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.
The widespread anger [about Komen’s decision to cut off financing for breast cancer screenings at Planned Parenthood] forced Komen to reverse its decision, and has certainly reinvigorated the women’s health movement. But the furor misses an important fact: Women have been led to believe that screening is the best prevention…
In reality, we still do not know what causes breast cancer, which means we really do not know how to prevent it, either. That has pushed us to focus on looking for cancers that are already there, a practice long based on the assumption that all cancers were the same, grew at a similar rate and were visible in the breast for a period of time before spreading… But decades later, the success rate of screening remains nearly the same, even with much better imaging: routine mammography screening results in a 15- to 20-percent decrease in mortality in women over age 50…
We must move breast cancer advocacy to the next level, beyond screening for cancers that are already there, even beyond the cure, to finding the cause…
Comments Off on Mammograms, diet & exercise will not end the epidemic
Posted by IdaT on September 13, 2011
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.
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 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?
KomenWatch grants full permission to republish our editorials in their entirety, with proper citation and link.
Comments Off on Are we too conscious of breast cancer?
Posted by IdaT on October 25, 2010
Title: Are we too conscious of breast cancer?
Author: H. Gilbert Welch
Publication: Charlotte Observer
Publication Date: October 25, 2010
I’m a physician who has had concerns about National Breast Cancer Awareness Month for years. They persist despite my wife’s breast cancer diagnosis a decade ago (she’s fine and shares my concerns).
I worry that the campaign has led women to be more fearful of breast cancer than they need be. The “1 in 8” or “1 in 9” statistic, in particular, serves as a poster child for how to exaggerate risk (both because it encompasses an entire lifetime and because it’s not the chance of dying, but of being diagnosed).
Equally troubling is the relentless promotion of screening mammography as the solution.
That the campaign’s principal founder is a manufacturer of breast cancer drugs doesn’t make me feel any better. Nor does the appearance of pink as a fall color in the National Football League.
Knowing my concerns, a reporter recently asked me, “What do you think women should be aware of?” Here’s my list:
Comments Off on Komen Opens DC Office (Abstract Only)
Posted by IdaT on February 20, 2010
Author/Byline: Gregg Sangillo and Sara Jerome
Publication: National Journal
Publication Date: February 20, 2010
Nancy Brinkerhas returned to the organization she founded many years ago. She is now chief executive officer of Susan G. Komen for the Cure, a group dedicated to defeating breast cancer and named for Brinker’s sister, who died of the disease in 1980 at age 36. Brinker formed the organization in 1982 after promising her sister that she would give her all to fighting breast cancer.
Of her return, Brinker says, “When I said that I would do everything that I could to help honor her promise, I didn’t mean it to be just for whatever time it took to get the first part of it done, or the second part of it done. But I wanted to do everything I could to eradicate this disease.” Komen for the Cure, which has been battling state budget cuts that it says could reduce women’s access to mammography and other health services, recently opened a D.C. office.
Last August,President Obamaawarded Brinker the Presidential Medal of Freedom, the country’s highest civilian honor, for her crusade against breast cancer. When the White House called to tell her about it, she says, “I dropped the phone and started crying.”
Brinker was chief of protocol in theGeorge W. BushState Department from 2007 to early 2009. Before that, she was U.S. ambassador to Hungary. Brinker left her ambassadorial post early to be closer to her dying father, but when she returned to the States, she was offered the U.S. protocol job. She was torn, but “[my father] said to me, ‘When your country calls on you, and your president asks you to do something, you do it, no matter what. There’s never a good time.’ ”
A native of Peoria, Ill., Brinker, who declined to give her age, graduated from the University of Illinois in the late 1960s, then moved to Dallas to enter the executive training program at Neiman Marcus. She was married to the lateNorman Brinker, a restaurant entrepreneur who ran Brinker International, the parent company of Chili’s and other restaurants.Eric Brinker, her son from a previous marriage, is a businessman and serves on Susan G. Komen’s board of directors.
