Too much pink? Cause bandits respond.
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 leadership, trademark feuds, corporate partnerships and branding activities, pinkwashing, limited 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.”
Enter Komen Bandits, passionate individuals like Dr. Gayle Sulik, author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health. These bandits are women (and men) passionate about finding a cure and funding the research that will get us there.
Komen has been very, very quiet over the past year while facing increasing criticism.
Is this a plan for short-term success of long-term survival? How would your nonprofit organization respond to this type of criticism?
I look forward to reading how you would handle cause bandits.
This is a really interesting post. What should an organization really be counting? What is really important? What is truly impactful? Once determined do these answers change as organizations get older and the world changes.
Seth Godin says that busy does not equal important. Measured doesn’t mean mattered.
Sometimes we become the “industrial complex” that we fight against. Our systems become so large and complex the organizational beast begins to feed off itself. We forget how to partner and collaborate.
I think there were very distinct voices that wanted to be at the table that have not been so this new group was born. How Komen responds will speak to their values as an organization.
Komen has a specific place in the breast cancer awareness cause arena and can continue to capitalize on its greatest strengths to do great things for breast cancer awareness. The reason it was founded, it’s growth and what is good should not be overshadowed by some of the issues. They are however a good reason to head back to the board room!
But the ‘bandits’ mentioned in the post may be better off if they took that energy and perhaps started an advocacy group. They could be by far more influential in fighting for the cause.
My response to bandits is no response. Every one has a voice.
Well said, Desiree. We need many voices around our table, even those who may not agree with how we make the mission happen. When people disagree and/or criticize our work, they step up our game. They push us out of our comfort zone and challenge us to look at new solutions, IF (and only if) we are willing to listen.
Maggie – I love your suggestion to head back to the board room. I sat in on a session at Cause Marketing Forum on Friday that recommended just that. When nonprofits face insurmountable road blocks, they need to head to the board room and put it all on the table, including the mission. It will open all eyes gathered around that table when changing, adjusting, and/or giving up on that mission is on the line.
If someone is criticizing your cause, you can come from a position of strength by acknowledging and responding to them. Take the most critical people and ask them if they would like to sit on a taskforce which includes some of your board members, so they can start helping too make change around your nonprofit. Press, whether good or bad, can help your nonprofit, if you respond to it properly, and inclusively, rather than just trying to hide your head under a blanket until it goes away. I think Komen needs to start making their critics into allies with this method.
Peace,
Mazarine
http://wildwomanfundraising.com
Good point, Mazarine regarding bad press helping nonprofits, if responded to properly. The big IF in this case.
Some of my biggest allies in the nonprofit sector (including two board members) started as people who did not agree with my organization and our way of serving the mission. They are now our biggest cheerleaders (and donors), but only because we took time to build relationships and truly listen.
I’ve been hearing Komen criticism for awhile now. While it’s important to find businesses and organizations who can (and will) donate to your nonprofit, you also have to balance that with the work/research that you do and what the public perceives of your work.
I don’t think that Komen needs to respond or cater to the naysayers, but maybe they use this to create a public education campaign about their impact and their research. Remaining mum and not addressing these issues may seem like an ideal approach now, but could be detrimental in the long run. The Pink Bandits may have some valid points, and Komen should find some ways to address those points. They owe it to the public and the cause.
Karyn Brianne
@thefabgiver
Great response, Karyn. I think a public education campaign answering some of the questions raised by the naysayers is a good idea. That way Komen (or any org in a similar situation) does not have to focus on the negativity, but can talk about their impact in a positive, non-defensive way that justifies the work they are doing.
Your comment reminded me that dealing with “cause bandits” at large, national nonprofits versus dealing with them at small to mid-size organizations is quite different.
