Komen Has Crossed the Line

May 28th, 2011

While I have had fun making fun of all the pink crap that purports to support breast cancer patients, I have avoided direct criticism of the Susan Komen Foundation. Until now.

It’s not just because they are one of the top two most trusted nonprofit brands and I want to stay in my readers’ good graces. I respect you too much to pander like that.

I have hesitated because of people like this:

I don’t know these women. I got their picture off Flickr.
They are completely fabulous though.

I know women who have felt transformed by the Three Day Walks, Komen’s signature event. I cannot overstate their symbolic power.  They provide community. They make a natural place for a comeback from treatment or even grief. They are a way of giving cancer the middle finger. The feeling of unity and purpose at these events humbles me.

How can you criticize an organization that makes these experiences possible?

Friends, I have to speak up. While the unity may be 100% real, the purpose has become distorted. I feel that these women and the people who donate to them are being misled. I do not like to see people’s good intentions exploited.

I realize I’m a little late to the Komen critique party. Heck, there’s an entire blog dedicated to Komen oversight. Others have already pointed out how little of Komen’s money goes to research. More egregiously, they have trademarked the phrase For the Cure® and they sue smaller organizations for using it.

“For the Cure” trademarked? Maybe we’d cut them slack if they truly were about curing breast cancer. Instead, we learn that only 2% of their funding focuses on metastatic disease.

Let’s face it. If you don’t deal with metastatic disease, you are not focusing on The Cure. Since 20% of all survivors will get metastatic disease, regardless of stage at diagnosis, there is a 1 in 5 chance that this will become our problem, if it isn’t already. We need cures. Real ones, not just the kind you find on key chains.

The trademarking should have tipped us off. Trademarking is not about science. It’s about profit.

Komen has become a brand to such an extent that the reality of breast cancer has been lost.

A friend recently told me that Komen founder Nancy Brinker would be appearing on HSN. I assumed that meant Health Science Network.

Can you tell I am not a regular patron of the Home Shopping Network?

What was the straw that broke my back?

It’s Nancy’s latest product, Promise Me™ perfume.

My outrage is simple and comes in three parts: linking cancer to a perfume, the weird beauty breast cancer connection, and the misleading use of the money.

1.  Many people in chemo, myself included, become incredibly chemically sensitive. I almost passed out when a woman at my gym sprayed perfume in the locker room. I was shaking and it took a half an hour for the episode to pass. The last thing I wanted to be near or around was any kind of fragrance. There is even evidence that fragrance may be carcinogenic – For the Cure® indeed!

2.  Why do we have beauty products to raise funds and awareness for breast cancer alone? It is the only form of cancer that demands that we stay beautiful, even as we puke our guts out and lose our hair. Komen perpetuates this ideal.

I call shaved head. Or photoshop. She still has eyebrows.
Couldn’t they have photoshopped her eyebrows?

Breast cancer is the Beautiful Cancer. Can you imagine a brain cancer perfume? How about anal cancer? Why is there not the same dissonance with breast cancer? It’s all cancer, for crying out loud!

3.  This “floriental” scented perfume costs $59.00. Of that, how much do you think goes to research? If you said $1.51, you are correct! (Thanks for the math, Uneasy Pink!)
Since Komen spends a minuscule fraction of that on researching metastatic disease, very little of your fifty-nine bucks is going toward a cure.

Hell hath no fury like a nauseous me involuntarily squirted with perfume, Komen. It’s on now.

To the fantastic walkers, I still love you.  May I direct you to Susan Love’s Foundation’s Avon Walk? She is a breast oncologist focused on research.

(Yeah, I know. Avon. Beauty. But I still say it’s better…)

In the meantime, my fabulous online family has been coming up with better names for this perfume.

Who says breast cancer patients have no sense of humor?

