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Too Much Racing, Not Enough Curing?

This past Sunday was of course Mother’s Day. It was also the day earmarked for the Susan G. Komen Race for the Cure at the Mall of America in Bloomington, MN. (I live close to the Twin Cities and lived there for many years, hence my interest). While watching the news Sunday night and observing the anchors beaming and smiling, I found myself feeling fidgety, uncomfortable and yes, even guilty because I was not feeling what I was supposed to be feeling. I was not feeling all warm, fuzzy and grateful. In fact, I was feeling the opposite. I was feeling a bit ungrateful. Why?

The story was meant to be of the warm and fuzzy type, the kind of story that makes everyone watching feel good, it was Sunday evening after all. And not just any Sunday evening, Mother’s Day Sunday evening.

The news clips captured yet another sea of pink, another shining example of the success of the pink ribbon campaigns.

The event drew in 55,000 walkers, a new record, and 2.5 million dollars were raised. The anchors proudly stated this particular race has grown to be the second largest in the world, probably due to the Mother’s Day date as well as the location; again, it takes place at the Mall of America.

After you raced for the cure, you could undoubtedly go shop for more pink stuff at the mall, right? Boy, is this smart and effective cause marketing!

So why does this kind of event make me and many others so uncomfortable? Why does it make me feel like I am a “bad/ungrateful cancer survivor” for not feeling a debt of gratitude to the “wonderful” organization behind this glamorized pink event?

In a nut shell, because all of this walking/racing, all of this pink, all of this feel good effort has done little to actually change the facts.

The incidence of breast cancer has not gone down. In fact, the opposite is true. The number of deaths occurring daily from breast cancer has not been significantly reduced. Presently very little knowledge exists to determine which breast cancers will or will not metastasize. Metastatic breast cancer continues to be lethal, yet less than 5% of research dollars are spent on metastatic breast cancer research. It’s thought that roughly 155,000 women are living with MBC, but no one knows for sure because even this statistic is not accurately kept track of!

This lack of attention given to metastatic breast cancer boggles my mind, because it’s not the primary tumor in a woman’s (man’s) breast that kills. Metastatic breast cancer does.

Another thought that keeps popping into my mind when I watch these events being covered and listen to participants being interviewed is this: generally, the people being interviewed have known someone or lost a loved one to breast cancer. This means the person they lost probably died from metastatic stage IV breast cancer.

Somehow this connection is missed. Why?

Perhaps it’s because no one talks much about metastatic breast cancer. It doesn’t fit in nicely with the prettier, pinker side of breast cancer awareness campaigns.

The primary focus continues to be if you find your cancer early, you will be cured, but of course this is not always the case. I’m not saying it isn’t good to find your cancer early, of course it is. But awareness and early detection are not the end all.

Early detection does not necessarily equal cure and it certainly doesn’t equal prevention.

Still, we don’t seem able or willing to move beyond awareness/early detection campaigns.

Why not?

Perhaps it’s because these campaigns are easier, prettier and way more profitable.

But is this how real success is measured? Not in my eyes.

So while I am grateful to Komen for at least sending some dollars toward research (approximately 20%), I am NOT satisfied, especially since Race For the Cure is their mantra. Research and cure go hand in hand.

In my mind, they need to step up to the plate. They need to shift their focus. They need to rearrange their dollar allotments. They need to  must do better. They need to must do accountable.

Why?

Because they can attract 55,000 walkers on a Sunday morning in May. Because they are the juggernaut of breast cancer fund raising.

Their placement, their success requires them to do more (for research).

But that’s only my opinion.

Did you know May is National Cancer Research month?  Probably not. If you do, you are way ahead of most.

I didn’t realize it until I accidentally stumbled upon this little known piece of information. Why doesn’t this designation receive more any, attention?

What about the other cancers? Where are their media-covered races?

I am grateful to those 55,000 walkers who came out the other day. They care. They should feel good about their efforts. They want to make a difference and they did, but in my mind, they have potential to do even more.

