KomenWatch

Keeping our eyes and ears open…..

Category Archives: Organization

Agenda for the Future

What Could the Future of Breast Cancer Advocacy Look Like?

  • Organizations focusing on breast cancer, other cancers, and public health work together to form reasonable partnerships, leverage available resources, and reduce duplication of services.

  • Organizations use evidence-based information along with the highest professional and ethical standards to develop programs and increase their sustainability and capacity.

  • Organizations systematically and continuously evaluate their programs for efficacy, efficiency, and relevance.

  • Organizations are clear and transparent about whose interests they represent.

  • Any organization working toward the eradication of cancer does not (directly or indirectly) endorse, partner with, or accept donations from any entity that contributes to the production or distribution of known or suspected carcinogens.

  • Any organization working toward the eradication of cancer does not (directly or indirectly) accept donations (monetary or in-kind) from any entity that profits from the diagnosis or treatment of cancer.

  • Research into cancer causation, prevention, detection, treatment, and aftercare is coordinated and, at times, collaborative to foster the greatest impact. Organizations that fund research work within this structure, with clear, evidence-based criteria for funding decisions.

What is Komen’s Role in this Future?

  • Remember that Susan G. Komen for the Cure is a nonprofit organization, not a nonprofit corporation as Nancy Brinker refers to it. Act according to sound ethical principles befitting of a nonprofit.

  • Cease partnerships with corporate sponsors who engage in “pinkwashing.”

  • Stop strong-arming other organizations over the phrase “for the cure.” Trademark or not, Komen does not own this common language. Support your sister organizations.

  • Act in accordance with the mission of being “for the cure” and make research the top funding priority.

  • Stop producing messaging and education programs that promote simplistic early detection and lifestyle prevention measures. Early detection is a misnomer for many cancers, and it is no guarantee of a cure.

  • Partner with other breast cancer organizations to produce and disseminate evidence-based breast cancer awareness and education resources. Doing so will result in costs savings and economic synergies.

  • Too many precious resources are being wasted on holding grandscale fundraising events. Consider the power of social media and other original ideas in your fundraising efforts.

  • Prioritize funding and advocate for real prevention by commissioning studies on environmental factors, and by lobbying congress for legislation to stop corporate polluting and the manufacturing and marketing of known carcinogens.

  • Fund research studies that encompass 10-year, 20-year, 30-year periods to gain a better understanding of survival and mortality statistics for ALL stages of disease. Scientists know that five-year survival statistics are inaccurate representations of breast cancer survivorship.

  • Recognize the needs of women living with metastatic breast cancer; prioritize research funding in this area.

  • Expand your vision to include other women’s cancers, particularly those that are known or suspected to be associated with the breast cancer genes (e.g. ovarian and colon cancers), those that can result from breast cancer treatments (e.g., uterine cancer, leukemia, and lymphomas), and those with similar causation.

The Emperor Has No Clothes

Guest Editorial: Gayle Sulik, M.A., Ph.D., author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health.

In the last few weeks Susan G. Komen for the Cure was exposed. We have watched and listened as journalists, health advocates, philanthropists, bloggers, affiliates, Komen supporters, and countless others have shined a light on the obvious: The Komen foundation – breast cancer charity turned nonprofit corporation – is a juggernaut in the fight against breast cancer.

In the past, many have overlooked the obvious. Blinded by pink. Fueled by hope. Engaged in an emotionally charged war against a disease that no one should have to bear alone. It all made sense somehow. Critiques of the world’s largest breast cancer charity were mostly hidden beneath a barrage of pinked propaganda. When anyone openly raised concerns they were met with accusation, hostility, and anger. Komen founder Nancy Brinker summarily dismissed as curmudgeons and naysayers those who would dare to confront the authority of pink.

Though marginalized to some extent people have been, for years, arguing for fundamental changes in Komen’s version of the breast cancer paradigm. KomenWatch includes many of the arguments and concerns in its archives dating back to the 1990s. The news articles, reports, and letters from breast cancer survivors and others reveal a persistent questioning of the powerhouse organization.