As one of the people who I guess is involved in the “organized movement,” I thank you for this post. My goal is to help Komen see how they can do better. They may have played an important role in the past, but so much of what we know about breast cancer has changed in the last 20 years. If Komen is truly going to live up to it’s name of being “for the cure” then they need to take a hard look at how they are allocating their resources. Since they are the face of breast cancer to the majority of Americans, their leadership on this issue is crucial.
Katie
Hi Katie – Thanks for your comment. The thing that has touched me the most about the “cause bandits” and Komen is that y’all are fighting for the same goal (for the most part). There are good intentions by all parties involved.
How do you think Komen should be engaging its critics? What would it take to get the bandits on the same page and everyone working together? I realize that is very ideal and unlikely to happen, but how we can that gap be closed so there are more people working together?
I don’t think of myself as a naysayer. I am grateful for the good things organizations like Komen have accomplished. However, I do think it’s time to move beyond awareness and pink fluff. I agree with Katie, if Komen has the word cure in its name, then more funds should be allocated toward finding that cure. Cure comes from researach, plain and simple. Re-allocation of funds, that would begin to get us on the same page. True leadership sometimes means evolving and embracing change. Is Komen up to that? Also, I just finished reading Pink Ribbon Blues by Dr. Gayle Sulik and I thought it was quite brilliant.
This is an important discussion, and I’m heartened to see such nuanced understanding of the situation here.
I agree that Komen “owes it to the public and the cause” to address the criticisms about its organizational leadership, branding, trademark issues, program allocations, corporate partnerships, and ethical responsibilities. I’ve been watching the progression of pink culture, industry, and advocacy for the last ten years and while Komen is not the only culprit in commercializing the disease—and I’ve written about this extensively—it does have a special responsibility given its position in breast cancer advocacy.
As part of the larger advocacy movement, Komen has indeed helped to heighten the visibility of breast cancer, raise money for various activities (some of which include research), and elevate the status of the survivor. However, there are also real and unfortunate consequences to the approach Komen and similar types of organizations have taken with regard to pink-washing, branding, over-relying on secondary prevention, defining survivorship in ways that do not resonate with entire communities of people, capitalizing on simplistic messages about risk, making sense of scientific controversies, dealing with metastatic disease, and ultimately painting a pretty picture of breast cancer that, in reality, is not all that pretty. Komen should address these concerns in meaningful and actionable ways.
In terms of the bandits, I think there is a place for public outcry in whatever form citizens want to pursue (taking legalities into account). There are more than 1400 breast cancer NPOs in the country, so I don’t think the bandits need to form another one! In fact, I really hope they don’t. There is already an excessive duplication of programming, but there are key organizations that represent diverse perspectives, areas of expertise, and communities. These are the organizations to bring to the table as some of them already represent the issues that the bandits are putting forth. Since Komen has appointed itself the leader of the global breast cancer movement, it would be beneficial for Komen to represent the totality of that movement.
There’s no need to “throw the baby out with the bathwater.” I hope the Komen will heed your suggestions and address the critical issues that are continuing to erode public trust and marginalize members of the larger breast cancer community. To date, as Jen suggested above, Komen has been “very, very quiet” about the criticisms. Ignoring them won’t make them go away, and addressing them will require more than canned statements or efforts to divert public attention with more fanfare and promises for the future.
Onwards and upwards,
Gayle Sulik
Thank you for this post, and for the extremely valid questions that you pose. I am one of the blogger “bandits” that you list here.
I completely agree with Gayle Sulik, in that the last thing the breast cancer movement needs is yet another non-profit organization. What we do need however, is a very real shift in the conversation, because the current regime, ostensibly led by Komen, is getting us nowhere fast.
Whilst the breast cancer epidemic still rages with incidence increasing, mortality rates hovering around 40,000 per year and incidence rates of metastatic breast cancer (the one that kills) virtually unchanged in decades, no breast cancer organization is immune to criticism, in my opinion. Any non-profit organization worthy of our donations should be openly responsive to its critics, and use such criticism to constantly examine its policies, mission, programs and organizational structure, and evolve as necessary. Is the organization in this to stay in business for the long-term, or complete its mission and close its doors as soon as possible? I suggest the former in Komen’s case if its attention to branding and trademarks, corporate partnerships, continued large-scale pinkifications and pink product lines are any guide.
