KomenWatch

Keeping our eyes and ears open…..

Tag Archives: organization

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

Susan G. Komen for the Cure® – No More Apologies!

Title:  Susan G. Komen for the Cure® – No More Apologies!

Author: Nancy Stordahl

Publication:  Nancy’s Point blog

Publication Date: August 12, 2011

There has been a lot of discussion recently in the blogosphere about Susan G. Komen for the Cure®. I believe the rumblings are starting to be heard. Now the question is will Komen begin to listen? Like I’ve always told my students, there is a huge difference between hearing and listening.

For the record, Komen describes itself as,

—the world’s largest and most progressive grassroots network of breast cancer survivors and activists – the only grassroots organization fighting to cure breast cancer at every stage, from the causes to the cures and the pain and anxiety of every moment in between.

Komen’s stated mission is:

to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to find the cures.

Like many bloggers, I’ve been thinking about this organization of late and how it seems to have failed in the above stated mission.

But this particular post isn’t really about that success or failure.

Mostly, what I want to address today is why I have felt so uncomfortable criticizing Komen in the past.

Link to Full Article

Tie a pink ribbon ’round that old deadly tumor.

Title: Tie a pink ribbon ’round that old deadly tumor.

Author: rjheart

Publication: Open Salon blog: Welcome to My World

Publication Date: April 10, 2011

The Susan G. Komen foundation was founded in 1982 following the death of Susan Komen, sister of Nancy Brinker. Nancy Brinker is the founder and CEO of one of the most powerful and profitable “non-profits” in the world. Susan Komen died after three years of fighting breast cancer. She was diagnosed at a time when little was known about this deadly disease. People would cross the street to avoid going near the 36 year old woman because of their fear that she was contagious.

Susan’s last years were spent in pain and fear. Radiation treatments and breast removal were her only paths of hope. She reached out to her fellow sufferers and died with the dream that no one would ever again suffer the way that she had. Her sister vowed to bring her dream to reality. Using her experience in marketing and the influence of her family’s wealth, she began to raise money for awareness and treatment of the disease that killed her sister and nearly took her own life.

In 1984, Nancy Brinker also detected a lump in her breast and demanded immediately that the doctors remove both her breasts. Following their removal, she was given chemotherapy and survived. The experience of watching her sister wither away and die had made her choice of aggressive treatment obvious. She then wrote a book detailing her experience and guiding other women to fight and to speak out.

1982 saw the death of Susan Komen and the birth of breast cancer awareness.

Here we are. It is 2011.

Link to Full Article

The Sad Truth About Susan G. Komen for the Cure

Title: The Sad Truth About Susan G. Komen for the Cure

Author: Unknown

Publication: GYMR blog

Publication Date: April 8, 2011

This is Nancy Brinker, the founder and CEO of Susan G. Komen for the Cure, and former Chief of Protocol of the United States under George W. Bush. Nancy founded Susan G. Komen after the too-early death of her sister Susan. Headquartered in Dallas, Texas, the foundation is, per its mission statement, “dedicated to education and research about causes, treatment, and the search for a cure.”
Narcissism aside, nothing inherently evil here. And — we digress — Susan G. Komen IS an organization that puts millions upon millions of dollars toward fighting breast cancer.
But breast cancer is not as simple as yes or no. Some women get it once, get treated and never get it again. Others die quickly. And others suffer, struggle, survive, live for years in/with fear.
Nancy knows that:
“Because I think that, you know, so many people died from diseases they didn’t know about, but also it has increased and I think people are seriously, like us, like our organization, looking at causes and looking at ways to prevent it.”
Huh??? Nancy continues:
“There’s one thing we know. We can’t afford — and no one in the world can afford — to treat all the late-stage cancer. The world is aging and then there are other factors. There are hereditary factors. Who knows?”

Link to Full Article

Muckety Listing: Susan G. Komen for the Cure

Title: Muckety Listing: Susan G. Komen for the Cure

Author: Muckety

Publication: Muckety

Publication Date: Accessed April 4,  2011

Welcome to the place for tracking people and organizations with power and influence!

Muckety is an award-winning web site and information/technology company, honored for outstanding use of digital technologies. We publish maps and related news stories, and we provide mapping technology and data to other companies.

