How Susan G. Komen for the Cure affects other cancer non-profits

by Gayle A. Sulik, PhD

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.

When the National Alliance of Breast Cancer Organizations (NABCO) closed its doors after 18 years of operation, it was because the organization did not want to give priority to fundraising over program delivery. The network of almost 400 organizations, which included advocates, institutions, and healthcare providers, provided labor-intensive programs such as referral and case management that did not have the same allure as the publicity-driven fundraising campaigns that are so appealing to sponsors. Ironically, Komen founder Nancy Brinker was also a founding member of NABCO, along with journalist Rose Kushner who also helped to establish the National Women’s Health Network, Diane Blum of Cancer Care, and Ruth Spear who was a patient and author living in New York. When NABCO closed, Komen was one of 12 nonprofit cancer and health organizations to receive non-exclusive rights to NABCO’s educational materials at no cost.

This is not to suggest that Komen played a direct role in the closing of NABCO, or that NABCO should have acted differently. The point is that decision upon decision, action upon action, organizations shape the climate in which other organizations operate. NABCO refused to perpetuate itself by catering to fundraising interests at the same time that Komen was ramping up its cause-marketing and corporate partnerships. Three years later, Komen solidified its brand with a name change and new logo, and in the current year the organization has garnered more corporate partnerships than ever. The financial incentives have taken on a life of their own. If they hadn’t, we wouldn’t be quibbling over trademarks and pink buckets of fried chicken.

Komen’s reputation in some circles, especially among key stakeholders in business and medicine, appears to be beyond reproach. But reputations involve more than financial portfolios, and Komen’s domineering actions against other charities (whether they move forward to an official legal objection or not) demand a solid explanation.

The public didn’t get one. But Komen’s official statement did make some clarifications, such as the number of legal oppositions and objections filed against other entities since its founding, the total amount for legal expenses reported in the most recent financial statement, and the total funds invested in programs in the last fiscal year:

  • Legal oppositions against other charities through the patent and trademark process: 16
  • Objections filed against companies or for-profit groups: 31
  • Total legal expenses last year: $515,405
  • Program budget for the 2010 fiscal year for research, screening and treatment programs, education and advocacy: $283 million.

The statement does not indicate how many cease and desist letters have been delivered to non-profits and charitable organizations since the inception of the organization for trademark reasons, or how many of these occurred after Komen’s name change in 2007. Nor does it reveal how much legal work was done on a pro bono basis to offset legal expenses. Aside from providing a few clarifications, Komen’s official statement about responsible stewardship of donor funds is misleading. It does not adequately explain why the organization would engage in any activities that would undermine the ability of other charitable organizations to do their own work toward the betterment of public health and the eradication of disease.

Other Komen statements suggest that trademark policing is meant to ensure that there is no confusion about who donor money supports. Susan G. Komen for the Cure with its stylized running ribbon is specific and clear. Kites for the cure without Komen’s logo is something else. Where’s the confusion? Or maybe that’s the point. There is no confusion. If the running ribbon sparkly pin in the Komen shop serves a different function than the generic pink ribbon that I wear on my lapel, then it represents Komen the organization and not the greater cause of breast cancer.

What is certain is that if there were truly a legal battle to be had against any entity over the trademarked ‘for the cure’ language, Komen has the resources to move it forward. But if it did, the organization could risk its not-for-profit status on its own branded items. In fact, the Komen store could be subject to the same income tax as anything else. What is really at stake here? It’s about money.

In the fundraising endeavor, Komen has redefined cure to mean a whole range of activities that do not involve the eradication of breast cancer. In this capacity Komen justifies spending roughly 25 percent of its program budget on research; encourages donors and patrons to light buildings, bridges, pyramids, and statues in pink when these monies could be spent on research; forms partnerships with corporations, some of whose products play a role in the development of chronic illnesses, such as cancer; and attempts to solidify its place as the self-proclaimed leader of a disparate and nonconsensual breast cancer movement.

