KomenWatch

Keeping our eyes and ears open…..

Agenda for the Future

What Could the Future of Breast Cancer Advocacy Look Like?

  • Organizations focusing on breast cancer, other cancers, and public health work together to form reasonable partnerships, leverage available resources, and reduce duplication of services.

  • Organizations use evidence-based information along with the highest professional and ethical standards to develop programs and increase their sustainability and capacity.

  • Organizations systematically and continuously evaluate their programs for efficacy, efficiency, and relevance.

  • Organizations are clear and transparent about whose interests they represent.

  • Any organization working toward the eradication of cancer does not (directly or indirectly) endorse, partner with, or accept donations from any entity that contributes to the production or distribution of known or suspected carcinogens.

  • Any organization working toward the eradication of cancer does not (directly or indirectly) accept donations (monetary or in-kind) from any entity that profits from the diagnosis or treatment of cancer.

  • Research into cancer causation, prevention, detection, treatment, and aftercare is coordinated and, at times, collaborative to foster the greatest impact. Organizations that fund research work within this structure, with clear, evidence-based criteria for funding decisions.

What is Komen’s Role in this Future?

  • Remember that Susan G. Komen for the Cure is a nonprofit organization, not a nonprofit corporation as Nancy Brinker refers to it. Act according to sound ethical principles befitting of a nonprofit.

  • Cease partnerships with corporate sponsors who engage in “pinkwashing.”

  • Stop strong-arming other organizations over the phrase “for the cure.” Trademark or not, Komen does not own this common language. Support your sister organizations.

  • Act in accordance with the mission of being “for the cure” and make research the top funding priority.

  • Stop producing messaging and education programs that promote simplistic early detection and lifestyle prevention measures. Early detection is a misnomer for many cancers, and it is no guarantee of a cure.

  • Partner with other breast cancer organizations to produce and disseminate evidence-based breast cancer awareness and education resources. Doing so will result in costs savings and economic synergies.

  • Too many precious resources are being wasted on holding grandscale fundraising events. Consider the power of social media and other original ideas in your fundraising efforts.

  • Prioritize funding and advocate for real prevention by commissioning studies on environmental factors, and by lobbying congress for legislation to stop corporate polluting and the manufacturing and marketing of known carcinogens.

  • Fund research studies that encompass 10-year, 20-year, 30-year periods to gain a better understanding of survival and mortality statistics for ALL stages of disease. Scientists know that five-year survival statistics are inaccurate representations of breast cancer survivorship.

  • Recognize the needs of women living with metastatic breast cancer; prioritize research funding in this area.

  • Expand your vision to include other women’s cancers, particularly those that are known or suspected to be associated with the breast cancer genes (e.g. ovarian and colon cancers), those that can result from breast cancer treatments (e.g., uterine cancer, leukemia, and lymphomas), and those with similar causation.

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The powerful problem of pink

Title: The powerful problem of pink; Victoria’s branding secret may be colour-based, but when it backfires, it isn’t pretty. Just ask Lego

Authors: Francine Kopun

Publication: The Toronto Star

Publication Date: February 14, 2012

…KFC had a larger public relations problem on its hands in 2010, when it teamed up with Susan G. Komen for the Cure, the organization behind the pink ribbon campaign for breast cancer awareness.

During the campaign, KFC changed the colour of its iconic bucket from red to pink, temporarily lit its headquarters pink, and repainted a Louisville restaurant. The Colonel Sanders look-alike who represents the company traded in his white suit for a pink version to complete the brand’s temporary transformation.

The result was the single largest donation in the history of Susan G. Komen for the Cure – $4.2-million raised by 5,000 restaurants in the United States. The funds were used for local breast cancer education, screening and treatment, but the campaign provoked ridicule and lingering criticism.

“Raising money in the name of breast cancer research, while engaged in a partnership with a corporation that may very well be contributing to this disease, is pink-washing in its most egregious form,” according to Think Before You Pink, an organization launched in 2002 due to concerns about the growing number of pink ribbon products on the market.

It accused KFC of targeting low-income communities with a product containing carcinogens and fats linked to heart disease and breast cancer.

The campaign was not repeated…

Link to Full Article

Where’s the Advocacy, Komen?

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.

Citation for this editorial: KomenWatch. (2011, July 26). Where’s The Advocacy Komen? Retrieved from http://www.komenwatch.org/.

