Why I am anti-Komen

Recently, a friend of mine sent me a message on Facebook, asking me why I hated Komen so much.  I sent her a five-point, abridged version with my reasons, but I wanted to really write a well thought-out reason as to why I think Komen is a horrible organization.

Komen is allergic to reality

Really?  Oh really?  Breast cancer is the pink elephant in the room, and let’s not ignore it?  Since when is breast cancer ever ignored?  It’s not the pink elephant in the room.  It’s the pink elephant on a rampage, mowing down innocents in the street.  We have an entire month devoted to so-called breast cancer awareness.  Every time I went into a retail store  in the months of September and October, I was assaulted by crap with pink ribbons.

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At least I can disinfect my hands after all this pink ribbon garbage.

Breast cancer isn’t being ignored.   You know what’s being ignored and the real elephant in the pink room (see below for more on this reference): metastatic breast cancer, aka Stage 4 breast cancer, which leads me to….

Komen has ignored those living with metastatic breast cancer disease.

According to Peggy Orenstein’s April 25, 2013 article in The New York Times called “Our Feel Good War on Breast Cancer,” she wrote:

Last October, for the first time, Komen featured a woman with Stage 4 disease in its awareness-month ads, but the wording carefully emphasized the positive: “Although, today, she has tumors in her bones, her liver and her lungs, Bridget still has hope.” (Bridget died earlier this month.)

komenad1

Komen has been around for decades, and it was only in 2012 that someone living with metastatic breast cancer was in any of its advertisements.   I am very sorry that Bridget died at such a young age, and she was definitely entitled to her hope and mindset.  But I hate that even when someone with Stage 4 is in a campaign, the wording is still positive and upbeat because heaven forbid, you get angry or upset at your diagnosis.   Angry women and men with metastatic breast cancer need not apply.

An October 11, 2012 Today.com item actually interviewed those with metastatic breast cancer about “Pinktober.”   (Side note: glad some members of the media are actually giving voice to those living with metastatic breast cancer.)

For Stage IV patient Kimala Clark, 47, of Fort Wayne, Ind., it feels like a betrayal to walk into a grocery store and be “bombarded with pink.”

“I can’t celebrate because I’m not a survivor,” said Clark, who was diagnosed in 2010 with an aggressive Stage III cancer that quickly advanced. “There’s not a cure.”

Isn’t that heartbreaking?  Later in the article, it mentions how during the entire month of October, only one day is dedicated to metastatic breast cancer:

In addition to questionable product endorsements, late-stage patients protest what they believe are unfairly limited funds for metastatic breast cancer research and a cursory focus on the end stages of the disease.

In all of October, for instance, only Oct. 13 — Metastatic Breast Cancer Awareness Day — focuses on late-stage disease, Clark says.

“I really would have liked to see that be more than one day. I think it’s sad that there’s 31 days in October and we have one day,” she says.

Those living with and dying of metastatic breast cancer should be at the absolute forefront of the breast cancer discussion.  No ifs, ands or buts.   That’s it.  Yeah, I get those who want to celebrate their survivorship.  Go right ahead.    While you’re celebrating, remember and response those who were diagnosed Stage 4.  Your celebrations should never quiet those who are Stage 4.

One of the most gifted bloggers I have come across is Ann, who writes “Breast Cancer…. but doctor I hate pink?”  I think everyone should be reading and following Ann.  She wrote  a gut-punching, to-the-point blog called “Pinktober from a Metastatic Point of View”:

Metastatic women? Almost nothing. I believe there are fewer than ten support groups for advanced cancer listed in the US. Despite our differing needs, we are lumped in with all breast cancer groups, and worse, we have, in droves, been turned away from early stage groups, pulled aside and whispered to by coordinators, saying “you will frighten the early stage women.” There are very few books for metastatic women as compared to the hundreds for early stage. Even online support groups end up with women fighting about whether early stage women should be allowed to post in the Stage IV sections. Many argue that they should be allowed there because they could have metastatic cancer any time, as if that means they understood what it is like now. There seems to be little available for our emotional needs.