Think of the possibilities if 55,000 walkers at such events (along with the rest of us) looked deeper, asked more questions, demanded more answers, considered other options, stopped assuming and expected more.

Everyone would benefit. We might ultimately find that elusive cure we say we are racing for.

One last thought on Race for the Cure – to race means to hurry in competition in order to complete or finish something. Cure means to restore to health or wellness or get rid of an illness or disease.

So I have to ask, are we really racing for a cure and if so, what’s taking so long to cross that finish line and why aren’t we in more of a hurry to do so?

 Your Thoughts?

Can we really keep calling this a race for the cure?

To learn more about the current state of breast cancer please read the NBCC’s White Paper.

 

 

73 thoughts on “Too Much Racing, Not Enough Curing?

  1. I’ve been wondering these same things. So much publicity surrounding breast cancer. So much money. So much advertising. So much commitment. So much pink. But the proof is – as they say – in the pudding. And this 30-year-old pudding is stale. The warm and fuzzy cause that has developed around a serious disease has diverted attention from the actions that have the greatest potential of eradicating it. We can do better. We must do better.

    And yes, the focus on the pink campaign to the exclusion of other cancers is yet another huge downside to what the cause of breast cancer has become. I presented Pink Ribbon Blues at a cancer center last week and I can tell you that you are NOT alone in your concerns.

    As the hundreds of thousands of people who gather in the name of breast cancer suggest, we already have the good intentions. Now we need to better align our actions to achieve the greater goal. As you said, imagine if we all “looked deeper, asked more questions, demanded more answers, considered other options, stopped assuming and expected more.” Imagine.

    1. Gayle, Thank you so much for reading my post and for sharing your insights. I know you have been working on this issue for a long time. Thank you for continuing to be such a tireless advocate; I don’t know how you do it, but I’m glad you do.

  2. Nancy – I think you have absolutely summed this up perfectly. I am with you when you say these type of events make us ‘uncomfortable’ – I have never felt ‘warm and fuzzy’ about breast cancer. Of course events like these are done with good intentions, but you are right when you look at the statistics that show little change, and say, we must expect more.

  3. Well Nancy welcome to the fire. I know you are one person who can stand the heat. This is the money quote for me:

    “Think of the possibilities if 55,000 walkers at such events (along with the rest of us) looked deeper, asked more questions, demanded more answers, considered other options, stopped assuming and expected more.”

    Everybody needs to ask themselves this. IS WHAT I’M DOING MAINTAINING OR CHANGING THE STATUS QUO. Unfortunately the answer on the Komen question is the former.

    GREAT POST! I am sharing now.

    1. Anna, Thanks for sharing your opinions and yes, I can take some heat. I agree, the potential of all those walkers/contributors/dollars is what is so mind boggling. If only that could be channeled a bit better. Thanks for your support; in the “fire” with you.

  4. Nancy, like many I had no idea that May is National Cancer Research month. Why that fact is not emblazoned on every billboard in America (as is breast cancer awareness month), I’ll never know.

    Maybe it just isn’t as sexy as the awareness mantra, of catching it early. As you so eloquently state, catching it early is not necessarily the be-all, end-all that well-meaning people want to believe. They want a tidy fairy-tale ending that just doesn’t jive with the facts.

    Keep on being a voice for those like me who want to see more dollars directed to research, including signaling pathways, proteins to target, and mechanisms into how cells go awry in the first place.

    Brava, Sister Nancy. You go, girl!

    XOXOXO,
    Jan

    1. Jan, Thank you for reading my post and for sharing your thoughts. I don’t understand the lack of attention to other cancers either, I think it does unfortunately have something to do with the ease of cause marketing concerning women, breasts, pink, fairy-tale endings, the list goes on and on. I do think people mean well, but somehow things have gotten a bit out of whack. Thanks for your support, sister and welcome home!

  5. wow, nancy. what a beautifully written, passionate way to raise questions about the race for the cure events. thank you. you are helping us change the conversation.

    1. ChemoBabe, Thank you for reading my post and for leaving your comments. I am trying to do my part and I think the conversation is at least shifting a bit.

