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 Ehrenreich, Kasper & Ferguson, Kedrowski and Sarow, King, Klawiter, Ley, 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.
Title: Detailing the problems of ‘breast cancer culture’
Author: Anna Holmes
Publication: The Washington Post
Publication Date: February 09, 2012
…Although the mainstreaming of breast cancer activism and awareness is a triumph of marketing and outreach, its ubiquity has come at a cost – or depending on your point of a view, a profit – in the form of hundreds if not thousands of new or retooled consumer products. Cars, makeup, vacuum cleaners, stuffed animals, NFL and MLB apparel . . . all these and more have, at one point or another over the past few decades, been slapped with a fresh coat of (pink) paint and the imprimatur of any number of breast cancer charities, including Komen and the other behemoth in the breast cancer space, the Avon Foundation…
pink ribbons, pink ribboned-consumer goods and associated runs, walks and jumps “for the cure” have become so commonplace and therefore benign that we hardly notice them; we’re anesthetized to this major killer of women to the point that it’s almost accepted as a rite of passage, not a profoundly painful experience. The color has been promoted as fashionable, a shorthand for a sort of optimism and positivity – what [Samantha] King calls the “tyranny of cheerfulness” – that threatens to obscure much of the justifiable grief, frustration and fear that accompany the epidemic, not to mention the hypocrisies of the companies who benefit from it…
Yiddish is a very expressive language, a blend of Hebrew and German used by Jews in Europe when they lived in shtetls. One of my favorite Yiddish words is chutzpah. The word has taken on some positive connotations, but I’m using it here in the sense of the Hebrew source word, where it means someone who has overstepped the boundaries of accepted behavior with no shame.
Chutzpah has the benefit of being both expressive, and relatively easy to pronounce, (unless you’re Michelle Bachmann). It is also a very apt description of the Susan G. Komen for the Cure Foundation’s recent move to sponsor October as Breast Cancer Action Month.
Title: Website accuses Jennifer Ashton & CBS Early Show of bias on mammography “debate”
Author: Gary Schwitzer
Publication: Gary Schwitzer’s HealthNewsReview Blog
Publication Date: July 27, 2011
The CBS Early Show, saying it was “looking for clarity” on the mammography debate after the American College of Ob-Gyn statement last week, turned to “medical correspondent” Dr. Jennifer Ashton, who appeared in the studio with Nancy Brinker of the Susan G. Komen Foundation.
Now, the Komen Foundation has a one-sided view of the mammography debate (entirely pro-screening) – one not shared by all breast cancer advocacy organizations – e.g., Breast Cancer Action or the National Breast Cancer Coalition. So there’s a bias there.
In a Susan G. Komen for the Cure® blog post (Jul. 20, 2011) the organization writes;
The American College of Obstetrician and Gynecologists today recommended annual mammograms for women 40-49, modifying earlier recommendations in what Susan G. Komen for the Cure is hailing as a “victory for women’s health.”
In the same week, Nancy Brinker, Komen’s self-styled global leader of the breast cancer movement appeared on the CBS Early Show in a segment hosted by Rebecca Jarvis, and CBS’ own in-house medical attaché’, Dr. Jennifer Ashton, to discuss this latest development in mammography screening guidelines.
Ms. Brinker’s public comments and appearances are to be expected in relation to the ongoing debate about the benefits, limitations, and risks of one-size-fits-all screening guidelines. The debate has a long history, and the Komen organization has been deeply committed to mammograms for thirty years without, unfortunately, much regard for the concerns raised in the medical and scientific community that call for improved accuracy, quality, and the development of specific risk profiles to determine which groups of people have the greatest chance of benefitting from screening.
However, Brinkers’ appearances at this point in contemporary history involve more than the simple offering of an “advocate perspective” on screening. Brinker consistently uses her message to sell her brand.
