Why I Am Still Anti-Komen

 

In early 2014, I wrote a blog post about why I was against breast cancer juggernaut Susan G. Komen Foundation.  It was shared, pinned, tweeted, discussed.  While the blog post was shared and liked by many, I don’t know the extent of the reputation hit I may have inflicted upon Nancy & Co.  I truly hope I inspired many to donate their money to much more honorable charities.

Well, now I am here to report on where Get Up Swinging and Susan G. Komen still stand.  To the surprise of no one, I am very much still anti-Komen, and I do not see that changing any time soon (please see below for a list of organizations doing amazing work).

I do not plan to re-hash all the same reasons I have already cited.  That’s the beauty of Nancy & Co: they keep giving us new and improved reasons to despise them and what they are doing to stand in the way of real change.  Today would have been my mother’s 69th birthday.  She died at the age of 40 from metastatic breast cancer.

Nancy, Nancy, Nancy

In a November 5, 2015 letter to the New York Times, my favorite former CEO was not happy about a very well-reasoned article, “A Growing Disenchantment With October ‘Pinkification,’”also published in the New York Times, which had valid points of views from those not wearing Pink Ribbon glasses.  Did Nancy listen to her critics and go, “Man, we’ve really divided the community for which we are trying to help”  Did she do any self-reflection and think, “I need to turn my focus back on the promise I made Susie.”

Of course not. Nancy didn’t address any of these real pressing issues currently happening in the breast cancer community.    Instead, all she did was regurgitate Komen’s history and ends her op-ed with the tone-deaf statement: “Pink Ribbons matter!”

The Pink Ribbon has enabled Komen to stage Races for the Cure with more than 1.5 million participants, partnerships in more than 150 countries and the engagement of more than 100,000 volunteers.

Oh boy, Nancy.  This is another example of why I think you are an evil woman.  You don’t get it, and you don’t want to get it.   What about those who are on their fifth line of treatment or waiting to get into a clinical trial in hopes for another six months with their families?  All you care about is your money-making Pink ribbon empire and your meaningless ribbon, aka the symbol of your life’s wealth.

There was one point in the article, and it’s an excellent point and one that you would think would make The Breast Cancer Charity go, “Holy shit, we seriously have to fix this!”

For all the awareness, they note, breast cancer incidence has been nearly flat and there still is no cure for women whose cancer has spread beyond the breast to other organs, like the liver or bones.

So, congratulations on patting yourself for your ability to rally others around a cause that has affected so many people.  But what about the 40,000 dying every year, a mortality rate that hasn’t changed in two decades?

No, Nancy.  Pink ribbons do not matter.  The lives of the 40,000+ dying of metastatic breast cancer each year in the U.S. matter.  Their partners, their children – the lives of all who have been diagnosed and will be diagnosed – they matter.  They should be the priority  and Nancy & Co. act as if these valid complaints are mere annoyances, like we are a bunch of Internet loud mouths.   The average lifespan of someone diagnosed with stage 4 is 33 months, and a pink ribbon isn’t going to change that.   We need change.  Now.

2015 marks the first time Komen lets you make a donation to metastatic breast cancer research

This past October marked the first time Komen allowed its donors to allocate where they want their money to go, and research toward metastatic breast cancer was one of the options.  It’s 2015, and this is the first time they have done this.  Why has it taken so long?  Could it be that the Komen push-back from all of us Internet loud mouths made some Komen folks realize that their priorities are jacked up?

However, this option only came about mid-October, and it was initially advertised as an option only available until the end of October!  What the deuce?  Did I miss the memo that metastatic breast cancer goes away when the calendar reaches November 1?

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I guess they listened to others also going, “Um, what?  This is only an option until October 31?” and changed their minds.  If you make a donation to Komen, you can still choose your donation to go toward metastatic breast cancer research.

Of course, though, this is still Komen, and they will always find a way to take your money, as pointed out by Bravery, Grace and Badassery.

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Does Komen really need that much financial help for its administrative costs that it still insists on taking funds for metastatic breast cancer research?  Get the hell out with this nonsense.

This organization has been claiming to be in this “for the cure” for the previous three decades.  Shouldn’t research for metastatic breast cancer be the primary focus so many, many years ago?  The only type of breast cancer that kills is metastatic breast cancer.

Komen likes misleading statistics

During Pinktober, the Susan G. Komen Foundation posted a pastel, feminine looking graphic with words and numbers together, which would lead you to believe that we are WINNING this fight on breast cancer:

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Ugh.   Ugh.  Ugh some more.

The five-year statistic is bull, it’s just plain bull.  It’s a misleading statement for a national organization to make, and all it does is make the general public LESS aware about breast cancer.  I’m sure all the Komen supporters saw that graphic on Facebook and said, “Yes, we are winning!  Well done, everyone.  Well done.”