  6. Thanks for such a well-written thoughtful post.

    I feel that the Komen foundation is great at marketing and raising funds.

    If they devoted those funds to eradication of the disease through RESEARCH instead of marketing their foundation just think of the great work they could do.

    As far as media coverage…Men don’t walk for prostate cancer. There is a public misconception that lung cancer and skin cancer are the fault of the patient. The others are less well-known outside of oncology circles.

    Thanks, Again.

    1. J. Andy, Thank you for taking time to read my post and for leaving a comment. I agree, Komen is quite successful at marketing/raising funds. About those other cancers, you are so right. I can’t imagine how some people with other types of cancer must feel. The attention given is unevenly distributed that’s for sure. Which raises the question again, has breast cancer become sexualized?

  7. Thank you Nancy, and keep speaking out! As a breast cancer survivor and leukemia survivor who works as a patient advocate, I find it challenging to get attention for serious, helpful patient-focused information on metastatic breast cancer. Recently I worked on a three-part comprehensive series, which you can find at http://goo.gl/ojEfP I hope some of you reading this will find it helpful and share with other women who have advanced breast cancer and are seeking information on how to live with their circumstances, not how to run races, wear suggestive bracelets or make retail purchases that have nothing to do with quality of life. Thanks.

    1. Pat, Thank you for reading and commenting and also for working as a patient advocate. That is commendable. I will check out that series soon. Thanks for sharing about your important work.

  8. I’m a stage II survivor of 1 1/2 years and I am so pissed off at Komen Foundation for the very reasons you state in this article. And, the whole cult of Pink Consumerism makes me sick. Thanks for writing about this.

    1. J. Schaffer, I am so glad you let me know your feelings on this. Your frustration comes through and you aren’t alone. I’m glad you are a 1 1/2 year survivor and hope things are going well for you. I’m not against Komen. I applaud them for the good they have done. I just think it’s time for them to refocus, or else change their mantra/slogan.

  9. Great post, Nancy!! We need to find a cure and get the word out to Komen and other organizations to put more towards metastatic research. The numbers are boggling. It makes me feel like writing them a letter or finding out if there is some petition to sign.

    1. Tami, Thank you for sharing your feelings on this. Maybe you should write that letter! I agree, we need more research dollars for MBC. The numbers are boggling indeed.

  10. Nancy, two words:

    YOU ROCK!

    OK, more than two words. This brilliant, honest posting says it all. Frankly, I’m also tired of seeing breast cancer linked with Mother’s Day and linked with yogurt, bread, balloons, and everything else under the pinkified sun.

    Maybe Komen’s slogan should be “Race for Awareness.” However, we are all aware — painfully aware — of breast cancer, so that’s a moot point.

    And a real hot button for me is that why is it ovarian cancer is not as widely publicized? My friend just finished with treatment for Leukemia and she’s having a hard time finding support groups and is very aware that nobody is aware of her disease.

    I did happen to know that it’s Cancer Research month. The whole month thing is so ridiculous — I mean, why should one month be designated as research month? Isn’t research done year-round?

    Anyway, excellent posting, and I’m going to share it!!

    1. Beth, Thanks for sharing your thoughts so clearly, Beth! “everything else pinkified under the sun,” I like that! I’ve always said I don’t mind the pink, I just want more, mainly more dollars raised directed toward more meaningful collaborative research. I do feel bad for the other cancers too. Where is their spotlight? Oh, and if I rock, you do too!

  11. A cogent, articulate post, Nancy. We need to hold everyone who raises money for breast cancer awareness accountable, and help them become aware of the right things, the things that aren’t pretty, nice, fun, tidy or simple. There’s room for all kinds of fundraising, and all kinds of help, but we need to steer this ship in the right direction. It’s been sailing the right sea, perhaps, but not the right course.

    <3 <3

  12. This is one reason why I stopped walking for Autism. I wasn’t sure where my $$ was going. Accountability is key.

    1. Jeannie, Thank you reading and commenting. Do you have a friend or family member with autism? I understand why you stopped walking if you were unsure where the dollars were going. Could you find out or not? I don’t want to give up on our charitable causes, I just want more accountability and awareness. Ironic to use that word here, awareness.

