Pink Fatigue and Advocacy

Add disillusioned breast cancer survivors and the power of social media together and you have a storm brewing against the mother of all cause marketing – pink ribbons and breast cancer.  Liz Szabo of USA Today writes this week about the power of breast cancer bloggers and how they are catching the attention of the largest breast cancer group – Susan G. Komen for the Cure®.

Pink ribbon marketing may be a victim of its own success.  It has worked so well that every company and organization wants to be a part of it, creating some questionable alliances that are now attracting the bloggers’ attention.  I wrote about one in my own blog.  What is startling to me is that breast cancer cause marketing has expanded to new levels, and not just in October anymore.  This past weekend I walked into Jersey Mike’s to be bombarded with pink banners and posters.  Mikes’ Way to the Cure….oh my.  Jersey Mike’s has created a six month, cause marketing plan with three phases!  The first phase gives me the opportunity to buy specially branded breast cancer collectible cups.  Wow.

But the real issue for me? Where’s the Progress?  Attention to the disease isn’t necessarily a bad thing.  And people wanting to contribute to the end of the disease in some way is certainly not a bad thing.  As someone who has had the disease and as an advocate, I appreciate the focus and attention on breast cancer, and people’s good intentions.  But, bottom line? I want to see results for all of this attention.  Something is going terribly wrong when so much attention has led to such dismal improvements (read NBCC’s progress report here).

What has gone so terribly wrong?  There are several answers, and there has been much already written about our failure to win the 40 year war on cancer….but for breast cancer a major problem seems to me to be the misguided focus on early detection as the primary solution.

Kudos to the many breast cancer bloggers who are questioning this status quo in the breast cancer world – pinkribbonblues, thecancerculturechronicles, chemobabe, uneasypink, accidental amazon, and regrounding, to name a few.  This groundswell of disenchantment is amazing and encouraging to me.  Getting people’s attention and questioning the status quo are the first necessary steps in bringing real change, according to Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change.

The next step is presenting an alternative.

  “Individuals and organizations must do the hard work of becoming ready to question the status quo, and be smart enough to present well-founded alternatives,” according to the authors.

What is the alternative for breast cancer?  Advocates with the National Breast Cancer Coalition (NBCC) argue that we need to turn the focus and attention away from early detection as the answer and instead focus on prevention of the disease and on understanding metastasis.  We won’t stop deaths from breast cancer without knowing how to prevent the disease or without understanding how and why the disease spreads.  Period.

I am hopeful that we can all work together to challenge the breast cancer status quo, change the conversation, present smart alternatives and bring real change for women and men with or at risk of breast cancer and their families.

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Comments

  • Kathi  On July 19, 2011 at 4:17 pm

    Thanks for including my blog. It’s encouraging to see some mainstream media paying attention to us. I’ve been very encouraged as well by all the repostings and retweets I’ve seen lately for our various posts. If we all keep on speaking out & bringing some attention to the reality behind the hype, we may just get some genuine change to happen. Clearly, the status quo is no longer acceptable. xxoo

  • katie  On July 19, 2011 at 5:12 pm

    Thanks for the mention Laura, and for being such a strong advocate.

  • Pink Ribbon Blues  On July 19, 2011 at 6:12 pm

    Thank you Laura. I’m glad to be among the questioners you mentioned. I too am inspired by the groundswell of disenchantment, especially because these notable bloggers, cancer rebels, and activists are smart, honest, evidence-based, and committed to real change. After writing “Pink Ribbon Blues” I knew I had to be step into the action in a new way. These rebels keep me on my toes, and together we’ll all demand accountability, transparency, and progress. The eradication of the epidemic depends upon it. And, changing the status quo has implications far beyond breast cancer alone.

  • nancyspoint  On July 19, 2011 at 6:43 pm

    I think you’re right, there is a storm brewing here. I actually think Komen is beginning to take notice. Komen is beginning to hear us, now we just need to get them to listen. There’s a huge difference.

    Where is the progress? That’s what we all want to know. We need to keep working on bringing about meaningful change. Great post!

  • katherinembc  On July 19, 2011 at 9:08 pm

    As one of 155,000 people in the US currently living with metastatic breast cancer, I would like to know what NBCC plans to do specifically for us living with MBC right here, right now.

    We can’t wait until 2020.

    NBCC has steadfastly resisted a single focus on any one group of patients.

