Monday, January 24, 2011

Komen By The Numbers

Living with metastatic breast cancer is a bit like playing an evil game of Whack-A-Mole. Chemotherapy, at this point, is more art than science.  Tumors come up and tumors go down and you never quite know where they're going to strike next.  You just keep whacking those pesky tumors and if new ones come up, you whack 'em again, and again, and again.  You just hope that you have enough chemotherapy hammers in your arsenal to be able to keep whackin' 'em before you lose the game.

In recent months, I've been following with interest the debate in the blogosphere, over the Susan G. Komen for the Cure® ("Komen") lawsuits with respect to apparent trademark violations over other charities using the phrase "for the Cure". Komen argues that trademarking the phrase, and protecting that trademark through legal strategies, is a form of stewardship of donor funds.  Many others see it differently. Indeed, the debate itself is also starting to feel like a game of Whack-A-Mole because as one question comes up, it's debated by some and whacked by others as Komen offers a superficial response.  In turn, the organization's official statements cause more questions to come up.  Whack! And so the game goes on.

If you need to get up to speed on where the debate currently stands, I recommend reading the following articles by Gayle Sulik, author of Pink Ribbon Blues, which also contain links to other news stories and essays on the topic, along with official responses by Komen.
Also check out The Accidental Amazon's recent article, "Hubris for The Cure".

There's no question in my mind that Komen has, and continues to engage in good works, but I fear their stated mission, and their actions are starting to get a little confused.    On their website, Komen clearly states that is their mission "to end breast cancer forever".  This mission ties in nicely with the organization's recent name change to Susan G. Komen for the Cure®. Straight-forward. For. The. Cure.

As a person living with metastatic breast cancer, I clearly have a vested interest in Komen fulfilling their mission; to end breast cancer forever, and more specifically to find me a cure.  But is it really that simple? Do Komen's activities actually support this mission?

In considering this question, I decided to go back to my training as a public accountant, a career that spanned some fifteen years, before I was forced to give it up to focus on my health and on-going treatment for breast cancer.  Financial analysis is my thing.

Audited financial statements are available on the Komen website covering years ended March 31st 2004 through 2009. After some pretty intense number-crunching, I was able to get a clearer picture of how Komen allocates it's donor funds and other revenue, and the amount and type of research they have invested in since they opened their doors in 1982.

First, as a non-profit organization, Komen's activities are divided into four major Program Services to which donor funds are allocated: (1) Research,  (2) Education, (3) Screening and (4) Treatment. The remaining funds go towards administrative and fundraising expenses.

From 2004 to 2009, Komen allocated a total of $1.54 Billion of "Net Public Support and Revenue" of in the following categories: Education 36%; Research 25%, Administration and Fundraising Expenses 22%; Screening 11%, and Treatment 6%.  See pie chart below.


Now it's a question of opinion as to how one might define activities that could possibly result in a "cure" for breast cancer, and it's a question that was raised by blogger Alicia Staley in her posts, "How do you define the Cure for Cancer?", and "Lawsuits for the Cure".  For me and the people I know who are in treatment for breast cancer, we understand a "cure" for our disease to mean that we will be completely healed and never have to worry about breast cancer invading our lives ever again.

However, Andrea Rader, corporate spokesperson for Komen, stated in response to Alicia's Staley's question;
"Research is just one piece of delivering cures for cancer. Education is critical: even today, many women don’t know they’re at risk for breast cancer, or they continue to believe myths like underwire bras cause cancer (they don't)." 
From this statement, Komen seems to be saying that "cures" for cancer result from other activities, in addition to research.  I must have missed that memo.  Education, screening and treatment won't "cure" my cancer.  Sure, by being "educated" I might be able to find out more about my particular type of breast cancer. By being "screened" I might be able to see if my cancer has spread.  By being "treated" I might be able to keep the cancer I already have under control.  But will any of these activities result in me being cured? No. The only hope that my cancer will be cured, is by research and research alone. The only way that breast cancer will be prevented, given that many of those diagnosed have none of the known risk factors, is through research.  Indeed, the only way we can "end breast cancer forever" is with research.  Education, screening and treatment activities deal with finding and treating cancers we already have, not curing them and not ending breast cancer now or forever.  Period.