Yes, Komen parcels out money to some breast cancer organizations, supports some quality research projects, and gives some supporters a platform to come together. But, it also fails to attend to the perspectives and goals of the total breast cancer movement and refuses to answer to a concerned public that only wants to see an end to the breast cancer epidemic. Yet, Komen’s official statement maintains that:

“Our reputation for transparency, funding life-saving research and our total dedication to ending breast cancer is unquestioned.”

This official statement does not suggest transparency. Clearly, Komen’s reputation is being questioned. Instead of recognizing this, Komen ends with a patronizing tug on the heartstrings aimed at destabilizing the critique put forth by those who are concerned as much about breast cancer as Komen purports to be:

“We are disappointed that our supporters have been misled and have been distracted by this issue, especially when many Americans cannot afford the treatment they need, access to breast cancer care is at risk and so many people continue to lose loved ones. Our singular objective is and has always been to find and ensure access to the cures for breast cancer, and we are enormously grateful for those who stand with us in this mission.”

No doubt Komen is disappointed. My colleagues and I are disappointed. Women whose mammograms didn’t see their tumors are disappointed. Those who are being treated for pre-cancers as if they were invasive disease are disappointed. My friends with recurrences and metastatic breast cancer are really disappointed. But disappointment means nothing unless it leads to clarity and action.

Komen is right about one thing. This is a critical time when many Americans cannot afford treatment, need care, and continue to lose loved ones. That is precisely why the leaders of advocacy need to think deeply about what they are doing, and how they are doing it. It is why we all need to think about what is lost when fundraising and self-perpetuation become the top priority.

Gayle A. Sulik is a medical sociologist and author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health. This post originally appeared in the Oxford University Press blog under the title “Susan G. Komen for the Cure® Sells Out the Pink to Get the Green.”

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  • Ed

    Money corrupts, simple as that.

  • Deb

    Altough I work in PR/Marketing for a community hospital, I am a stage IV breast cancer patient. In our world, there is a lot of discussion about Komen and “pinktober” and what Komen does to help eradicate breast cancer (yes, FIND the cure!) Nancy Brinker takes an enormous salary for her efforts as the head of the foundation that she started. Is that justified? Maybe yes, maybe no. For those of us with Metastatic BC, time is definitely not on our side and all this squabbling back and forth over Komen’s power in the world of pink is a rediculous and unessesary waste of the foundation’s time and money. Nancy, stop talking the talk and start walking the walk. Forget the arguements over words and put that money towards the research needed to prevent the deaths of 46,000 men and women in the US who will die from BC every year!

  • Mary

    Gayle Sulik is a strong voice of reason in a country and society that is enmeshed in a pink culture that does little to address the true needs of those with breast cancer, As a BC/treatment survivor I avoid all pink marketing. I give directly to such organizations as The National Breast Cancer Coalition and Dr. Susan Love’s Army of Women. Such organizations, as these, put the breast cancer patient first, and I cut out the middle man! I do the same thing for the Girl Scouts. I want my money directly in the till of the organization, not in the “cookie maker’s” pocket.

  • http://www.brendadenzler.blogspot.com Brenda Denzler

    Gayle, I find your critiques and comments very valuable. Thank you for doing this important thought-work for those of us with breast cancer.

    I do have one issue with what you wrote, above, though. Cancer is not a chronic condition — not in the way the term “chronic” is understood by most people. And, IMHO, not even convincingly when “chronic” is used in its strictest medical sense. So when I hear people say that cancer is a chronic condition, I tend to hit the roof. It seems like such a dismissive thing to say.

    When I was a teen-ager, I had an ingrown toenail that I just couldn’t seem to get rid of. It was recurrent. It kept coming back, and it took several years of periodic misery to figure out how to get rid of it for good. THAT was chronic. A health condition that needed to be managed. But it wasn’t going to kill me.

    I have had migraines for about 20 years now. They keep coming back. They have been a long-lasting issue. THAT is chronic. A health condition that needs to be managed. But it isn’t going to kill me.

    I have reactive airways — kinda of “asthma lite.” It gets better or worse. It is persistent. But it is manageable and while it COULD flare up into a true breathing crisis and kill me, chances are that if I keep managing it properly, it will never kill me. It won’t even come close.

