Attention!
August 2nd, 2011
I’ve garnered a bit of attention for my recent post on Komen. Here are two media pieces that have come out in response:
It’s a David and Goliath thing, us wee bloggers versus one of the most popular charities in the United States.
I started this blog, not to complain, not to agitate, but to educate and communicate about the social and emotional experiences of having cancer.
And the reality is, Komen is a big part of the cancer landscape. Because of that, they are an unavoidable backdrop of the social and emotional –– and dare I say medical –– realities we face.
It’s not surprising, then, that the last Komen post garnered a my personal record number of comments and hits. As always, I learned so much from the comments and emails I received. I know it takes time to wade through 100+ comments, so I am going to summarize the main points here for you. I hope I haven’t left any out.
Komen dominates the cancer charity scene, to the detriment of other cancer charities –– and other cancer patients.
• The lawsuits against other organizations who deign to use the phrase For The Cure™ are totally uncalled for.
• The lawsuits are just the tip of an uncollaborative iceberg. Komen has not partnered with other cancer organizations, even when these groups are working to fund research on cancers related to breast cancer, such as ovarian or prostate cancer.
• As one reader put it, Komen has become the “face of cancer,” so much so that people seem to think breast cancer is the only type of cancer. Women with thyroid cancer and papillary carcinoma report being showered with pink ribboned items from well meaning friends. People with cancer in more embarrassing body parts are stigmatized. And apparently Komen is a very touchy subject for childhood cancer advocates.
Komen is working from a limited (and outdated) scientific framework.
• Komen has not updated its message, despite new knowledge about the biology of breast cancer. They continue to put their focus on mammography, an important but imperfect tool in detection. Detection, of course, is but one piece of the cancer puzzle. Missing from this formulation are prevention and cure.
• Related to ignoring prevention, Komen, with its corporate partners, fails to scrutinize data about increasing cancer rates and the falling average age of diagnosis. These point to an increase in environmental toxins, such as those that go unregulated in Komen’s new perfume, which may contribute to the overall increase in cancer rates, as well as issues with food additives and obesity.
Komen has created a story of cancer treatment and survivorship that is not inclusive.
• Komen’s emphasis on “beautiful” patients and survivors leaves a lot of women out. One woman says that the “perky pink” survivor stories do not reflect her experience. There is no room for depression, divorce, abandonment, anger — many of the negative but real things that come as a part of the cancer package.
• Pink packaged educational messages actually work against the purported goal of “raising awareness.”
• Women with metastatic disease have no place in the Komen version of breast cancer. This is consequential – not only for their experience, but for funding priorities.
The organization has lost its way.
• Nancy Brinker’s salary and her apparent love of celebrity leave more than one reader suspicious about her true intentions: cure or profit? To put a finer point on it, what does it mean to pursue a cause wherein true success would put you out of a six-figure salaried job?
• I do not want to spread rumors, but these tales came out with such frequency, I would be remiss to omit them entirely. There are a number of troubling stories, both told in blog comments and in private emails, about survivors being excluded from the organization for not raising enough money, as well as of local affiliates feeling disillusioned with headquarters. Moneymaking seems to have become the priority mission. I’ll leave it at that.
Consumers need to be smarter about where their dollars go.
• The “armchair activism” of buying in place of doing good is a set up for all kinds of exploitation. A recently uncovered scam of a fake charity selling pink ribboned jewelery is only one example of how this can go wrong.
• Unfortunately, tools like Charity Navigator just reflect the financial soundness of an organization. Readers named other cancer organizations that they suspect of playing these numbers as well.
• If you want to support research, make a direct donation to a research institution.
___________
I am glad to know that folks are paying attention and asking questions. Unlike the brave shepherd David, I am not trying to bring down this Goliath. Maybe I’m naïve, but I believe that Komen has the potential to do the right thing, if they can address some of these issues in a real and meaningful way.
To be perfectly clear: we need dollars going to cancer research, support for low-income patients, and funding for survivorship programs.
All we ask is for this to be done with transparency, collaboration, and integrity.
This entry was posted on Tuesday, August 2nd, 2011 at 10:09 pm and is filed under Media, 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.
Fantastic post, CB!!!
…and thanks for linking to my blog post about mammography.
thanks for writing it, kathi!