The Scent of Exploitation

We learned recently of yet another corporate partnership at the nonprofit corporation, Susan G. Komen for the Cure ®. This one is with a consumer products and distribution company named TPR Holdings LLC.

Together, SGK and TPR will not find a cure for breast cancer, but they’ll do the next best thing; develop and launch a new product line called Promise Me, the first and only proprietary fragrance developed with Susan G. Komen for the Cure®.

The Promise Me website is beautifully designed to market the fragrance and related products. Against a sensual light plum background, the copy describing the new perfume is alluring:

New word alert: floriental. Perhaps a combination of floral and oriental? Not that it matters. The important thing is to tantalize women consumers with sophisticated femininity and a just a hint of sensuality and social conscience. Readers can take a leisurely scroll over interactive images of orchids and pink peonies to learn what the special perfume ingredients are meant to signify. Providing a sense of intimacy, we even hear a voice (perhaps that of perfumer Jean Claude Delville…) who reads the pop-up text for us.

The advertisement oozes inspiration and exquisite attention to detail all the way to the perfume bottle marked with SGK’s signature (and trademarked) running ribbon.

Designer Chad Lavigne was inspired by the iconic breast cancer ribbon which he weaved into the detail of the glass bottle. A beautiful collectible item, special attention to detail was paid to every facet of the design- from the tiers of signature pink to the reflective gold finishes.

Well-known French perfumer Jean Claude Delville speaks directly to the reader about the significance of the Promise Me fragrance.

Color us inspired! A fragrance designed to evoke the emotions of positive energy, hope and love! And a fragrance designed to generate sales for TPR Holdings and boost Komen’s public image and revenue stream. We learn on the “Susan G. Komen for the Cure ®” page that, “TPR Holdings will guarantee a minimum donation of $1,000,000 to Komen for breast cancer research, education, screening and treatment.” But it doesn’t stop there. Consumers who purchase the Promise Me fragrance will also get a free gift of Nancy Brinker’s new book, conveniently with the same name.

Promise Me tells the story of two sisters, Nancy G. Brinker and Susan G. Komen, their loving bond from childhood through adulthood, the cancer that took one sister’s life and threatened the other’s, and the promise between them that launched the global breast cancer movement, transforming and saving the lives of millions of women.

Komen’s continued forays into the world of corporate partnerships are looking more and more like the activities of a for-profit corporation interested in staying in business for the long haul. The attention paid to branding; the continued promotion of Komen and it’s founder, Nancy Brinker as the self-styled leader of the global breast cancer movement; the plethora of pink products ranging from dish towels to sporting goods to housecleaning items to food and beverage products to hardware and now, to perfume and cosmetics suggests that the SGK brand – the mother of all cause-related marketing brands – is now being sold as a pink ribbon lifestyle.

The breast cancer cause has moved beyond the oncology clinics, beyond the chemotherapy infusion rooms, beyond the radiation suites, beyond the surgical wards, beyond the shattered lives and grave markers of the fallen to be atomized into a fragrance, encapsulated in a pretty pink ribbon bottle — and all for the bargain price of $59.00 including the “free” copy of Nancy G. Brinker’s homage to her dead sister, Promise Me, the book.

But we shouldn’t be surprised at this latest iteration of Komen’s flashy marketing strategies. In a 2003 interview with Susan Orenstein of CNN Money, the head of sponsorships at Komen, Cindy Schneible, admitted openly:

“We’re sensitive to the fact that this is a marketing relationship, not a philanthropic relationship.”

A peek into some of Komen’s corporate sponsorship materials reveals the SGK marketing philosophy in greater detail. In describing the benefits to becoming a corporate sponsor of their San Francisco Race event Komen’s brochure states;

Based on your level of sponsorship, your company may:

  • Receive high visibility before the event and on Race day
  • Reach thousands of decision makers and consumers in the 9 counties of the SF Bay Area through exposure on our website, eBlasts, race applications, posters and other materials
  • Test-market and showcase products
  • Build employee morale and company pride
  • Associate with one of the most renowned movements to fight breast cancer and align yourself with the largest and most progressive grassroots network of breast cancer survivors
  • Increase company and brand integrity by partnering with a cause that impacts millions of people locally and globally
  • Retain and increase customer and client loyalty – consumers have a more positive image of a company associated with a good cause

The message is clear. Piggybacking off of Komen’s branded pink ribbon cause is an effective form of advertising for any company that is willing to pay the price of admission: a large donation to Komen and the mandatory perpetuation of the SGK story-line.