This entry was posted on Saturday, May 28th, 2011 at 8:57 pm and is filed under Survivorship. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

115 Responses to “Komen Has Crossed the Line”

  1. June 2, 2011 at 7:12 am

    Didn’t the heads of the ACS face a similar backlash a few years ago? About defending their exhorbitant salaries? Can’t recall – chemo brain, 4 children, and now Femara-fuzz has compromised my gray matter. My 2 cents on all this brouhaha: everyone needs to take a healthy look at money they donate and how will be used. We live in a society where there is energy and well intentions and voila – a non-profit endeavor is born. Throw in a little social networking and you have a ‘worthy cause’. As far as pink goes – I would be curious to see how much all this ribbon really sells. Do you know anyone that sports a pink ribbon hoodie and jewlrey? Really. Just because they are selling, who is buying? And the point – cancer is cancer is true. Susan G. got breast cancer and had a sister with a lot of passion and a gift for fund raising. But I still contend this – while you get a case of pink fatigue every time you see the ribbon and every time October rolls around, if it reminds a woman to get or to donate a mammogram to the poor, then I think the should keep it up. There is a reason this cancer survival rates have been improving. There is no cure yet for cancer – of any kind. And yes – I agree about more for research. But where is the expose on how those dollars are really spent? THAT is news I am interested in.

    • June 2, 2011 at 7:49 am

      Hi Diane,

      Here’s an interesting/troubling article from Dr. Joseph Mercola regarding the ACS…–more-interested-in-wealth-than-health.aspx

    • Sue
      September 15, 2011 at 6:13 pm

      I had not heard the term “femara-fuzz”, but I definitely had it. Of course the docs denied it was related to the femara. I thought I had early Alzheimer’s (my Mom was diagnosed with Alzheimer’s right after my br ca diagnosis). It was debilitating and I could not do my job. I decided to go off it and see what happened. My brain came back a week later! Sorry, I know this discussion is about Komen, but I had not heard that term before. The docs wanted me to try another AI. I said “why don’t YOU try it and see if you can keep your job!” They need to be more open about possible side effects as I was really scared my brain life was over.

  2. June 2, 2011 at 9:38 pm

    And now there are Lawsuits for the Cure: Wow, we haven’t come a long way, baby!

    Where will it all end? What line will be the next one to cross? Thanks for posting.


  3. Sally
    June 6, 2011 at 2:07 pm

    I’ve done 5 mos of chemo, am bald but have eyebrows!

  4. Carolyn
    July 7, 2011 at 12:35 pm

    I was first diagnosed with Papillary Carcinoma (thyroid cancer) back in March 2005 and though I really do appreciate all of the support I have recieved over the years, I have had a hard time keeping my jaw from dropping over two things. One: all of the breast cancer items I have recieved over the years. I have been gifted with hats, tshirts, jewelry, sashes, even a Susan G. Komen pink hibiscus and so on. Shall I dare wear some of my presents in public? Most responses was this “Oh, I didn’t know you have breast cancer” me: “I don’t, I have thyroid cancer”. Then I feel mucho guilty like I’m false advertising. But there isn’t a special on HSN (home shopping network) dedicated to with any form of cancer, much less thyroid cancer. Which brings me to my number Two: Thyroid cancer is the “easy cancer”. I would really love to meet the person who coined this phrase. Six years, treatments that my body has rejected and getting ready for another surgery is hardly easy. Not to mention all the affects my body has had to go through by not having a thyroid, since it pretty much controls everything in your body. Don’t get me wrong I so love to see the sistership and awareness that the pink brings. I really believe that womens lives have been saved through the awareness spread by the Susan G organization. Just kinda hope that one day people will realize the importance of all forms of cancer. And for whoever is out there reading this do not be afraid to donate your time, money and knowledge where you feel it should be, if it opens one persons eyes to either help too or get themselves checked it will all be worth it. Remember to check your neck, boobies, know your body, get educated and don’t be afraid to ask questions, early diagnosis is the best at beating this!!And that’s my rant, thanks for reading.

    • July 18, 2011 at 8:42 pm

      just ask my friends… i loves me a good cancer rant! sorry for your hard time with the (ahem) “easy” cancer… i hope that you have some health and wellness waiting for you. xo

  5. July 19, 2011 at 1:34 pm

    I’m not above ranting about this sort of this myself:

    I don’t think people who aren’t scent-sensitive understand how much it hurts. I try to be kind, but it really feels like getting punched HARD in the head sometimes. The other day in church, a nice lady with a lovely powerful scent sat in front of me. I got dizzy and woogy and had to move. I’m sure she had no idea what effect she was having, and I don’t feel like it is my place to go around pointing it out to people.