Great posting and very informative. Komen certainly has a lot to answer for. Hmmmm let me see, cure or profit.
Profit.
i think this has become the crux. why partner with corporations and not an ovarian cancer foundation? that is not the action of a group pursuing cures.
Great post !!!!
It is to much about profit .
And you’re so right…they don’t talk about all the depressing things.
Its all about the cheery pink stuff..
NOT !!!!
*pastes on cheery smile*
the stepford patients
Wonderful post, chemobrain. I’ve felt the same way for a very long time. When I contacted Komen and the ACS (American Cancer Society) in 2007 when I was diagnosed with Inflammatory Breast Cancer (IBC), they had no info on IBC and could not direct me to anyone in South FL who might know a little about IBC. I’m now a volunteer with the Inflammatory Breast Cancer Foundation and ask everyone to watch the videos on our site (www.eraseibc.com). Too many women, as well as their doctors, have never heard of IBC and they’re being misdiagnosed or having a correct diagnosis delayed. IBC is very aggressive and needs to be treated ASAP.
Komen needs a change at the top. Nancy Brinker has done an amazing job over the years, to bring this foundation to such a high level of recognition and fund rainsing……. but I think Nancy has lost her way. Her vision appears now to be clouded. Bring in someone new to reset the course.
yes, nancy. something needs to change.
Oh wee bloggers, thy power is great! Seriously. I’m so impressed with the level of analysis and argument presented in many of the blogger’s essays about key issues in breast cancer culture and industry. The breast cancer movement is diverse and at times contentious, but the commercialization and trivialization of the disease has taken on its own intensity in the last ten years.
In addition to the positive consequences of increased visibility and funding for some important programs (of which, unfortunately, research allocations are relatively minute), the rise of pink culture did not come without costs. Our readers know that. As you state clearly, we need dollars “going to cancer research, support for low-income patients, and funding for survivorship programs.” The kind of research that gets funding is crucial. Metastatic disease is what kills people, yet as you point out the research on it is minimal. Support for low-income patients must go beyond getting them a free mammogram or a ride to chemo. Survivorship programs must reflect the diversity of experiences and coping mechanisms.
I agree with you that Komen has the potential to do the right thing, if they address these issues in a real and meaningful way. They are listening behind the scenes. Let’s see if they take it a step further to engage in public dialogue. Listening. Engaging. Incorporating what is said into their understanding. Responding. Changing. That’s a tall order for a huge, bureaucratic organization. But, it’s necessary for the eradication of breast cancer.
Thank you, as always, for your contribution to the public discourse.
PRB, you add a much needed amplifier to our collective voices. thank you for all you have done to bring these issues to light!
Thank you, thank you Chemobabe! Great blog – and I am very happy it has gotten much needed national attention – Komen does have the ability to do the “right thing” – use the multitude of $ raised to better serve the current needs of those recently diagnosed, with better/safer/kinder treatments, and survivorship programs for those who have survived the hell of the worst of it. Thank you Pink Ribbon Blues for all that you do to raise awareness, and recognizing the need to focus on the diverse impact caused across the broad range of individuals affected by cancer. We all need to make our voices heard, in groups, as individuals, as survivors surviving survivorship – we all have earned the right to demand change within the most recognized cancer foundation in the world. Come on Komen – pay attention to us!
i love “better/safer/kinder treatments.” i’m going to use that wording. that’s exactly what we need.
thanks for the comment, cindy!
Fabulous post. So comprehensive! Thank you.
Katie
it’s my talking points memo. hopefully i can be more articulate next time i speak to the media!
AS ALWAYS EXCELLENT BLOG ! ! A PERFECT VOICE FOR US CANCER FIGHTERS.
This is extremely helpful and informative, CB. I particularly like the way you have put across consistent messages, facts and analysis in a fair and non-judgmental way. Thank you
x
thank you, P! xo
I’m so glad you got all that attention, for telling the truth! Every day on my blog I get some copycat Komen wannabe trying to get me to post about their product, the proceeds of which go to “awareness.” The whole awareness thing is a scam, and at this point, I think it’s doing more harm than good and Komen is the leader. I think Nancy’s sister would spin in her grave if she knew what was going on now. Breast cancer perfume?????
Excellent post, as always, and so helpful! Will cross-link to get the word out!