Geoff Livingston, noted social enterprise strategist and author of Now Is Gone stated recently on his blog that money-grabbing strategies such as Komen’s actually run counter  to their mission:

Non-profits are not in business to make money. They are a business to be sure, but unlike a for-profit, which seeks to dominate markets and yield profits, a cause or social enterprise seeks to provide a solution. When a for-profit business is successful, it keeps its doors open for years and expands and keeps looking for more market share. When a non-profit is successful it should close its doors because its business – or mission – has been completed.

Where’s Komen’s plan to complete its mission and close its doors? How does creating a new product line to sell $59.00 bottles of signature perfume provide a solution to the problem of breast cancer? Livingston asks, and rightly so:

Are you competing just to raise the most money? Competing in the sense that a cause seeks to beat out its competition helps no one. It actually hurts the cause space by creating distractions and wasted resources.

Komen’s words and actions speak loudly: A pseudo-corporation intent on keeping itself in business by marketing pink lifestyle products under the global brand of breast cancer. Don’t miss the next SGK commercial on the Home Shopping Network; Ambassador Nancy G. Brinker To Appear Live on HSN To Debut Exclusive New Promise Me Gift Set Benefiting Susan G. Komen for the Cure®. The scent of inspiration? More like the stench of breast cancer marketing.

KomenWatch grants full permission to republish our editorials in their entirety, with proper citation and link.

Citation for this editorial: KomenWatch. (2011, May 18). The Scent of Exploitation. Retrieved from http://www.komenwatch.org/.

Komen Contradictions: Cure Vs. Research

Leaders magazine, a “worldwide magazine that deals with the broad range of leadership thoughts and visions of the world’s most influential people,” recently interviewed Nancy Brinker, Founder and Chief Executive Officer of Susan G. Komen for the Cure. In the article titled “A Large Mission” Brinker discussed Komen’s work, progress, and intentions for the future.

The article began in the usual way, reminding readers of Nancy’s famous promise to her dying sister Suzy, a promise to do whatever she could to end breast cancer. Then she stressed, as she often does, that Suzy had faced breast cancer at a time when the social climate surrounding breast cancer was one of “invisible silence.” It’s true that the C word was only ever murmured with hushed tones if at all, and breast cancer was then a silent killer. Brinker stressed that she wanted to “end the shame and hopelessness” caused by breast cancer. In articulating her desire to do something to fulfill her promise to her sister, she stated further;

We saw the weaknesses in the system. People didn’t know how little money was going to research at the time – only $20 to $30 million of support for breast cancer research was coming to the National Cancer Institute, which was fairly new at the time.

With this statement readers learn (or remember) that prior to the rapid expansion of breast cancer advocacy in the late 1980s and early 1990s there had been a dearth of breast cancer research. Nixon’s war on cancer had only been declared in 1971 and the National Cancer Institute was still an immature entity at the time of Komen’s founding in 1982.

Brinker’s statement about research might even lead readers to assume that research was a major impetus behind its stated mission, to “cure” breast cancer. After all, how might a disease be cured? Treatment, and the research used to find, evaluate, and improve treatment. Accurate diagnostics, and the research used to develop, test, and refine diagnostics. Prevention, and the research used to locate the causes of a disease, learn its pathways, and prevent it from occurring in the first place. Education, based on the evidence amassed from bodies of systematic research. Cure relies on research. There’s no reasonable way around it.

Unfortunately, something odd happened on the way to the cure. After thirty years in the nonprofit foundation business, research is no longer the focal point if it ever really was. In fact, today Brinker frequently argues that research is a “helpful” component but not the pathway to eradication. Nancy states;

It’s always helpful to support research, but it’s not enough to do that; if you want to eradicate death by disease, you have to involve every sector of society…To that end, we have more than 120 affiliates throughout America, all of whom are grassroots based organizations who leave 75 percent of what they raise in their communities, focused on low resource people. So they provide education, screening, and some treatment, while 25 percent of what they raise goes back into our national grant pool.

Education. Screening. Some treatment. And a national grant pool. We’re baffled. In 1982 research seemed to be a key mechanism to finding a cure. The National Breast Cancer Coalition continues to prioritize research funding through the Department of Defense and has set a new deadline to reorient research efforts in a coordinated way. Community-based organizations around the nation have formed their own partnerships with researchers and clinics because there isn’t enough research being done on a federal level. Yet 25 percent of monies raised by affiliates are sent back to Komen central allegedly for research.

Okay, how does it add up?

