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?

Breast Cancer and Middle School

My original intended purpose for this blog was to be an observer  and commentator on all things (breast) cancer culture, in a way to try and make sense of my own experience at the same time.  It still doesn't make sense by the way.  Today's post is going back to this blog's roots and asking some tough questions, so I'd ask that you suspend your emotions and read the entire post before commenting.  And please do comment, because I'm very interested to hear your thoughts, whether you agree or disagree.

This article appeared in the December issue of one of our local magazines, The Journal. It's about a local middle school's efforts to raise funds for a local breast cancer organization, Breast Intentions, that provides financial assistance to women in need who are going through breast cancer.  In fact, the charity they support was founded four years ago by two local fifteen year old high school students, an admirable accomplishment indeed as well as a worthy cause.  It seems clear that the purpose of this story was to congratulate these middle-schoolers on their fundraising accomplishments, as well as supporting the good work of the beneficiary charity.

And for most readers, the feel good story would stop there.  Well done kids!

But, of course, I see things a little differently.

Middle-school involvement in the pink breast cancer movement, be it fundraising events like this, education programs within the schools, pink ribbon decorations, flags and signs, or indeed civil liberty legal actions to preserve students' First Amendment rights to wear "I (heart) Boobies" bracelets, certainly seems to be increasing, as does the associated media coverage. Rather than making me feel good, it's making me a little queasy and rather uneasy.

Firstly, I'm uncomfortable that breast cancer, the disease, has been elevated by slick marketing to a status that screams to the general public that it is far more important than other major killers of women, like heart disease or lung and other cancers.  (See http://www.cdc.gov/nchs/fastats/lcod.htm)

And in reading this article I couldn't help thinking about all the kids, who took part in the pink parade in their tie dyed pink shirts, and whose parent or other significant person, was at home suffering from some other kind of cancer or catastrophic illness.  How did these kids feel about all the attention (and money) being paid to breast cancer?  Did they have a voice?   Were they able to express their feelings of discontent and frustration?  Did they even think about it?  I really wonder.  Do the schools have fundraising events and parades of this scale for other Health Observances? What kind of message are we really sending to these middle schoolers?  That breast cancer is the only disease that matters?

In my limited research of this topic, I came across several charitable organizations that offer education programs for adoption by both middle and high schools.  Here's an example of one program offered to Wisconsin schools by an organization called the Breast Cancer Family Foundation.

This particular organization educates young people on the premise of "proven risk-reduction strategies" that apparently may prevent many types of cancer, "not only breast cancer".  The program, specifically aimed at breast and testicular cancers, focuses on "self-examination, diet and lifestyle".  

Whilst I can certainly see merit in encouraging kids to maintain a healthy lifestyle for all manner of reasons and to be aware of their own bodies, but to suggest that these are proven ways to prevent breast cancer is just not evidence-based.  The point being that we still don't really know exactly what causes breast or other cancers.

I'd make the same point about self-examination and early detection.  These are methods of cancer diagnosis.  They don't prevent or cure cancer or categorically save lives.   So why are we pushing breast cancer education curriculums that have little scientific basis to school kids?  Where's the value in that, other than perpetuating the cycle of misinformation all in the name of pink breast cancer awareness?

For the horsey girl in your life

If this is indeed happening on a wide scale in schools, then I hold grave fears for the future generation of breast cancer activists.  Indoctrination to the pink party line is starting earlier and earlier.  What's next?  Breast cancer programs for kindergartners?  Don't laugh, I don't think it's beyond the realm of possibility at this point, and we already have the toys!


On another note, in the U.S. there's an ever present debate about the extent to which there should be a mingling of church and state, particularly within the public school system.  Readers,  I put it to you that now we have the mingling of breast and state within schools, for better or worse.  Whilst I applaud any school's efforts to encourage altruism within their student body, and I fully support including cancer as a topic within any health education curriculum, I'm uncomfortable with schools' elevating breast cancer to this pink extent.  As Ronnie Hughes of the Being Sarah blog, so eloquently put it;

"Pink's not wrong. It's just not right enough."

And that's the problem.

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

So what do we want middle school kids to know about breast cancer, or cancer in general?  What do they need to know?


Is it right to popularize breast cancer over other cancers and diseases within the public school system with events like the one in the article?


Is this even an issue?


Please comment, I'd love to hear your thoughts.

Breast Cancer Awareness Jersey Shore Style!

As you're all too well aware the last month or so for me has been particularly difficult in dealing with my illness.  Living in the suburbs of New Jersey,  life can feel a little bit lonely sometimes, and I'm so thankful for all the support I receive from my cyber-community, as well as the unending support from family who continue to just be there for me in more ways than I can count.

