Enter the Komen Bandits -- Racing With A Message for Metastatic Breast Cancer

This weekend marks the 22nd annual Susan G. Komen Global Race for the Cure® 5K at the National Mall in Washington, DC. Nearly 40,000 people participated and the event raised more than $5 million. Reports of the race festivities are awash with celebrity, festivity, performance, and unbridled enthusiasm.

Susan G. Komen for the Cure’s founder, Ambassador Nancy G. Brinker, “charged up the crowd, noting that the sea of pink making their way up the National Mall was a bold statement by this community that we will not rest until our promise to end breast cancer forever is fulfilled.” She went on to say that, “If my sister Suzy were here today, she would take joy in the inspiration you provide. She’d take pride that in a politically divided city, there is unity on this issue. She’d take comfort in the fact that hopes are high, and that a cure is near.”

SGK social media was all a twitter with live feeds from the race revealing a mood that was triumphant, proud, and promising while solidifying the message that Komen is responsible for progress.

There were messages of undeniable support from good ladies everywhere.

___

It sounds fun. Solidaristic. Important. Meaningful. Sanctimonious. In some ways it is.

However, the public relations and excessive media hype surrounding such events disguise mounting concerns about Komen’s organizational leadershiptrademark feuds, corporate partnerships and branding activities, pinkwashinglimited successes, and unbalanced program allocations. A critical mass of concerned people, many of whom had supported Komen over the years, are now asking whether the ends justify the means.

Though there have been successes with very early breast cancer, there are an estimated 150-250 thousand people in the United States who are currently living with metastatic breast cancer (or, BC Mets). These patients never finish treatment, and the average survival after stage IV diagnosis is only 2 to 4 years. Metastatic breast cancer accounts for 98-100 percent of the nearly 41,000 women and men who die from breast cancer every year. Though these deaths provide fuel for continuing the war on the disease, beyond this there is little attention to metastatic disease. In a recent interview I did with Dian Corneliussen-James, founder of METAvivor Research and Support, Inc., she stated:

“The cancer/breast cancer organizations tug at the heartstrings of the public by starting their speeches with the tragic tale of someone they loved, who died. But when the collected funds are divided up, the BC Mets community is all but forgotten. Primary breast cancer, or prevention and early detection are the attention-getters and the funding recipients…While early detection has been successful in terms of diagnosing more people at stage 0 or 1, even stage zero patients can and do develop invasive breast cancers that metastasize.

Constant reminders of the promise that Komen founder Nancy Brinker made to her dying sister, Susan G. Komen, kick off almost every SGK event, story, and campaign. People like Suzy are memorialized, yes, but the overabundance of stories about triumphant survivorship and dreams for a future without breast cancer do not resonate with the realities of metastatic disease or the lack of research funding in the area of metastasis.

Komen bandit TankA woman known in some circles as the “Komen Bandit” decided to take her concerns to the streets — or more specifically, to the Komen races.

The Komen Bandit was diagnosed with Stage IV Inflammatory Breast Cancer (6cm+, mets, ER-/PR-, HER2-) in 2008. Her goal is to raise awareness about “how…vital it is [for people with BC Mets] to no longer be…written off [as] test subjects,” but instead to be the focus of research to find cures. She said on a discussion forum for Stage IV and metastatic breast cancer that she’s taking this action because, “we are the ones…dying at the same rate year after year.” Her statement echoes one made by journalist Clinton Leaf just a few years ago who reported (PDF) that the “vast majority of research grants and drugs are not aimed at combating what actually kills people.”

The Komen Bandit is not alone in trying to get the word out about the the lack of real support for those who are dying from breast cancer each year. Alongside the flood of pink t-shirts, another such Komen Bandit raced today wearing a tank top she made to draw attention to the needs of the BC Mets community: “Not surviving. Still Fighting. Fund stage IV research.”

Komen Bandits do not have the pink podium or the megaphone that Ambassador Nancy G. Brinker does, but they do have a message. And it needs to be heard.

Go, Komen Bandits! We’re with you.

 

For more commentary see Are We Really Racing for a Cure? by Nancy Stordahl. For an insightful discussion about how Komen should address the growing public criticisms see Cause Bandits? How Would Your Nonprofit Respond? by Jen Price.

 

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7 comments to Enter the Komen Bandits — Racing With A Message for BC Mets

  • Komen’s proud of people surviving breast cancer? That’s nice, but what about the 41,000 per year who don’t – almost equal o the number of participants in this race which seems sadly ironic. Are they proud of their efforts in stemming the mortality, or just proud about how much money they’ve raised? I’m most proud of people like CJ, like the Komen Bandit, like you Gayle and so many others, who are willing to stand up and say that Komen’s pink spectacle and largesse are just simply not good enough. It’s time Komen put their money, resources and efforts towards activities that could actually make a difference to the breast cancer mortality statistics, numbers that right now are nothing to be proud of.

  • Thank you for an excellent, enlightening post! These Komen bandits are amazing. What I don’t get is why our society doesn’t get it. What is it going to take for real research dollars to fund a real cure for mets? How many more people have to die? Women keep dying in a sea of nauseating pink.

  • I’m with Beth. I don’t understand what is so hard here. Research and cure obviously go together. It’s just that simple. The pink culture really has a firm grip, but we have to keep working hard to loosen it. Go Komen Bandit!

  • How come this is the first time I heard about the Komen Bandits! This news should be emblazoned across all the newspapers, front page, above the fold. All we get instead is that ubiquitous pink. Thanks for enlightening me.
    Jan

  • uvmer

    With its start in 1982, I am guessing if sister Suzy was here, she would really be wondering what the hell is taking so long?! Find the “cure” already…for all those who have breast cancer….all stages….by funding research. GO KOMEN BANDIT!!

  • allic3300

    This article states perfectly how I started feeling about Komen once they started their police-ing of people using the phrase *insert any word here* for the Cure. Well done. Count me in as a Komen bandit.

  • Kristi

    There is TOO MUCH MONEY in this horrid disease. I lost my sister to this disease in Feb of 2010. She told me at the time how disgusted she was with Komen, I was told at the time by my sister, 85% of proceeds go to ADVERTISING……. SERIOUSLY??? Like we need more advertising. My belief is, I think when this whole Komen Race For the Cure started, it’s intentions were great, but just like any major corporation, the almighty dollar is there GOD……. Komen is NO DIFFERENT. I stay away from everything Komen.

To speak her truth, she needed to give her words and identity away, to a trusted poet and friend @stevedavenport breastcancerconsortium.net/ov…

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

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