In 1995 Joelyn Flomenhaft wrote a letter to The New York Times editor saying that, although she had done so in the past, she would not be attending the Komen Race for the Cure because people were being told to write their years of survivorship on pink visers and badges. “Breast cancer survivors should have the right to choose to make their illness public,” she said, “not have their choice made for them by race organizers.” Her letter suggested that while some do feel empowered by sharing in this way, Komen’s expectations about how a person should display her survivorship may also exert undue pressure on the diagnosed. I’ve heard similar sentiments throughout my research of pink ribbon culture.

Investigations into Komen’s activities suggest that the growing aversion to the organization’s approach to breast cancer support and awareness may be more than simply a matter of personal taste. In 2003, with support from the Fund for Investigative Journalism, Mary Ann Swissler examined Komen’s corporate and political ties and their influence on the direction of the Foundation. Komen’s literature did not reveal the lobbying ties, stock interests, seats on boards of private cancer treatment corporations, or the political activism of its key leaders, including Nancy Brinker herself. Yet Komen’s “stock portfolios and cozy relationships with Republican leadership” not only set them apart, their ties to cancer-related industry affected the organization’s objectivity and credibility. Sharon Batt, author of Patient No More: The Politics of Breast Cancer, told Swissler how Komen rose above the rest of the breast cancer movement in terms of power and influence.

“For one thing, the Komen Foundation has had more money. For another they carry friendly, reassuring messages through the media and their own programs, a phenomenon I like to term the ‘Rosy Filter,’ meaning the public is spoon-fed through a pink-colored lens stories of women waging a heroic battle against the disease, or the newest ‘magic bullet.’ Yet little light is shed on insurance costs, the environmental causes of breast cancer, or conflicts of interest.”

In the years that followed Swissler’s exposé the Komen organization was taken to task repeatedly, though sporadically, about how its political affiliations, high media profile, bureaucratic structure, corporate partnerships, industry ties, and market-based logic had led to questionable decisions. Squeezing out competing fundraisers is one of them. When Komen decided to expand its 5-K race to a multi-day walk, it started in San Francisco where Avon already had a 2-day walk planned. When Komen came in, Avon’s funds plummeted. KomenWatch told me that since the inception of its website numerous individuals have reported in confidence that Komen organizers have “deliberate strategies of non-collaboration” that keep them from attracting support for their smaller and less extravagant community initiatives. Against this background, it may not be surprising that Komen’s branding initiatives also involve legal efforts to keep other charities and organizations from using “for the cure” in their names.

In 2004 Breast Cancer Action tried to raise the public’s awareness that no one even knew how much money was being raised and spent in the name of breast cancer as awareness gave way to industry. Now in 2012, Reuters reports that critics within the philanthropic and research communities have also raised questions about Komen’s scientific approach and funding allocations, and The Washington Post rightly points out that Komen is part of a larger breast cancer culture that emphasizes “optics over integrity, crass commercialism and the infantilization of the female experience into something fashionable, cheerful or sexy.”

Over the years there have been numerous critiques of the Komen foundation. In addition to the news articles and essays in the KomenWatch archives, several books written about breast cancer in the last decade also note Komen’s role in the creation of a narrowly defined and profitable pink ribbon industry. [See EhrenreichKasper & Ferguson, Kedrowski and Sarow, King, KlawiterLey, and my own book, Sulik.]

Komen’s recent decision to change granting criteria in a way that would preclude the women’s health network, Planned Parenthood, from applying for grants to offset the cost of providing screenings to low-income women, is the latest in a series of moves to prioritize Komen’s brand. Though the decision was reversed, KomenWatch is keeping eyes and ears open. The rest is up to you. As a medical sociologist, I’m glad to be part of this message. Kudos to KomenWatch.

/  Gayle Sulik

Mammograms, diet & exercise will not end the epidemic

Title: Mammograms, diet & exercise will not end the epidemic

Author: Karuna Jaggar

Publication: Think Before You Pink blog / Breast Cancer Action

Publication Date:  September 13, 2011

In anticipation of National Breast Cancer Awareness Month this October, Susan G. Komen for the Cure’s CEO Nancy Brinker is calling for “less talk, more action” on breast cancer. I am struck by how similar the urged “action” looks to what the organization has been advocating for years. Komen’s “take action” emphasis continues to be on individual women getting annual mammograms.

