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Breast Cancer Bloggers Use Social Media for Social Change

Sunday, July 31, 2011

©Brenda Coffee. All rights reserved.

The Komen foundation and its awareness campaign has come to symbolize our nation’s high profile effort to eradicate breast cancer, yet many critics are wondering if Komen has careened off course. In the last few months, numerous breast cancer advocates have used Social Media tools like Twitter, blogs and Facebook to voice their concerns. Many breast cancer advocates feel that while Komen has done an amazing job of single-handedly raising awareness about breast cancer, along with money for research grants and free mammography screenings for low-income women, Komen’s focus has changed. They have "sold out" for money. Breast cancer bloggers and their readers have said enough with the pink ribbon “awareness” campaigns and are using Social Media to challenge Komen to focus more on “the cure.” Some advocates believe this recent Social Media storm is responsible for Komen’s changing it’s traditional October Breast Cancer Awareness Month to Breast Cancer Action Month. Even though Komen critics want more than a name change, the breast cancer community is an example of how Social Media can effect social change. <PREVIEWEND>

Since Komen became the big dog on the pink block, its become almost un-American to criticize them. Many, however, believe the change in Komen’s campaign focus has them on the defensive, but what kind of “Breast Cancer Action” will Komen take? Will they continue to partner with unhealthy products like Kentucky Fried Chicken and M&Ms to raise funds? Will they still spend nonprofit dollars to sue local volunteer organizations that use Komen’s trademarked “For the Cure®” in hometown fundraising efforts even though the proceeds, often in the six figures, go to Komen? Not exactly the thank you note America’s philanthropic patrons expect from their favorite charity. From their critics’ perspective, Komen’s newly announced October strategy may simply be a new name for an old blueprint that has breast cancer bloggers and survivors seeing “red” not “pink.”

Even though I was one of the few breast cancer bloggers who had yet to write about the Komen controversy, I’ve read and posted comments about this Social Media outrage on other blogs. Last month, when I was on the Women's Health panel at TheNewFront conference in NYC, Ashton Kutcher spoke to the general assembly and asked if those of us "with brands were mobilizing community to our brands advantage?" “In order to do that, he said, "Social Media has to be disruptive." A few days later, I tossed his statements out on Twitter along with "WE are Social Media and BREAST CANCER is our brand." The response to my Tweet was overwhelming. I continued to think about Kutcher’s statement and on June 11th, contacted Liz Szabo, medical reporter for USAToday, who I met on Twitter, to see if she had any interest in doing a story about the swelling Komen anger in the breast cancer community. I also gave her links to all the bloggers, and their posts, who’d already spoken out against Komen. Not only did Ms. Szabo write a full page article, “Komen’s Pink Ribbons Raise Lots of Green, Many Questions,” in the July 18th USAToday, but it has attracted the support from other members of the press as well. The Gannett Blog said Szabo’s story “was hard-edged, newsy and nearly certain to capture a wider audience, given the emotional topic it took on.”

One of the breast cancer bloggers’ objectives has been to inform the public about how Komen, and other organizations that claim to be affiliated with Komen or are raising funds for Komen, actually raise money and exactly where that money goes. Called “pink washing,” the glut of products that display pink breast cancer awareness ribbons are designed to tug at our heart and purse strings while marketers do the “green” walk all the way to the bank. In other words how much, if anything, from the sale of pink ribbon keychains and coffee mugs actually reach Komen? As longtime breast cancer activist Barbara Brenner said in her recent blog, “If walking or shopping cured breast cancer, it would surely be cured by now.” Well listen up all you pink shoppers! Komen is selling a new product.