We don’t fit in with our “pink sisters.” Our concerns are very different, yet we are expected to be just like them, after all, it’s breast cancer. Alone, we are left to deal with real issues of life and death.

Who has created this environment where those with metastatic breast cancer feel marginalized and told to go away?  Susan G.-freaking-Komen.

FuckyouKomen

Let me go back to the Pink Elephant now.  Here’s the pink elephant ad again.

2014-Kohls-Pink-Elephant

Hey, guess what, Komen’s corporate sponsor here – Kohl’s – they co-opted the campaign from Metavivor, a small charity which dedicates 100 percent of its money received to funding research.  From Metavivor’s blog:

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”.

2014-Kohls-Pink-Elephant

This graphic was made by Christina, whose sister Vanessa died of metastatic breast cancer in February 2014 at the age of 32.

If you’re on Twitter, please go and occupy Kohl’s and Komen’s hash tag #talkpink.

Also, isn’t it telling that Komen and its partners can use the campaign and messages from other charities, but no no no, don’t use “for the cure”?

Komen sues smaller charities who use “for the cure.”

A June 1, 2011 Star Tribune article reported that Komen sent a cease and desist letter to a small non-profit which raised $30,000 to fight breast cancer.

Sue Prom helped organize the “Mush for a Cure” sled-dog race to raise money to fight breast cancer five years ago, a fundraiser that was humming along nicely until it received a letter from an attorney for the organization Susan G. Komen for the Cure.

Komen, best known for its pink ribbons, Mother’s Day runs and other mega-fundraisers for breast cancer research, asked Prom to stop using the phrase “for a cure” and to halt its request for a Mush for a Cure trademark.

“It was like, ‘You’ve got to be kidding,'” said Prom, whose all-volunteer fundraiser outside Grand Marais, Minn., raised about $30,000 last year.

Do you think individuals who donated to Susan G. Komen foundation knew their money would be used to sue other charities who want to raise money like Prom was doing?  Here’s the kicker?  Once national news shone a spotlight on Komen’s bullshit move, they backed off.

Komen dropped its objection to the dog-sledding fundraiser earlier this year, Prom said, shortly after NBC News highlighted the plight of Mush for a Cure and a New York group called Kites for a Cure. In April, a certificate arrived in her mailbox giving her the trademark for “Mush for a Cure.”

I doubt Komen changed its mind out of the goodness of its heart.  Oh no.  Bad publicity would affect its donations and bottom dollar, and of course that cannot happen.  An August 5, 2010 article in The Wall Street Journal stated that Komen went after a small charity dedicated to raise money to fight lung cancer.

Last year, [Mary Ann] Tighe’s Uniting Against Lung Cancer got a letter from Komen requesting it change the name of the charity’s “Kites for a Cure” fund-raiser, a beach event featuring hand-decorated kites, to “Kites for a Cause,” or another name. Komen later warned her against any use of pink in conjunction with “cure.”

Ms. Tighe dug in her heels. She refused to change her group’s name or declare pink off limits even though, she says, her group hadn’t used the color. “We don’t want to be the color police,” says Ms. Tighe, who didn’t feel she was poaching Komen’s slogan.

But as the legal battle ensued, her group agreed to a truce where it would limit the use of the event name to lung-cancer activities, and it promised to stay away from the pink ribbons made popular by Komen. [Jonathan] Blum  [Komen’s legal counsel] characterized the negotiations as “cordial and productive.”

Seriously.

Komen’s CEO and founder, Nancy Brinker, has made a lot of money

According to Komen’s website:

Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever.

I wonder if that promise included Ms. Brinker getting paid.  I mean, girlfriend got seriously paid.   Dolla dolla bill, y’all.  A May 3, 2013 Dallas News article announced her payday:

The nonprofit’s latest 990 IRS filing shows that Brinker, founder and CEO, made $684,717 in fiscal 2012, a 64 percent jump from her $417,000 salary from April 2010 to March 2011.

