Here is the latest Komen ad : “Komen’s Commitment to Women Living with Metastatic Breast Cancer.” We at MBCN are happy that Komen is continuing its first formal effort to acknowledge people living with metastatic breast cancer and featuring people like us in their ads. (Ironically, few people realize that Susan G. Komen died from metastatic breast cancer.)
We all have a story to tell and we can be inspired in writing the story and in reading others’ stories. Our organization actively solicits stories such as those of Cindy and Bridget, the two people featured in this Komen ad. Some stories are inspiring, as those of Cindy and Bridget; however, many stories are of perseverance in the face of uncertainty and discomfort.
Like Cindy, I love to read stories by people who are living with metastatic disease for a long time–MBCN even has a special section showcasing the stories of those living with mets for 10 or more years. (See http://mbcn.org/get-involved/category/10-years/) But it is an awfully small section– living with MBC for 20 years or even 10 years is rare. While I applaud these uplifting stories, I am a realist at heart. We can’t exaggerate the progress that’s been made in metastatic disease. Despite these outliers and despite our own advocacy efforts, metastatic breast cancer continues to claim 40,000 lives annually in the U.S.; a figure that remains largely unchanged for the past two decades.
Moreover, Cindy’s doctor who said metastatic disease is a marathon vs. a sprint is absolutely correct. But, the Komen ad makes a confusing connection between Cindy’s three clinical trials and being on treatment for life. ALL patients with metastatic disease are on treatment for life; some are good candidates for clinical trials and some aren’t. But they will all get some kind of lifelong treatment. Also, men do get metastatic breast cancer–so the “estimated 155,000 women living with MBC in the U.S.” should actually read “women and men.”
And then there’s Komen’s commitment to research. Komen proudly announces that they spent $35 million in funding metastatic research over the last six years. That’s great! Millions! Well, wait a minute. This is $35 milllion vs. the $2 billion of the total Komen pie for the last six years. (That’s not a typo: “Billion” is correct.) Therefore, Komen is spending 1.7% ( round it up to 2%) of the total funds raised for the purpose of metastatic research.
So for every $10,000 raised by Komen, about $200 goes to research to help Cindy and Bridget and all of us with metastatic disease.
In other words, if breast cancer funding were a giant Monopoly board, we are the “Go” square. Everytime Komen passes our corner with $10,000, MBC research collects $200. Well, $200 is nothing to sneeze at, but we’ll never win if we don’t get some real property. Please don’t keep passing us by. Stay awhile–make some real MBC investments. Imagine what we could do if we had the research equivalent of three hotels on Illinois Avenue!
So thank you, Komen, for including our stories and acknowledging October 13 as Metastatic Breast Cancer Awareness Day. It’s a good start, but we hope it’s just the first step in a plan to really commit to stopping metastases. The best way to honor all of us with MBC and those who are no longer with us, is to seize the day–October 13– as an opportunity to commit to a substantial increase in metastatic research funding. Komen, are you listening? We look forward to your October 13 press release.
Ginny Knackmuhs and Katherine O’Brien
MBCNbuzz 
Reblogged this on ihatebreastcancer and commented:
So for every $10,000 raised by Komen, about $200 goes to research to help Cindy and Bridget and all of us with metastatic disease.
Respectfully, Ginny and Katherine, your numbers are wrong. Komen has invested $2 billion in it’s mission over its 30 years of existence – about $700 million in research (, and $1.3 billion in community programs and grants to fund education, screening and diagnostic services, treatment and survivor support programs, and more – based on unmet/unfunded needs in Affiliate communities.
This type of misinformation is disparaging to the impact Komen makes every day. And based on the comments by others who read this article, I hope you will consider correcting the information and acknowledge that a mistake was made.
Komen has invested more in breast cancer research to find causes, cures, better treatments and better screening methods – than any other non-profit organization or charity – second only to the federal government. Rather than criticizing and condemning this organization and its impact, you could choose to be part of the solution. Collaboration rather than competition will help us all accomplish our goals much more quickly.