As a veteran of the breast cancer awareness movement, Brinker says, “There’s a whole lot of issues and barriers in the way. Don’t get me wrong, it’s not simple. But if I didn’t see the enormous part that Susan G. Komen has played [in raising awareness], I wouldn’t feel nearly as hopeful. But I know what we’ve done, and I know where we’re going.”–Gregg Sangillo
Comments Off on WEESeeYou Fear-Mongers: Quit Using Women’s Health Issues As Tools To Gain Profit And Derail Health Care Reform!
Posted by IdaT on November 23, 2009
Title: WEESeeYou Fear-Mongers: Quit Using Women’s Health Issues As Tools To Gain Profit And Derail Health Care Reform!
Author: W.E.E. See You
Publication: W.E.E. See You
Publication Date: November 23, 2009
WHY THE CONFUSION??? FEAR MONGERING!
From the Wikipedia:
Fear mongering (or scaremongering) is the use of fear to influence the opinions and actions of others towards some specific end. The feared object or subject is sometimes exaggerated, and the pattern of fear mongering is usually one of repetition, in order to continuously reinforce the intended effects of this tactic, sometimes in the form of a vicious circle.[citation
At first it was the Stupak amendment regarding abortion, and now its mammograms, and cervical pap smears.
Question: Aren’t insurance companies already telling doctors and hospitals what they will/will not cover for their patients?
I think the outrage about the new Task Force recommendations is about scare tactics and attempts to derail health care. *I urge you to not only LOOK at who stands to lose monetarily from the new recommendations, but who gains from receiving truthful information about their health, about their very lives…
Comments Off on The trouble with mammograms
Posted by IdaT on August 17, 2009
Title: The trouble with mammograms
Author: Christie Aschwanden
Publication: Los Angeles Times
Publication Date: August 17, 2009
For years, breast cancer awareness campaigns have urged women over 40 to get a yearly mammogram. When women hesitate to comply, it’s often to avoid the discomfort of having their breasts squeezed or the fear of getting called back for more tests, even if it turns out there’s no cancer.
But screening poses another downside: A routine mammogram can find cancers that would never have become life-threatening, subjecting women to painful and toxic treatments they never actually needed.
A new study calculates that this is just what happens in as many as one in every three breast cancers diagnosed by a screening mammogram. That research, published July 9 in the British Medical Journal, comes on the heels of several other studies suggesting that some breast cancers found on mammograms would naturally have regressed on their own without treatment.
The studies don’t mean that women should abandon mammography, most experts say. But some think it’s time to reconsider the way that mammogram screening is done.
Comments Off on CONFRONTING CANCER; Advocates Strive to Defeat Cancer but Disagree on Methods
Posted by IdaT on April 9, 2002
Title: CONFRONTING CANCER; Advocates Strive to Defeat Cancer but Disagree on Methods
Author: Sheryl Gay Stolberg
Publication: New York Times
Publication Date: April 9, 2002
When senators convened a hearing in February on the effectiveness of mammograms, it was only natural that they would call Fran Visco to testify.
At 54, Ms. Visco, president of the National Breast Cancer Coalition, is widely regarded as Washington’s most powerful advocate for women with the disease. She has almost single-handedly persuaded lawmakers to appropriate millions for research. To do otherwise would be political suicide, they have learned from Ms. Visco and her vocal coalition of more than 600 member organizations and 70,000 people.
”For legislators,” Joann Schellenbach, a longtime official of the American Cancer Society, said, ”Fran is the spokeswoman for what they see as the advocacy community.”
But on mammography, there is little community among the advocates. Most embrace the government’s recommendation that all women older than 40 undergo routine screening. But not Ms. Visco. She and her coalition advise women to study the benefits and risks of screening and then decide for themselves.
KomenWatch Grants Full Permission to Republish KW Editorials in their Entirety, with Proper Citations and Links. Editorials Include Information on How to Cite!
"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...