Spending anything less than the bulk of its resources on research, clearly does not support Komen's mission of ending breast cancer forever.

In addition to the allocation of funds to other activities besides research, I analyzed how Komen allocates funds within the research category itself.  Of the total $1.5 billion raised from 2004-2009, Komen allocated $391 million to their Research program.  It costs money to run a research program, in this case $33 million, so $357 million of actual research awards and grants were made.  This means that from 2004-2009, Komen only spent 23% of "Net Public Support and Revenue" on actual research, down from the 25% allocated to the research program category.

Analyzing how the research dollars were actually spent and what types of research have been funded was more difficult.   Although some of the information is available on the Komen website, the reports provided require the reader to click on a map and go through each country/U.S. state to calculate total expenditures by research type.  Here's what I found.
Code's Defined by International Cancer Research Portfolio
(Click here for detailed definitions)







Since it's beginnings in 1982, through to 2010, according to its website research map, Komen has invested some $491 million in awards and grants to researchers in the U.S. and around the world. This sounds like a lot money.  However, to put this number in context it's necessary to compare it to "Net Public Support and Revenue" for the same period, which was not available on Komen's website.  From an accounting standpoint, one could calculate an estimate of total "Net Public Support and Revenue", using the average figure of 23% allocated to actual research, calculated from the 2004-2009 audited financial statements.

Estimated Total Net Public Support and Revenue for 1982-2010  


                                                   = Total Research Awards ($491 M)               =    $2.1 Billion
                                                  ____________________________
                                                   Average % Research Allocation (23%)


Thus Komen's total "Net Public Support and Revenue"for 1982-2010 would total somewhere in the order of $2.1 billion.  Now I have no way of verifying this number, since Komen does not provide the revenue data for the years prior to 2004, but  Komen's research media sheet, and factoring in operations costs, suggests that my estimates appear to be reasonable;
"Susan G. Komen for the Cure® is the global leader in funding life-saving breast cancer research. Komen for the Cure has invested nearly $1.5 billion in research and community health programs, nearly $465 million of which has gone directly to research. Since funding its first research grant in 1983, the organization’s commitment to research has grown at unprecedented rates."  
Of the estimated total public support and revenue of $2.1 billion from 1982-2010, Komen spent only $491 million on research.  This means the remaining estimated $1.6 billion was spent on everything else.  Does this seem like a commitment to "ending breast cancer forever"?

I have to wonder how much further we'd be along on the breast cancer research front, had Komen been more generous with their research allocation over the years.  At this point it seems prudent to point out that I am not alone in questioning the tactics of this country's breast cancer fundraisers and research protocols.  The National Breast Cancer Coalition states on their website;
"Hundreds of thousands of lost lives justifiably mock our acceptance of the fragmented, siloed, no-end-in-sight strategy currently at work. We couldn’t possibly do worse. The question we ought to be asking ourselves is, “How do we succeed, and what must we do differently in order to?” Over the past eighteen years, despite all of the funding and all of the walks and runs and gala dinners, annual breast cancer deaths in the U.S. have barely budged. They were close to 40,000 then, and they’re close to 40,000 now. If this is our definition of success, we need a new one."
Further they say;
"It’s time to move beyond awareness to action. It’s time to peel back the pink to see what’s really happening in breast cancer research, treatment, prevention and cure." 
All of this conduct by the United State's largest breast cancer fundraiser is starting to feel a bit unbecoming of a charitable organization. I can only hope that going forward, Komen do indeed honor their "organization’s commitment to research" and that their research allocation does grow "at unprecedented rates", as they state in their research media sheet.