How are we different?

Unlike most social networking sites, our data is not user contributed. This may seem contrary to the overall trend of online databases, and it is.

We specialize in the paths of influence – encompassing government, business and nonprofit affiliations. But we also show connections users might omit from their own public profiles, including family members, political involvement, lobbying activity and criminal charges.

Muckety Listings for:

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/.

Komen’s Leadership in Question

Title: Komen’s Leadership in Question

Author: Gayle Sulik

Publication: Pink Ribbon Blues blog

Publication Date:

“The fury over Komen’s official responses to the trademark debacle continues to mount as individuals, breast cancer advocates, journalists, bloggers, and the diagnosed raise numerous questions about Komen’s trademark policing, hubris, and financial allocations. Despite an ambiguous admission on the Nightly News with Brian Williams that Komen may have been “overzealous” in its trademark protection and that the organization is “not perfect,” Komen maintains its official response that it sees trademark protection as “responsible stewardship” of donor funds.

For many, the Komen trademark feuds have been a touchstone for larger concerns about the commercialization of breast cancer, the festive environment surrounding the cause, the incremental advancements in modern medicine that make ‘cure’ an elusive term, the need for basic scientific research and increased attention to causation and primary prevention, and the dominion of one organization within a broad and diverse breast cancer movement. The need to “cure” more ills than breast cancer. This is not to say that the Komen organization hasn’t done some good.”

Link to Full Article

Susan G. Komen for the Cure® Sells Out the Pink to Get the Green

Title: Susan G. Komen for the Cure® Sells Out the Pink to Get the Green

Author: Gayle Sulik

Publication: Pink Ribbon Blues blog

Publication Date: January 14, 2011

“In response to increased publicity surrounding Susan G. Komen for the Cure’s questionable trademark and marketing activities, the organization published an official statement on its website, titled: “Susan G. Komen for the Cure® Sees Trademark Protection as Responsible Stewardship of Donor Funds.”

According to the statement, Susan G. Komen for the Cure® has never sued other charities or put other non-profits out of business, and the organization does not have plans to do so in the future. Apparently knitters, sandwich makers, and kite fliers who want to raise money for breast cancer or other causes should breathe easier now! Of course, there are many ways to squeeze out organizations, large and small, and Komen’s high profile, clout, and overflowing coffers work in conjunction with legal teams, cease and desist orders, and polite suggestions to encourage a political and economic climate in which only the wealthiest survive.”

Link to Full Article

The Problem With Pink-Ribbon Drives (Abstract Only)

ABSTRACT ONLY

Title: The Problem With Pink-Ribbon Drives

Author/Byline:  Caroline Bermudez

Publication: Chronicle of Philanthropy

Publication Date: November 28, 2010

A medical sociologist says that pink-ribbon drives to promote attention to breast cancer are not effective in combating the disease.

Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health

By Gayle A. Sulik

Gayle A. Sulik, a medical sociologist, says that pink-ribbon drives to promote attention to breast cancer are not effective in combating the disease, but instead divert attention way from the fact that the ailment is a public-health concern.

Based on eight years of observations, analysis of breast-cancer advertisements and awareness campaigns, and interviews with hundreds of breast-cancer experts, Ms. Sulik concludes that for all the coverage breast cancer receives, a cure still remains elusive and jumps in survival rates have been modest at best.

She is particularly critical of the charity Susan G. Komen for the Cure, which organizes walks and races that draw thousands of participants.

ABSTRACT ONLY

Ethical Lapse Costs Susan G. Komen Goodwill, Credibility

Title: Ethical Lapse Costs Susan G. Komen Goodwill, Credibility

Author: Geri Stengel

Publication: Business Ethics

Publication Date: May 9, 2010

“I guess you could say “God will get you!” when you cross ethical lines.

Susan G. Komen for the Cure has certainly reaped its reward for carelessness (greed?) when choosing a cause-marketing partner.

The blogsphere has been running pink as the good will drains out of SGK’s partnership with KFC, viewed as a purveyor of obesity and carcinogens.

The basic benefit of cause-marketing — good publicity for both partners — certainly hasn’t materialized. The cancer-causing contents of KFC chicken are being widely publicized and the brand of SGK has been tarnished.”

Link to Full Article