But from a societal standpoint, and as someone living with the never-ending challenges of a metastatic cancer diagnosis, I often wonder why it is that I continue to just feel this unnerving sense of isolation and increasing dread that there is very little understanding by the ordinary person of the realities of what a breast cancer diagnosis really means.

I guess this item, received in my mailbox this week, brought it all home, and eureka I got it!

This is how "In Jersey / Jersey Shore Magazine" depicts what they think is important for the women of the Jersey Shore area to know about breast cancer.

First the cover of their "Special Breast Cancer Awareness Issue".

Second, the contents.

On page 32 we learn about Pat Battle surviving (past tense) her "battle" (nice use of double entendre) with breast cancer.  Another celebrity breast cancer story.  Funny how they all seem to be good news stories;  about how their mammograms saved their lives, and how they've all gone on to embrace the mantle of triumphant survivor after so-called successful treatment.  And that's the end of the story, as is always the way.  I guess no one wants to read a bad news story, say about a metastatic breast cancer diagnosis?  Might not be needing the pink pashmina for that photo shoot.  Or hair. Or breasts. Or ovaries.  Or other body parts or organs or other semblances of normal life you might be fond of.

On page 42 we get what is essentially an advertorial for Dr Deutch's marvellously innovative and oh-so-cosy breast imaging center called HerSpace. Poignantly, we're informed that Dr Deutch also recently went through her own breast cancer crisis, but details are scant at the behest of the good doctor, as she wants to focus on her patients.  Patient focus is a good thing especially when "Deutch does describe her practice as a "niche" practice because it operates on a fee-for-service basis, meaning it doesn't accept Medicare or private insurance plans."   That "story" got 5 pages out of a 63-page issue.

On page 52 we're treated to a Tickled Pink fashion spread of glossy made-up survivors in their breast cancer charity of choice t-shirts and then bedazzled in all manner of pink ribbon accessories and jewellery all available for purchase at listed stockists. As for the copy; here's my personal favorite..."showcased here in an array of pink items, they show a verve and vitality that is the essence of the spirit of all survivors...." Nothing says verve and vitality like a $139.95 Sparkle Strong Breast Cancer Survivor Necklace I guess!

And last but not least, "Amazing Beauty Tips for Chemo Girls", where two local women have co-authored a book (available for purchase from Amazon and the like) chock full of beauty pearls of wisdom for all us "chemo girls".  Shame on me. I hadn't really thought about pencilling my eyebrows in today.  But I do hope they have a tip for dealing with the thrush that has taken up residence in my mouth this week.  How can you get that just squeaky clean feeling when your mouth is coated in white crap, and ulcerated from the side of your mouth to halfway down your throat? Will I still be able to wear lipstick?

The point about this snarky post is important.  This is what we; women; are being fed on an almost daily basis with respect to breast cancer awareness, and examples like this magazine, contain absolutely not one iota of useful, educational, scientific, newsworthy, actionable, impartable or realistic information about breast cancer, period. But there were plenty of coupons for pink products and lists of stockists.  And this magazine goes out to every household in my county and surrounding areas!  How have we let "breast cancer awareness" come to this? No wonder we're not getting anywhere in the fight to eradicate this disease.

Meanwhile this week, as well as railing against this magazine, I've been dealing with the gift of steroid-induced myopathy and a nasty case of thrush in my mouth also as a result of the steroids that I had to take for radiation.  So now as well as occupational therapy for my hand, I must also start a course of intensive physical therapy to regain the strength back in my lower body and leg muscles which have withered away to practically nothing.

And I haven't even started my new chemotherapy yet.  I'm saving that fun for next week. What will I wear?

Perhaps all I need is a full face of makeup, and all of this can just go away with a poof of a pink pashmina and a sparkly pink ribbon trinket.  Battle won.  We're all aware.  We're all survivors.  Fist pump!

All Aboard The Pink Gravy Train......

Garden toolkit benefitting NBCF

Recently my beloved and I were shopping in our local big-box hardware store.  Beloved stopped at a large display of pink gardening tools.   Pink hoes, rakes, trowels, loppers, snippers;  you name it, we saw it.  Once he stopped laughing he inspected the packaging on one of the items and found that a portion of the money's raised from the sale of the product went to the National Breast Cancer Foundation ("NBCF").

He stared for minute, pondered and then said to me "Oh NBCF?  They're one of the good ones aren't they?"  I then asked him why he thought that.  He then said,  "Well their name sounds very official and look at their logo. Aren't they for research?"  Well, not really, but more on that later.

