Susan G. Komen

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 69^th 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?

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:

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:

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.

Pinktober is coming

In matter of days, October will be upon us once again, and everywhere you look will be draped in pink ribbons and emblazoned with such words, like, “Brave!” “Survivor!” “Sisterhood!” “Strength!” When you turn on daytime morning television, the networks will be featuring early-stage survivors and once again, ignoring those living and dying from metastatic breast cancer. If you’re a fan of professional football, the NFL will be featuring bright, attention-grabbing pink gloves, shoes, and T-shirts, all for breast cancer awareness month (never mind the fact that October is domestic violence awareness month, and the NFL should seriously focus their attention on that problem). Also, the NFL donates “shockingly” little to breast cancer causes anyway.

Friends, if you are like me and recoil at the pink tchotchkes and offensive T-shirts with puns about breasts, then come sit next to me. We can plug our ears, close our eyes and sing happy songs to drown out all the noise because that’s what this is: noise.

However, if finding a corner to hide from the Pink Ribbon Biz Business until November isn’t feasible due to family, children, jobs, that sort of thing, then there are ways to survive with your sanity intact. Here are some ways you can fight back against Pink Ribbon Crap Spewing Machine, and most importantly, help those with breast cancer who need your support.

Research > awareness

By the hammer of Thor, the word awareness has lost all meaning. It really has. I would love to find that one person residing in the U.S. who isn’t aware of the existence of breast cancer and ask them where they have been for the past two or three decades. A cave? A cabin in the woods? The fact of the matter is that we are all aware. In fact, we are all so aware that the general public doesn’t know much about breast cancer except for its existence. With all the T-shirts, coffee mugs, bumper stickers and the thousands of other breast cancer-related products doesn’t teach anybody anything beyond the fact that breast cancer exists.

Did you know that approximately 40,000 die from metastatic breast cancer each year? My mom died from this disease in 1987 at the age of 40, so I have been aware of the fact that breast cancer is deadly since I was only 7 years old.

Did you know that men get breast cancer, too?

Did you know that breast cancer can present with a lump and if so, do you know the warning signs to look out for?

Did you know there are multiple subtypes of breast cancer, such as estrogen positive, Her2+ or triple negative breast cancer?

Did you know that a strong family history and/or genetic makes up small number of breast cancer diagnosis? (American Cancer Society estimates that number to be approximately 5 to 10 percent.)

If you have had a friend or family member go through or die from breast cancer and you want to help in a meaningful way, then support organizations who are researching breast cancer. Stand Up to Cancer, and the Dr. Susan Love Research Foundation are pretty awesome organizations. Personally, I support the organization Metavivor since 100 percent of their donations go toward research grants. I know I have made it very clear why I abhor the Susan G. Komen foundation, which leads me to my next point…..

Think before you pink

This is just a great general rule to live by in a world saturated with pink products. If you are thinking of purchasing a product that says that X amount of proceeds go to X charity, then do a little research before buying the product. Questions to ask: is this a charity I feel comfortable receiving my money, or would I be better off just making a donation myself and writing off a tax deduction? You can research non-profit organizations on Charity Navigator.

Susan G. Komen receives 2 out of 4 stars, and as of September 27, 2015, it has an overall score of 78.97. It scored 70.53 percent in overall financial and 96 percent in accountability and transparency. Judith Solerno, CEO, received $209,120 in compensation, and Nancy G. Brinker received $480,784 in compensation (more than twice her CEO’s salary?).

Susan Love Research Foundation receives 3 out of 4 stars, and as of the same date, it has an oval score of 85.07. The foundation scored 80.09 percent in overall financial and 93 percent in accountability and transparency. Susan Love, president of the organization, received $225,000 in compensation.

Another important question to ask, according to the Breast Cancer Action organization:

What is the company doing to ensure that its products are not contributing to the breast cancer epidemic?

Please see Breast Cancer Action’s website for examples of more than questionable campaigns created in the name of breast cancer awareness.

Breast cancer is not a game – it’s a serious, deadly disease.

Weeks ago, it was brought to my attention that a new breast cancer status awareness game began. I may have sprained an eyeball from rolling it so hard at the stupidity of it this year, something about leprechauns or speeding tickets. I can’t keep up, nor do I want to keep up with this. Breast cancer is NOT a game, or a reason to take off your bra for… some reason that still doesn’t make sense to me.

Whenever I have seen this “game,” I have this conversation play out in my mind:

Me: Friend, I saw that you posted a weird status about getting out of a traffic ticket with a boob, and I know what you’re doing. Stahp. Just stahp.

Friend: But… I’m raising awareness for breast cancer? Isn’t that something you want?