Nancy Brinker on CBS Early Show
Although a departure from her usual pink ensemble, Ms. Brinker appeared resplendent on the CBS Early Show wearing a tailored orange jacket embroidered with Komen’s trademarked running ribbon logo. As the key figure head for Komen’s pink-ribbon brand, most of Ms. Brinker’s outfits feature the trademarked running ribbon. The Komen organization imprints the logo on a multitude of products from t-shirts to eggs to perfume to their founder. To our knowledge Brinker has yet to have the running ribbon tattooed on her body.
Dr. Jennifer Ashton on CBS Early Show
As reporters, pundits, individuals, and MDs set up camp on one side or the other of the mammogram screening war zone they too get caught up in the branding.
CBS’s own medical reporter, Dr. Jennifer Ashton, had Komen’s embroidered logo on her blouse. Is Dr. Ashton an employee of the Komen organization? Is CBS running an advertorial for Komen? Is the television spot another marketing strategy involving Komen product placement? Thankfully the host, Rebecca Jarvis, appeared to be trademark-free perhaps to indicate that CBS was committed in some regard to a more objective discussion of the issue.
Screenshot of CBC Early Show segment
In the CBS video, Dr. Ashton outlined three of the more recent mammogram screening recommendations about when an average risk woman should begin screening and with what frequency. This is not an exhaustive list of organizations offering recommendations on screening, but it includes the American College of Obstetricians and Gynecologists (ACOG), the American Cancer Society (ACS), the National Cancer Institute (NCI) and the U.S. Preventive Services Task Force (USPSTF).
The simple difference in these guidelines begs an important question that Ms. Jarvis asked of Ms. Brinker;
“Why can’t they get together and pool their data and come to one conclusion on this?”
Fascinating question, Ms. Jarvis! As the “leader” of the global breast cancer movement Komen would be in a strong position to convene and moderate such a meeting of the minds. Review the data. Establish strong and objective standards for analyzing the data. Identify gaps. Point out risks, benefits, and limitations. Determine the conditions under which screening works for particular groups of women. The USPSTF actually did this already. Here’s a video with one of the members of the task force, Dr. Russ Harris, discussing the information. But okay, let’s bring more groups to the table. Why not? Clearly, there is A LOT at stake in this issue. Instead of engaging the question, Ms. Brinker said this;
“Well, we’ve had a conclusion for many, many years at Susan. G. Komen, almost a generation. Screening saves lives. The 5-year survival rates for breast cancer diagnosed early is 98 percent…and this is largely due to screening and early diagnosis.”
Ms. Brinker believes, and therefore Komen believes, that screening saves lives. Specifically, mammography screening. Not MRI. Not ultrasound. Not access to quality care. Not newer and better treatments. Not targeted therapies. Not biological, genetic, and molecular factors that are yet unknown. Not avoiding the disease in the first place. Screening. Brinker’s unflinching attachment to this 30-year-old conclusion is astounding. By stating this message over and over in an echo chamber, she loses sight of the forest for the trees. Even ACOG – which supports the general age 40 annual screening guideline – admits openly:
“What’s clear is that guidelines aren’t hard and fast rules,” says Thomas J. Herzog, MD, clinical professor of obstetrics and gynecology at Columbia University Medical Center in new York City. “Guidelines often need to be individualized to the patient.”
Guidelines, Ms. Brinker, aren’t hard and fast rules. Your new best friend ACOG said so. Yet Brinker lives in a world that relies on hard and fast rules. Screening saves lives. Buy the brand. End of story. In an attempt to delegitimize the Task Force that reached a conclusion different from hers, Brinker remarked;
“…The Healthcare Prevention Taskforce was highly confusing twenty months ago when they took this on, because they were scientists looking at data that most of us already knew.”
This statement deserves some active listening. The Healthcare Prevention Taskforce to which Brinker refers is the U.S. Preventive Services Task Force (USPSTF) – a government mandated working group, that is
“…[a]n independent panel of non-Federal experts in prevention and evidence-based medicine and is composed of primary care providers (such as internists, pediatricians, family physicians, gynecologists/obstetricians, nurses, and health behavior specialists).”