A name and logo that seems to suggest some kind of official credibility in the minds of consumers.  Canny marketing to say the least, and the clever kind of branding that even had my beloved  pausing for thought.

But (luckily) he's married to me.  And as you know readers, I ask questions first before any money leaves my pocket.  Perhaps some of you are wondering how I go about researching an organization.

I find going straight to the source is a good place to start.

First stop, the organization's mission statement.

That's nice, but not necessarily a mission that I would support, given that I'm more interested in activities that might help actually eradicate breast cancer, which to me means research.  But does NBCF support research at all? Not according to its mission statement, but further digging yields this little snippet from a section on "Partnering with NBCF";

So apparently they do support some research through "breast cancer research projects", but exactly how much?  This requires a bit more exploration into the wonderful world of non-profit financial reporting.

I think any organization interested in transparency should have their Audited Financial Statements and IRS Form 990's linked on their website.  If they don't, that's an immediate red flag in my opinion.  Check the "About Us" section, "Media" section,  or run a search on their website for their financials.  Failing that,  go to Guidestar.org, register for free, and you can find copies of IRS Form 990's for most charitable organizations.  (Click here for a guide on how to read a Form 990.)  Generally I avoid looking at the financial information listed in an organization's annual report, because it's usually summarized in a form that the organization wants to report and lacks the detail that I'm interested in.

In this case, NBCF's audited financials and Form 990's were readily available on their website.  From their audited financials, I was able to determine that research only made up 7% of their program allocations for 2010.  From total revenue and support of $10.1M, research amounted to $716k.  Not much when you compare the expenditures on "Awareness" ($3.7M or 37%)  and "Detection" ($2.1M or 21%).  Or even "Fundraising Expenses" for that matter which accounted for $1.0M or 10% of total revenues.

Now I'll be the first to agree that not every breast cancer organization has to fund research.  Certainly patient support, assistance with treatment, education, and screening and diagnostic programs are important functions,  in coping with breast (or any other) cancer or other incurable illness.  But as I've said before, the focus on breast cancer awareness and early detection seem to be the favored programs by so many organizations and I continue to harbor serious concerns that all of this expenditure is coming at the expense of potentially life-saving research.  And don't even get me started on the massive duplication of breast cancer education resources!

In this case, NBCF advertises to potential sponsors that some of its donations go to "breast cancer research programs", but without any supporting detail.  Why does NBCF mention research when attracting sponsors but neglect to mention it at all in their mission statement?  This seems odd to me.   Is this a deliberate attempt to avoid public scrutiny on the whole question of research, whilst still appealing to sponsors who are interested in funding research? I really don't know the answer to this question,  but  how many donors, sponsors and indeed, consumers of all those NBCF pink products, are aware that only 7% of NBCF's funds are being used for research?

From NBCF's financials it's clear where their priorities lie.  Awareness and Early Detection.  But what are NBCF doing differently that isn't already being done by so many other breast cancer organizations? What about Susan G. Komen for the Cure®, for example, who also demonstrate similar  Program spending, but on a much larger scale?  What are NBCF doing, that Komen isn't already doing?  How much more awareness and mammography for under-resourced women do we need?  Where's the evidence that this kind of spending is yielding meaningful results in stemming the breast cancer epidemic?

And so I continued to explore NBCF's resources.  Their website is pretty, fairly user friendly and clearly laid out.  But what about website content, which no doubt forms a large part of their Awareness program budget?  There's a discussion forum and social networking application which some might find useful, although this feature is not unique in the online breast cancer community.  I clicked through many of the links to breast cancer information, and didn't find anything new or different from other breast cancer websites.  Same information.  Same messages that early detection saves lives.  Same lack of scientific discussion.  However, it's obvious to me that NBCF have mastered the art of repackaging generic information and presenting it in an appealing way.  An excellent example of this is a new educational resource that NBCF recently released.   In their words, "an innovative, online resource for breast cancer education", it's basically an animated video presentation and website called Beyond The Shock® which is separate to their main website;

"BeyondTheShock.com utilizes ground-breaking technology and the resources of the global medical community to create an accessible platform for understanding a diagnosis of breast cancer and to help women understand all the treatment options available to them."

The resource is certainly aesthetically pleasing and graphically stylized, set to a stirring musical soundtrack, narrated by a comforting motherly voice  and is also very pink.  It also utilizes a metaphorical theme likening the experience of breast cancer to that of a train journey.  A journey that weaves through what looks like magical pink lollypop land to me.