The breast cancer bloggers that I know are asking some very hard questions, often taking personal backlash as a result for daring to demand better of Komen, other similar organizations and the breast cancer status quo in general. What’s “awareness” really all about, if critical discussion and analysis is being ignored in favor of pink feel-good culture?.
Naysayers, Bandits, Anti-Pink etc ? No. Anti-breast cancer. Just because something is, doesn’t mean it should be. And that includes a branded pink breast cancer movement rumbling along unchecked, unquestioned, and unresponsive.
I wish Nancy Brinker, last seen on the Home Shopping Network shilling for the Komen-endorsed “Promise Me” perfume, would meet with a group of people currently living with metastatic breast cancer.
Susan G. Komen died from metastatic breast cancer, a disease that remains incurable lo these many years later. Nancy Brinker seems to be all pink,all the time. It’s like she’s forgotten the real people vs. the businesspeople she keeps inking deals with.
Nancy Brinker defends the pink chicken bucket deal as the ends justifying the means. That’s really wearing thin. If Nancy wants to live up to the promise she made her sister, why doesn’t she ever cite the abysmal funding for mets research? It’s less than 3% of all breast cancer research allocations–even though we, the people with metastatic breast cancer, account for 90% of the deaths from the disease.
Well, count me in as a cause bandit! I’m a 20 year cancer survivor. I’ve been working very hard over the past years to help educate others on the importance finding a cure for all cancers. As a breast cancer survivor, I’m deeply troubled by the apparent lack of leadership emerging from Komen. The breast cancer community suffers dearly when Komen pulls stunts like partnering with KFC for a 50 cent donation per bucket of FRIED chicken sold. Or launching a perfume named “Promise Me.” Komen has lost touch with the very people it purports to help.
I admire the work that Gayle Sulik has done to cover this community. Like she mentions in her comment here, I absolutely agree that if Komen wants to be the defacto leader of the breast cancer cause, it needs to address the totality of the situation. Until then, the bandits need to unite!
Great article!
Alicia Staley
http://www.twitter.com/stales
Hi Jen,
Thanks for asking. I think that Komen needs to shift away from “awareness” and start demanding a cure. And funding the research. I really think they have a great opportunity here to have a huge impact. Ms. Brinker is so well-known; I believe she can move mountains on this one.
Thank you,
Katie
Thank you, Nancy, Gayle, Anna, Katherine, and Alicia for joining in the conversation. I’m learning so much from each of you. It is inspiring to see those who are truly passionate about a cause willing to work hard to make that cause more effective.
Bottom line: nonprofits need to be listening and engaging those who want to help achieve the same goal. We can disagree about the best way to to get to that end goal, but let’s discuss. We can all learn from one another and hopefully find ways to make lasting impact.
There are always going to be “haters.” This group – the naysayers, bandits, etc. – are not that. They want to help. We need to engage those who want to help, even if it means hearing some uncomfortable criticism first.
I am a long time supporter of Komen. I have captained several “Race for the Cure” teams. I, and most of the people involved, thought it would help Nancy Brinker keep her promise to her dying sister.
To me, the important part was not the pink ribbon, or the recognition, or the “celebration,” or all the schwag you could get at the event, it was “For the Cure.” Cure means you find out how to make a disease go away permanently. No, not even that. It means you find out what causes it and you prevent it. Obviously, to do that, you don’t just create a merchandizing empire, you fund research–basic scientific research, plus research into treatments.
I was already following all the cancer-prevention lifestyle advice. I was not in any of the acknowledged risk categories. Yet here I am, with a whole new kind of “breast cancer awareness.” I have it, and I was Stage IV at diagnosis.