The filing says Brinker devoted 55 hours to the cause each week, giving her an hourly rate of $239.40, roughly twice the salary of Komen’s chief financial officer Mark Nadolny or former president Liz Thompson, who left the organization in as a result of the brouhaha.

News outlets compared her salary to others in a similar position.

Ken Berger, president and CEO of Charity Navigator, which evaluates and rates charities, called Brinker’s salary “extremely high.”

“This pay package is way outside the norm,” he said. “It’s about a quarter of a million dollars more than what we see for charities of this size. … This is more than the head of the Red Cross is making for an organization that is one-tenth the size of the Red Cross.”

The American Red Cross had revenue of about $3.4 billion, while Komen’s was about $340 million last year.  Red Cross CEO Gail McGovern makes $500,000, according to the most recent financial documents available for the charity.

Way to honor your sister there, Nance.

Lastly…

Komen has yet to embrace this thing called science.

Komen has  sold the myth that mammograms save lives and the world needs more mammograms and mammograms for everyone!  Get one soon or you’re going to die…. wait, what?

KomenAd

This is an actual ad from Komen, and you know what’s wrong with it?  First, the five -year survival statistic for breast cancer when caught early is not 98 percent.  That’s a five-year survival statistic for Stage 0 or DCIS (aka pre-breast cancer).  Technically, my breast cancer was caught early – Stage 1.  However, since my cancer was invasive, I still have about a 25 to 30 percent of developing metastatic breast cancer.   Catching breast cancer early is not a 100 percent guarantee one will never have to deal with metastatic breast cancer.   Unfortunately, 30 percent of those who had early stage breast cancer go on to develop metastatic breast cancer.

Rachel Cheetham Moro, the blogger behind Cancer Culture Chronicles and who died of metastatic breast cancer, had this to say about Komen and its campaign:

How dare Komen so FALSELY suggest that a screening mammogram is all it takes to avoid metastatic breast cancer? How dare Komen so CRUELLY suggest that “not getting screened for breast cancer in time” would be THE reason and the FAULT of the person with metastatic disease who misses out on all the experiences and joyous events of a long and healthy life that so many others take for granted? How dare you, Komen? How dare you?

Here is a great analysis, published on October 3, 2012, on the blog Pink Ribbon Blues and written by Christie Aschwanden:

Komen isn’t wrong to encourage women to consider mammography. But they’re dead wrong to imply that “the key to surviving breast cancer” is “you” and the difference between a 98% survival rate and a 23% one is vigilance on the part of the victim. This message flies in the face of basic cancer biology.

Between 2004 to 2009, Komen allocated 47 percent of it $1.54 billion toward education and screening. Much of its education messaging promotes the same false narrative as its ads, which means they are not only not furthering the search for a cure, they are harming the cause. By implying that the solution to breast cancer is screening, Komen distracts attention from the real problem, which is that way too many women (and men) are still dying of breast cancer, and screening is not saving them. We still can’t prevent breast cancer, because we don’t know what causes it.

To summarize, I’m not against Komen because of one thing or two things.  It’s more like a handful of things that have led me to know with all my heart and conviction that Susan G. Komen is the problem, not the solution.   I believe Komen began with good intentions but has morphed into this pink ribbon behemoth.   Women (and men) are dying from this disease, and we need to refocus (fuck awareness – WHO ISN’T AWARE OF BREAST CANCER?).   They deserve better, much much better.

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18 thoughts on “Why I am anti-Komen

  1. Great Post Lara! Speaking as a person with metastatic breast cancer, I can’t tell you how much it means to know you have my back! Thank you for all you do, say and write for the metastatic community!

    1. ❤ Barb.

      I will always have your back and anyone else with this disease. How did the breast cancer discourse go so wildly off track? *cough*komen*cough*

      Everyone who is Stage 4 deserves significantly more than you deserve. More emotional support, more RESEARCH, and more funding overall.

  2. Thank you for the very well written article, stating what so many of us feel.
    I have Inflammatory Breast Cancer, the one most women, or for that matter, most medical professionals know nothing about.
    It’s the most aggressive and the most deadly. And NOT FOUND in mammograms.