Screenshot from the Introduction section

After watching the Introduction....

"...[y]et somehow these challenges become fertile soil or seeds of strength, love and resilience mature and grow strong...", 

and the Conclusion ....

"...[f]amily, friends and other breast cancer patients are your shield and safety net, carefully knit together to strengthen you.  Alongside them your triumphs over new hills will be celebrated and your struggles through new valleys will be endured....."  

and feeling rather underwhelmed I decided to take a look at Chapter 5 "Types and Stages".  I watched the subchapter on Stage IV.  All one minute and five seconds of it.  I learned that;

• I might find treatment exhausting.

• I should "...make careful decisions and plans.."

• "....many women discover strength of character and qualities of resilience they never knew they had..."

• I should have a good support network of family and friends.

Ho Hum.  Thankfully, I never heard the words "death",  because that would be a buzzkill after my lovely pink train journey.

As for NBCF's main website.  More of the same pretty pink graphics and nifty little tools.  Catchy programs with names like Help for Today...Hope ForTomorrow® through its National Mammography Program, Early Detection Plan®, MyNBCF online social community, the Pink Ribbon Challenge, and the usual stock of generic and duplicated educational information that we see on many other breast cancer sites.  Shockingly, I couldn't find much information relating to metastatic breast cancer other than a few little definitions here and there and of course that lovely trip through magical pink lollypop land.

But interestingly, although NBCF's mission statement states that it provides "mammograms for those in need" and provides "nurturing support services", from the website I couldn't find out how to get a mammogram, nor do they list a telephone number on the "Contact Us" section.  Too bad if you do need a mammogram or some nurturing support!

But there was plenty of information if you're considering donating or becoming a sponsor!

But I am pleased to see that NBCF is diversifying beyond the business of breast cancer and pink train journeys,  into the self-defense industry.

I may have Stage IV Breast Cancer, but at least I'll be well-armed.  Well not against breast cancer, but all those nasty perps.

Thanks NBCF!

www.reddotshooting.com

One of the good ones?  You be the judge. 

Komen By The Numbers: 2010 And Still No Answers

Stewardship: the conducting, supervising, or managing of something; especially : the careful and responsible management of something entrusted to one's care.

In September 2010, Susan G. Komen for the Cure® ("Komen"), proudly announced they had received a four-star rating from Charity Navigator, a popular charity evaluator whose reports are accessible by the general public.

“Achieving Charity Navigator’s highest rating for fiscal soundness is an incredible achievement for even one year during these economic times,” said Ambassador Nancy G. Brinker, Komen’s founder and CEO. “But to garner this rating four consecutive years is a true testament to the hard work of our entire Susan G. Komen for the Cure family. My gratitude also goes out to our Affiliates, our volunteers and our staff, who have proven once again to be responsible stewards of our contributors’ money as everyone continues to try to fulfill our promise of saving lives and ending breast cancer forever.” 

Essentially, Charity Navigator  evaluates charities based on their "organization efficiency" and their "organizational capacity",  which speaks to how sustainable an organization is. Charity Navigator then uses the results of this evaluation to assign rating stars;  zero stars being the lowest  to four stars being the highest. A four-star or "exceptional" rating means that a charity "exceeds industry standards and outperforms most charities in its Cause".  In the words of Charity Navigator;

"By utilizing our ratings, givers can truly know how a charity's financial health compares with other charities throughout the country. Givers can be confident that in supporting those charities rated highly by Charity Navigator, they will be supporting organizations that are fiscally responsible and financially healthy."

This all sounds very nice, but what does all this really mean?

In the case of Komen, the award of a four-star rating tells us that it is a highly-rated fiscally responsible and financially responsible organization. Not whether it lives up to its mission, aligns its programs and allocates funds to its mission, buries overhead within program budgets, uses evidence-based practices, etc. In essence, the ratings say nothing about how effective Komen has been in fulfilling its mission of "saving lives and ending breast cancer forever". These are fair questions and should be part of any independent evaluation. To say that an organization is "efficient" and has "capacity" says absolutely nothing about whether an organization is doing right by its donors, nor the cause(s) it purports to aid. And it should.  Although, if one bothers to read the methodology  statements on Charity Navigator's website, it states that a "..limitation to our ratings is that we do not currently evaluate the quality of the programs and services a charity provides." This seems like a pretty important omission in the ratings system to me.

Indeed, it was recently reported by Information Today, Inc. that Charity Navigator is adjusting its ratings to respond to such limitations;

"In 2011, it plans on incorporating criteria that analyze the charity’s effectiveness. Charity Navigator CEO Ken Berger said it’s responding to its audience since 85 percent of its users surveyed “thought knowing something about a charity’s effectiveness was important.” 