As one of our archived articles reports succinctly from Komen’s own audited financial statements, Komen’s research program in 2010 comprised only 19% of the organization’s total resources. The remainder went  to education (37%), screening (12%), some treatment (5%), fundraising and other general overhead (27%). Research clearly is not the priority for the organization, and Brinker brings this point home in the Leaders interview stating, “it isn’t useful to just fund research.” The pie chart below is a visual representation of where Komen’s commitments lie.

Program Services & Other Expenses 2010

Source: The Cancer Culture Chronicles blog

Okay, we get it Nancy. It isn’t useful to just fund research. That’s why it’s such a small part of Komen’s program budget. Brinker reiterates this point;

Today, knowing what we know, it isn’t useful to just fund research; to say you’re helping one woman at a time is not enough. You need to fund the research, but also to make sure that as you’re doing that, the clinical changes are occurring.

Is ensuring clinical change part of Komen’s program allocations? Where is that? How is it accomplished?

At the same time that Nancy Brinker and Komen clearly perceive research to be a minor part of curing breast cancer, the leadership fights over ownership of the trademarked phrase “for the cure” [i.e., see the articles under the category lawsuits] and consistently talks about its strong commitment to research over the years despite the fact that they believe it to be a minor part of eradicating the disease.

Just this week Komen issued another effusive press release in which Komen announced that it will fund $55M toward research grants at 56 institutions across the United States and internationally, with $3M granted to support various patient support conferences and programs in 2011.

Susan G. Komen for the Cure® Commits Nearly $58 Million in 2011 to Tackle Toughest Issues with New, Innovative Approaches to Breast Cancer Research

Global Breast Cancer Leader Focuses on Development of Breast Cancer Vaccine, Creating More Effective Therapies and Reducing Disparities in Treatments for African Americans and Other Ethnic Groups

That’s interesting. It sounds like a lot of money too. Note that $58M is a decrease of about $17M from last year’s research allocation. Why the decline in research funding? Komen had record revenues in 2010 of $389M. Maybe research is getting less and less important to finding a cure for breast cancer. At a whopping $58M, only 15 percent of Komen’s resources for 2010 were allocated to research the following year.

FIFTEEN PERCENT. FIFTEEN PERCENT. FIFTEEN PERCENT. FIFTEEN PERCENT.

Yet, the number ringing in our ears from Brinker’s regular statements about the “national grant pool” is that 25 percent of money raised from affiliates goes to research. Unfortunately, that’s 25 percent of a different number altogether. The Komen shell game plays on as Brinker herself touts the organization’s funding of cutting-edge research. She states,

Our goal at Komen is to fund research with the greatest potential to make a difference and save lives in the shortest period of time. That means putting our dollars toward cutting-edge research that is high-risk, with potentially huge rewards.

Okay, we’re baffled again. If research is not Komen’s priority when it comes to funding, how can the organization expect to “make a difference and save lives in the shortest period of time.” High risk research could potentially result in some great finding that moves the state of science forward in such a profound way that cure is just around the corner. Maybe. But that’s not how medical research has worked in the past. Science moves in fits and starts. Incremental at best. Breakthroughs happen, sure. Wouldn’t Komen increase the odds of breakthroughs in science if it funded more research?

And what does Brinker mean by the “shortest period of time?” How exactly is that to be measured? Someone diagnosed with stage 4 breast cancer is likely to want to see the shortest period of time as sometime about…NOW. That’s unlikely, we admit. Will it happen next year? In ten years? Should we wait another thirty years and keep throwing pink parties in the meantime to celebrate minor successes? When asked by Leaders whether she felt we were any closer to finding a cure, Nancy Brinker said,

I believe we’re about halfway there. For 20 years, most of our research funding went to cancer biology. Now we’re focusing only on taking that biology and moving it toward a translational component.

Okay, 20 years. Is that the “shortest period of time?” What does it mean to be halfway to a cure anyway?

Time is important to a cancer patient. Ten years or twenty years makes a huge difference. It’s important to researchers and physicians too who want to do the best for their patients. Treat them well. Give them hope for a future. It’s not nice to throw around time frames without a clear plan to back it up. And what does Nancy mean when she goes on to say that,

The board asked me to take over as CEO to shape and fashion the organization because we’re all working on the 2020 plan…..

What is the 2020 plan? That’s ten years from now. Clock ticking. Is she referring to the the National Breast Cancer Coalition’s 2020 Deadline, the campaign oriented to eradicating breast cancer by 2020? Or does Komen have it’s own 2020 plan?