    Well why not???

    Cancer is NOT a democracy. My needs and concerns as a 45-year-old woman with MBC are not the same as 65-year-old grandmother with DCIS. Yet, from what I can discern, NBCC expects all of us to do the same thing.

    Again, I ask you: What am I supposed to do until 2020?

    What about our African American brothers and sisters? Being a black woman with metastatic breast cancer is surely to be a minority within a minority.

    Shouldn’t we be giving some priority to those who desperately need help right here, right now?

    The head of the American Cancer Society thinks so:

    “If we did what we already know, at least 37% of cancer deaths in people between the ages of 27 and 64 could be avoided right now,” writes ACS’s Dr. Len Lichtenfeld (http://www.cancer.org/AboutUs/DrLensBlog/post/2011/06/17/Cancer-Facts-and-Figures-2011-Poverty-is-a-Carcinogen-Does-Anyone-Care.aspx). “Where is the national conversation about the fact that poverty is a carcinogen? Are you talking about it? Is the media talking about it? If the silence is deafening, then perhaps you have your answer. ”

    Rather than bashing a lamentably easy pink ribbon target, I would love to see NBCC extend the olive branch to Komen, BCA and other “rival” pink groups. Imagine if you were all working together. What would it take to make that happen?

    Jane Soyer and Nina Schulman founded the Metastatic Breast Cancer Network (MBCN) in 2004.

    Soyer, an NYC public school teacher, mentor and guidance counselor died in 2005. Schulman, an Emmy Award-winning film editor, producer and director, died in 2008.

    Schulman would rant when other breast cancer organizations would once yearly light a candle for all who died that year and then go on with business as usual–business that excluded doing anything to meet the unique needs of the MBC population.

    “We need to keep this awareness growing,” wrote Ellen Moskowitz in an email announcing her successor as the president of MBCN. “We need to speak up and not allow MBC to be put on the back burner. We need to ensure that National Breast Cancer Coalition (NBCC) includes research to STOP metastatic spread—and not just to prevent metastatic spread. So much has changed for us since I was diagnosed. I am so proud to have been a contributing factor to this change. We are bonded and our voice is louder than ever–we are actually being heard!”

    NBCC: Are you listening? Candles are nice. Moments of silence can be very comforting for the living.

    But that’s not good enough.

    Are you with us?

  • Kathi  On July 20, 2011 at 12:02 am

    Katherine, as usual, you raise points that have occurred to me as well, that are not easy to address. EVERY breast cancer awareness organization is, to one degree or another, just blowing smoke if they don’t put awareness of metastatic breast cancer front and center. That’s the bottom line, after all, isn’t it? That’s what kills the 40K-plus women every year in this country alone. I don’t know if we’ll ever see any olive branches working anytime soon, but it sure makes me nuts to see how much pointless redundancy there is in the movement overall. Maintaining the status quo is easier, let’s face it, and it keeps a lot of muckety-mucks collecting their salaries, but it’s not getting us where we need to go.

  • CancerCultureChronicles  On July 20, 2011 at 9:32 am

    Thanks for this post Laura, and thanks for including me in your list of rebellious bloggers. There are certainly some other names that I would also include like Nancy’s Point, Bringing Up Goliath and most certainly IHateBreastCancer who has also commented here.

    Ironically it has taken a pink bottle of perfume to get this conversation into the national press, but the “perfume” to me has also become a metaphor for all that is wrong with the breast cancer movement in its present form. The questions raised by the bloggers, which appear on the surface to be just about Komen’s perfume and pink ribbons, in fact are much deeper. So far pink culture has not delivered on its promises and we have poured billions of dollars and resources into a cause with not much to show for our efforts. I firmly believe that NBCC and other organizations like Breast Cancer Action are leading the way in thought leadership providing a much-needed alternative perspective and actions to pull us out of the pink rut we seem to be stuck in.

    Sadly, it’s taken decades for the issue of metastatic breast cancer to make it onto the wider breast cancer agenda, but I feel that the NBCC’s Metastasis Prevention Summit is at least a good start. Komen is also starting to indicate an interest in MBC, not least with the recent appointment of mets researcher Danny Welch to their Scientific Advisory Council. And organizations like Metastatic Breast Cancer Network and MetaVivor continue to fiercely advocate for the needs of the mets community.