But Charity Navigator doesn’t have the resources to hire staff to review 5,500 charities and therefore must find cost-effective ways to evaluate them. It will train an “army of volunteers and graduate students” to evaluate charity’s effectiveness, says CEO Berger. Its new rating system will be based 33% on financial health, 17% on accountability, and 50% on results, though it hasn’t made it clear how it will judge results."

So how "effective" is Komen?  Given that breast cancer remains incurable;  breast cancer mortality rates have remain unchanged in decades;  early detection does not guarantee that anyone will avoid metastasis at any point after diagnosis; available treatments are of questionable efficacy; acceptable screening methods and their effectiveness are still being debated; and awareness and education programs have yet to prove that anyone can escape diagnosis in the first place, Komen's "effectiveness" rating in my book would be not very.

But will Charity Navigator concur when they update Komen's ratings under their new evaluation system? What will their indicators of an organization's "effectiveness" consist of? Perhaps effectiveness criteria* for a non-profit like Komen might include;

• how successful an organization has been in accomplishing its stated mission;
• how efficiently it raises and invests funds, and how it then uses those funds;
• whether the organization is a source of satisfaction for its founders, employees, volunteers, sponsors, donors, other stakeholders and society as a whole;
• how adaptive the organization is to new opportunities, information and challenges;
• how capable the organization is of developing and evolving in the face of change;
• how capable the organization is of surviving in a world of uncertainty

(*Criteria adapted from an Indiana University Northwest educational resource)

In judging "effectiveness" close attention should be paid to an organization's financials, to see how it's spending ties with it's mission.  In previous instalments of this series (Komen By The Numbers, The Context of Research, and Education In Focus) I have analyzed Komen's financial statements to make my own judgements about how "effective" Komen has been in spending it's precious resources.

Komen recently released audited financial statements for the financial year ended March 31, 2010, and today I continue my evaluation of how Komen's spends it's donors funds.

The first chart summarizes how Komen spent the $389.3M it received in Total Public Support and Other Revenue ("revenue").  As in previous years, Education received the highest allocation of $140.8M or 37% of revenue; Research $75.4M / 19%; Screening $46.8M / 12%; Treatment $20.1M / 5%; Race for the Cure and Other Fundraising Expenses were $36.1M / 9%.  The remainder was spent on Affiliate Relationsand Other Administrative Expenses of $40.6M / 10% and increase to Assets of $29.3M / 8%.

The second chart, compares the results of 2010 in total dollars to all prior years for which financial statements are available from Komen's website.

Once again I have to question the level of Komen's investment in it's Research program.  In 2009 the Research program received $70.1M or 21% of total revenue, and in 2010 it received $75.4M which, although a slight increase in terms of dollars, only represents 19% of total revenue.

As this third chart shows, relative to dollars earned, allocations to the Research program (purple line) seem to be on a definite downward trend, whilst the other programs remain fairly flat, and Administrative Expenses (orange line) seem to be on the increase.

Analyzing further the financials for Komen's Research program, I find that from the $75.4M allocated to the Research program, that only $62.7M was spent on actual research awards and grants with the remaining $12.7M spent on Professional Fees expense of $6.3M; Salaries and Benefits of $2.8M; and other Operating expenses of $3.6M.

To recap; although the Research program was allocated 19% of total revenue only 16%  of total revenue was used to fund actual research!  And why the need to spend $6.3M on Professional Fees expense, which is generally fees like accounting, legal, public relations, financial management etc.?  16% to Research is significantly less than the 25% Komen repeatedly claims is used to fund research.  And the annual Research program allocation percentage, when compared to total revenue, keeps decreasing!

These types of line-item expenses buried within all of Komen's Program allocations are not captured in detail in the high-level "Program Expenses" as reported by Charity Navigator.  Although it is feasible that charities do incur expenses directly attributable to their Programs, and are correctly reported under each Program budget allocation, Charity Navigator's ratings make no judgements as to whether such expenses buried within the Program Allocations, are in fact reasonable.  If all Administrative Expenses and Changes to Assets were tabulated, regardless of the Program budget to which they related to,  for 2010 actual awards and grants across the Research, Education, Screening and Treatment Programs accounted for 40% or $156M of total revenue of $389M. The remaining 60% of revenue or $233M was spent on Administrative Expenses (about 18% for General Overhead and Increases to Assets, and about 42% attributable to Program Expenses).  Again I ask, is this reasonable?  What do we have to compare to?

