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Komen is working from a limited (and outdated) scientific framework.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.