Folks, if you’re reading this, please know that you can still have a breast cancer recurrence after five years.  The cancer doesn’t just peace out once it’s been five years since your initial diagnosis.  We have been led to believe that five years is this magical number and you showed cancer who is boss.  Realistically, though, you can recur 5, 10 or even 15 years after your initial diagnosis, so you can still die from breast cancer but be counted in this bogus statistic.  Theoretically, someone can have an early stage diagnosis in 2012 and have a metastatic recurrence in late 2015.  If they are still alive in 2017, then they are counted in that statistic, even if they die on January 1, 2018.     Do we tell them as they are dying, “Way to go, Jane, you made it past five years since your initial diagnosis.  You are a winner.”

Komen, for the love of Pete, quit sending misleading statements out to the general public that we are winning when the mortality rate hasn’t changed in the previous two decades.

Check out my friend, AnneMarie, crunching some numbers.

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I couldn’t agree with this any more.

Frankly, I’m tired of breast cancer being portrayed as the feel good cancer and being held up as a shining example for early detection which works sometimes or even most times but not all the time and that part of the messaging is conveniently left of of every discussion about early detection.  It’s buzzkill.  It detracts from the message that mammograms are unilaterally helping save lives.  Mammograms are detecting cancer earlier and earlier thanks to constant improvements being made in imaging devices but early detection is just that.  Early Detection.  And early detection is not a guarantee.

Komen and its representatives treat metastatic breast cancer patients like a nuisance

Beth Caldwell, who writes over at the Cult of Perfect Motherhood, recently attended the San Antonio Breast Cancer symposium.  She wrote about her encounter with a member of Komen’s Scientific Advisory Board:

This week, Kelly Shanahan and I had a conversation with Powell Brown, a member of the scientific advisory board for Komen. We explained to him that the metastatic community is largely dissatisfied with the small percentage of funding that Komen spends on research, since research is the only thing that will save our lives. I told him that they need to change their split between the national and the locals so that more money is available for research. His response was that he doesn’t believe Komen will change that ratio, and that Komen would not begin funding more research until the metastatic community gets behind Komen. He said that if we want Komen to spend more on research, we should participate in their fundraising efforts. He said that more fundraising would mean more money available for research. I told him there was no way that our community could get behind an organization that chooses to spend its money on things other than saving our lives, especially given that there are other organizations that spend a much larger proportion of their funding on research, including BCRF, which now outstrips Komen in dollars spent annually on research. His response was that if that’s how we feel, we should just support BCRF instead. And he walked away.

This is what a national leader for Komen feels about the metastatic patient. We are disposable because we don’t fundraise for them. Do not let them fool you into believing they care about us. Our lives don’t matter to them. And that’s why Komen is irrelevant to us. We must and will save our own lives.

Holley Kitchen, whose direct and moving video went viral, also had an encounter with a Susan. G. Komen foundation representative:

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Susan G. Komen Foundation has proven time and time again that it cares about money and donation$, and the lives of those with metastatic breast cancer are secondary.  Metastatic breast cancer is what killed Susan G. Komen, a real woman who died way too young.  Yet when those with stage 4 have stood up to the organization and its representatives, they are told time and time again that maybe Komen will care if they begin raising money for them.

So what’s the point of my anti-Komen diatribes?

Finally, just because I think Komen is an awful organization that has gone way off tracks, it does NOT mean I don’t want you to stop donating toward breast cancer research and programs.  There are so many wonderful organizations that have a mission statement, and (gasp) they are sticking to it.

Why do I keep hating on Nancy & Co.?  Welp, I want to highlight organizations that are awesome and making a big roar out there.  Please consider throwing your support behind these organizations.

  • Metavivor – 100 percent of your donations goes toward researching metastatic breast cancer, and they raise money by selling merchandise.
  • The IBC Network – Did you know that breast cancer can occur without presenting as a lump? Inflammatory Breast Cancer is mostly detected when the cancer is late stage or tragically, stage 4.  It’s an aggressive cancer, and it’s definitely not one that’s ever discussed during our annual Pinktober.  Terry Arnold over at IBC Network is a tireless advocate.
  • Met Up – This is an activist group, which was co-founded by women who have metastatic breast cancer. Read their goals, get involved.  Help their voices be heard.  You cannot call yourself a true breast cancer advocate if you only want to help the “survivors.”

We have so much work that needs to be done.  Recently, the New York Times reported on October 29, 2015 that the incidence rate between white women and African-American women are now equal for the first time.  Previously, women of color were less likely to be diagnosed with breast cancer, but more likely to die from the disease.  Now that the incidence rate is equal, well, does that seem like good news for women of color?  Not in the slightest.

Over all, a black woman given a breast cancer diagnosis is 42 percent more likely to die from the disease than a white woman with breast cancer. An analysis of breast cancer mortality trends in 41 of the largest cities in the United States, published last year in Cancer Epidemiology, found that in some cities the risk is even greater. In Los Angeles, a black woman with breast cancer is about 70 percent more likely to die from the disease than a white woman is. In Memphis, black women face more than double the risk. Black women also are less likely than white women are to be given a diagnosis of early stage disease, and more likely to be given a diagnosis with later stage, and less treatable, tumors, according to the report.

Don’t give up on the cause, even though Nancy & Co. have lost their way.

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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.)

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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.

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

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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”.

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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?

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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.