Strangled By Their Own Pink Ribbon

Jun 07, 2013 | Updated Aug 07, 2013

After I recently published my memoir Breast Left Unsaid chronicling my first battle with breast cancer, my publicist suggested that I become active on Twitter. In doing so, I was immediately and quite happily introduced to an enormous, global breast cancer fighter/survivor/advocate community that welcomed me and my bald head with open hashtags and great commentary.

At the same time, I was involved in a local Komen Connecticut Affiliate event as a spokesperson; building a team and fundraising for a Race for the Cure. As I tweeted about the event, I was also quickly introduced to a tsunami of hatred and resentment toward The Susan G. Komen Foundation. I had my own issues with them following the Planned Parenthood debacle, but for personal reasons was not yet willing to abandon Komen CT, our local affiliate doing good work in my home state, including a research grant supporting one of my oncologists. While I was not at all surprised by the negative sentiments, the volume and intensity was astounding. I'm talking lots and lots of exclamation points and caps. BIG. KOMEN. HATE.

At first, I was unwilling to buy in to all the anger. I have Stage 4 breast cancer now, and my mother is a survivor. My family's team, The Sole Sisters, has participated in Komen's Boston 3Day every year since my first diagnosis in 2006. We've raised enormous sums of money but it's the sense of community and emotional solidarity we've shared during those events that remains so positive and sustaining. I met my husband on a training walk; there's a whole section about the impact of this event in my book. It means something to us. I'm not talking about Komen as an organization. I'm talking about all the selfless human beings, mostly women, who morph into one big team of love and support for a few days every year; people who understand the horror of this disease on a personal, visceral level. We always understood and accepted that the goal was to unconditionally hold each other up while we raised money for a cure. I kept hoping that by some miracle, new leadership would swoop in, clean house and re-brand, so Komen could become a new and better force to be reckoned with in this fight. I even went so far as to tweet Peggy Orenstein, jokingly asking her take up the cause of trying to rescue Komen from their bad leadership. I believe her response was, "HA!"

I quickly discovered a very hard line between people who considered themselves serious advocates in the fight against breast cancer and those who are still foolishly drinking the Komen Kool-Aid. You cannot be both. Here are the key points outlining why I believe that line exists:

1.Last February, Komen's politically motivated decision to deny funding to Planned Parenthood for breast screenings was an unmitigated disaster. Even though CEO/Founder Nancy Brinker tried to dial back that message several days later through her public relations machine, during an ill-fated interview with Andrea Mitchell (a breast cancer survivor), Brinker came off as shrill, unapologetic, defensive and very guilty. She poisoned her charitable organization with an obvious right-wing political agenda having no connection whatsoever to the mission. No amount of damage control short of a full public apology, firing conservative zealots like Karen Handel from her leadership team, and resigning from Komen herself, was going to fix it. None of this happened.

2.Once Brinker was under a white-hot spotlight, so too was her gigantic salary and list of executive perks. To the loyal, individual fundraiser who begged friends and family for donations every year, even in a miserable economy, learning that Komen's CEO was taking home $685K was insulting beyond measure. (It's worth noting that the 3Day event requires a minimum of $2,300.00 in fundraising per person, in addition to hefty registration fees, or you are not allowed to participate. Insult: meet injury.) Supporters exited in droves.

3.Komen was already struggling with a transparency problem at the time. As the anti-pink wave washed on their shores again, they came under fire for over-spending on administrative and executive costs, while all but ignoring the neediest in the breast cancer world: the metastatic or Stage 4 patients (i.e., the people who are dying). Upon further scrutiny, a mere 15 percent of Komen's war chest was going toward research! Fifteen percent. The metastatic community was livid, demanding that more monies go toward research and front-burner visibility for those with advanced disease. Critics believed that by focusing more heavily on "early detection" and "awareness programs" Komen gained stronger statistical wins, which in turn helped boost their brand and fill coffers, but did little to further their stated mission of finding a cure. It also helped keep their marketing images pink, healthful and winning; as opposed to sick, pale and dying.

4.If that weren't enough, back in 2010, Komen earned a reputation as a corporate bully. They trademarked "For the Cure" and "For a Cure" for use in advertising, and then legally went after charities no matter how small, to change their names, slogans and in a few cases, their marketing colors or risk a costly day in court with The Big Girls. The mere fact that their legal counsel was spending time and money chasing down and intimidating other charities who could ill-afford to fight them, was simply unforgivable.

5.Finally, the good work that Komen did by bringing global awareness to this god-awful disease was nothing short of awe-inspiring. The scope and reach of the message to women about breast cancer was ambitious, hugely successful and Komen grew to have a rightful position of prominence and influence in the conversation on women's health. Then somewhere along the line, the concept of "awareness" took on a life of its own until we began choking on pink everything and eventually came to understand our "pink ribbon Komen purchases" were really just corporate co-profiteering off the backs of sick people and the people who loved them. I cite in my book my utter discomfort at seeing the Komen swirl on everything from "my home heating oil truck to a bag of romaine lettuce;" the charitable equivalent of jumping the shark.

Several months ago, Komen sent out a very detailed survey to its "largest supporters" to try to understand how they could rescue their brand. I unloaded an hour's worth of very tough feedback but screamed out loud when one of the questions wanted to know how often I attended religious services. That intrusive survey was obviously the result of Ms Brinker and Company trying to uncoil very uncomfortable pink ribbons from tightening around their necks. In the end, politics, greed, and power-hungry leadership destroyed the mission and took with it our precious cash, hopeful memories and valuable trust.

The topic came to a head for me again this week when Komen cancelled half of its 3Day events across the country. Honestly, I don't care what their talking points say about why they had to do it. It's clear to me now that a large enough percentage of their supporters finally just gave up on them; don't trust them; went elsewhere with their money and sneakers and pink t-shirts. But their inability to turn the ship around feels more like a personal betrayal than a failure of vision to those of us who invested so much time and money and heart. I guess that's where the anger comes in.

With all due respect and apologies to my friends at Komen CT, to my family and to countless, generous supporters over the years, I have no energy or time for Big Komen Hate, but I have the good sense to move on and throw my weight and voice behind organizations and people who still stand a chance of being a force for good in this fight. I hope you'll join me.

The late Susan G. Komen and all of us who will die from this disease, deserved better.