Perhaps this is another criteria for Charity Navigator to consider when establishing their new ratings system.  How do the level of administrative expenses buried within Komen's Program allocations compare to other similar charities? How much does it cost to run a Research Program?  An Education Program?  How much is Komen doing in-house? How much are they out-sourcing?  Until we understand the answers to these and other questions, a four-star rating doesn't mean much in my opinion.

How can Komen continue to justify it's position on Research and honestly think that it's living up to it's mission of "saving lives and ending breast cancer forever”? From its financials, its mission seems to shout Education.  Not curing breast cancer. Are Komen really being "responsible stewards" of their contributors money? Has Komen been "effective" in the way it has spent the estimated $2Billion it has raised since 1982?  NO.

Komen By The Numbers: Education in Focus

As a woman, do you remember when you first became aware of the importance of being vigilant about your health? I'm forty years old now,  but I feel like I've always known.  I grew up in Australia, and went to high school in the 1980's where we had a very strong health and sex education curriculum.  I think this where I must have learned about checking for abnormalities in my breasts as well as the importance of regular cervical cancer screenings.  I also seem to recall my primary care doctor giving me a lesson on how to check my breasts and being a very good student, I listened and religiously checked myself and also went for my regular Pap tests.

This knowledge served me well when I noticed, through self-examination, a difference in one of my breasts back in 2004 when I was thirty-three.  Not a lump; nothing really obvious; just different.  And that was when the real battle began.  Because I didn't have an obvious lump, presented no apparent risk factors and initial tests were inconclusive, I was waved away by my medical practitioner at the time and told to seek "breast massage" as a possible therapy for my imaginary problem.  (See my post "How Did I Get Here?" for the unbelievable story of my initial diagnosis).  After deciding that I would follow my intuition that something was wrong,  I sought a second opinion.  Well the rest, as they say, is history and here I am today at forty years old blogging about my experiences as a woman living with metastatic breast cancer.

I've often wondered though what led me to be so intuitive about my body?  Was it the health and sex education that I received in high school? Was it that good? Was it the doctor I had seen throughout my teens and early twenties who instilled in me this sense of vigilance? And what kind of medical education did that nurse practitioner receive, that led her to wave me away that day despite my protestations?  Me, a person who at the time had presented with StageIIIA breast cancer, despite absolutely no risk factors?

But that's the problem with breast cancer education isn't it?  Because the nature of this disease is that we don't really know when and who it's going to strike next.  Without proven research behind it, breast cancer education is a minefield of uncertain efficacy and a haphazard business of unproven conjecture.

Yet public education is a popular mission for many of our  breast cancer charities.  If the goal is to educate, it's a relatively easy mission  to fulfill.  Produce educational resources - mission accomplished. But it's an expensive undertaking, even though it's not necessarily helping to reduce breast cancer incidence.

A Closer Look At Komen's Education Program

Continuing my series of investigations into the activities of our nation's largest breast cancer fundraiser, Susan G. Komen for the Cure® ("Komen"), in this post I shine the spotlight on Komen's Education program. (Previous posts in this series are available at "Komen By The Numbers" and "Komen By The Numbers: The Context of Research".)

For the financial year ended March 31st, 2009, the Komen organization earned some $331.3 million in total Net Public Support and Other Revenue.  The following chart highlights how the $331.3 million was spent both in dollar terms and expressed as a percentage of Net Public Support and Other Revenue.

The Education program received the highest allocation of $135.5 million, or 41% of total Net Public Support and Other Revenue; in fact,  its highest annual percentage allocation for the six-year period from 2004 to 2009.  The Research program received only $70.1 million, or 21% of total Net Public Support and Other Revenue; indeed its lowest annual percentage allocation for the six-year period from 2004 to 2009.  (For further information on how Komen's program spending has changed over time, please refer to "Komen By The Numbers:  The Context of Research").

Komen's position on their funding priorities are clear, as corporate spokesperson, Andrea Rader stated on Alicia Staley's recent blog post.

"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). 

Once women are educated, they need screening at the appropriate time.  And if they’re diagnosed, they need access to care, where treatments developed through research can help them.  Many women and men also need some help getting through their treatment, and they need someone fighting for them.

That’s why we fund all of it: research, education, screening, treatment programs and advocacy work."

And it's true, Komen does fund all of it. But $135.5 million for Education?  Almost double the amount allocated to the Research program? $135.5 million sure seems like a lot of money.  How much of this figure is actually spent on Education?