With all due respect, Komen does a fine job disparaging themselves all on their own. To suggest MBCN or anyone else is tainting your reputation only resonates the organizations inability to accept responsibility for their actions, or those of the (legendary) Nance Brinker, which are well-documented and outrageous.
Further, “education” is a euphemism for “awareness” and no amount of awareness will determine the cause, prevent, or cure breast cancer. And much of Komen’s awareness is nothing more than expensive, high profile events. Also, Komen has been widely criticized for using misleading statements and survival statistics in their marketing campaigns (British Journal of Medicine, Aug 2012).
So perhaps before Komen (or their self-appointed flack) gets defensive and blames someone else for their skewed and distorted image, perhaps they need to take a long look in the shiny pink mirror.
I haven’t even touched on pinkwashing and Komen’s dubious partnerships with the likes of KFC and alcoholic beverage companies (both of which are known risk factors of BC, which Komen includes acknowledges on their own website). A bit hypocritical, don’t you think.
Cry me a pink river, Komen.
You are doing a disservice to ALL individuals diagnosed with breast cancer. Komen isn’t perfect, has made mistakes, learns from the mistakes in order to make a greater impact in the future. You didn’t even accept responsibility for the incorrect investment percentage into MBC and all research by Komen, which was the point in my response.
You may want to take a look at your goals and your approach to accomplishing them, if you are truly looking to make a change. Correct information, credible and committed organizations and advocates with a shared vision can accomplish important work. Best of luck to you.
CMP
Let me clarify the numbers we cited. Komen in their first ad with a metastatic patient which we reprinted in the blog stated that Komen spent $35 million on metastatic research. We know they have spent most of their funds on other areas-awareness, education, etc. We are simply focusing in on what they have done in terms of research for METASTATIC breast cancer, which is breast cancer that is incurable and ultimately deadly and fatal. Susan G. Komen died of metastatic breast cancer.
We then simply put the Komen stated figure of $35 million in a 6 year period into context, using the audited financial reports on the Komen website for what they have raised in the last 6 years.
We at MBCN are willing to work with Komen. We have participated in the Komen roundtable and we would love to sit down and dialog further with Komen on how they can turn their enormous fund raising ability more toward desperately needed research and specifically metastatic research.
Yes, we’d like to believe that Komen can change, but then another bombshell drops. Since this ad was run, Komen has changed the figure from $35 million to $79 million!! (Just click on the link in the blog labeled Komen Ad and compare it to the original ad reprinted in the blog.) Amazing! Does that mean in the space of less than a month Komen spent another 44
milllion on metastatic research? Whose numbers are wrong now?
Ginny
This was a terrific post, and a very informative and well-done explanation. thank you, Ginny and Katherine, for explaining this. the monopoly analogy is spot on!
I’m curious, though, does anyone know if Komen truly has committed to a change in the future?
Right on!
Ginny and Katherine,
Great piece of writing. I just hope that it gets to those people at Komen who can make the decisions. A lady with MBC on the Crazy Sexy Life website told the forum about a meetig she had with the Komen people in her state and she said that they were very receptive so perhaps the message is slowly filtering is way through the Pink hype.
Ever grateful for the work you do for us all ladies …thanks a million. Only wish I could do more to help the cause.
Jo
Don’t you all just get the feeling that this is a case of desparate back-tracking to show how much they care. The reality is that they care 1.7% and not 30%+ which it should be.
[…] Komen campaign for MBC: Commitment?. They care 1.7%! Great, they contribute $35 million to Metastatic Breast Cancer research, but their budget is $2 BILLION. They are at last acknowledging the existence of MBC but for me it is more PR than commitment. Share this:TwitterFacebookLike this:LikeBe the first to like this. […]
Reblogged this on Inspiring Metastatic Breast Cancer Advocacy and commented:
How much do they care? 1.7%!
You are responding based on incorrect information.