Imagine my surprise to discover that, since I didn’t “progress” from an earlier stage to this final one, I don’t even count in the statistics. So not only do I now have an incurable disease, but also I’m not a “survivor.” Wow.
Then I found out that despite trademarking its “for the Cure” tagline and despite Nancy’s emotional and moving retelling of her promise to her sister, not much of the Komen money is going to activities that will result in a cure. People need to know this.
Thanks for sharing your personal story, Amy. I am speechless and wish there was more I can do to help you and your stage IV cancer battle.
I hope this passion-filled conversation can help nonprofits who are willing to listen and engage – nonprofits who are truly committed to having an impact.
1. Komen has succeeded in de-stigmatizing breast cancer.
2. Komen has succeeded in making a national conversation about breast cancer.
BUT…
3. Komen has gone too far, creating a lifestyle brand for a deadly disease.
4. Komen has not updated its education campaigns, since as Amy and others can attest, early detection is *not* key in saving lives with breast cancer. This misconception is based on the facts on the ground with *other* forms of cancer.
5. Komen has gone too far in trademarking (and suing to protect the phrase) For the Cure, particularly in light of their paltry investment in cures.
6. Komen has gone too far in ignoring root causes of breast cancer via questionable corporate partnerships. KFC? Perfume with potentially carcinogenic ingredients? Plastic crap that contributes to the toxicity in our environment? This is not a coherent strategy.
While I don’t consider myself a bandit, I have come to agree with the many advocates who are demanding Komen and other organizations to start putting money into research rather than easy fixes like shower cards. I was diagnosed at the ripe age of 38 with early-stage breast cancer. It came back five years later as metastatic. This we have learned happens to 30 percent of all breast cancer cases.
Devoting only 16 percent to research and then only 2 percent of that for metastatic research doesn’t cut it. So many people are working hard to raise money for Komen; this organization needs to be good stewards of this money and devote more funds to a cure like they claim to do.
I’ve been healthcare PR for most of my career and can tell you Komen is only shooting themselves in the foot by not responding to people asking serious questions. Until they do, I don’t plan on walking at the Race for the Cure and will instead donate funds to medical centers who are doing innovative research.
What a great post and great comments. I am so thrilled. I live in Orange County (where I believe Komen boasts its largest chapter in the US, or at least one of). They are a very powerful organization here in Orange County.
I had misgivings early on in my breast cancer diagnosis about Komen. In fact, I had very mixed feelings about them long before my own cancer ride when I watched my Aunt succumb to breast cancer. I was in law school at the time and Nancy Brinker came and spoke at my law school (this would have been some time in the early nineties). At that time the over riding message seemed to be about awareness and yet, even then, there was something troubling to me about the pink branding and partnerships.
Maybe it was because I was watching my Aunt suffering so much at the time. It felt like my Aunt’s suffering, and the suffering of those like her, was somehow being used to make money.
My feelings were only confirmed when I sought out help from Komen when I was diagnosed. Every attempt I made to get assistance was met with a plea from Komen for financial support from me, from my family members and friends. I felt as though Komen was using my cancer diagnosis to get money from those closest to me – who were lead to believe that somehow a donation to Komen would help me in some way. It felt sickening at the time. Here I was in the throes of an aggressive cancer diagnosis and friends of mine who felt helpless were motivated to make donations to Komen out of the very helplessness. I felt taken advantage of and felt that my friends were taken advantage of. It makes me sick.
And here is what is perhaps most troubling to me: When I have expressed even the slightest discontent with Komen here in Orange County (for example at a support group), the room either goes completely quiet or I am attacked verbally. It is a really strange kind of hold that Komen seems to have over the support groups, social workers and medical practictioners here in OC. It seems more than cultish and Stepfordwive-ish. And I know as I write this, I will receive some attack from people I care about but, who disagree with me about how Komen takes on its mission.