At Breast Cancer Action, we bring a markedly different understanding of what action we all need to take—for ourselves, each other, our mothers, daughters, and granddaughters—to truly end the breast cancer epidemic. Komen’s faith in mammograms to bring the “end to breast cancer” is misplaced.

Link To Full Article

 

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

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

Author: Nancy Stordahl

Publication:  Nancy’s Point blog

Publication Date: August 12, 2011

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.

Link to Full Article

Komen’s Wild Ride

Title: Komen’s Wild Ride

Author: Alicia C. Staley

Publication: wegoHealth blog

Publication Date: June 10, 2011

Dear Susan G. Komen for the Cure:

Stop. Just stop. I’ve reached the point where I’m embarrassed by you and all your branding efforts for the cure. I see tons of pink ribbons, plastered on everything from shampoo to lawn mowers and cat litter.  I’m beyond aware.  I’m frustrated.  I can no longer justify your breast cancer awareness campaigns to my friends that want to know why there’s no cure.  I’ve received more emails in the past week over at Awesome Cancer Survivor expressing exasperation at the breast cancer community than I care to count.  As a breast cancer survivor, I shouldn’t have to justify your behaviors.

When you launched your partnership with Kentucky Fried Chicken  (aka “Buckets for the Cure”), I excused your lapse of judgment.  I assumed it was a temporary slip, and you’d eventually focus your energies back on partnerships and alliances that aligned more closely with your stated goal of “For the Cure.”  You trumpeted the partnership, declaring KFC would make the largest one time donation of an estimated $8 million to Komen. The ultimate goal of the $8 million donation never materialized.  According to your own reports, you only took in $4.2 million.  Not pocket change by any stretch of the imagination, but only about half of what you were looking to grab. You are the self-proclaimed leader of the breast cancer community.  Where is your leadership?

Link to Full Article

Enter the Komen Bandits — Racing With A Message for BC Mets

Title: Enter the Komen Bandits — Racing With A Message for BC Mets

Author: Gayle Sulik

Publication: Pink Ribbon Blues blog

Publication Date: June 4, 2011

This weekend marks the 22nd annual Susan G. Komen Global Race for the Cure® 5K at the National Mall in Washington, DC. Nearly 40,000 people participated and the event raised more than $5 million. Reports of the race festivities are awash with celebrity, festivity, performance, and unbridled enthusiasm.

Susan G. Komen for the Cure’s founder, Ambassador Nancy G. Brinker, “charged up the crowd, noting that the sea of pink making their way up the National Mall was a bold statement by this community that we will not rest until our promise to end breast cancer forever is fulfilled.” She went on to say that, “If my sister Suzy were here today, she would take joy in the inspiration you provide. She’d take pride that in a politically divided city, there is unity on this issue. She’d take comfort in the fact that hopes are high, and that a cure is near.”

SGK social media was all a twitter with live feeds from the race revealing a mood that was triumphant, proud, and promising while solidifying the message that Komen is responsible for progress.

Link to Full Article

Tie a pink ribbon ’round that old deadly tumor.

Title: Tie a pink ribbon ’round that old deadly tumor.

Author: rjheart

Publication: Open Salon blog: Welcome to My World

Publication Date: April 10, 2011

The Susan G. Komen foundation was founded in 1982 following the death of Susan Komen, sister of Nancy Brinker. Nancy Brinker is the founder and CEO of one of the most powerful and profitable “non-profits” in the world. Susan Komen died after three years of fighting breast cancer. She was diagnosed at a time when little was known about this deadly disease. People would cross the street to avoid going near the 36 year old woman because of their fear that she was contagious.

Susan’s last years were spent in pain and fear. Radiation treatments and breast removal were her only paths of hope. She reached out to her fellow sufferers and died with the dream that no one would ever again suffer the way that she had. Her sister vowed to bring her dream to reality. Using her experience in marketing and the influence of her family’s wealth, she began to raise money for awareness and treatment of the disease that killed her sister and nearly took her own life.

In 1984, Nancy Brinker also detected a lump in her breast and demanded immediately that the doctors remove both her breasts. Following their removal, she was given chemotherapy and survived. The experience of watching her sister wither away and die had made her choice of aggressive treatment obvious. She then wrote a book detailing her experience and guiding other women to fight and to speak out.

1982 saw the death of Susan Komen and the birth of breast cancer awareness.

Here we are. It is 2011.

