Over the last two weeks, as Susan G. Komen for the Cure revoked funding for Planned Parenthood, then reversed itself, I watched through the scrim of something that, while less newsworthy, was, to me, no less significant: the death of Rachel Cheetham Moro, the 42-year-old writer of the blog Cancer Culture Chronicles…
Rachel had metastatic cancer — the kind that spreads beyond the breast. And guess what? It turns out that despite the money flowing to breast cancer charities — particularly Komen — the death rate among those with metastatic disease has not budged in 25 years. What’s more, the actual number of women (and men) who die of breast cancer today — about 40,000 annually — is greater than it was in the 1980s. That’s right: More people die now than did three decades ago. True, the overall breast cancer death rates — as a percentage of those diagnosed — have dropped, but that’s in part because mammography is really, really good at finding and diagnosing, for instance, DCIS, which means ductal carcinoma in situ. DCIS is Stage 0 cancer, which will probably never become invasive…
And so, even as pink ribbons have proliferated, even as breast cancer has become polite dinner table conversation, the actual lived experience of women with advanced disease — women like Rachel Cheetham Moro — has been pushed to the margins…
The Planned Parenthood debacle brought renewed attention to other controversies about Komen from recent years—like its “lawsuits for the cure” program that spent nearly $1 million suing groups like “cupcakes for the cure” and “kites for the cure” over their daring attempts to use the now-trademarked phrase “for the cure.” Critics also pointed to Komen’s relentless marketing of pink ribbon-themed products, including a Komen-branded perfume alleged to contain carcinogens, and pink buckets of fried chicken, a campaign that led one rival breast cancer advocacy group to ask, “what the cluck?”…
But these problems are minuscule compared to Komen’s biggest failing—its near outright denial of tumor biology…the notion that breast cancer is a uniformly progressive disease that starts small and only grows and spreads if you don’t stop it in time is flat out wrong. I call it breast cancer’s false narrative, and it’s a fairy tale that Komen has relentlessly perpetuated…
Komen isn’t wrong to encourage women to consider mammography. But they’re dead wrong to imply that “the key to surviving breast cancer” is “you” and the difference between a 98% survival rate and a 23% one is vigilance on the part of the victim. This message flies in the face of basic cancer biology…
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…
Title: Komen charity under microscope for funding, science
Author: Sharon Begley
Date: February 7, 2012
The Susan G. Komen for the Cure charity defines its mission as finding a cure for breast cancer. In recent years, however, it has cut by nearly half the proportion of fund-raising dollars it spends on grants to scientists working to understand the causes and develop effective new treatments for the disease…
Critics within the philanthropic and research communities in particular have raised questions over its scientific approach to some issues and how it spends the money it raises…
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?
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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.)
Title: Marketing Breast Cancer in America: What Role Should Corporate Sponsorship Play in Health Activism?
Author: Lisa B.
Publication Date: December 21, 2009
What would happen if corporate America no longer invested in breast cancer? The role of corporate marketing support for breast cancer activism has been criticized ever since corporate sponsorship began to visibly increase in the 1980s. Corporations that support breast cancer interest groups believe that the purpose of a cause-related marketing relationship is to associate their brand with funding for breast cancer research, education, screening, and treatment. But who determines whether a corporation involved in such an enterprise is beneficent, corrupt, or simply medically ineffective, intertwining useless marketing gimmicks with effective information about breast cancer treatment? Governmental oversight must play an important role as a guardian of public safety by evaluating the information underwritten by corporate sponsors for false claims. Failing stricter governmental regulation, the cause-related marketing relationships that developed in the breast cancer movement may begin to mirror the free-for-all market in other sectors of the medical economy, such as erectile dysfunction drugs, where the pharmaceutical companies provide most of the treatment information to the public.
The emotional significance of breast cancer as a women’s health issue has established a competitive market with large economic stakes for research, treatment, and screening equipment. Breast cancer affects 1 in 11 women, affects women in all demographic groups, and currently has a variable response to medical treatment. It kills 40,000 women a year in the United States and is the leading cause of death for women between the ages of 40 and 59. This may explain that although the current leading cause of death in U.S. women is heart disease, more money is raised per year for breast cancer research because breast cancer activists are able to tap into this strong emotional issue for women. Because breast cancer is so pervasive among women, the symbol of support for breast cancer awareness, the pink ribbon, has become ubiquitous in the United States. This visibility attracted the attention of medical corporations, such as DuPont and AstraZeneca Pharmaceuticals, who considered this a co-marketing opportunity, simultaneously marketing their brand to the public and their products to the medical profession. Breast cancer activists have worked together with corporations in the 1990s and 2000s to influence medical research, particularly emphasizing earlier cancer detection and less toxic therapies. Other non-medical corporations, such as Yoplait, have shown that co-marketing with the pink ribbon can be a successful strategy to improve their corporate image and visibility while increasing funding for breast cancer research.
Comments Off on Pink Ribbon Promises
Posted by IdaT on October 8, 2006
Title: Pink Ribbon Promises
Author: Stacie Stukin
Publication: Time Magazine
Publication Date: October 8, 2006
This past March, Barb Jarmoska and 21 other women over the age of 50 set out from San Diego on a cross-country bike trip to raise money for breast-cancer research. Their goal was to arrive in St. Augustine, Fla., in two months’ time after pedaling through eight states. Each woman paid for her own trip and picked her own breast-cancer charity. For Jarmoska, it was the perfect way to pay homage to two dear friends she had lost to the disease, while fulfilling a lifelong desire to bike across the U.S.
But when she began researching which charity to support, Jarmoska felt overwhelmed. Numerous organizations sponsored walks, runs and bike trips. Even more were pitching pink-ribbon products and promotions with a promise that a portion of sales would support a breast-cancer cause. Jarmoska was stunned by the profusion of pink cosmetics, jewelry, teddy bears, blush wines, blenders, candles and paper products. “I realized breast cancer had become the poster child of corporate cause-related marketing campaigns,” she says. “With so many companies involved, my suspicion was that the motive was not always entirely pure.”
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