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.

************

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?

2012, With No Apologies to 2011

We're well past January 1st, and I thought by now I'd have something meaningful and inspirational to say.  The blogosphere has been ripe with posts of self-reflection, transcendence, gratitude, resolutions and three words to guide us for 2012.

As for me readers, I've got nothing.  Except if you count the phrase "I'm still here" after my own annus horribulus in 2011, as my important three words.  Yes, that will do.

I also kicked off the new year with an invitation to my 25th high school reunion in November, of which my first thought was not "Do these jeans make me look fat?", but rather "Will I make it?", and by that I don't mean with some long-lost high school paramour.

That's the thing about metastatic cancer.  I'm feeling pretty good right now, even in my one-handed chemo-fogged state, but with the disease at this stage, you never know what fun is just around the corner.  The game can literally change overnight.  And I don't say that from a hopeless kind of perspective. In fact I'm far from feeling like that, it's just simply fact.  You never know.  [Editors Note:  Please don't come at me with the "hit-by-a-bus" analogy unless you want a serious tongue lashing].

Anyway I think I'll RSVP to the reunion with a "Yes! So long as I'm not dead or otherwise indisposed with collapsed lungs, chemo sickness or some other cancer-related crap".

So what I do I want for 2012?

Above all, medical stability.  Medical instability of the cancerous kind is highly inconvenient, especially with all the travel I dream of catching up on this year.  It's also not a good look for a high school reunion.

Secondly, I'd like to resurrect my Can-Do Women blog.  I was off to a really good start in the first half of 2011, then medical instability for the second half sent that priority to the bottom of the pile.  Incidentally, I'd welcome contributors to that blog if anyone feels so inclined.  Check it out.

Third, I resolved before Christmas to give my local in-person support group another chance.  I went to one session in December and of course I hated it.  One too many narcissists who love the sound of their own voices for my liking.  Huh? Bloggers, narcissists?  Noooooooooo.  Anyway, I've decided to give it a couple more attendances, and if nothing else I'll view it as an unacademic social experiment which should provide ample blogging fodder for the foreseeable future.  Unless Lucy Loudmouth decides to shut her mouth and let someone else talk, or I grow some balls and tell her to shut the hell up.

I also might try working on this "gratitude" thing that everybody seems to be buzzing about, even though the words gratitude and cancer don't go together in my mind.  Unfortunately, I tend to misbehave with exercises like this.

I'm GRATEFUL that I have at least one working hand.

I'm GRATEFUL that metastatic cancer is such a pile of crap that at least I have something to blog about.

I'm GRATEFUL that my dog only rolls in skunk excretions once a week.

I'm GRATEFUL that I have so little wherewithal to do much of anything around the house that it gets me out of all the chores I hate (with apologies to Beloved).

I'm GRATEFUL that so many breast cancer organizations are a waste of space, and that I still possess the energy to bitchblog about them.

I'm GRATEFUL that I still have blog readers despite my penchant for sacrilegious snark.

And with that dear readers, I'll leave you with these wise words and wish you all a Happy, Peaceful and Medically Stable 2012.

"Never go to a Doctor whose office plants have died" (Anonymous)

Th 80's have a LOT to answer for!

Out From Under

Beloved and I just celebrated our seventh wedding anniversary. We were married in 2004, whilst I was in the middle of my first treatment for breast cancer. I was bald, just out of surgery, sick from chemotherapy, but we were determined that cancer wasn't going to stop us from starting our lives together as husband and wife. And with lots of loving help from my mother-in-law, we pulled off what I think was a pretty perfect wedding, given the circumstances.

Fast forward to this past weekend, our anniversary and here I am bald and sick again.  The little crop of hair that had somehow miraculously sprouted over the first part of the year, giving me hope that at least I was going to be spared the hairless indignity for a bit decided to fall out in tufts. So once again I sat in the little green chair in our garage, whilst Beloved shaved my head with the clippers that we keep for what now seems like a regular occasion.

Happy Anniversary to us.

This week I finally finished my emergency course of radiation. It's been a very long haul and has taken a lot out of me. Think transformation into a very old woman very quickly.  I've seen some small improvements in my hand, but wont know really whether it will continue to improve or not. Only time will tell. Or whether the radiation has indeed stopped the progression in the nerves to stave off any more damage. Nor whether the next new chemotherapy will work, or for how long, or for what gain. We just don't know. Nobody knows.

The thing is every time I think about my cancer, I feel like I need to make some profound statement to keep raising hell about the state of metastatic cancer, it's research, it's treatment, it's lack of support resources, and for all the crap those of us living with it constantly deal with. But I'm really just getting to the point, where there's no bigger statement that I can make other than this is just my damn life and I'm deeply unhappy about it.

This cancer just directs every part of my life. It keeps me a slave to medications and their schedule. It keeps me a slave to the side effects of the medications. It keeps me a slave to the energy I have on any given day. It keeps me a slave to how I look and feel. It keeps me a slave in a body that I no longer recognize, a hand that no longer works. It keeps Beloved and I slaves to the next bit of news from the next batch of tests and scans. It keeps us slaves to the constant threat of the unknown, which as we keep learning, can change our lives profoundly in an instant.

And it keeps me a slave to the thought that we are just never going to dig ourselves out from under this.

And that's about all I have to say right now.

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.]