They need to send the memo to all their state chapters because obviously, the Houston chapter was not aware of Oct 13th being NMBCAD when they asked the Houston City Mayors office to turn on the city hall lights pink during the first 2 weeks of “Pinktober” INCLUDING the 13th!!! Yes, they needed the lights on for they’re “Race for the cure” in downtown on Oct 6th!!! Was Komen affiliates that blinded by their PINK that they were not aware of an official day the was lobbied for in Congress back in 2009!!! Did they forget or did they just not care!!! Because they sure as heck HAD to know!!!!
I’m going to break the numbers down for the chemobrain challenged (that would be ME) so it’s EASY to understand. They had 2000 millions to spend. Mets got 35 of those. Where did the other 1965 go?
To me, I’m sorry, but this is still slapping a ribbon and making it pretty. Those who know me, know I am not a mets patient but I’m comfortable enough to say, “Not Nearly Enough” …
REAL metastatic stories are still a stain on that ribbon. Once again, SGK persists in selling hope. We are not going to “Hope Our Way to a Cure” …..
Tell me what you want me to do… and when…and I’m there…
With love,
AnneMarie
Most of their money goes to early detection education, screening and treatment, A large portion of their fundraising goes back to the local chapter, so not a lot left for research. Very ironic for an org that is “for the cure.” here is link to their financial reports:
http://ww5.komen.org/AboutUs/FinancialInformation.html
What to do? Keep up the pressure!
Hence the problem. “Education” is a euphemism for “awareness”. Spending millions of dollars turning cities, towns, and monuments pink and hosting other extravagant events is not money well spent. Let’s say hypothetically, such an event costs $500K to produce and results in 500 women getting their mammograms/ And of those women, 100 are subsequently diagnosed with BC — of unknown stage. If you divide the cost of the event out, each diagnosis cost $5,000. Even though the example is basic and completely hypothetical, it illustrates the point that that SGK is paying an awfully high price per person to promote “awareness”. And in too many cases, “awareness” doesn’t translate into “action” because women fear the diagnosis.
Further complicating “awareness gone wrong”, there are women who (wrongly) believe that mammograms “prevent” breast cancer and Komen’s marketing (aka “education”) materials were called into question by the prestigious BMJ — for misrepresenting survival statistics as well as benefit of mammograms. Haven’t yet heard a peep from Komen touting the recent success of the Dense Breast legislation that has now passed in 5 states. THIS is important information/education for women and where is Komen in communicating this?
Awareness/Education are not a replacement for Prevention, Action, or Research. The CAUSES of BC to begin with are equally important as finding a CURE for metastasis. In fact, Komen also needs to use a lot more discretion vetting their corporate partners. Allowing marketers to use the pink ribbon on products ranging from alcohol to high fat foods (which are both known BC risk factors) or those that contain BPA, estrogen disrupters, parabens, GMOs, etc. which have also come under suspicion is pinkwashing of the most irresponsible kind. And Komen allows this. Read your labels. And read the fine print — most times, only pennies on the dollar (up to a pre-established maximum) are given to the cause, leaving the marketer to profit handsomely from the pink ribbon while probably also getting a charitable write-off.
THAT is where the majority of money is going … in addition to supporting SGK’s infamously bloated overhead.
While I acknowledge SGK making a bolder move into the MBC world, as AnneMarie points out, it is NOT enough. Hold them accountable.
Do they really care or are the just reacting to pressure.? It seems to me to be on the safe side we need to do all we can to keep the pressure up. Great explanation Ginny and Katherine
I’ve never understood the thinking behind Komen. I mean, the founder’s sister died of metastatic disease. Funding for research should have been the priority from day one. They got caught in the awareness web, and then the perks and fame and money for Nancy started flowing in, and they completely lost their way.
They have a long way to go to get this metster’s support.
And, they are off to a rocky start with this campaign. Starting with two women with mets, one who works for Komen and one who “speaks well” doesn’t do much for me. Perhaps they should look outside the organization to regular women, like myself, trying to live with mets. Then they would know that “medical jargon” is hardly a problem and stop, once again, wasting money on things that are unnecessary, such as more pamphlets and brochures – which still goes under the “awareness” hat.
In the meantime, charities like Stand Up 2 Cancer are getting it right from the beginning, with ALL of the money raised going towards research.