Let's end this game of Whack-A-Mole. Change tactics and allocate more money to breast cancer research.  Perhaps then, we can all trust that Komen really is "for the Cure".

[EDITORS NOTE: Since publishing this article, the Komen research media sheet that I refer to in this essay has been replaced by an updated version.  A copy of the original version dated 10/29/09 is available by clicking here.  The new version, published by Komen during the week of 1/24/11, is available by clicking here.]

20 comments:

  1. Anna, wow. I commend you on your research and your ability to write about it so clearly. Numbers are not my thing, but the amount Komen has raised is staggering and though, it's true their research dollars are amazing, you're right to question why it isn't more. It will never seem enough if the number of deaths won't decrease.

    It's all so personal for us. For some never touched by breast cancer questioning Komen's intent while allocating that vast amount may seem odd, or unfair, but if you've lost someone to breast cancer or you're worried for yourself, then we have every right to hope each dollar does truly go to research, go for the cure. As you say, that's the only place the cure is coming from. Very well done.

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  2. Excellent work. I propose a research organization dedicated to the eradication of metastatic breast cancer, as Komen clearly doesn't have this at the forefront of its mission.

    With earlier, more preventatble cases of breast cancer? Yes. They have made terrific headway in that arena.

    Last fall, I did some research on inflammatory breast cancer. Of all the breast cancer clinical trials, there was only a smattering dedicated to IBC, a highly aggressive, tho rare, form of breast cancer. This is another terrible case of 'whack-the-mole.' Researchers go where the dollars are. It's time we raise our voice for women with metastatic breast cancer. Thanks to you, for your creativity and persistence in researching this article.

    Excellent work,
    Jody

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  3. Wow! You sure worked hard on this and I salute you for it. I don't feel qualified to weigh in on this debate but I really commend you for your cogent and well researched approach to this debate.

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  4. Anna, I'm glad there are people like you qualified to analyze the numbers for the rest of us. It's so hard to be critical of the big K, because on the one hand it feels ungrateful, but on the other hand, clearly they are not funding research "for the cure" adequately. Plus, I agree with Jody about IBS and METS. Komen seems so focused on early detection and while that is great and necessary, it's not "the cure" as you continue to point out. Voices are starting to be heard. Just last night I saw a piece on our local news where a woman was taking issue with the big K (and I don't mean Kmart). She wanted to do a fundraiser and use the phrase "Mush for a Cure" and had been blocked by K. It was really eye opening. Anyway, keep making noise because I think people are starting to listen and maybe K will make some changes??? Eventually??? Thanks for the work on this. It boggles my (already boggled) mind.

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  5. WOWZA! I'm putting this on my blog today! You Rock!!

    Katie

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  6. Anna, thanks for this. It's about time someone made sense of the numbers the Big K tosses around. Personally, I think Komen is hardly living up to what they profess to be doing. I say, if "For the Cure" is part of your moniker, then you better be about finding a cure. Even the amount spent or "research" doesn't really say anything. What the heck is being researched? Treatment and CURE are two totally different things. And I'm a six-year survivor who lost my mother to this stupid disease, so trust me, I'm aware. Message to Komen: Enough with the pink ribbons; CURE this b*tch already...

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  7. Dear all, thanks for taking the time to comment on this important issue. My goal in all of this is to let the numbers speak for themselves. I'm not against Komen, but I am against the % that they allocate to research. It's just not enough. It's not too late for Komen to change tactics and strategies and really harness the power of the goodwill they have built up over the last thirty years. If only they would engage, listen and answer our questions. Research IS the only way we can end breast cancer forever, and whilst they're at it, it would be nice if they could throw a little more change to metastatic breast cancer research. Nationwide, mets receive less than 2% of research funding. But that's another blog post........

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  8. Great post Anna.

    Komen, by your research Komen, looks very similar to ACS in their spend profile. Can I ask how different they are? If not too dissimilar, why do we all invest in two overheads and two organizations? They should merge.

