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.
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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 leadership, trademark feuds, corporate partnerships and branding activities, pinkwashing, limited 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.
A 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.
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
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!!
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.
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.