Me: You haven’t raised awareness for anything except that you fall for stupid games and feel compelled to pass it along to unsuspecting folks on your friends list. You are literally helping nobody by this status.

Friend: You’re an asshole, Lara.

Me: Why that may be true, it doesn’t take away from the fact that you are literally helping nobody by this. Nobody. You haven’t shared any facts, links to any good blogs, organizations or call to actions. Literally nobody has come out of this the wiser.

Friend: [Unfriends Lara]

… and scene.

We can do this, Get Up Swinging friends. We can get through this Pinktober, and we will live to tell the tale.

Breast cancer is NOT a game

I generally don’t participate in these BUT… Haha, you should not have liked or commented. Now you have to pick from one of these below and post it as your status. This is THE 2015 BREAST CANCER AWARENESS game. Don’t be a spoil sport, pick your poison from one of these and change your status, 1) Damn diarrhea 2) Just used my boobs to get out of a speeding ticket 3) How do you get rid of foot fungus 4) No toilet paper, goodbye socks. 5) I think I’m in love with someone, what should I do? 6) I’ve decided to stop wearing underwear 7) it’s confirmed, I’m going to be a Mommy/Daddy! 8)Just won $900 on a scratch card. 9) Its final, we’re moving to Mexico to be beach bums! Post with no explanations.

Oh dear goodness. Not this bullshit again. Why is this still a thing? Why hasn’t this “game” been killed in a fire? You know what I want to do whenever I see this form of slactivism in my social media news feeds.

Breast cancer is not a game. Repeat after me: it is not a game. It certainly is not a shitty game which tells you absolutely nothing about breast cancer. For real, what does that game above tell you about breast cancer? After reading that, did you learn anything about breast cancer that you didn’t know before? I mean, it’s telling you there’s awareness going on. What are you aware of now that you weren’t before? If you didn’t know that breast cancer existed before coming across the 2015 BREAST CANCER AWARENESS GAME, then please give me the address of the rock you were living under. Were you living in a land free of pink ribbons? (Take me there!)

Awareness should be the first step, not the only step. #BCCure, #BCKills, #dontignorestageIV, #MetsMonday

— Ann Silberman (@ButDocIHatePink) March 2, 2015

It's not about boobs. #BCCure, #BCKills, #dontignorestageIV, #MetsMonday

— Ann Silberman (@ButDocIHatePink) March 2, 2015

You know what I think whenever I see this pop up in any of my news feed: you could care less about breast cancer, and I need to unfriend you right the hell now. I’m not even kidding. If anyone who knows me and what I have gone through (i.e., lumpectomy, chemo, radiation and double mastectomy) can participate in such a game and not realize how demeaning and offensive this is to anyone going through breast cancer treatment. I never saw what I went through as some cutesy game, and I certainly don’t view my mother’s death from this disease as LOL.

Lisa Bonchek Adams, who has stage 4 breast cancer, wrote this spot-on piece entitled “Breast cancer is (still) not a Facebook game”:

The above instructions are not awareness. This is offensive. Breast cancer is not a joke, awareness does not come from sharing the color of your underwear or your marital status (the whole “tee-hee, wink-wink” attitude adds to my disgust). Even if it ended up on TV, that still would not be educating people about breast cancer they didn’t know before. All it does is show the world that lots of people are willing to post silly things as their status updates.

She also wrote:

Education underlies awareness. To even call something a game and honestly believe it’s doing anything to help any aspect of this disease is delusional.

While you’re playing games, (mostly) women are dying of metastatic breast cancer. We have been running and racing for a cure that has not happened. Where’s the cure? The below infographic is proof of how little most people know, despite all this awareness.

50 FREAKING PERCENT believe that breast cancer progresses because patients either did not take the “right” treatment or preventative treatments. Are you kidding me? That is unacceptable. Is this why we treat those living and dying of metastatic breast cancer as some dirty little secret nobody should talk about because most people think they brought it upon themselves? That is so far from the truth that it should be filed under fiction.

Did you know that 30 percent of those diagnosed with early stage breast cancer have a metastatic breast cancer, i.e., the breast cancer that kills? WAS THAT FACT RELAYED TO YOU WHILE YOU’RE PLAYING THE GAME?

Awareness does not save lives. It doesn’t. Despite recent media articles telling you that breast cancer rates have dropped, don’t believe the screaming headlines.

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

If you or anyone really want to help, tell these Facebook game players to sign this petition. “I ask that Komen commit at least 50% of total donations to medical research and innovation rather than to awareness and education. I request all other breast cancer non-profits do the same.” Donate to Metavivor. Do something meaningful.

