Attention! [by Chemobabe]

Lani Horn, a.k.a. Chemobabe

Pink Ribbon Blues is honored to share a recent post from blogger, Lani Horn, who writes under the name Chemobabe. She is a social scientist in her “regular life” and created ChemoBabe as a persona who has “enough spunk and edge to get smacked down” by treatment and “stand back up ready to fight some more” and who could “talk back bluntly to the euphemistic ways people skirt that horror in everyday conversations.” Horn has shared her experiences with cancer and her concerns about the culture, the cause, and the industry that sometimes seems to focus more on reproducing itself than eradicating the disease and attending to the needs of the diagnosed. With permission, Pink Ribbon Blues republishes Chemobabe’s Attention! — a commentary on Komen’s role in the cancer landscape and the “wee bloggers” who seek to hold the organization accountable to the people and the mission it was created to support.

I’ve garnered a bit of attention for my recent post on Komen. Here are two media pieces that have come out in response:

• USA Today

• KIRO FM news radio

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 truesuccess 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.

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9 comments to Attention! [by Chemobabe]

  • 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, Chemobabe, for your contribution to the public discourse.

  • I read this on Chemobabe’s blog and here again. It is AWESOME, especially her ability to tell it like it is. I’m so hoping for change in how Komen does its business — and it is a business first and foremost. But I hope one day Komen is in the business of helping to save people’s lives by pouring tons of money into research.

  • The babe rocks! And I agree, enough wasting funds to promote fun-loving “awareness” campaigns. The time to solve the problem of breast cancer is NOW.

  • thank you for reposting, PRB. i am happy to make a contribution to this conversation.

  • I am constantly, and I mean constantly, getting solicitations from people wanting me to post things on my blog – Komen Copycats I call them. They’ll donate the proceeds of their item to “awareness.” Everybody wants on the Pink Bandwagon to make a buck – it’s just disgusting.

  • The pink cup runneth over. There are so many companies, campaigns, and organizations trying to glean a bit of revenue and good PR from the pink ribbon that it’s become wasteful and almost meaningless.

  • Another great commentary on the “state of all things Komen.” The saddest thing here is that there is so much potential being wasted. Like so many others, I remain hopeful that Komen will make meaningful changes. I just hope they don’t take too long to do so.

  • Glenda

    I have colon cancer. I don’t want to take anything away from people with breast cancer, but I’m so very tired of all the pink. The marketing of it. I sometimes feel that my cancer experience doesn’t count because it’s not “popular”. Thank you for what you’ve said.

  • I know what you’re saying. The pink cause is marketed so heavily that it drowns out reality, which includes the realities of other cancers and diseases. It’s not okay. Thank you for sharing.

To speak her truth, she needed to give her words and identity away, to a trusted poet and friend @stevedavenport breastcancerconsortium.net/ov…

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

** MORE MEDIA LINKS **
** MORE RADIO INTERVIEWS **