We really hope Nancy will tell us WHEN we can expect to “end breast cancer forever,” and how Komen will achieve this lofty goal without making research the priority.

KomenWatch grants full permission to republish our editorials in their entirety, with proper citation and link.

Citation for this editorial: KomenWatch. (2011, April 15). Komen Contradictions: Cure Vs. Research. Retrieved from http://www.komenwatch.org/.

What We Still Don’t See

Video: “What You Won’t See”

Starring: Nancy Brinker, CEO and Founder of Susan G. Komen for the Cure®

Date: June 23, 2010

Youtube videos have become the TV commercials of the digital age. This 32-second video clip of Nancy Brinker advertising the “behind-the-scenes” work of the Komen foundation is essentially the same thing. This particular clip represents something new for Komen in that it does not mention a promise to a dying sister and instead acknowledges the public visibility of Komen “t-shirts” and the relative invisibility of the inner workings of the organization. Brinker states that, people don’t see Komen’s hundreds of research grants, thousands of free screenings for low-income women, and millions of volunteers working [on something unspecified] late into the night all with the hope of someday making breast cancer itself invisible.

Interesting commentary given the numerous critiques and concerns raised in recent years about: Komen’s relatively small percentage research allocations; superficial approach to breast cancer education and awareness; and obsession with branding, corporate partnerships, and trademark issues. Could these concerns be the spark for Brinker’s half-minute response?

After decades of being seemingly untouchable, Komen is on the defensive. The organization has refocused its public relations exercises, cleaned its website, and made public statements like this one from Brinker. Unfortunately, there have been no in-depth responses to the valid concerns that continue to be raised about the organization’s:

  • misrepresentation of the realities of the disease
  • skewed program allocations
  • ongoing misinformation about the role of mammograms and “awareness” as keys to the eradication of the disease
  • lack of ethical review processes concerning corporate contributions and “pinkwashing”
  • failure to cooperate with other breast cancer organizations

If Komen’s strategies have not reduced breast cancer incidence, rates of recurrence, or the number of deaths from metastatic disease, how will these same strategies work to “end breast cancer forever?” They won’t. They will only bring in money, pretty up the disease, create entertaining past-times for consumers, alienate the diagnosed who don’t fit Komen’s pretty pink model, divert resources from other organizations and research priorities, and yes, fortify the t-shirt industry. They won’t end the disease no matter how many commercials Nancy Brinker makes.

There’s still so much we still don’t see.

KomenWatch grants full permission to republish our editorials in their entirety, with proper citation and link.

Citation for this editorial: KomenWatch. (2011, April 1). What We Still Don’t See. Retrieved from http://www.komenwatch.org/.

I Will Not Be Pinkwashed: Komen’s Race is for Money, Not the Cure

Title: I Will Not Be Pinkwashed: Komen’s Race is for Money, Not the Cure

Author: Dr. Mercola

Publication: Food Consumer

Publication Date:  February 22, 2012

“The multimillion-dollar company behind all those pink “breast cancer awareness” ribbons — the Susan G. Komen Foundation – uses less than a dime of each dollar to actually look for a breast cancer cure, as promised.

Plastering pink ribbons on every conceivable product has much more to do with raising awareness of, and money for, the Komen Foundation than it does curing breast cancer; pink ribbon campaigns are commonly used on products that may contribute to cancer, such as fried chicken and cosmetics that contain cancer-causing ingredients

It’s reported that the Komen Foundation owns stock in several pharmaceutical companies, including AstraZeneca, the maker of tamoxifen, a cancer drug that is actually classified as a human carcinogen by both the World Health Organization and the American Cancer Society.

In the case of many large cancer charities, your money will go toward research to create often-toxic and sometimes deadly cancer drugs, questionable screening programs like mammography, and into the bank accounts of its numerous well-paid executives — all while the real underlying causes continue to be ignored or actively concealed.”

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How Komen Became a Political Tool

Title:  How Komen Became a Tool

Author:   William Saletan

Publication: Slate.com

Original publication date: February 7, 2012

Karen Handel has resigned from the Komen foundation. Handel, a pro-lifer who was blamed by insiders for the foundation’s decision to defund Planned Parenthood, says the decision was driven by Komen’s need to avoid controversy, not by politics. But you can’t have one without the other. If you refuse to fund organizations embroiled in controversy, you invite their enemies to make them controversial. In so doing, you make yourself political.

Link to full article.