  13. Nancy, the sad fact is that it is the same the world over. My late husband was diagnosed with cancer in 1978. I have lived with it for all but 2 years since then. I NEVER give to cancer research. Thankfully, I read an article way back in the 70′s that left me feeling sceptical.
    Thank you for bringing this information to the ‘fore.’ I want results not rhetoric!
    Love and gratitude dear Nancy.

    1. Chez, I hate hearing things are the same there. I still believe some organizations are worthy, so I don’t want to stop donating. Organizations need to be accountable and people need to be more aware of where their dollars are being spent. Thank you for commenting and I hope you doing alright. I’m thinking of you.

    1. Michelle, Thanks for stopping by. Yes, I have heard about this and it’s such a heartbreaking story. I’m not sure we have all the facts yet. I’ll check out your post.

  14. Nancy I was going to write on something similar. It seems as soon as spring arrives out come the pink ribbons and all of the other sellable Breast Cancer merchandise.

    I sometimes find myself weary at the whole fund raising campaigns that do go on. I also feel like I am an ungrateful cancer survivor that I should be out there, thanking every company that turns a blender toliet plunger, sink drain Pink! but somehow i’m not because it’s fake , the amount of money really going into research is miniscule. One thing for sure more needs to be done for women who are StageIV. I’m stage III Grade III I have no illusions that it can turn anytime because there is no cure for cancer, but I would like some assurances that there will be something available…. I think of Daria going to the Conference last year. Did anything ever come to fruition? If we are still using chemicals from the 30′s in chemo, and giving women drugs that have serious side effects like Arimidex and Tamoxifen that tells me we really have not progressed as much as we are led to believe…

    1. Alli, Thank you for sharing your opinions on this topic. Weary, yes, that’s a good word. And it really does sometimes make us appear to be ungrateful doesn’t it? And we really aren’t it’s just… well…we want more. And then we are made to sort of feel guilty for that. Anyway, I hope you do write that post. I’d like to read it.

  15. Well, leave it to me to be the one feeling uneasy on this subject. Having been in fundraising for years, I understand that it takes gimmicks and $$ to raise money. That’s not to say I am completely on the “charity” asking for money. No, no. I have serious, huge issues with the American Cancer Society that comes from personally knowing someone (rather unscrupulous) on their board and hearing this person brag about the ACS free trips, etc. I’m not blind, but I’m also not jaded. I just know that Komen Foundation is one of the few charitable programs that has a positive presence in our small community and while they might not donate more funds to research, I appreciate very much what they have done to make the words “breast cancer” no longer “dirty” or mentionable words.
    Hugs,
    Lisa

    1. Lisa, Thank you for participatiing in this discussion. I certainly value and respect your opinions, Lisa, especially with your experience in the the field of fund raising. I appreciate all the things Komen and others have done too. I really do. I don’t wish to diminish the positive things at all. It’s just when you look at their fiscal reports and see all that money being raked in and a relatively small proportion going to research when they have cure as their mantra, that’s where my “problem” with them lies.

  16. Nancy, I am so glad I found your post on the web. I was diagnosed with BC in March 2010. When I am feeling down I search the web for posts from others who have had, or have BC to see how they are doing. You express so many of the thoughts I’ve had over the last year regarding fund raising for BC research. I did not know that Komen only contributes 20% of what they raise to research. That is shocking! I am also feeling angry about the lack of attention to metastatic cancers. It seems women with Stage VI cancer are just being written off. We’ve been looking for a cure for so long, maybe it’s time to figure out how to prevent cancer in the first place. Thank you for your insightful post.

    1. Andrea, Welcome and thanks for commenting. Your date of diagnosis is close to mine. The lack of attention/dollars for research and specifically for MBC is shocking really. Prevention is coming into the conversation more and more too, but prevention is not always possible either – more research needed there too. Hope you’ll keep reading and joining in, Andrea. Hope you’re doing well.

