“The Emperor Has No Clothes”: Komen for the Cure Exposed

I’m pleased to have written a guest editorial for KomenWatch about the recent scandal involving the Komen organization.

KomenWatch (www.komenwatch.org) is a public service website aimed at “sharing information and generating critical discussion about the largest breast cancer fundraiser in the world, Susan G. Komen for the Cure®.” The KomenWatch website includes a large, searchable database of news sources and other articles that highlight public concerns about the Komen organization and/or its role in contributing to the splintering of the breast cancer movement and to the overt commercialization of the cause itself. It also publishes occasional editorial analyses.

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 notreveal 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 & FergusonKedrowski and SarowKingKlawiterLey, 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

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11 comments to “The Emperor Has No Clothes”: Komen for the Cure Exposed

  • KomenWatch has certainly had a lot to watch lately. And we’re all going to keep watching with them — very closely.

  • Chandra Watkins

    Superb writing and analysis, as always, Gayle. When I was diagnosed in January 2011, I went to the library looking for help. I found your book, Pink Ribbon Blues, as well as Dr. Susan Love’s The Breast Book. Yours gave me company in and validation of my disgust over attempts to wrap my cancer in pink. Dr. Love taught me about Oncotype DX, something my oncologist neglected to mention, ultimately keeping me out of the chemo chair. Your work is vital, and I and ever so many others are grateful to you for it.

  • Love this posting, Gayle. Komen has a lot to be accountable to, and I’m really hoping that this latest escapade will really persuade the public about the unsavory practices of this corporation.

  • I take my hat off to you. So well done, all of your writing, all of your efforts. Thanks for telling me about KomenWatch. My blog last week was “Should Komen’s Nancy Brinker Step Down?” and this week it’s “Join the Army of Women,” designed to reach ALL women, oncologists, researchers and donors. I reach thousands of women who aren’t really plugged into what’s going on. Please continue to give us more references so our readers can do their own homework & come to their own conclusions.

  • As always, Gayle boils down the issues to the key points. Thank you for your superb writing and analysis. It’s an honor to walk this journey with you. — @stales

  • Lisa Valentine

    Thank you Gayle for your work. Komen is a juggernaut and your efforts and those of groups like KomenWatch are starting to slow that juggernaut. There is hope, but a different kind than Komen sells.

  • Armadillo

    It has always been my suspicion that by bombarding women with incessant news and suggestions about breast cancer, some women actually develop it. Everything physical has a non-physical source: thoughts. Before something can exist in physical reality, it must be created from thought. I commend Gayle for her courage to write about this foundation in a less than positive light. Think of all the funding that flows toward breast cancer: the research, chemo, surgery, administrative work, etc. and follow the money trail. What if a woman diagnosed with breast cancer informed her doctor that, not having insurance (as many people don’t these days), she was not willing to spend the rest of her life in poverty paying for treatment and she was going to let nature take its course. Not many would do this, but imagine what would happen if women did this en masse.

    Avoiding plastic and many other toxins isn’t a viable option, but one can choose to focus on health rather than illness. Foundations that train peoples’ attention on symptoms and promote hypochondria could do better.

  • Gayle,
    Thank you for this post. I didn’t realize the dissatisfaction has been brewing for this long. Demanding accountability from Komen must continue. I’m hoping they’ve reached the tipping point after the Planned Parenthood fiasco, but somehow I fear they’re not quite there yet. Keep up the great work. I know you’ll be watching and more importantly, speaking out.

  • I am astounded, as always. This is not the behavior becoming of a charity we trust. Not at all.

  • Tru

    Armadillo, I’m not sure what you’re trying to say. If you’re trying to say that reading about breast cancer or thinking about breast cancer causes women to develop breast cancer, well, that’s not only not a scientifically valid thing to think, it’s not very helpful. If we’re to eradicate the disease at all, simply refusing to pay any attention to it lest we “attract it to ourselves with our thoughts” is not going to help. “Everything physical has a non-physical source: thoughts” is not really an evidence-based philosophy. Our bodies don’t manifest disease just by thinking about disease; disease comes from things that happen within the body as a result of the laws of nature.

    It is true that if we want to find a way to get rid of breast cancer, we must first think that such a way is possible. However, we cannot also do that without thinking about the disease and acknowledging that it exists. I agree with you if what you’re trying to say is that we’re spending enormous amounts of time and money and energy treating breast cancer instead of thinking more about how to eliminate it, and how we can create a world of health instead of a world in which we are continuing to deal with this disease.

  • Though I can’t speak for Armadillo about whether she/he is saying that reading about breast cancer or thinking about breast cancer causes women to develop breast cancer, I do know that there are both internal and external pressures that influence microbiology, e.g., stress and cortisol levels, that influence the immune system and help to create eocosystems in which diseases can flourish. I’ve read that waiting for test results, for example, has the same impact on cortisol levels as getting negative results. Interesting to think about the impact of worry and anxiety on our systems, but it’s clearly a complex system and cannot be reduced to a simple cause/effect. There was a great essay from the Collaborate on Health and the Environment about this, Exploring and Building Models.

    I agree that we’re spending enormous amounts of time and money and energy treating breast cancer instead of thinking more about how to eliminate it. We’re also dealing with a heavily commercialized industry that is motivated by corporate and political interests that have little motivation for creating a world of health.

"women urged to get screened because it might save their lives. But that’s only 1 possible outcome, and it’s the least likely one" @cragcrest cutt.ly/jei8WJr

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