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

Nancy Brinker: The steely force in the Komen controversy

Title: The steely force in the Komen controversy

Author: Monica Hesse

Publication:  The Washington Post

Date: February 15, 2012

…For three decades, the relentless force of Nancy Brinker’s personality has been inextricably tied to Susan G. Komen for the Cure, the behemoth she created in memory of her elder sister, who died of cancer at age 36. She has dedicated her life to it. She has pinned her ambitions on it…

Monday, amid the Planned Parenthood funding controversy that arose this month, the editor of industry publication the NonProfit Times called for Brinker’s resignation. Last week, a former board member of a Komen New York affiliate requested the same, illustrating the symbiosis between woman and mission. It’s not clear what role Brinker played in the initial choice to defund Planned Parenthood and the reversal of that decision. Komen board members, including Brinker’s son, have not returned calls for comment…

Brinker, 65, declined, through a publicist, to comment for this article. “Decline” is an odd verb to follow “Nancy Brinker.” In the past, the woman who turned her philanthropy into a household brand hasn’t seemed inclined to decline much of anything…

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Moving beyond pink ribbons

Title: Moving beyond pink ribbons

Author: Peggy Orenstein

Publication:  Los Angeles Times

Date: February 15, 2012

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…

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Abortion and birth control mobilize the masses

Title: Abortion and birth control mobilize the masses

Author: Sonia Verma

Publication:  The Globe and Mail (Canada)

Date: February 15, 2012

First, there was the uproar that followed a decision by the Susan G. Komen for the Cure foundation to cut off funding to Planned Parenthood. Then, U.S. President Barack Obama found himself fending off a fresh outcry over a new rule that would require religiously affiliated hospitals to provide free contraceptives…

The decision by the cancer charity to reverse an earlier decision to sever its funding to Planned Parenthood signals to some that the American people have had enough of the debate. Politico.com predicts the backlash will become the “textbook case on the political power of social media.” Far from settling the abortion debate, however, tools such as Twitter and Facebook appear poised to amplify it in other ways

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Nancy Brinker’s Lavish Spending, Off-Putting Brittleness Puts Komen’s Future in Jeopardy

Title: Nancy Brinker’s Lavish Spending, Off-Putting Brittleness Puts Komen’s Future in Jeopardy

Author: Erin Gloria Ryan

Publication:  Jezebel

Date: February 13, 2012

In the last three weeks, the reputation of Susan G. Komen for the Cure has been threatened by a scandal that has uncovered some uncomfortable truths about the behind the scenes in the world of Professional Breast Cancer Awareness. Although the organization has given the media the “move along, nothing to see here” speech, it appears that Komen CEO Nancy Brinker’s lavish spending is worthy of scrutiny. Plus, apparently she’s really weird to work for.

According to The Daily Beast‘s Abigail Pesta, between June 2007 and January 2009, when Brinker was employed full-time with the US State Department during the Bush administration, she billed Komen for $133,507 in expenses…

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The re-energised US left has much to teach its dismal European counterparts

Title: The re-energised US left has much to teach its dismal European counterparts

Author: Adam Price

Publication:  The Guardian (London)

Date: February 13, 2012

… The most recent progressive home-run – the high-profile reversal by the cancer charity Susan G. Komen of its decision to de-fund the abortion advice charity Planned Parenthood (imagine Marie Curie doing battle with Marie Stopes) – has followed a familiar pattern of Twitter-enabled people power. In what politico.com has predicted will become the “textbook case on the political power of social media”, Komen executives were clearly overwhelmed by a half-a-million-a-day tweet tsunami, 80 to 1 against the decision, that engulfed them.

The killing off of the internet censorship bills Sopa and Pipa in January, despite big-battalion backing by the entertainment industry, and Bank of America’s binning of a proposal to charge for debit-card usage at the height of the Occupy Wall Street protests, were similarly internet-fuelled successes. The US left, it seems, has gone from retreat to re-tweet in just a few short years.

The progressive revival may be tech-enabled, but it’s far from tech-driven. The real social web these movements have created is a web of values, a vision that somehow connects with people at an emotional level, joining the dots between the personal and the political to create a sense of shared purpose – though often using new digital tools. It wasn’t a thinktank report – that staple tactic of the European left – that won the battle for Planned Parenthood but people like Linda from Las Vegas, a breast cancer survivor, who became an overnight YouTube sensation, when she literally bared her scars to demonstrate her anger at Komen’s small-mindedness…

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