The USPSTF did not “take this on.” They were mandated to systematically and comprehensively investigate and analyze the existing data on screening. Of all of the groups who have made recommendations on the subject it is, in reality, the only body that does not have a clearly vested stake in the findings. This is not to say that the merit of the findings, the procedures used, and the translational capacity of the conclusions should not be evaluated in their own right. They should. But there is no conflict of interest concerning this group of investigators and the issue at hand. And, if “most of us” already “knew” about that data, then why didn’t this information come out ten years earlier? Wait, it did. In 2001 a critical review of the clinical trials on screening was published in the medical journal The Lancet. It pooled the results and found only a 16% reduction in the risk of dying of breast cancer for women who were screened.
Komen, on the other hand, does have a vested interest in screening. It has been the organization’s rallying call for three decades. It comprises the bulk of Komen’s messaging and has become the raison d’etre of its existence (besides selling pink-ribbon products). Komen spends some money on research (as we have pointed out previously), but the bulk of the program spending is in “education.” What are people educated about? Screening. And the education stops with “Get your mammogram. It saves lives.”
Ms. Brinker brings the point home in her rhetorical monologue when she shares her vision of the future;
“Mammography is not 100% perfect. It should be. We have the ability to make it perfect in the U.S. today. It’s political will. You know it should be more accurate.”
It would be nice if mammograms were 100% perfect. Agreed. If they didn’t have a rate of false positives that approached 80%. If they didn’t miss 25-40% of tumors that were cancerous. If they could indicate whether a pre-cancer would progress or not into something dangerous. If “perfection” were achieved, however, the result would be a reduction in overtreatment and overdiagnosis (a good thing), but based on current knowledge about breast cancer and treatment it is not likely to reduce the number of deaths from the disease, and it would do nothing in terms of prevention. It would do a better job of diagnosing cancers, perhaps, but it would not stop people from dying of breast cancer.
Ms. Jarvis then asks Ms. Brinker to clarify what she means by “political will.” Given that the federal government enacted the Breast and Cervical Cancer Mortality Prevention Act (1990) to insure access to screening for low-income, uninsured, and underinsured women and the Breast and Cervical Cancer Treatment Act (2000), which gives States the option of providing Medicaid coverage to low-income, uninsured and underinsured women, under 65 years of age, who have been screened and diagnosed through the National Breast and Cervical Cancer Early Detection Program and need treatment, political will does not seem to be at issue with regard to a commitment to screening. Acknowledging the limitations of screening, the lobbying of technology manufacturers, and the development of new diagnostic tools is another story.
Unfortunately Ms. Brinker does not attend to these issues or give any clear account of her perception of political will. She discusses the ability of airport screening technology to see what people have eaten. How this relates to the diagnosis of malignant breast cancers eludes us. Instead Ms. Brinker reins in the discussion to Komen’s agenda on screening mammography;
“[B]ut the issue is it does work. It works. It works in a broad population and people are now living longer because of it.”
It does work. Sometimes. Depending upon the study cited there has been a documented reduction in mortality due to screening that is somewhere between 10 and 30 percent. That’s a pretty low percentage really. But Nancy just repeats over and over. It works. It works. It’s a “victory for women’s health.“
What about the 5 to 50% of people who are overdiagnosed?
What about the 20 to 30% of people who are over-treated, sometimes for conditions that are not life-threatening?
What about the estimated one-third of the people considered to be “cured” of breast cancer who will then have a recurrence or develop metastatic disease, even those who were diagnosed at an early stage?
What about the fact that the actual number of women and men dying from metastatic breast cancer has hovered around 40,000 per year, with no significant decrease since 1990?
Do any of these statistics feel like a “victory for women’s health?”
As the largest breast cancer fundraising and advocacy organization in the world, we expect more from Komen. Why is the Komen organization not asking these questions? Why are they aggressively promoting a stance on screening that is clearly questionable given existing evidence? Why is Komen avoiding the complicated questions and concerns that others have about screening? Isn’t it Komen’s job to advocate for the best interests of the entire breast cancer community? Doesn’t that include pragmatic criticism and scientific analysis of existing research as well funding new research to answer lingering questions?