Just don’t play these games. Please. Can you really play a game making light of the deaths of so many?

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

Thanks @Kohls 4 supporting @SusanGKomen! Breast cancer's the pink elephant in the room:let's not ignore it! #TalkPink http://t.co/8nUxy8jdCL

— KomenKnoxville (@KomenKnox) March 3, 2014

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.

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.)

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.

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

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”.

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?

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.

Race for the Agenda

(Originally posted on Get Up Swinging on February 2, 2012.)

I have spent the last two days really thinking about the decision of Komen to cut off funding to Planned Parenthood. It’s taken me that long to really think about what I want to say to the Komen foundation, and here it goes:

Shame on you. You have let me down, and you have forever lost me as a supporter for your organization.

I had been participating in Race for the Cure races since 2000 in honor of my mother. Several of those years, I walked in the Race by myself because it didn’t matter that I was alone. I was racing in memory of my mother. Mother’s Day used to be painful for me because my mom was gone. Race for the Cure helped me feel close to her on a day that used to bring me pain. I go to sleep in nights in Race for the Cure T-shirts. All those years, I believed that I was doing good and something that mattered. My mom was a social worker and worked for the United Way before she died. My mom cared about others and wanted to help. I don’t know much about the woman, but I know that.When I participated in last year’s Race for the Cure, I felt a sense of community and pride. I looked around and took in all the other pink shirts. I saw the various signs proclaiming SURVIVOR. I loved it. I felt that one word they say a lot to cancer patients: “Hope.” I felt it and believed it. I saw women who were decades-long survivor and it gave me faith that I’m not going to die in the near future.

Komen made a cowardly decision by using a lame excuse, “Oh well, we’re not going to fund organizations that are under investigation.” I think I would actually respect their decision more if they just outright said, “We no longer want to be associated with an organization that provides abortions. This is our stance.” Okay then. Fair enough. Don’t hide behind a lame excuse – own up to it. However, my first question: why partner up with Planned Parenthood in the first place? It’s not like they all of a sudden became a place for women to go to for abortion. If it wasn’t political when the partnership started, then why make it political now?

I’ve spent way too much time on Komen’s Facebook page and have engaged with some lovely trolls, who had horrible literacy skills and scientific know-how. In the last two days, I have learned the following:

1.) Abortions cause cancer

Apparently there’s a website called abortionbreastcancer.com which, shocker, tells folks that abortion causes breast cancer. Yeah, that website seems really unbiased. Was the domain “BullshitMumboJumbo.com” not available?

I’m going to go out on a limb and say that ACS’ website is devoted to helping fight cancer, not some political agenda.

The topic of abortion and breast cancer highlights many of the most challenging aspects of studies of people and how those studies do or do not translate into public health guidelines. The issue of abortion generates passionate viewpoints in many people. Breast cancer is the most common cancer, and it is the second leading cancer killer in women. Still, the public is not well-served by false alarms. At this time, the scientific evidence does not support the notion that abortion of any kind raises the risk of breast cancer or any other type of cancer.

2.) Birth control causes cancer

Let me refer you to the National Cancer Institute’s take on that.
3.) Women with no health insurance should just research harder for help if they are sick.

4.) By cutting ties with Planned Parenthood and taking away funding for screening, Komen now supports a pro-life agenda.

So by cutting off women’s access to cancer screenings and possibly delaying a cancer diagnosis…. that’s pro life? Whose life are we for here?

5) Poor women wanting free mammograms have this sense of entitlement.

Komen and Planned Parenthood are both charities. They are not the government. Implying that these people are trying to take advantage of the system is inaccurate and offensive. When folks give to charity, that implies they want to help others. When people in need go to charity for help, there should not be strings attached to that help.
6.) Breast cancer is a side effect of birth control.

Breast cancer is a disease. It’s not a side effect. It’s not punishment for being a slutty mcslut who sluts around. It’s a disease. It’s a disease that does not discriminate. It likes young women, old women, Democrats, Republicans, junk-food lovers, vegans, skinny women, overweight women. When you are a bald, sick individual fighting for your life, cancer does not care whether or not you donated to Planned Parenthood or stood outside its clinic showing pictures of aborted fetuses.

When a woman feels a lump in her breast, it is the scariest thing in the world. It’s the boogie man under your bed and hiding in your closet. When you have that mammogram and the doctor tells you that you have to come in for a follow-up, all the hairs on your neck stand up.

Women, no matter their socioeconomic status, should be able to get that lump checked out. By limiting their access to finding that help, I don’t find anything pro-life about that.

There are other charities out there, waiting for your help and donation. I suggest you find them.