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Susan G. Komen for the Cure® – No More Apologies!

There has been a lot of discussion recently in the blogosphere about Susan G. Komen for the Cure®. I believe the rumblings are starting to be heard. Now the question is will Komen begin to listen? Like I’ve always told my students, there is a huge difference between hearing and listening.

For the record, Komen describes itself as,

—the world’s largest and most progressive grassroots network of breast cancer survivors and activists – the only grassroots organization fighting to cure breast cancer at every stage, from the causes to the cures and the pain and anxiety of every moment in between.

Komen’s stated mission is:

to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to find the cures.

Like many bloggers, I’ve been thinking about this organization of late and how it seems to have failed in the above stated mission.

But this particular post isn’t really about that success or failure.

Mostly, what I want to address today is why I have felt so uncomfortable criticizing Komen in the past.

Honestly, I’ve been “sitting on” this particular post for quite a while. Well, no more….

Here is a perfect example that illustrates my hesitation…

This past April a very dear young female relative of mine contacted me about getting various family members together to participate in the recent Race for the Cure event held at the Mall of America in Bloomington, MN.  I told her I wouldn’t be able to participate this year since I had just had my hysterectomy/oophorectomy surgery and it was too soon. My doctor would not OK my participation. That was true, but…

I admit it, I took the easy, cowardly way out.

I felt relieved because I had a valid excuse. It was kind of like having a note from my doctor to get of gym class in high school. I felt relieved because I didn’t have to explain to her how I really felt. I didn’t have to explain to her why I didn’t support Komen.

I didn’t have to explain why I really didn’t want to participate.

I felt badly for not being completely honest.  I felt guilty. I felt like I had to make excuses as to why I wasn’t participating. I feared I would appear ungrateful. I felt like I was letting people down.

In short, I felt badly because I was not supporting Komen.

Does something seem wrong with this picture to you?

This got me to thinking and then asking myself some questions…

Here’s a few I came up with.

When exactly did Komen become the face of breast cancer and maybe even the face of cancer period?

When did it become almost un-American or at least unacceptable to criticize Komen or choose to support a different organization instead?

When did people like me start feeling guilty for questioning?

When did people like me start to feel a need to make excuses for not running in races?

When did any of this become about my action or lack thereof?

Shouldn’t it be the other way around?

Shouldn’t Komen feel badly? At least a little bit?

Today, I am emphatically stating, “No more guilt, no more excuses!”

I will no longer feel badly. I will no longer feel guilty. I will no longer make excuses.  I will no longer be quiet , well, it’s not like I have been, but…

I will no longer apologize or make excuses when people ask me why I don’t support the “big K” and I don’t mean K Mart!

However, it seems to me Komen could stand to do some apologizing.

For what you might ask?

For starters how about for the lack of dollars funneled to research. According to their own fiscal records, about 23% of dollars taken in are designated for research, not even close to being enough in my book when your mantra is eradicating breast cancer.

Next, how about apologizing to people who have been denied financial assistance during diagnosis and treatment because they didn’t properly qualify or “fit in” with Komen’s mission?

How about apologizing for not communicating current breast cancer information with complete accuracy? For example, awareness and mammograms are important, but they are not the entire solution.

How about apologizing for taking issue with the “little guys” like “Kites for the Cure” and “Mush for the Cure,” who also want to use the words for the cure in their mantra?

How about apologizing for deciding to “borrow” the name of another organization when contemplating relabeling October as Breast Cancer Action month? (Maybe even Komen is saying enough with the awareness…)

How about apologizing to the many other cancer organizations who almost appear not to matter? Is it really about survival of the fittest biggest?

How about apologizing to those with cancer who do not fit the “proper cancer survivor mold”? You know the one, the one depicting everyone smiling and surviving gracefully while perhaps preparing for a race as well.

And perhaps the biggest apology should go to all those with metastatic breast cancer. Their faces seem almost hidden from view in the “Komen cancer mirror.”

And then, of course, there is that elusive cure…

Finally, perhaps Komen should apologize for not listening.

That’s all people like me are really asking for, to be listened to.

Komen has accomplished good things and I am, in fact, grateful for those things. I really am. The trouble is, there is still so much more work to be done.

And this work doesn’t involve pushing perfume.

It’s time for Komen to listen, evolve and truly lead.

It’s time for change. It’s past time.

 

Do you think Komen is up to meeting the challenges of the future and willing to change?

Do you ever feel guilty or make excuses for not supporting a well-known organization?

Do you feel Komen has exclusive rights to the phrase “for the cure”?

Jenn

Monday 23rd of April 2012

I don't think they are in a different league. Avon does it all the time. LiveSTRONG has even had a few questionable partnerships over donations etc. Just trying to understand - do you think that the 75% that Komen keeps in each community for screenings and treatment assistance etc should all go to research then? 100% to research and nothing local? Regardless of the division of funds it is never enough.

Nancy

Monday 23rd of April 2012

Jenn, I actually think Komen is in a different league as they are the self-proclaimed world leader in their supposed mission to eradicate breast cancer. And when you mantra is cure, it seems to me at least 50% should be going to research. Even that would seem too low as far as I'm concerned, but it would be better. Thanks for stopping by again. I appreciate your thoughts.