I wish I could write more right now, I am chomping at the bit! But, alas, I have to head out the door to see my oncologist this am. I can’t wait to get back and see what others have to say.
I am SO happy to see this post and the associated comments, I have felt so alone on this issue here in Orange County.
Glad to see you writing about this, Jan. I’m another one of the bloggers & activists & members of the breast cancer ‘club’ who is disillusioned with Komen & other awareness organizations & is not afraid to say so. A lot of great comments have been posted here by my sisters in the blogosphere. I find it ironic that Nancy Brinker & Komen have thus far not responded to the concerns we’ve raised, since we are the very women that Komen is supposed to be helping. If the population you purport to serve is dissatisfied with your priorities, ignoring their concerns seems to me only to underscore how much you have lost your way as an organization. The ends do not justify the means, in my opinion, particularly when the ‘ends’ in this case seem to be at odds with the real, tangible concerns of women and men living with and dying from breast cancer.
I think Brinker’s recent appearance on the Home Shopping Network says it all: the headline, prominently displayed throughout the segment, was “Shop for the Cure.” There’s no question that Komen leaves everyone else in its wake in encouraging corporations to develop and market pink consumer merchandise. The corporations are making lots of money, dusting up their public image, and Nancy Brinker has become a media star. And what has all this so-called awareness achieved exactly?
When I was going through active treatment, I was invited by friends to attend a pink event which included lighting the local statehouse in pink lights. I couldn’t go because I was sick and in pain from treatment side effects. So, what did my friends do? Instead of offering to help me or visit with me, they attended the event without me & bought me a pink souvenir. And who could blame them? I’m sure the event was much more fun than facing an actual person with breast cancer who was in the throes of treatment misery. Every one of us has stories like that, unfortunately.
But when pink lights and pink souvenirs and pink pep rallies become more important and appealing and meaningful to the general public than facing the reality of breast cancer, something is very wrong indeed. That’s not awareness. That’s a pink snow job.
I am a breast cancer survivor PLUS a 2 time Stage IIIC ovarian cancer survivor. Ovarian cancer is a chronic disease, grossly underfunded, under or misdiagnosed, and needs more awareness and education of the disease and its symptoms. I would love to see as much teal as there is pink!
Yes, I have cancer but no, I’m not a writer so I’ll just add this book to the discussion.
What’s Love Got to Do with It?
http://thenewpress.com/index.php?option=com_title&task=view_title&metaproductid=1251
What’s Love Got to Do with It? is an insightful debunking of the way charitable giving disguises American neglect of the public welfare. Award-winning Professor of Social Work and Sociology David Wagner points out that while the United States prides itself on being one of the most generous nations, it provides its citizens with the lowest public benefits of any Western society and has rates of poverty and inequality among the highest in the industrialized world. These two facts, Wagner argues, are not unrelated: independent philanthropy actually provides a cover for the harshness of America’s free-market capitalism.
In a book that Howard Zinn, author of A People’s History of the United States, says “raises sobering questions for all of us who want to live in a just society,” Wagner offers a provocative contribution to our thinking on philanthropy and social welfare.
David Wagner’s previous books include the award-winning Checkerboard Square and The New Temperance. He is a professor of social work and sociology at the University of Southern Maine.
Hmmm…the backlash is a comin’ and more and more voices are being heard. Just today, this blog post caught my eye:
“Komen’s Wild Ride” by Alicia C. Staley
http://community.wegohealth.com/profiles/blogs/komens-wild-ride
Kudos to the cause bandits…hope they are wildly successful. Komen does not get how this nonprofit thing works. And unless they make a huge change in how they do things, they deserve the criticism and whatever else comes their way. Clearly the most appropriate way to handle this would be to meet with and listen (REALLY listen) to the Komen Bandits. And then begin to work with them to make the necessary changes. I, for one, am NOT holding my breath.
Komen has done terrific work in raising awareness, in making early detection a first-line defense, and in creating a global brand.