  17. Nancy – this post makes me so mad, as I just finished reading an article about scientists actually having found ‘a cure’ but the compound used in the treatment cannot be patented, so pharmaceutical companies are not funding the human trials.

    How are we trying to ‘find a cure’ when important research is being ignored because they ‘can’t make a buck?’

    I just posted about this today and also posted the link to the article, and to the only clinic in the world who will treat patients with this new compound, even though it’s not been tested in humans yet…. it’s crazy what the world has come to.

    1. Michelle, Thank you for sharing your thoughts and frustrations. I have not heard about that “cure” and will have to read your post. There are many problems/complications to address while we wait for real progress. Hope you are doing alright.

  18. Nancy,
    I went to a “Breast Health Awareness” meeting this week. Several of the women had been to the recent National Breast Cancer Coalition (NBCC) meeting and were emphatically stating the conference’s message that a cure is just around the corner. That is not what I heard at the 33rd Annual San Antonio Breast Cancer Symposium. In fact, it was just the opposite.

    Breast Cancer researchers from all over the world, save their findings to report at this world class event. The best news I heard was the duration of survivorship with metastatic disease is increasing.
    I’d hate to think the NBCC is not giving us the straight scoop, but when I heard, from the world’s best researchers, that women with breast cancer need to pray and hope they’re one of the genetically lucky ones who’s cancer doesn’t metastasize, I’m not sure I trust anyone.

    Brenda

    1. Brenda, I was not at the NBCC conference, so I’m not sure what the ultimate message was. I do know they have set 2020 as the goal for achieving a cure. While more women may be living longer with MBC, it’s still lethal and as I understand it, the mortality rates are not significantly dropping. And I don’t like how little attention this segment of the bc population receives. They seem a bit lost in all the awareness campaigns. As you say, there still are many questions and much that needs to be done. Thanks for attending that meeting. I look forward to hearing about what you learned.

  19. I found your post via Gail Sulik’s blog. It is a beautifully written synopsis of all that is wrong with “pink culture”. I have several friends walking in “pink” walks this month and it’s hard to know what to say. I want to be encouraging, but I think the money could be best spent elsewhere. I am involved in my state’s organization Mass. Breast Cancer Coalition http://www.mbcc.org and we are trying to PREVENT breast cancer by getting toxic chemicals that lead to breast cancer OUT of the environment.

    1. Adena, Thank you so much for finding and reading my blog. I understand exactly what you mean when you say you want to be encouraging, but have misgivings about these “pink” walks. I feel the same way. I think your involvement in the Breast Cancer Coalition is great. As I understand it, they are working hard for positive changes. Hope you’ll keep reading and commenting!

  20. Sadly, once institutions becomes so big, they are more interested in continuity (of their paychecks) than in whatever they’re actually doing. I became disillusioned over several issues: They spent vast money and resources suing over the use of “for the cure” labelling – because I suppose if someone else’s money finds the cure, it won’t count? Also, the fired an employee who worked 60-80 hours per week for them because she wanted a day off, and took it, in spite of the fact that they said no to the salaried clerical worker, who should have been paid hourly, and then tried to block her unemployment benefits, and because when I tried to volunteer to assist at a local event, they would only let me give my time if I also gave a very large amount of money. I can give time. I don’t have money. Very sad, but it’s too big to care now.

    1. LJ Burton, I am glad you read my blog and decided to leave some comments. It sounds like you have had some unpleasant experience in this realm. I’m sorry about that. I can’t believe you were required to give “large amounts of money” in order to be allowed to volunteer. Something definitely out of whack there. Hope you found somewhere else to donate your time/dollars to.

  21. Nancy, I’m a bit late to the party on this post, but I want to say, well done! You describe what has become my very same frustration. I am often asked for donations to this type of thing and I want to say no, because the dollars are not aimed at research, but I hesistate to burst someone’s do-gooder bubble. But, I’m with you. To me, “cure” should mean research. No two ways about it. Thank you for this.