Jenn

Saturday 21st of April 2012

I am curious about a few things. You said people make you feel guilty for not supporting Komen - how is that Komen's fault? Next you said 23% to research isn't enough - there is never enough by Komen only takes 25% of the funds to the national level (which last year was $63 million. The other monies stay local to support all women. I am not sure of these ones you say Komen won't support because they don't fit the mold. Komen is not a direct service provider. They grant out funds to clinics, hospitals, groups etc to help women with breast health education, screening, diagnosis, treatment, bills during treatment, life after breast cancer and even programs dealing with Stage 4. Which group is being shunned? I agree that people make not supporting Komen like living in New York and not being a Yankee fan. It is always your choice. Komen gets yelled at for giving too much to research and not enough local and then too much local and not enough research. People get mad if they are not asked to be included enough and then complain that they are asked and "hounded" too much. And they are under constant attack because they are so well known. I don't see anyone attacking the American Cancer Society.

Nancy

Sunday 22nd of April 2012

Jenn, My guilt is mine alone, but I actually don't feel guilty anymore. That's why the post was entitled "No More Apoloiges." Now I feel free to explain myself fully when people ask me why I do not support Komen. I cannot support an organization that allocate 25% or less to research when the mantra is all about cure. You're right, it's always about choice, but so many people are not aware of the financials. When you are the self-proclaimed leader, criticism must be expected. Transparency is called for. Actually the ACS has been criticized too. Komen is in a whole different league with the pink ribbon branding, marketing, partnering with questionable businesses/products and self-promotion that goes on. Thanks for voicing your opinions.

Lee

Friday 20th of April 2012

I'd like to know where you get your statistics on where their money is spent, because it is clearly incorrect. Can you validate your accusations of only 23% going to research. Maybe you should back up that statement with some verification. And if not for Komen, who would be there bringing out Breast Cancer Awareness the way they do? Don't support them, but don't bash the good that has come out of what they do accomplish!

Nancy

Sunday 22nd of April 2012

Lee, Thank you for commenting. Actually I did provide a link to Komen's financial statements which states that Komen allocates 25% to research, so I did back up my accusations. I also have links in my other Komen/race post in which the figures show 19% is allocated to research. That's why I went with 23%, clearly an amount that is not enough when your mantra is cure. I did acknowledge the good things Komen has done. I will continue to speak out about the low dollar amount (my opinion) spent on research. Telling the truth is not "bashing." I also think it's way past time to move beyond simplistic awareness campaigns. Thanks again for sharing your thoughts.

Mike N

Wednesday 1st of February 2012

... except the Komen organization gives 80.5% of funds to research, not 23%. See http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=4509

or this: http://www.wishtv.com/dpp/news/consumer/how-much-of-your-donation-goes-to-breast-cancer-research

These events are a wonderful way for people who want to do something to feel like they are helping. And they are helping. Don't get me wrong, it's good to hear voices demanding more, lord knows we need more. But these organizations are sending a lot of money to research, and 80 cents on the dollar is not bad. Charity navigator gives Komen their highest rating, higher than ACS.

As an nonHodgekins lymphoma patient myself I sometimes feel slighted that so much attention is paid to breast cancer in particular. I think though that we should be grateful for organizations that send money to research. To rail against research because there is no cure yet it to entirely misunderstand the nature of research. I am a scientist and personally know many cancer researchers. I'll tell you what, research is hard. And slow.

Nancy

Wednesday 1st of February 2012

Mike, Thanks for dropping by again. I guess we have differing opinions again! After a fair amount of researching and reading the blogs of others who study these things, I decided a while ago that I cannot support Komen, though admittedly, they have done some good things. Your statement claiming Komen spends 80.5% on research is just wrong. Here's a link to an informative piece written by a woman I highly respect who also happens to be an accountant. She did a recent analysis of the numbers and the amount targeted toward research is more around 25% if that, not nearly enough in my opinion. Here's the link. http://cancerculturenow.blogspot.com/2011/01/komen-by-numbers.html Also, Charity Navigator does not do a complete analysis about where dollars are spent, so their ratings are not really telling the whole story. Of course, you are entitled to your opinions and are free to donate where ever you like, but as for me, I will not be giving a dime to Komen. I prefer to donate elsewhere. Thanks for commenting, Mike. And BTW, I don't blame you one bit for feeling slighted, but that's another issue... And you're absolutely right, research is slow. That's why it should be the MAIN focus, again in my opinion.

Jeanne Romano

Saturday 15th of October 2011

Nancy, would you permit us to use a portion of your blog post in a video we are making to support this exact position? I and my friend Debbie are both breast cancer survivors. Debbie runs an organization called The Pink Daisy Project that supports young women struggling with the financial hardships of breast cancer. OUr goal with this video is to get your message (which is the same as our message) heard. We plan on being bold and even a little shocking to open people's eyes to our frustration over the hijacking of pink/breast cancer. In fact, I plan on bearing my breastless chest during the video. Even though Debbie & I are both professional writers, you stated our position far more eloquently and powerfully than we could. We would be happy to give you credit in the video if you want. WOuld you give permission to use your words in our message?

Nancy

Sunday 16th of October 2011

Jeanne, Thank you very much for you kind words about my blog post. It sounds like your project is striving to fill a very important need for young women struggling with financial hardships that often accompany a cancer diagnosis. Giood for you. Please feel free to share my words in your video. I'll send you a personal message about it as well. Thanks again for commenting.

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