    But to KatherineMBC’s point there is more work to be done, particularly for those people living with MBC now, myself included. She is right, in that we cannot wait until 2020. My hope is that through this first NBCC summit, and with the Advanced BC conference in Lisbon later this year, that we will see some action items, that could provide benefit to the MBC community in the nearer term, or at least a plan of action for the future that includes help for those already dealing with metastatic disease. In particular, I am thinking of the work of mets researcher Pat Steeg, which if translated to the clinical setting, could provide enormous benefits, both for outright metastasis prevention, but also therapeutic benefit for existing metastases. (http://provocativequestions.nci.nih.gov/proposed-provocative-questions/Questions/question_1303305591)

    I’ll be watching very closely for action items and indeed questions from this August mets summit, that the bloggers can take up and amplify via social media. The clock is ticking towards 2020, but it’s also ticking a little bit louder for those of us in the mets community.

    Laura, I certainly do hope that we can all work TOGETHER to bring about real change to the outcomes of this wretched disease.

    • CancerCultureChronicles  On July 20, 2011 at 1:26 pm

      P.S. I would also include Jody Schoger who blogs at Women With Cancer who is a total cancer rebel and fierce advocate. :)

  • breastcanceradvocate  On July 20, 2011 at 11:34 am

    Thanks everybody for your comments.

    PRB, you are right on when you say these bloggers are smart, honest, evidence-based and committed to real change. It’s so inspiring and encouraging. And CCChronicles, you are right, there are many others I didn’t include in my list. Many more are adding their voices and thanks for naming a few of them.

    Katherine, I agree with you that cancer is not a democracy, but I think that as advocates we are all equal. There is personal advocacy for ourselves and for good care, of course, but as a coalition we are advocating together for common goals to achieve an end to the disease. What connects those working for NBCC’s mission is a shared belief in the evidence-based approach and a passion for ending deaths from the disease. There are many worthy organizations working to achieve important goals. We all choose which ones we want to support. I started this blog as an individual, and it is still my personal advocacy blog, but I chose to align myself with NBCC before I became an employee because I valued the evidence-based approach and because I support their three goals – increasing funding for good breast cancer research, increasing access to quality care for all women, and increasing the influence of all breast cancer survivors.

    I think we both want the same thing when it comes to metastasis – an increase in focus, more resources, more attention. I wrote about the prevention of metastasis in my second blog entry, in 2009. (Look in the Archives, August 2009) I have always believed that understanding how to stop or prevent metastatic tumor growth is the key to saving lives. If we succeed and figure this out, why wouldn’t it help all women? Could preventing new metastatic tumors in women with existing Stage IV disease be a real benefit and extend lives? I certainly hope so.

    • CancerCultureChronicles  On July 20, 2011 at 1:36 pm

      Laura – with respect to your last paragraph here, this is exactly the essence of what I heard from mets researchers Pat Steeg and Danny Welch at the NBCC Advocacy Training Conference. If we can induce metastatic tumor dormancy as a “preventative” measure then surely it could also be applied as a “therapeutic” measure for StageIV patients as well. This is exactly where Pat Steeg’s research is focussed and I refer back to the link I included in my original comment.

      There’s no question that we all want the same thing. We just need to all be at the same table.

  • katherinembc  On July 20, 2011 at 12:22 pm

    That third goal “increasing the influence of all breast cancer survivors” is problematic.

    How will you categorize me and the other 155,000 U.S. people with metastatic breast cancer?

    We are not survivors.

    Dr Fitzhugh Mullan’s 1985 NEJM essay (http://www.nejm.org/doi/pdf/10.1056/NEJM198507253130421) is credited with popularizing “survivor” as a term for category patients who have concluded their treatments.

    Mullan was specifically referring to the physical, emotional, and social issues, like pain, fatigue, and depression, that plague patients just as they lose touch with their oncologists and, typically, support from friends and family wanes.

    With MBC, you are ALWAYS in treatment.

    We are not survivors.

    As Elaine Schattner noted: “The expression drew attention to this burgeoning patient group that needed new kinds of support. It shifted the public’s perception of cancer: What was a dreaded disease became a treatable one. Now, the overall survival rate at five years approaches 70 percent…

    “Musa Mayer, who advocates for women with advanced breast cancer, laments the persistent gap between the common understanding of survivor—someone who doesn’t die of the disease—and the formal definition espoused by the National Cancer Institute and most private foundations. The focus of many public awareness and fundraising campaigns, celebrating life and emphasizing survival, can be at odds with the bleak circumstances of patients with terminal disease.”
    [http://www.slate.com/id/2268104/pagenum/2]

    As advocates, perhaps we can think of ourselves as all being equal. Unfortunately, as cancer patients we aren’t.