    Not so with most cancers — especially with metastatic cancers. It is not a health condition that, if you just stay on top of it, you can probably live a pretty normal life (and life span). It is a condition that will eventually kill you.

    And that “eventually” is sooner, rather than later, for most kinds of cancer. For metastatic breast cancer, it’s about 2 years. In what sane, rational, honest universe does that kind of heatlh condition qualify as “chronic” disease!?!!??!!!

    For a variety of socio-politico-economic reasons, some physicians may want to pretend that cancer is a chronic disease, now. They may want to claim such a victory over the beast. (Witness the ASCO press release on the weekend of June 4/5.)

    But only when I can get cancer, keep it nicely managed for 20, 30, 40 or 50 years, and then die of something unrelated to it…. Only then will cancer truly be a chronic disease. Until then, if it is not “cured,” it remains a disease that drastically shortens lives. It remains a killer.

  • Deb

    Perfect analogies, Brenda. I was diagnosed with stage 1 bc in 1990. For almost 20 year’s, I had a chronic disease. In 2009, I was diagnosed with metastatic bc. I now have a terminal disease.

  • Sandi

    I have been bothered by the “for the cure” tagline on Komen’s name for quite some time. After looking at the financials a few years back, less than 20% went for research and even a chunk of that was administrative cost and not research. Komen does a lot of breast cancer activities that do not translate into “the cure.” I wish they would drop that from their name as it’s not how their money is channeled. Over the past several years, I’ve been a breast cancer grant reviewer for various organizations and I believe we are missing the boat when it comes to really targeting a cure.

  • Deb

    Sandi, your observations and comments are right on! With the power it has and the money it raises, Komen could really make a difference in the lives of breast cancer patients (especialy those with stage 4.) Personally, I have enough pink ribbons, tee shirts and hats to last well beyond my lifetime. I get it – Komen wants its name and logo everywhere. When I was first diagnosed in 1990, the bc awareness movement was just starting. Thanks to Komen, we are aware. Its time for the foundation to take its considerable power and fundraising skills to put the money towards research “for the cure!”

  • Ed

    Well, there isn’t as much money in it if you cure it is there? It is why many use the terms chronic as it relates to cancer since chronic is a magic word to pharma, academics, awareness providers, hospitals, etc etc.

  • http://twitter.com/PinkRibbonBlues Pink Ribbon Blues

    Thank you all for your comments. I apologize that I did not reply sooner. I wasn’t aware that this piece was republished here until today. 

    I just want to say that it is heartening to know that people are beginning to really speak out and demand accountability. I also agree with Brenda that cancer is not a ‘chronic condition’ in the same way as another chronic illness. My point (which was clearly not articulated well enough) was that some of those products lead to a host of chronic conditions as well as cancers. I understand why someone might ‘go through the roof’ to call cancer chronic, and I actually argue against that in other writings. Thank you, Brenda, for pointing it out here. 

    You might also be interested in reading some of the essays on my website (www.gaylesulik.com) on metastatic breast cancer. Here are a few links; http://gaylesulik.com/?p=8219 and http://gaylesulik.com/?p=3672. Thanks for reading. Onwards and Upwards!!

  • http://secondbasedispatch.com/ jackiefox

    A woman I know died of breast cancer in March. A young woman I met last fall died of breast cancer this past weekend. I know other young women fighting like hell to stay alive in spite of metastatic breast cancer. If Komen truly supported a cure, they would throw much more of their considerable money and influence behind research. They have become a large corporate brand like Pepsi or Disney, and their main interest seems to be perpetuating that brand. Komen’s mythology is based on Nancy Brinker’s promise to her sister to end breast cancer forever. The way to do that is through research. Instead, the promise morphed into creating a huge corporate entity that hawks perfume on the Home Shopping Network while women continue to die of this disease.

  • Beth Gainer

    Great posting. A great friend of mine died at the age of 47 of breast cancer. A mammogram missed my tumor. How long can this go on?