I ever wonder, in her quiet moments, does Nancy Brinker ever remember her sister and realize that nothing she’s done to date would have saved her sister? Early detection leading to cure is a myth. Finding the causes of metastatic spread is more important than finding cancer early, and had she focused on that from the very beginning, who knows where we would be standing now? Maybe we wouldn’t be in treatment forever (a very short forever) maybe we would be cured. She might be considered a hero rather than a joke by those of us in the mets community.
“Employees don’t call her ‘Nancy,'” according to this report: http://www.thedailybeast.com/articles/2012/02/13/komen-founder-nancy-brinker-s-puzzling-expense-report.html “They are expected to call her Ambassador Brinker.”
We’ve all seen the Facebook nonsense (turning it pink for awareness, “games” with cryptic clues. I think we should create awareness by turning ourselves into an army of Nancys for MBC Awareness Day on Oct. 13. Of course many of us will be in Chicago for the MBCN Conference. But on FB, just for Oct. 13, I will be NancyKatherine. Are you with me, NancyGinny? NancyAnne, how about you? C’mon you Nancys!!
Hi… I’m nancy Karla and I’ll be at the conference in Chicago next month..,, LET’S MAKE SOME NOISE LADIES !!!!
I’m actually hopeful that the cat is out of the pink bag and komen WILL feel pressure to do the right thing.
Just can’t happen fast enough !!!
Nice to meet you, NancyKarla! Look forward to seeing you on Oct.13 in Chicago!
Rock on,
NancyKatherine
Komen seems to hide a lot. For one, they financially support planned parenthood which of course means they support abortions. There is medical documentation that abortions are directly related to breast cancer, even if spontaneous. My personal feeling….. I will not purchase anything with Koman’s name on it!
Abortions have nothing to do with breast cancer. That is a far right myth. Please don’t repeat it unless you can cite credible scientific studies. The NCI says there is no scientifically established connection. http://www.cancer.gov/cancertopics/factsheet/Risk/abortion-miscarriage
This petition will be presented to the NBCAM Collaborating organizations to change October to Metastatic & Breast Cancer Awareness Month. There is NO CURE for Metastatic Breast Cancer (Stage 4 or mBC). One person dies every 13 minutes from Metastatic BC. Every October there is a group that goes unnoticed in a sea of pink. That group is composed of the men and women diagnosed with metastatic breast cancer or mBC. Metastatic Breast Cancer is stage 4 breast cancer where the disease has spread to distant metastases, primarily, to the bone, lungs, lymph nodes, liver and brain. Ironically, Susan G. Komen died of mBC and yet very few people even know that mBC is different from Early Stage, BC. There is no cure for MBC. The median survival after diagnosis is 3 years. There has been no statistically significant improvement in the past twenty years. Only 2-3% of research funds goes to finding a cure for mBC, yet nearly 30% of Early Stage, BC patients metastasize and die. So, lost in a parade of pink, no one sees the isolation, the despair and the hopelessness of those afflicted with mBC. By referring to October as Metastatic & Breast Cancer Awareness Month, it will raise awareness of mBC, encourage more money towards more mBC research (ideally, 30% for 30%) raise standards of care for ALL stages of BC and end this horrible disease.
Petition Letter
http://www.change.org/petitions/nbcam-collaborating-organizations-change-october-to-metastatic-breast-cancer-awareness-month
Please sign the petition and pay it forward….
http://www.change.org/petitions/nbcam-collaborating-organizations-change-october-to-metastatic-breast-cancer-awareness-month
[…] for awareness, early detection, and refined treatment, men and women are dying of breast cancer. One estimate puts Komen for the Cure funding for MBC research at 2%. And “an analysis of cancer […]
[…] | We need more metastatic breast cancer research. Orenstein confirms what MBCN and METAvivor have said for years. Metastatic breast cancer research is appallingly […]
[…] | We need more metastatic breast cancer research. Orenstein confirms what MBCN and METAvivor have said for years. Metastatic breast cancer research is appallingly […]