Now the bad news: they’ve become the Walmart (Target?) of cancer.
Much of the pinkification that’s happened in recent years has involved products that can CAUSE health problems for women: Avon cosmetics (packed w/paraben preservatives, which have a link to breast cancer), Kentucky Fried Chicken (diet high in fat and factory-farmed food raises risks for many diseases, including cancer), the NFL (how many players get arrested for domestic violence or sexual assault every year – and they’re PINK? REALLY?)
I’m beyond pink. I’ve gone plaid. Early detection for ALL cancer must be the goal. Team Plaid would like to draw your attention to Yellow: the Canary Foundation, which is actively funding research into ovarian, lung (killing more women that breast cancer now) and pancreatic cancer. http://www.canaryfoundation.org
Now THAT’S a cause I support!
Jen,
Thanks for kicking off a terrific conversation. Komen is facing the ultimate PR and nonprofit management problem yet it remains aloof. Go figure? A nonprofit? How long can an organization respond when it offends the constituents it claims to serve, many of whom have metastatic disease that will not ever be cured?
There are a number of issues to sort:
1) Komen’s accomplishments: these have not gone without recognition. I also want to point out essential work in Texas with underserved populations; I can’t speak to other areas, but in Houston, Komen supports The Rose, which provides low/no cost breast and cervical cancer screening to women in the greater Houston area. My concern is that women who need services the most will get lost in this entire conversation. Those are two of the key issues here: care for women who are underserved and tackling metastatic disease.
2) Clarification on early detection saves lives. It does save lives, that is a fact. But it doesn’t save ALL of them. Until it does the effort does not stop. That fact can NOT be ignored. But the facts on early detection are not well understood even within our own community. Mammography is far from perfect; nothing better has yet come along to take its place.
3) The etiology of breast cancer is not well understood. A physician I was interviewing said this to me a few months ago but it isn’t stated very loudly with the breast cancer world. I repeat it for emphasis: the etiology of breast cancer is not well understood. That stunned me. We need to encourage more innovative, collaborative research like SUC2 has initiated.
4) Komen needs to collaborate. In addition to entering the public sphere and actually addressing some of the issues raised here, there’s nothing worse than the “stand alone” silo mentality. It won’t work. Komen is one of the few organizations that will NOT partner with other national cancer-fighting organizations on a project. WHY IS THAT?
5) Get real and provide LEADERSHIP. Leaders lead. They don’t hide behind their logo in carefully orchestrated speaking and media events. They lead. That is what the breast cancer community is asking for.
When do you think we’ll hear back…not too many of us will be around to listen for the answer. Komen’s is losing an opportunity to define itself to an engaged population.
Thanks again,
Jody
This bit of insight (no silver bullet( comes from my experience asthe founder of an organization (www.womenwriting.org) which has now gone into the hands and leadership of the second generation.
Without designing and fiercely implementing across the culture, a set of conscious practices which align vision & mission with action in the world, any growth in an organization is in danger of taking on a life of its own. My simplistic understanding of cancer itself is that it’s unconscious growth of cells.
Without the values of transparency, rigor with nurture, accountability with empathy, and a willingness to embrace paradox, we create zombie organizations which are “dead and don’t know it” as it were, consuming more and more resources while effecting less and less healthy change.
Every voice carries a piece of the truth which is treasure to a confident and grounded leader. I feel compassion for Nancy Brinker who sounds more and more beleaguered, hiding out in a castle of her own unwitting making.
The women storming the castle are only doing so, I hope and believe, because she has not invited them in for a circle of shared resources (and cups of green tea)
Mary Pierce Brosmer
Thank you Mary and Jody for your very informative replies & for adding such value to the conversation. You both bring up excellent points for nonprofits to consider. Let’s not turn our supporters in to a “zombie nation” – it will not benefit the cause in the long run. Engaged donors and volunteers are key, and that means we need to be ready and willing to listen.
Mary, you rock, woman.
Katie