A victory for women’s health would be eradication of breast cancer. Not a screening technology, which is diagnostic at best, and doesn’t reduce the chances of dying from breast cancer for 70 to 90 percent of the population.
Where’s the advocacy, Komen? Who do you work for?
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Title: Komen’s pink ribbons raise green, and questions
Author: Liz Szabo
Publication: USA Today
Publication Date: July 18, 2011
Supporters of Susan G. Komen for the Cure are used to seeing the group’s founder, Nancy Brinker, at fundraisers such as Race for the Cure.
But some breast cancer survivors said they were surprised to see Brinker recently on the Home Shopping Network selling perfume. The new fragrance, called Promise Me, comes in a rose-colored bottle with Komen’s trademarked pink ribbon, and its manufacturer has pledged to donate at least $1 million to the charity. The perfume is the latest in a long line of products bearing Komen’s pink ribbon, from kitchen mixers to gardening gloves, that have helped the group raise $1.9 billion for breast cancer causes.
And though some of Komen’s marketing partners have become the butt of jokes (KFC’s pink “Buckets for the Cure” was even satirized on The Colbert Report last year), none of these pink-ribboned products has angered as many breast cancer survivors as the new fragrance.
The vast majority of breast cancer cases occur in women, so it’s only natural that the components of and context for public-health ads about the disease have a connection to that gender.
A study recently published by the Journal of Marketing Research, however, questions whether that’s always the best way to go. A series of six experiments demonstrates, the authors say, that emphasizing gender in those ads might actually lower a woman’s perceived risk for breast cancer, make her give less to gender-specific cancer charities and even make her less likely to remember the ads. (Here’s the executive summary and here’s the abstract.)
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?
Title: Susan G. Komen for the Cure Isn’t Curing Anything
Author: Amy
Publication: Just West of Crunchy blog
Publication Date: June 3, 2011
Susan G. Komen for the Cure isn’t curing anything. This is an organization I used to really support. I have a history of breast cancer in my family and the two naturally met. But the more I’ve learned about Komen, the more upset I’ve become at the way their organization works.
This isn’t going to be an exhaustive list of everything I find to be wrong with Susan G. Komen for the Cure [Komen, herein]. I’m going to touch on a few of the more egregious points and some of the things I’ve learned most recently. A lot of people have rosy Pink glasses on when it comes to Komen; today, I’m asking you to suspend whatever you believe about this nonprofit and think critically about them. If you walk away still liking them, that’s fine. But I hope people will at least be open to the idea that this organization isn’t all it’s cracked up to be.
Title: It’s Just A Little Bottle of Perfume, Or Is It?
Author: Nancy Stordahl
Publication: Nancy’s Point blog
Publication Date: June 2, 2011
Sometimes those of us in the breast cancer blogosphere are accused of taking things too seriously and maybe we do at times; with our permanently altered viewpoint from cancer world, it’s hard sometimes not to. How can you possibly be upset about a tiny bottle of perfume you might wonder?
Last week when I heard about the latest “round of discontent,” I thought, really? It’s just a little bottle of perfume isn’t it? Is it really that big a deal? Well no, in and of itself, it isn’t such a big deal. It is just a little bottle of perfume and purchasing this particular fragrance and dabbing on a little won’t really matter. Or will it?
Nancy Brinker / Tavis Smiley Interview
Tavis Smiley interviews Nancy Brinker, CEO and founder of Susan G. Komen for the Cure. Original air date: October 1, 2010
The Colbert Report
Comedien, Stephen Colbert takes aim at Komen’s trademark lawsuits against smaller charities. Original air date January 3, 2011
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Quotable Quotes
"The scent of compassion and courage. The first official fragrance to benefit Susan G. Komen for the Cure®, Promise Me offers a unique opportunity to contribute to breast cancer research and recognize those who have been touched by the disease...
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The Komen organization imprints the logo on a multitude of products from t-shirts to eggs to perfume to their founder. To our knowledge Brinker has yet to have the running ribbon tattooed on her body.
KomenWatch 