After reviewing Komen's audited financial statements, and the Education program allocations for each of the six years from 2004-2009, I produced table summaries (attached at the bottom of this post), which show how Komen spent each year's Education program allocation.

In reading the tables below and summarized in the following chart, consider the following example.  In 2009, from an Education program allocation of $135.5 million, Komen made actual education awards and grants of $46.7 million or 34% of the total Education allocation.  Other notable expenses included $11.6 million on Salaries; $13.6 million on Professional fees (generally includes legal and accounting fees); $6.1 million on Production expenses for Race for The Cure; $4.9 million on Printing and Publications; $2.9M on Postage and Shipping; $2.5M om Travel;  $1.5M on Conferences and remaining operating expenses totaling $45.4M million.  To summarize, actual Education grants accounted for 34% of the Education allocation of $135.5 million. Education program operating expenses accounted for 66% of the Education allocation of $135.5 million.

Indeed for the entire six year period from 2004-2009, the average percentage spent on actual Education awards and grants was only 37% of the total Education allocation, with the remaining 63% spent on Education program operating expenses.

What does Education Entail?

The ostensibly high Eduction program operating expenses may be partially explained if Komen is producing much of its Education material  and programs in-house which might include brochures, audio-visual resources, other breast cancer educational information, upkeep of the Komen website, in addition to awarding grants to outside organizations.

Relevant to its Education program, Komen's 2009 Annual Report states:

• More that 3 million print and audio-visual educational materials with life-saving messages were distributed to  Affiliates, grantees and the general public in 2009. 

• In the first quarter of the year, our breast health messages reached 4 million people through Anuncio, a service  providing patient education in English and Spanish in doctors’ offices, malls and in most HEB pharmacies in south Texas communities near Houston, College Station and Austin. This year, they’ve expanded their reach to include Atlanta markets. 

•  Our Breast Care Helpline staff answered about 3,000 calls and 300 emails during just one quarter of 2009. 

• In less than six months, more than 80,000 fact sheets have been downloaded from the Understanding Breast  Cancer section of our Web site, komen.org. 

Komen provides only limited discussion of its Education program in its  2009 Annual Report, so it is difficult to say with any precision whether the Education program operating expenses are reasonable or exactly what kinds of educational activities are being funded.  It is possible to search Komen's website for domestic affiliate grants, however grant classifications and amounts are not specified.  (Click here to see an affiliate grant keyword search of "2009").

There is clearly no debate that Komen is fulfilling it's priority to "educate" the public about breast cancer.  But I have to question whether the $135.5 million  Komen spent on its Education program in 2009 represents value for money for it's many, many donors.

After all, we can educate about apparent risk factors; so-called prevention measures like exercise, healthy diet, lifestyle factors and so on, but for so many women who have been diagnosed, these factors do not sufficiently explain their breast cancers.  We can educate on the advantages of early detection, but there is no medical certainty that a woman won't experience recurrence or metastasis in the near or far future.   We can educate about the importance of self-examinations and mammograms, yet these screening methods are no guarantee that a breast cancer tumor will be detected.  We can educate women about available treatments, but this is no substitute for game-changing research and the scientific facts that women need in making decisions about their treatment options.  Research is still lacking in all of these areas.  We are educating the public about a disease that has no cure and for which our knowledge is still extremely limited.

Why does Komen continue to pour money into breast cancer education and awareness programs, at ever-increasing rates and at the expense of research which could potentially alter the course of our breast cancer epidemic? Why we do have hundreds of breast cancer organizations producing the same educational information, all incurring their own costs in doing so,  and decreasing the overall funding pool available for potentially life-saving research?  When are our nation's largest breast cancer fundraisers going to realize this duplication of efforts with respect to education is, quite simply, a colossal waste of money?  When are our breast cancer fundraisers going to realize the economic synergies of sharing and integrating their Education programs?  

I'm not saying that breast cancer education isn't an important facet in dealing with this disease epidemic.  But all the education in the world is never going to provide us with a cure or the kinds of treatments that will allow us to live long and productive lives.  I'm simply questioning whether there is a better and more economically efficient way  for our breast cancer charities to fulfill their breast cancer education missions.  

For that to happen there needs to be a spirit of cooperation and a common goal that is neutral to the spoils of corporate partnerships, sponsorships and other business incentives.  The $542.5 million spent by Komen on its Education program from 2004-2009 sure is a lot of money for us to be getting our priorities wrong with respect to this disease.

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Page 1 of 2: Financial Years 2004-2006

Page 2 of 2: Financial Years 2007-2009 and total for 2004-2009.