    • Bonnie Johnson
      February 3, 2012 at 11:11 am

      This is one reason I have pretty much stopped using cologne, perfume. I wish more people knew the reaction their perfumes can cause.

  6. July 21, 2011 at 11:57 am

    Good for you for posting this topic and getting people talking. I have never had breast cancer, but know many who have. I’ve participated in many breast cancer events-Komen, ACS, City of Hope and Avon. Those experiences are powerful and life-changing. Early detection is critical, but I’d like more emphasis put on prevention…there are relatively simple lifestyle choices that can reduce the risk. Of course, there are environmental issues that need to be addressed as well.

    The ‘right’ thing would be for all cancers to receive the same kind of attention and generate the same kind of donations, but the breast cancer community, or perhaps more accurately, the breast cancer business is very organized.

    I admire the courage and strength of those that have had to battle a life-threatening illness and hope they find health and wellness.

  7. July 25, 2011 at 11:28 pm

    I have felt this way about Komen for years and I don’t have any kind of cancer (but it runs in the family). I worked with a nurse that said Komen doesn’t focus on the CAUSE of cancer. How do you find a cure if you don’t know the cause? As far as I’m concerned as long as we keep spewing radiation and other garbage into the environment there will be no cure.

  8. Martha Ann
    August 6, 2011 at 5:28 pm

    Thank you for your thoughtful post. I’m an anal cancer survivor. The chemo & radiation was tough & besides losing my hair, I spent a total of 3 weeks in the hospital. I felt isolated then (and now) because most people – husband, fanmily, friends – are embarassed by this rare and unpleasant cancer. I cope with the on-going medical complications alone. Thankfully I have a caring & concerned primary care provider. I do community outreach as part of my job & have to organize our Komen race team & work our table/booth during the event. It’s a challenge to watch all the hoopla. Thank you for acknowledging that other cancer survivors are out here without much support. Being able to vent here for a moment just did me a world of good. Thank you!

  9. August 16, 2011 at 1:14 pm

    I created a blog post on this subject and posted this story below with a link to your blog on my site, plus it will appear in Hope to create some awareness to the issue.

    Thanks for this great story!

  10. Ashley
    September 2, 2011 at 7:20 am

    Thank you for this post. You have no idea how glad I am to see this. My mom was diagnosed with BC when she was 37 (I was 17 at the time) and died when she was 50 (I was 30). I’m 35 now, two years away from the age my mom was at diagnosis. Even during my mom’s battle, I never really understood the love affair with Komen, but of course I didn’t say anything, for the same reasons you posted — the community and support that lots of women receive from it. But the last few years, I have really felt like the saturation of pink products, not just in October anymore but year-round, has become commercialized and detracts from the real substance. I think it’s great if women are empowered by the Three Day, but like you said, is all of this really “For the Cure,” and it’s kind of sick that Komen got a trademark on that and that they seemingly are so fierce about it. I’m a lawyer, and I took intellectual property classes in law school and have done trademark work. I’m somewhat surprised a trademark was given for that phrase. A trademark is supposed to be given for a unique logo or phrase, to distinguish a product or service from others. This is far too generic and equally applicable to other organizations and services.

  11. Kate
    October 28, 2011 at 9:41 am

    If this article interests you, check out the trailer for an upcoming documentary on the subject: Pink Ribbons, Inc

  12. Auralee
    February 2, 2012 at 10:01 am

    Think about this for a minute. What happens when a cure for Cancer is found? Dr’s, Hospitals, Pharmacuetical Companies, Susan G Komen, the American Cancer Society will not be needed. Do you really think they are even trying to find a Cure? I Don’t. And lets face it, the amount of money that is made from Cancer is Astronomical! It always boils down to Money and not people, mothers, fathers, sisters, friends who are fighting this disease. Sad.

    • Bonnie Johnson
      February 3, 2012 at 11:12 am

      I do not believe this and neither does my doctor son, whose 2 year old was diagnosed with Leukemia!

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