    1. Seriously, what has breast cancer awareness even done to move IBC forward? If you asked the general population, I imagine most wouldn’t even know about IBC. The common misconception is that lump = breast cancer. Not always the case.

  3. I don’t get why metastatic “survivors” don’t think they are included in breast cancer awareness month or consider themselves ” survivors.” I personally hate October and am a reformed 3 day walker, but I just don’t understand why those with metastatic disease aren’t supposed to have hope and take offense that they have a day set aside for them. First there are complaints about October in general, which I agree that it is over commercialized and a constant reminder of death ( in my experience), but why complain about the month and then complain not enough days are dedicated to metastatic disease. It makes no sense. But a survivor is technically anyone alive after diagnosis, metastatic or cured. Complaining that to much attention is dedicated to survivors just makes no sense. I personally think that success stories are good for helping moral during tough times. It’s good to know that people actually live after diagnosis, whether it’s living with metastatic disease or getting “cured.” And it’s good to see that after being mutilated by cancer, we can actually get pieced back together and, even with the constant worry of recurrence, swollen arms, infertility, fear of cancer from all the warning labels of anything we ever had to take for cancer, and physical limitations and pain, there is still hope for life.

    1. You think the point of my post was to complain “that to [sic] much attention is dedicated to survivors.” The whole point of this is why Komen is problematic, and the problem, not the solution. It’s like you focused on one aspect of it and didn’t even process anything else i wrote.

      And if you don’t understand why those living with mets don’t like Pinktober, why don’t you ask them?

    2. You have marginalized Lara’s entire post and distilled it into Stage IV envy of survivorship, anger over only one day of recognition, and implied that those of us with metastatic disease live under a cloud of constant hopelessness. The points that Lara’s raised are all significant and thus point to a much larger and very complicated discussion about Stage IV disease and how it does or does not fit within the contours established by Komen, the largest breast cancer organization and fund raiser out there.

      I was diagnosed with Stage IV breast cancer right out of the gate in July 2012. I never paid any attention to the whole Pinktober bullshit because I thought that’s exactly what it was: bullshit. Anyone who thinks the folks that run big organizations like Komen are philanthropists are entirely misinformed. I already had their number, so I was happy to ignore it all. But then came my diagnosis and as is my wont I got informed.

      You see, when you have Stage IV disease you wonder why there is only one day out of 31 that encourages a discussion about metastatic disease. Why one day and not part of a discussion of breast cancer writ large all year? Is isn’t that we want “a day” at all, we want unfettered discussion about metastatic disease. Why focus on “survivorship” and a misguided notion that survivors are cured? It’s not about an argument over semantics and who survives and doesn’t survive. The truth is, of course, you don’t survive breast cancer until you die of something else. But that wouldn’t make money either. I have metastatic breast cancer, my “hope” doesn’t come from women donned in pink who have “survived.”

      We want more focus on metastatic disease because more attention means more dollars for research. Right now only 2-3% of money raised by Komen and breast cancer orgs go to Stage IV research. The rest for early detection (which is not a cure), and self-exams (which is not a cure), and pink mixers, toe separators, kitchen aprons, and flip flops.

      Breast cancer is a disease that kills. It is not a feminized rite of passage.

    3. Patti, meet my friend, Lori, who has Stage 4 breast cancer. Here is her response to your comment. Please read and really let Lori’s words sink in before you ever think again that those with metastatic breast cancer has some sort of survivor envy.

  4. Here’s the problem with Komen: They say they are “fighting for a cure” or “racing for a cure” but the reality is metastatic breast cancer HAS NO CURE. The money they raise is to further commercialize breast cancer. Very little money raised from all these walks, Pink products and such go to research for metastatic breast cancer. Every year they count on more people to jump on the Pink bandwagon to in order to make more money. And just in case anyone forgets after October they co-opt another campaign completely dedicated to metastatic breast cancer to keep that retail wheel turning.

