KomenWatch

Keeping our eyes and ears open…..

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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