Komen’s founder, Nancy Brinker, recently appeared on the Home Shopping Network selling a new perfume, Promise Me,™ “the scent of compassion and courage.” The original “promise” was to Nancy’s dying sister, Susan G. Komen, that Nancy would find a cure for breast cancer. The aroma of Promise Me™ , however, has once again tipped the anger scales of breast cancer advocates on several levels. Most women undergoing chemotherapy become nauseated by familiar smells like fragrance and food. Many, like me, can no longer tolerate fragrance when treatment is over. As a result, breast cancer survivors find Komen's new scent to be insensitive, not to mention there is evidence the ingredients in fragrances may be carcinogenic. In addition, one blogger claims that only $1.51 from the $59 bottle of perfume goes toward breast cancer research. Promise Me™ is just one more product in a long line of “pinklash” products that has critics wondering where is the promise? Where is the cure?

A well-respected and credible source, who asked to remain anonymous, told me that “some oncologists say it’s impossible for them to critique Komen publicly for fear of losing funding or getting shut out of conversations and meetings.” It’s alarming when the biggest breast cancer advocate is the unspoken and problematic elephant in oncologists’ research labs and patient clinics. While many researchers and organizations are afraid to confront Komen, for fear of losing their meal ticket, those who’ve had breast cancer are not afraid of speaking up because their lives and the lives of friends and family depend on it. In fact, many breast cancer survivors and family members who’ve lost loved ones are wondering about Komen’s top heavy financial statements.

Komen’s 2009 IRS tax return, which is available online at GuideStar, shows that Komen took in $172 Million in revenue and spent $75 Million or 44% on grants to cancer research and "other organizations" while the other 56% went mostly to consultants, advertising, office expenses, salaries and other items. They spent $712,169 alone in bank fees. In addition, its 16 highest-paid executives all received six-figure salaries, including former CEO, Hala Moddelmog, who was paid $468,255. If 44% were spent on cancer research, many Komen critics would stay mum, but because it’s lumped together with “other organizations,” it’s nearly impossible to determine just how much goes toward the cure. The National Breast Cancer Coalition states on their website, "It's time to peel back the pink to see what's really happening in breast cancer research, treatment, prevention and cure."

A former director of a local Komen affiliate told me that most of the proceeds from local Komen affiliate walks and runs For the Cure® go straight to Komen national, leaving many local affiliates badly in need of operating capital. While I don’t know if that is true, many women owe their lives to Komen’s awareness campaigns as well as to local affiliate grants. According to Kathy LaTour, CureToday Magazine Blog, “The 127 races that are held by Komen affiliates around the world raise a lot of money-yes. And 75 percent of those funds stay in the community where they were raised to be used on all kinds of breast cancer related needs.” Clearly breaking down Komen’s numbers is an overwhelming task better suited to a sophisticated and impartial CPA.

I believe as women, we're doing our part:
We’re aware; we’re doing self breast exams and getting mammograms, but as The Cancer Culture Chronicles’ Anna Rachnel posted on another blog, “where is the cure?” Many breast cancer advocates are also asking where are the treatment lifelines for those with metastatic breast cancer? The Komen website’s home page says, “WEAR PINK. HAVE FUN,” but lots of women who have or have had breast cancer don’t find the “fun” in Komen’s approach.

It remains to be seen whether Komen’s shift from Breast Cancer Awareness to Breast Cancer Action month will result in significant changes needed to appease Komen’s challengers. The power of Social Media may have at least forced Komen to respond in a way individual breast cancer bloggers couldn’t have achieved on their own. Bloggers have, as Ashton Kutcher suggested, used Social Media to be disruptive, but have they gone far enough? Ashton, you’re the Social Media branding wizard. Can you suggest a next step between Komen and the vocal Social Media breast cancer community? Perhaps a mediation is in order.

If you want to know more about Komen and their critics, please visit the following links. Forgive me if I have left out a valuable conversation from this list.

Barbara Brenner
Chemobabe
Cancer Culture Chronicles
Gary Schwitzer's HealthNewsReview Blog
Gayle Sulik
Nancy's Point
Komen Watch
MSNBC
The Accidental Amazon
The National Breast Cancer Coalition
Uneasy Pink
Women with Cancer



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