer, the dark side of breast cancer that no one wants to acknowledge or talk about. As our Elephant in the Pink Room campaign states: “In the ‘pink room’ of the breast cancer conversation there’s an elephant being ignored – we the 30% of patients with breast cancer who metastasize”.

Metastatic breast cancer is stage IV breast cancer, a terminal illness. The US metastatic breast cancer community grows by 73,000 to 86,000 each year, and suffers the loss of more than 40,000 women and men annually. It is the metastatic community that is underserved. It is only people with metastatic disease that die from breast cancer.

The Kohl’s Pink Elephant in the Room Campaign, using much of the same verbiage as our Elephant in the Pink Room, reverses the critical conversation begun by METAvivor in 2012, and undermines the hard-won progress that we have made in raising awareness of metastatic breast cancer.

We were told by a member of your staff to expect a phone call from you on February 21 to discuss this issue. That phone call has still not come. We trust you will make good on the promise to talk to us by contacting METAvivor no later than 5 PM CST on Tuesday, February 25, 2014. If you truly care about breast cancer you will make this right.

Regards,

Kelly Lange, President
METAvivor Research and Support, Inc.

cc: Judy Salerno, Jen Johnson, Katie Holmes

This is an emotional charged issue – and there are many shades of grey. Kohl’s does a lot of good through its corporate giving. In this case, they made an error at the expense of a small community of people who have worked very hard to put metastatic breast cancer on the agenda. Now they have once again been marginalized and undermined – perhaps unwittingly.

For more information about METAvivor and its negotiations with Kohl’s, please visit http://www.metavivor.org. For another perspective, read read Gayle Sulik’s blog post – The Pink White Elephant. Gayle A. Sulik, PhD is a medical sociologist and author of the book, Pink Ribbon Blues – a revealing history of breast cancer advocacy. Also check out Kathi Kolb’s blog post, Komen & Kohl’s Klueless Kampaign,

4 comments on “METAvivor Won’t Go Quietly Into the Night

  1. Good post! All of us who’ve had or have been touched by breast cancer need to support the work of metavivor. Thanks for raising the issue.

  2. Hi Dan- a well written piece that helps to point out some of the challenges breast cancer patients and their advocacy groups face- in particular, challenges that many in the general public have no idea are happening. This post is hardly made out to be a bully pulpit-esque endeavor!

  3. Reblogged this on Ann Becker-Schutte, Ph.D. and commented:
    This is an important issue in healthcare education and advocacy–talking about more difficult diagnoses.

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