For The Cure, Or Not?

The following print advertisement appeared in the January/February 2012 issue of the Brown University Alumni magazine.  Beneath the title, which read "Every 74 seconds a woman dies of breast cancer", was the following text:

The first item that struck me, in the above advertisement, was the logo.  Where's their famous strap line, "for the Cure"?  Compare to the logo at left that currently appears on Komen's website.

Does the dropping of the strap line represent yet another rebranding effort for the Komen organization?  Are they seeking to take the emphasis off being for the cure, in order to lower the public's expectations and avoid the criticism by the likes of the "Grumblers" with respect to Komen's spending priorities, specifically the relatively low amount allocated to research?

If this omission of the strap line does indeed represent a rebranded logo, then I have to wonder where the last thirty years and over $2 billion of funds raised actually went?  Is Komen finally admitting that funding research will never be their top priority, and that a reach-for-the-stars strap line is simply not delivering the kind of success metrics donors and the public alike might be starting to look for?

As I said I don't know if this a rebranding exercise.  Or whether Komen just picks and chooses which logos to use depending on the publication, but I'm keeping my ear to the ground on this one.


Next I looked at the text of this advertisement, which, as usual,  is full of decontextualized factoids and sound bites.

"Last year alone we funded more than 700,000 breast screenings"

To this factoid I say, so what?  Is the number of breast screenings the metric which Komen uses to define its success in early detection? Wouldn't a better metric be the number of deaths that were prevented as a direct result of screening and so-called early detection?  Trouble is, this kind of metric could only really be proven if the person screened ultimately died of something other than breast cancer, and would require a long-term research study.  As we know, people who are diagnosed early can still go onto develop metastatic breast cancer.  In fact, I personally have met a number of women, originally diagnosed at Stage 0/I, for whom this happened.

So of the 700,000 screenings, it would be far more useful to know how many women were diagnosed with invasive cancers? How many of women went onto develop metastatic breast cancer?  How many lives were really saved out of the 700,000 screenings?   Only then can the donating public really understand whether the "700,000 screenings" indicates a level of success worth investing in.

Recent studies have suggested that breast cancer screenings can result in a 20-30% reduction in breast cancer mortality rates.  But as Gayle Sulik, author of Pink Ribbon Blues aptly points out;

If the reduction in mortality is only 30 percent or less depending upon the country, the context, the follow-up, the level of expertise of providers, and the individual profiles of the women (and this is a short-list of just a few caveats), then what are we doing for the remaining 70 percent? [Editor: Emphasis added]

For the world's largest breast cancer organization to crow about 700,000 screenings without providing relevant success metrics is simply not good enough.

"We helped 100,000 people financially through treatment" 

In 2010, Komen spent about $20 million or 5% of their budget on treatment.  For 100,000 people helped, this equates to about $200 per person.  Whilst any money is good money to those in need, realistically $200 would pay for about fifteen minutes of consultation time with an oncologist.  I've been in treatment since 2004.  My first year alone, I paid close to $10,000 in charges that my insurance didn't cover.  What if I didn't have insurance?  $200 would be nice, but it certainly wouldn't even scratch the surface in terms of financial help for treatment.

Given that poverty has been associated with higher cancer mortality, I would argue that treatment assistance should be much higher in Komen's spending priorities, not the lowest as it currently is now.

"We educated millions about breast cancer"

Yes, to the tune of $141 million in 2010.  $141 million or 37% of Komen's annual budget, and Komen's number one spending priority by far!

Compare Education spending to their other allocations.  Extraordinarily high.

"We invested $66 million in breast cancer research and related programs"


It's interesting that this is the only dollar amount mentioned in the ad copy.  And yes, $66 million is a lot of money, but when compared to Komen's total revenue of $389 million in 2010* , and the amount spent on education, it's clear that research comes up far short in terms of priorities.

And perhaps more so in the future if Komen is indeed no longer interested in being for the cure as the ad logo would suggest.

* Note that 2011 financial statements are not yet available.

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Given Komen's relentless pursuit of the almighty dollar, and its almost megalomaniacal status as the world's leading breast cancer organization, is it not time for Komen to be more transparent about where it's future priorities lie and how it evaluates it's success? 

Don't we, as the donating public, deserve better?   

Come on Komen, what's your plan for the next $2 billion, and if you are no longer for the cure, then what are you for?

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.

• "The Battle "For The Cure" - The Phrase, That Is."
• "Poor Pink Goliath"
• Susan G. Komen for the Cure® Sells Out the Pink to Get the Green

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.]

Up Yours Stupid Statistics !

I'm taking a few days off from the Cancer Culture. There's so much noise in the media right now, what with all the squabbling going on about mammography and whether it's worthwhile in women under-50, how much it costs over a woman's lifetime, whether saving 1 life in 1900 is really worth it, how mammography might actually cause breast cancer in high-risk younger women, blah, blah, blah.

It's all a bit overwhelming for this particular woman who is under 40 years old, has a serious case of breast cancer, and falls outside every breast cancer statistic the research geniuses have ever put out there. So I'm escaping for a couple of days to just go and enjoy myself, turn down the volume and remember why my life is worth saving no matter the cost or what the stupid statistics say.

The Screening Debate

There's been a lot of coverage in the news this past week about recently issued guidelines, by various organizational bodies, pertaining to recommended screenings for women for both breast and cervical cancer. On the breast cancer front, mammogram, as a routine test, is only officially being recommended for women over 50, and for cervical cancer, Pap tests are only being recommended for women over 21 and only once every two years.

After having the "early detection saves lives" messages rammed down our throats for the last 20-odd years, predictably there's now much consternation and brouhaha over these changes. Many of my friends have been asking what I think about this latest set of developments in the the World of Cancer.

So here's my two-cents for what it's worth.

If you've been doing your reading on the subject of breast cancer screening, you would know that these recommendations aren't new. In fact, the debate on this issue goes back at least as far back as the early 1970's. (See recent New York Times article, New York Times Op-Ed column, and Breast Cancer Action press release). The boffins have long known, that STATISTICALLY speaking, early detection and so-called breast cancer awareness, doesn't actually significantly alter mortality rates or outcomes at least as far as breast cancer is concerned.

All it's really meant for many of the breast cancer-stricken population is that they are simply in treatment for longer which may or may not be helpful. The reality is that for many women, breast cancer is still an aggressive disease for which there is still no cure. The thinking has been that the earlier your cancer is detected, the better the chance that you get to live a little longer, and of course the drug companies still get their annuity. On the flip-side, because of the over-success of the "early awareness" campaigns by the Pink Ribbon brigade, some detected cancers are being unnecessarily treated and/or operated on when in reality so they are so low-grade and slow-growing that they would have been better just left alone.

Statistically-speaking, the number of deaths prevented in screening women under-50 comes out to something like 1 in 1900 (a statistic apparently deemed uneconomic and insignificant by the boffins). Well I guess that's reasonable so long as you're not the 1 woman out of 190o, right ?

So this is all well and good, and I don't necessarily disagree with the new recommendations, but the bottom line is this. Both the old and new guidelines failed me, and will continue to fail those women who fall outside the statistical norms. Let's not get caught up in statistics when it comes to our own bodies. Let's have policies and a health system that encourages us to be our own advocates. Let people make up their own minds, in consultation with the medical professionals, as to whether they want the stress and other risk factors associated with cancer screenings.

If you think something is wrong, find your voice. Be heard. You might just save your own life.