    1. Stacey, Yes, I do not wish to diminish the efforts of anyone, I really don’t. A lot of good has been done. It’s just time for some fine-tuning in how dollars are spent. I cannot seperate research and cure. You simply can’t have one without the other. Thanks for commenting, Stacey. I appreciate your thoughts. Oh, and you actually aren’t late to this party… this topic is not going away any time soon!

  22. Beautiful writing and very insightful and informational post, as usual. I’d never thought of this before. I believed Race For the Cure. 20%? Where is a good place to send donations for research?
    Betty

    1. Betty, Thanks for commenting, and you aren’t alone in believing Komen is doing more. I hestitate to say where to donate, it’s such a personal choice and there are many organizations. People need to visit websites and dig deeper and ask where money is spent. To learn more I do recommend the book Pink Ribbon Blues and its website. It’s pretty eye opening. Maybe I should put together a list… gottat think about that. Thank, Betty!

    1. Jill, Thank you for finding my blog, reading and commenting. I really appreciate your feedback. I notice you blog as well… will have to check it out.

  23. I can fully appreciate your post and concerns but take a moment to look at the financial breakdown of your local Komen community. If it’s anything like mine you’ll see that the employees and volunteers are doing everything to reduce overhead costs and the 80% that doesn’t go to research is going to fund screening programs to help un/under insured women and men get screening and followup care needed. There is no perfect system but if all the organizations would work together rather than competing we could do a lot more and fill all the needs of research and screening and care. Breast Cancer is just one type of cancer but I truely believe that if we find a cure for one we will be able to cure them all. I hope I’m right and I hope to see that happen soon.

    1. at the beach, Thanks so much for finding my blog and commenting on this important topic. You made an important point, the employees and volunteers are doing so much, but they do not determine where the dollars are spent. I hold the people at the top accountable for that. You also raise another important point, there is too much cross over with organizations doing the same things, mostly awareness campaigns. You’re absolutely right, working more collaboratively would be smart. Thanks again for your insights and I hope you’ll keep reading. There is a lot more to be said here.

  24. Thanks for your post and comments. I tell everyone I meet about the realities of pink ribbon/”for the cure” marketing and follow groups like Breast Cancer Action’s “Think Before You Pink.” I hope we can create a groundswell of awareness here and get the focus on Breast Cancer Deadlone 2020, where the cure IS the focus.

    1. Karen, Thank you very much for reading my blog and leaving a comment here. I really appreciate your feedback. Even more importantly, thank you for speaking up and following groups like BCA. Good for you! People like you are exactly what we need! Bravo!

    1. Debbie, Well, you are very kind to say that! I’m not brilliant at all, but I am passionate and I think you are as well! Thank you very much for commenting.

  25. I think at the very least Komen should release an official annual report on what research has been done in the last year and what progress has been made. I never hear anything about that. It just seems like they hide behind a big wall of pink without much to show for it. I could be wrong, but that is my impression of what I see.

  26. HI again Nancy,
    It hurts when we read posts like below,
    http://aoand.com/profiles/blogs/graviola-tree-10-000-times-stronger-killer-of-cancer-than-chemo
    -many well meaning friends have been sending me alternative remedies for chemo, this one made most rounds. If it is true, It makes us wonder if the money is really going to find a cure for cancer patients/ survivor or for survival of pharma companies.
    Sad that when I was just out of surgery and was carrying the drain pipe and pump around for a fortnight, a company offered a free pink shoulder bag to put the drain pump and pipe in it and carry around . I thought it was thoughtful till I saw the company name embossed in the bag , although not blatant. Didnt use it.

    1. Usha, I understand about the hurt and the decision to not use the bag. There are lots of questions about where the money is going and what it’s being used for. I think people are looking for more transparency these days though. People are questioning, and that’s how change begins. Thanks for commenting.

  27. I know I left a comment the first time this was published, but your post is timeless, and so I want to leave another one. :)

    Yes, I’ve already seen that ads and heard the buzz on the radio. Mother’s Day pink races. It really irks me. I want to enjoy Mother’s Day, and I will, but it doesn’t help when nearly every holiday seems tied to “breast cancer awareness.”

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