    It’s easy to focus just on breast cancer because it’s so easily treatable and Good for those that get thru treatment and are cancer free! Just don’t talk about those of us with stage 4 because we don’t get a happy ending. Our story ends with our death. That’s too depressing. Don’t talk about how our treatment never ends. Don’t talk about how every new ache and pain causes additional anxiety. Don’t talk about it because then you have to talk about how Komen basically ignores us.

    And if one more person tells me that mammograms save lives I will choke them. I had regular mammograms just like I was told and guess what??? It didn’t detect my breast cancer. More education needs to happen regarding other types of screening. MRI and ultrasounds should be required for those of us with dense tissue. Mammograms are simply not enough. This is something Komen should be educating women about.

    I was diagnosed in August 2013 with stage 4 breast cancer with mets to my spine and ribs and I do not support Susan G Komen.

  5. I definitely understand the desire to find hope where you can. We all need to have a reason to get out of bed in the morning. The over-celebration of triumphant survivorship mostly to sell the cause and the products that go with it are a huge part of the problem. I’ve written a lot about the culture and industry of breast cancer. Here are some of them on Psychology Today.
    http://www.psychologytoday.com/blog/pink-ribbon-blues

    I also see your point, Laura, about the many issues with Komen. The national office seems to have lost touch with reality on many occasions from the trademark feuds to the pinkwashing products to the decline in research allocations even when revenues were at their highest. Luckily, there are many other organizations out there working to make a difference and change the status quo. That’s what gives me hope. Dealing in reality, bringing more people to the table, and identifying what is not working well so it can be fixed. Thanks for adding your voice.
    — Gayle Sulik (aka @pinkribbonblues)

  6. dear Lara,

    thank you for producing such a comprehensive and well expressed body of work to shed light on what is sorely and egregiously ignored about MBC within the inane, ineffective, and all out greedy approach komen/brinker takes in it’s campaigns. for anyone to believe that men and women suffering the ravages, the fears, the pain, and the continuous barrage of emotional upheaval as they trudge from treatment to more treatment to extend their lives are sniveling about the number of “days” to “recognize” metastatic breast cancer is completely missing the message. what we want and need so desperately is a united dialogue that is steeped in truth, a realization that pink is a color, and that hiding and ignoring MBC behind the tired, rah-rah pink campaigns that spew specious “facts” about awareness and early detection is a much more effective way to raise money to keep komen coffers full for the next pink parade.

    komen, here’s an idea for you. if your really care at all about the 40,000 men and women who will die this year, let’s talk in a public forum comprised of the many MBC advocates, some of whom are slowly actively dying, and those who have been recently diagnosed, and those who are NED and cannot celebrate it because of the terror felt at the thought of losing it. fear is a terrible thing. maybe that’s why you cannot bring yourself to face the reality of MBC, maybe you want to shield others from that fear. but think,komen/nancy brinker, think, of the men and women, who despite participating in celebrating “survivorship” and have turned to you and your campaigns and events meant to bring out the “positive” of “beating” BC – think of how much more they will feel betrayed after all they have done, and still go on to be diagnosed with metastatic breast cancer. fear can only be defeated by truth. better to face the truth and go for power in numbers, united and determined that we can at least all be there for one another, that many fine minds gathered together in understanding, compassion, hope, and solidarity to fund research, to speak out, honor the truth, and find a way to a achieve common goals that will finally eliminate the divisiveness that has harmed and delayed what we are all longing for.

  7. Lara, this is a GREAT, clear, comprehensive, passionate piece! Thank you!

    I had thought to respond to Patti’s comment here, but it became longer than an average blog post, so rather than clutter your space, I put it on my own blog. If you’re interested, it can be found here: http://wp.me/p1ADsf-Di

  8. Author Lars Eighner wrote (in his book, “Travels with Lizbeth”):, “The purpose of welfare systems is to provide jobs for social workers and bureaucrats.” Seems to me that the main purpose of Komen is to provide jobs for the people who work there — and who work for all the associated ad agencies, consultants, etc. in the breast-cancer charity industry.

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