  • breastcanceradvocate  On July 20, 2011 at 12:45 pm

    Yes Katherine, I should have been more careful with the wording (these were my words not NBCC’s). I wrote quickly and used the word “survivor” though I in fact don’t usually use the word to describe myself. I know everybody feels differently about the word, but none of us really know if we are “survivors” for the long-haul do we? Here is the accurate NBCC description of the goal:

    “to educate and empower women and men as advocates, increasing the involvement and influence of those living with breast cancer and other breast cancer activists wherever and whenever breast cancer decisions are made”

  • katherinembc  On July 20, 2011 at 1:00 pm

    As a manager, when I set performance goals, they must be specific and measurable.

    How will NBCC measure the success of educating and empowering advocates?

    As cancer patients we are probably all familiar with the pain scale. Pain is subjective–no one but you knows how you really feel.

    But we may be asked to measure our pain on a scale up to 10, or by pointing to a series of faces.

    How will NBCC measure constituents’ involvement and influence?

  • breastcanceradvocate  On July 20, 2011 at 1:18 pm

    I’m speaking for myself here, but I measure success by whether we make progress in bringing down incidence and mortality from breast cancer, and whether we do it in ways that don’t subject ever more women to toxic treatments that themselves cause morbidity and mortality.

  • katherinembc  On July 20, 2011 at 1:43 pm

    On the negative side, in 2011, metastatic breast cancer is incurable. So the mortality rates are kinda high.

    On the positive side, we have nowhere to go but up!

    Do you have a specific number in mind? What percentage of reduction in incidence and mortality would signal progress?

    How will that mesh with the 100% percent reduction in incidence and mortality envisioned by 2020?

  • breastcanceradvocate  On July 20, 2011 at 1:53 pm

    I see no reason to lower the bar yet, so let’s aim for knowing how to reduce mortality to 0% by 2020….why not?

  • katherinembc  On July 20, 2011 at 2:13 pm

    What will you do for those currently living with MBC?

    This year, an estimated 45,000 U.S. people will die from metastatic breast cancer.

    Five-year MBC survival is generally said to be 27% and 10-year survival roughly 10% (Silent Voices, an LBBC publication)

    How good is your aim?

  • breastcanceradvocate  On July 20, 2011 at 2:37 pm

    Many, many people living with MBC have been and continue to be involved with NBCC and are working toward the goals and mission I mentioned above. I have been humbled by knowing and learning about so many of these courageous women and men. We are all working together to bring broad change (and to change those stats you are mentioning), not to serve the needs of individuals. There is a place for that, of course, and there are many organizations that do work to serve the needs of women living with disease today. We don’t pretend to be all things for all people…

  • katherinembc  On July 20, 2011 at 2:46 pm

    So this 2020 deadline is for some (but not all) people?

    What happened to the part about all advocates being created equal?

    Are some created more equal than others?

  • breastcanceradvocate  On July 20, 2011 at 2:52 pm

    Katherine, I think we are going in circles here and it is not productive….I’m going to sign off now and go do some work. Hope I answered at least some questions you had. Again, I really do believe we want the same things. Thanks for contributing to my blog.

  • katherinembc  On July 20, 2011 at 3:20 pm

    What would Jersey Mike do?

  • Jan Hasak  On July 22, 2011 at 8:27 pm

    Excellent post! Nancy’s Point blog also addresses the pink culture. We need to band together to bring more thought to the discussion. I agree that early detection is not the only answer. We need some really new treatments without all the terrible side effects for which we need more drugs with side effects. Not much improvement. Thanks for keeping up the conversation.
    XOX
    Jan

  • TNZ  On October 25, 2011 at 4:29 am

    I don’t find the ribbons on things to be a burn-out causing problem. Its all that Pepto-bismol-pink…*stuff*: pink coolers. Pink wrappers on things. Pink scissors. Pink hats and gloves and sweatpants. Pink gun grips. Eughh!

    I usually just donate my money straight up rather than let any of that awful stuff into my house.

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