Keeping our eyes and ears open…..

Category Archives: Communication

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.

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

Komen’s Wild Ride

Title: Komen’s Wild Ride

Author: Alicia C. Staley

Publication: wegoHealth blog

Publication Date: June 10, 2011

Dear Susan G. Komen for the Cure:

Stop. Just stop. I’ve reached the point where I’m embarrassed by you and all your branding efforts for the cure. I see tons of pink ribbons, plastered on everything from shampoo to lawn mowers and cat litter.  I’m beyond aware.  I’m frustrated.  I can no longer justify your breast cancer awareness campaigns to my friends that want to know why there’s no cure.  I’ve received more emails in the past week over at Awesome Cancer Survivor expressing exasperation at the breast cancer community than I care to count.  As a breast cancer survivor, I shouldn’t have to justify your behaviors.

When you launched your partnership with Kentucky Fried Chicken  (aka “Buckets for the Cure”), I excused your lapse of judgment.  I assumed it was a temporary slip, and you’d eventually focus your energies back on partnerships and alliances that aligned more closely with your stated goal of “For the Cure.”  You trumpeted the partnership, declaring KFC would make the largest one time donation of an estimated $8 million to Komen. The ultimate goal of the $8 million donation never materialized.  According to your own reports, you only took in $4.2 million.  Not pocket change by any stretch of the imagination, but only about half of what you were looking to grab. You are the self-proclaimed leader of the breast cancer community.  Where is your leadership?

Link to Full Article

Cause Bandits: How Would Your Nonprofit Respond?

Title: Cause Bandits: How Would Your Nonprofit Respond?

Author: Jen Price

Publication: Advancing Impact

Publication Date: June 7, 2011

There has been much controversy surrounding Susan G. Komen for the Cure recently. So much so, that the criticism has founded an organized movement.

People are joining together over “mounting concerns about Komen’s organizational leadershiptrademark feuds, corporate partnerships and branding activities, pinkwashinglimited successes, and unbalanced program allocations. A critical mass of concerned citizens, many of whom had supported Komen over the years, are now asking whether the ends justify the means.”

Link to Full Article

Enter the Komen Bandits — Racing With A Message for BC Mets

Title: Enter the Komen Bandits — Racing With A Message for BC Mets

Author: Gayle Sulik

Publication: Pink Ribbon Blues blog

Publication Date: June 4, 2011

This weekend marks the 22nd annual Susan G. Komen Global Race for the Cure® 5K at the National Mall in Washington, DC. Nearly 40,000 people participated and the event raised more than $5 million. Reports of the race festivities are awash with celebrity, festivity, performance, and unbridled enthusiasm.

Susan G. Komen for the Cure’s founder, Ambassador Nancy G. Brinker, “charged up the crowd, noting that the sea of pink making their way up the National Mall was a bold statement by this community that we will not rest until our promise to end breast cancer forever is fulfilled.” She went on to say that, “If my sister Suzy were here today, she would take joy in the inspiration you provide. She’d take pride that in a politically divided city, there is unity on this issue. She’d take comfort in the fact that hopes are high, and that a cure is near.”

SGK social media was all a twitter with live feeds from the race revealing a mood that was triumphant, proud, and promising while solidifying the message that Komen is responsible for progress.

Link to Full Article

Own Your Failures

Title: Own Your Failures

Author: Jen Price

Publication: Advancing Impact

Publication Date: October 5, 2010

Those of us in the nonprofit sector have been rocked by examples of what NOT to do lately. I won’t go in to details, but if you are interested in reading great posts and comments about mistakes, read about Komen’s cause marketing partnership with KFC, Komen suing other nonprofit organizations that use the term “for the cure” or the color pink and Komen’s inability to effectively thank donors.

I am not trying to pick on one organization. These are great examples we can learn from and use to strengthen the work of our own organizations.

The biggest mistake Komen made? They did not own the failures. They haven’t responded to any of the criticism.

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Can You Spare an Extra Ten Bucks, Sister?

Title: Can You Spare an Extra Ten Bucks, Sister?

Author: Unknown

Publication: Selfish Giving blog

Publication Date: September 30, 2010

Last week I got a thank you letter I really liked. This week my wife got a thank you letter she didn’t like. What was the difference?

Her thank you was for a Komen for the Cure run/walk she had participated in the previous weekend. My wife walked with a whole team of women, including a close friend of hers from work who has been fighting cancer for some time.

My wife was happy to walk and raised $400. Her team of five raised $2,500.

But when she read this email from Komen she didn’t feel appreciated. Although the subject line for the email said “Thank You!”, it felt thankless.

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