    Komen, for the Education, the Treatment, the Screening and things including the Cure.

    Not as sexy a tagline.

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  9. Great post, brilliant use of a calculator. You do, indeed, ROCK!

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  10. Terrific, informative blog Anna. And thanks for mentioning NBCC. We feel the same frustration. NBCC has had ending breast cancer as its mission since 1991. Though we've had successes with our goals of increasing federal research, increasing access to care, and increasing the influence of advocates, we haven't seen progress in lowering deaths from the disease. We agree with you that research is the key to ending breast cancer. But we also believe the current system and focus of resources isn't going to get us there. It won't just take more research but the right research. Because of our frustration at the lack of progress we chose to set a deadline for the end of breast cancer - January 1, 2020 - and have developed a strategic plan to make it happen. We believe that ending breast cancer means learning how to interrupt or prevent metastasis and learning how to prevent the disease all together. So we are organizing Summits in these two areas and bringing together leaders in science, industry, government, and advocacy to prioritize the most important research questions. And we won't stop there. In 2012, we plan to hold catalytic workshops with scientists to get the work done on answering the key questions. To learn much more about our Deadline work and to get involved, please consider attending our Advocacy Training Conference April 30 - May 3 in Washington DC. Scholarships are available.

    http://tinyurl.com/45gp6f

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  11. PS, I left off a number in my url for information on the conference. Here is the correct url:
    http://tinyurl.com/45gp6f9

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  12. Thank you, Anna. The numbers tell an important story, and you've articulated them so clearly. These are just the kinds of facts we need to inform the direction of breast cancer advocacy.

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  13. Please note that there is a group specifically dedicated to metastatic breast cancer research: It's called Metavivor: www.metavivor.org.

    Last year this Annapolis, MD-based group raised $50,000 to fund the work of Dr. Danny Welch, a UAB researcher--he was the one that pointed in the NYT that MBC accounts for 90% of the morbitity/mortality but gets 5% of breast cancer funding.

    The Metavivor financial statement is this simple: $50,000 raised and 100 percent of those funds investedin MBC research.

    Anna, as an MBC woman do you ever feel at odds with the advocate groups? Some women tried 5, 7, even 10 chemos. They have only experimental options. How does that jibe with the methodical drug review process advocated new drugs? I wonder if this divergent reality is at well understood.

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  14. I've only recently become aware of the Metavivor group and am watching their work with a vested interest. The drug options for metastatic women are indeed a minefield. I'm onto my third option in less than a year, and it just feels like we're running down a list. More art than science. Why? Because there's such a limited understanding of how to stop mets once they begin and how to prevent them in the first place. This is why I am speaking out about the research issue. The current research situation is a disgrace, and it's not good enough that for many mets women, becoming a lab-rat is their only option.

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  15. CureToday Magazine Blog:
    Komen for the Cure & Breast Cancer Action

    BY KATHY LATOUR | OCTOBER 27, 2010

    ...bashing Komen is old hat and we've all heard it, but this year it got to me on a new level -- as a journalist and someone who has taught nonprofit management and sat on many boards of directors.

    Brenner is the Executive Director of Breast Cancer Action, whose self defined goal is to be the watchdog of the breast cancer movement. ..


    ...It's not that [Brenner] attacked Komen... it's that she doesn't have her facts straight

    Let's look at exactly what she said, which you can confirm by listening to the interview

    First, she says that Komen paints "too pretty a picture" of where we are with breast cancer."

    OK, so some women don't want to be associated with a pink ribbon. That's fine, but thousands of women do, myself included...But if that's not your bag, fine. Just don't tell me what to do.

    ...The fact that Komen mobilizes tens of thousands of women across the country and the world to be educated about cancer is a pretty picture? What is she talking about?

    Then she said that "when companies put a pink ribbon on a product, we are in trouble." Lyden finally followed up with a question on that one, asking her why.

