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Last Night on Twitter…

It Started With A Twitter Wrestling Match

My friend and fellow person with metastatic breast cancer, April Knowles, messaged me yesterday about a Twitter chat that was happening last night. Here’s what the chat was: WWE (yes, the faux wrestling TV series) was co-hosting a chat with Komen and their tweet advertising the event said that they wanted to hear “More Than Pink” stories. The website advertising the event said that there would be prizes for participants and that they invited people to “join the fight against breast cancer.”

Huh, I thought. What is a “More Than Pink” story? I mean, I’m more than pink. I have terminal cancer and I’m getting to the point where I don’t even want to call it breast cancer, because nothing about my experience with it fits into the larger breast cancer narrative. “More than Pink,” that could be a good thing–maybe Komen’s going to start shining a light on those of us who are dying of this disease instead of posting pictures of dogs in pink bras on Twitter.

Of course, the realist in me knew that couldn’t possibly be what this was about. Because we’re talking about Komen.

What Is Komen Doing In The Ring?

Let me start with some background. Susan G. Komen for the Cure is the largest breast cancer charity in the country, and it’s named after a woman who died of breast cancer. It’s got an interesting structure: there is a national organization, and it charters all the local chapters, like mine in Puget Sound. The locals run the Race for the Cure events and they are required to send 25% of the money they raise from those races to the national organization. Meanwhile, the national organization is also getting funding not just from the locals, but from running the 3-Day walks, large corporate donors, product sales, and direct donations from the public. According to their most recent audited financial statement from 2014-15, Komen as a whole (the locals and the national) took in $250 million. That’s a lot of money.

In The Pink Cape…

But the real way to judge a charity isn’t by what it takes in, but by what it does with that money. In that 2014-15 audited financial statement, it shows that they spent $294. million. That’s even more money. How did they use it? Here’s a handy chart.

komen-financials

 

Let’s break this down. See where it says Program Expenses? That’s the part that’s supposed to be dedicated to achieving their mission of, you know, ending breast cancer. And see where it says “Supporting Services”? That’s how much is overhead costs. If you add up how much that all is, you get $77.8 million, which is 26.4% of their total budget. That’s a lot of overhead, folks. It’s why Komen only has a 2-star rating on charity navigator. Notice that it costs them a whopping $43.6 million just to run their Race for the Cure and 3-Day events. All those pink feather boas don’t come cheap, folks.

And beyond that, there’s the way they are spending their money that’s supposed to go towards their mission. Of their $216.1 million in program expenses, only $30.1 million went to research grants. That’s 14% of program expenses, and only 10% of their total budget. Meanwhile, $47.8 million, or a whopping 22% of their total program expenses, went to marketing that they include as “public health education.” So, commercials for Komen that happen to mention people should have mammograms? They’re counting that as “public health education.”

Komen’s Weak Punches

Now, that data is a little old (I wish their more recent financial statements were available but they’re not), and Komen has recently started to acknowledge that metastatic patients exist. Some of the locals, including mine, have finally begun trying to find ways to actually support us and try to save our lives. So, maybe they’re doing more now than they used to? Well, in 2015, they gave out nearly $36 million in research grants, and that’s good, it’s more than $30.1 million. But this year, that figure dropped to $32.7 million, even as they’re claiming that they’re doing more to reduce death from breast cancer. And in fact, in 2015 half the grants went to metastatic research; this year it’s only 40%.

This is all a long way of explaining that the More Than Pink marketing campaign is just that: a marketing campaign. It doesn’t come with a bigger commitment to research and they have yet to explain how they’ll meet their new goal of reducing breast cancer deaths by half if they’re not spending the money on research into a cure. And meanwhile, 113 Americans die every day of breast cancer.

Metsters Tag Team

So, I joined the twitter chat last night with questions. Questions like, “How is Komen planning to reduce breast cancer deaths by half if they’re spending less on research this year than last year?” And because I have terminal cancer and I am not afraid of offending people with my truth, I asked those questions during the chat. But my questions went unanswered, as did the questions of the many other metastatic patients who joined the chat.

This seems to keep happening in the relationship between Komen and the metastatic community: Komen realizes they need to look like they’re doing something to keep the donations and race entry fees coming in, so they come up with a new marketing campaign. And they roll it out, and people with metastatic breast cancer and their allies call Komen out on the hypocrisy of spending more on marketing than on research, and Komen does their best to ignore or minimize our voices. If Komen began actually spending the majority of their money on research that can save our lives, I mean, I’d paint myself pink and ride a pink pony through Times Square. But they don’t, and I doubt they will in my lifetime.

So, we kept tweeting our concerns with their lack of research spending and with their messaging–awareness has been achieved and it certainly hasn’t stopped any cancers from metastasizing–and they kept ignoring us.

Off The Top Rope

Then things got a little weird. Remember I mentioned the part about prizes? Well, one of the prizes was a bunch of Komen stuff, including a pink cape. And guess who won the prize pack? Why, that would be Beth Fairchild, a person with metastatic breast cancer who is a leader of metavivor.org (where 100% of your donation goes to metastatic cancer research) and an outspoken opponent of Komen’s wasteful spending on junk like pink capes instead of research. Don’t believe me? Here’s the tweet.

 

Twitter Evidence

 

This would be the part where I started laughing hysterically. I honestly thought I might pass out from lack of oxygen, I was laughing so hard. I’m a mom, so yes, I peed myself a little. And I retweeted it, because OMG hilarious amiright? I’m not kidding, I don’t think I’ve laughed that hard in a long time.

But then, the folks at WWE Moms deleted their tweet, and tweeted out that someone else had won the prize pack instead. Because of course they did–you can’t give a prize pack to someone who knows that Komen’s More Than Pink campaign is nothing more than marketing. So Beth tweeted at Komen that it was uncool they were revoking her prize pack. And Komen responded, saying that they’d send her a prize pack after all.

Komen Taps Out

So, what did I learn from the More than Pink Twitter chat? Well, I learned that Komen still won’t explain its spending choices to the public. And I learned that if you disrupt a WWE Moms Twitter chat, they’ll block you, because I’m now blocked by their account. But what I also learned is that when people with metastatic cancer stand together, we make a mighty roar, and we can effectively disrupt the pink messaging machine–even when we’re tired, even when we’re lying in bed recovering from chemo and radiation and surgery, even when we’re drowning in a sea of pink. When we stand together, we can change the narrative, and last night, we did just that.

 

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  • Beth Caldwell

    Contributing Writer

    Beth Caldwell is a mom of two and former civil rights lawyer who lives in Seattle. In 2014, she found the lump in her breast that turned out to be metastatic breast cancer and gave up her career to focus on parenting and cancer activism. In 2015, she co-founded MET UP, a grassroots organization committed to changing the landscape of metastatic cancer through direct action. Her writing is featured on Huffington Post and in I STILL Just Want To Pee Alone, a collection of essays about parenting, as well as on her blog, CultOfPerfectMotherhood.com. 

  • Show Comments (2)

  • Grace

    Unreal!!! They can’t take the heat and will never show their real numbers! It needs to stop being a huge paying job for these people 250 million a year!! And we still are seeing 113 die daily? Something’s wrong with this picture when will monies actually start going to research for a cure?plain and simple! My god it’s 30 years now…

  • Anya

    Komen is a joke and Beth took the pink clothes off the emperor. That’s why Beth is one of our Stage 4 heroes.

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