Link to Full Article

Muckety Listing: Susan G. Komen for the Cure

Title: Muckety Listing: Susan G. Komen for the Cure

Author: Muckety

Publication: Muckety

Publication Date: Accessed April 4,  2011

Welcome to the place for tracking people and organizations with power and influence!

Muckety is an award-winning web site and information/technology company, honored for outstanding use of digital technologies. We publish maps and related news stories, and we provide mapping technology and data to other companies.

How are we different?

Unlike most social networking sites, our data is not user contributed. This may seem contrary to the overall trend of online databases, and it is.

We specialize in the paths of influence – encompassing government, business and nonprofit affiliations. But we also show connections users might omit from their own public profiles, including family members, political involvement, lobbying activity and criminal charges.

Muckety Listings for:

What We Still Don’t See

Video: “What You Won’t See”

Starring: Nancy Brinker, CEO and Founder of Susan G. Komen for the Cure®

Date: June 23, 2010

Youtube videos have become the TV commercials of the digital age. This 32-second video clip of Nancy Brinker advertising the “behind-the-scenes” work of the Komen foundation is essentially the same thing. This particular clip represents something new for Komen in that it does not mention a promise to a dying sister and instead acknowledges the public visibility of Komen “t-shirts” and the relative invisibility of the inner workings of the organization. Brinker states that, people don’t see Komen’s hundreds of research grants, thousands of free screenings for low-income women, and millions of volunteers working [on something unspecified] late into the night all with the hope of someday making breast cancer itself invisible.

Interesting commentary given the numerous critiques and concerns raised in recent years about: Komen’s relatively small percentage research allocations; superficial approach to breast cancer education and awareness; and obsession with branding, corporate partnerships, and trademark issues. Could these concerns be the spark for Brinker’s half-minute response?

After decades of being seemingly untouchable, Komen is on the defensive. The organization has refocused its public relations exercises, cleaned its website, and made public statements like this one from Brinker. Unfortunately, there have been no in-depth responses to the valid concerns that continue to be raised about the organization’s:

  • misrepresentation of the realities of the disease
  • skewed program allocations
  • ongoing misinformation about the role of mammograms and “awareness” as keys to the eradication of the disease
  • lack of ethical review processes concerning corporate contributions and “pinkwashing”
  • failure to cooperate with other breast cancer organizations

If Komen’s strategies have not reduced breast cancer incidence, rates of recurrence, or the number of deaths from metastatic disease, how will these same strategies work to “end breast cancer forever?” They won’t. They will only bring in money, pretty up the disease, create entertaining past-times for consumers, alienate the diagnosed who don’t fit Komen’s pretty pink model, divert resources from other organizations and research priorities, and yes, fortify the t-shirt industry. They won’t end the disease no matter how many commercials Nancy Brinker makes.

There’s still so much we still don’t see.

KomenWatch grants full permission to republish our editorials in their entirety, with proper citation and link.

Citation for this editorial: KomenWatch. (2011, April 1). What We Still Don’t See. Retrieved from http://www.komenwatch.org/.

Compromised?

Title: Compromised?

Author: Mary Ann Swissler

Publication: Creative Loafing

Publication Date: October 23, 2003

“Editor’s Note: Last month an estimated 10,000 runners and walkers participated in the fifth annual Susan G. Komen Race for the Cure along the downtown St. Petersburg waterfront. The Komen Foundation is the most well-known national breast cancer organization, providing funds for research, education, screening and, to some extent, treatment. Its trademark pink ribbons and pink balloons have become one of the country’s most recognizable symbols, and the organization has won deserved praise for its dedication.

In the past couple of years, however, dissenting voices have begun to be heard about Komen. For some writers, like Barbara Ehrenreich (Nickel and Dimed, “Welcome To Cancerland” [Harper’s magazine]), the “pink kitsch” and sentimental aspects of the “breast cancer industry,” as she calls it, are hard to take. Others, like Sharon Batt (Patient No More: The Politics of Breast Cancer) or various feminist breast cancer organizations, say that Komen’s many corporate ties have led to a focus that is heavily weighted toward finding a medical cure for breast cancer, and away from environmental conditions causing it. The following story examines Komen’s corporate and political ties and their influence on the Komen Foundation’s direction.”

Link to Full Article