    [snip]

    Here are some facts about Komen and the money they raise.

    The 127 races that are held by Komen affiliates around the world raise a lot of money--yes. And 75 percent of those funds stay in the community where they were raised to be used on all kinds of breast cancer related needs. Each affiliate sets its own guidelines, but they award grants in their area to non-profits, including hospitals, that provide such services as screening, diagnostics, and treatment as well as programs to educate and raise awareness. Some fund services such as expenses for survivors like transportation to treatment.

    In the '90s I was founding president of the board of two nonprofits in Dallas that addressed breast cancer. The first, a group called the Bridge Breast Network, assists uninsured women with diagnosis and treatment. We started the group with funding from memorials for my mother, who died of breast cancer in 1992, and then we had the very arduous task of fund raising for a start up that provided medical care for women with breast cancer.

    Had it not been for the Dallas Affiliate of Komen, we would never have gotten off the ground. And the women we served--all of whom did not have insurance and many of whom were minority--would not have had treatment. When we started Gilda's Club North Texas, the funding also came, albeit at lower amounts because we had to prove the numbers of our members that were breast cancer survivors. Komen affiliates do their homework on every grant.

    The other 25 percent of the money raised by the Komen affiliates goes back to Komen National and is directed to research – all of it. So where does the money come from to run the organization: corporate sponsors.

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  16. From Kathy LaTour (Cure Today Magazine) Oct 2010 blog:

    Here are some facts about Komen and the money they raise.

    The 127 races that are held by Komen affiliates around the world raise a lot of money--yes. And 75 percent of those funds stay in the community where they were raised to be used on all kinds of breast cancer related needs. Each affiliate sets its own guidelines, but they award grants in their area to non-profits, including hospitals, that provide such services as screening, diagnostics, and treatment as well as programs to educate and raise awareness. Some fund services such as expenses for survivors like transportation to treatment.

    In the '90s I was founding president of the board of two nonprofits in Dallas that addressed breast cancer. The first, a group called the Bridge Breast Network, assists uninsured women with diagnosis and treatment. We started the group with funding from memorials for my mother, who died of breast cancer in 1992, and then we had the very arduous task of fund raising for a start up that provided medical care for women with breast cancer.

    Had it not been for the Dallas Affiliate of Komen, we would never have gotten off the ground. And the women we served--all of whom did not have insurance and many of whom were minority--would not have had treatment. When we started Gilda's Club North Texas, the funding also came, albeit at lower amounts because we had to prove the numbers of our members that were breast cancer survivors. Komen affiliates do their homework on every grant.

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  17. Dear Anonymous. Thank you for taking the time to post these comments. Indeed, education, screening and treatment programs are important dimensions in diagnosing and treating for breast cancer. Komen's tagline is "for the Cure" and their stated mission is to "end breast cancer forever". It is my opinion that a cure and prevention of breast cancer will only come from research. I am sure that if you asked most people who donate to Komen why they do so, they would tell you it is because they want to see a cure for breast cancer. I am not attacking Komen's work in the areas of education, screening, and treatment, and nor am I attacking the work of the many Komen volunteers. I am simply asking the question of whether we believe Komen's research program allocation of 25% is enough to realize their stated mission of "ending breast cancer forever". Do you think 25% is enough?

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  18. I posted a blog on this subject, so click link below to read and also I provided a link to your blog on my site, plus it will appear in patch.com. Hope to create some awareness to the issue.
    PS: I heart your pie graphs, they really bring it home and make it easy to read. I hope my readers will stop by here and check this article out.

    http://www.mybreastcanceranswers.com/blog/komen-backlash-among-breast-cancer-survivors

    Your Friend,
    Heather Flanagan,
    Founder, My Breast Cancer Answers
    www.mybreastcanceranswers.com

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  19. If this article interests you, check out the trailer for an upcoming documentary on the subject: Pink Ribbons, Incr

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    ReplyDelete