                            

Komen By The Numbers: The Context of Research

Context: the parts of a discourse that surround a word or passage and can throw light on its meaning. 

Context is an important word, particularly within the cancer culture.  We hear those three little words; "You have cancer", and immediately we are thrown into a frightening void, where often the first battle is understanding the world into which we have just been forced.  After shedding our tears, and numbing ourselves to the shock and pain of it all, we take a deep breath and start asking the questions we are supposed to ask.  After we have figured out which questions we need to ask.  Soon we begin to understand this new context.  Our diagnosis, options for treatment, and how our lives will be irreparably changed. Context provides some comfort in the form of clarity, but we can't get there unless we ask the relevant questions.

It is with this in mind, that I continue my investigation into the activities of our nation's largest breast cancer fundraiser, Susan G. Komen for the Cure® ("Komen").  I still have questions.

In my recent essay, "Komen By The Numbers" , I analyzed the available audited financial statements for Komen for the six year-period for financial years ending March 31st, 2004 through 2009.  I calculated Komen's total Net Public Support and Revenue for that six-year period; $1.54 billion.  I then calculated the total allocations to Komen's "Program Services" for the same period.  Allocations were made in the following proportions, expressed as a percentage of total Net Public Support and Revenue: Research 25%; Education 35%; Screening 11%; and Treatment 6%.  The remaining 22% was used for Fundraising and Other Administrative Expenses.

I also investigated the types of research funded by Komen and determined that, according to information provided on their website, from 1982 to 2010 they have awarded research grants to the tune of about $491 million. Using the total research figure of $491 million and other ratios, I estimated that from 1982-2010, Komen has received some $2.1 billion in Net Public Support and Other Revenue. Types of research are expressed as a percentage of the $491 million:  Biology 33%; Treatment 22%; Early Detection 15%; Prevention 10%; Survivorship 9%; Etiology 8%; and Model Systems 3%.

In this essay, I drill a little deeper into Komen's Research program.

Research Growth

Komen's "Research Involvement" media sheet dated 10/29/09, (since replaced by a new media sheet in the last week entitled "Research Programs: Overview")  states;

"Since funding its first research grant in 1983, the organization’s commitment to research has grown at unprecedented rates."

Is it fair to say that Komen's research allocations have "grown at unprecedented rates?"  The best way to tell is to look at Komen's available audited financial data to see the changes that have occurred over time.

Here are the dollar amounts of Komen's Net Public Support and Revenue, compared to Program Services and Other Expenses allocations, from 2004 to 2009.

This chart tells us that Net Public Support and Revenue has steadily increased, from $147 million in 2004 to $331 million in 2009; growth of 125%.  The Education program has increased from $44 million in 2004 to $135 million in 2009; a significant growth of 206%.  By comparison, Research has grown from $39 million in 2004 to $70 million in 2009; growth of only 79%.  In terms of dollars, the Research program has clearly not increased as much as the Education program. Whereas a 79% growth rate has a nice ring to it, the actual dollars invested in Research compared to other expense categories does not support Komen's statement that it's Research program has "grown at unprecedented rates".

To determine which of Komen's programs have indeed grown at "unprecedented rates" it is important  to understand how each of the Program Services are allocated  when expressed as a percentage of the total Net Public Support and Revenue over a period of time.  The following chart tells a very different story.

From this perspective it becomes very clear that Komen's policy was to fund its Education program (pink line) at ever-increasing rates, with the sharpest increase occurring between 2006 and 2008. In 2004, 30% of Komen's Net Public Support and Revenue was used to fund its Education program.  By 2009,  this percentage allocation had risen to 41%.

By comparison, the percentage allocation to the Research program (navy blue line) has barely changed since 2004. In fact, it seems to be on a slight downward trajectory except for a blip in 2008.  In 2004 Komen allocated 27% to Research, and this dropped to 21% in 2009.  Over the six year-period,  total monies allocated to Research were only 25% of the total Net Public Support and Revenue. This does not indicate "unprecedented growth."

Research Commitment

Also in Komen's 2009 "Research Involvement" media sheet, the organization proudly states its commitment to research:

"In 1983, Komen invested in one research grant worth $28,000. Ten years later, the total had exploded to 21 grants worth $590,000, and 10 years after that, Komen distributed $21 million in research funds. This year, we’re providing researchers worldwide with $60 million."

Such statements are meaningless unless the context is understood.  How do these research amounts relate to the amount of Net Public Support and Revenue Komen earned in each of those years? Further, how do they compare to the amount spent on the Education program in those years?

Komen states that they are providing $60 million to research this year alone, which sounds like a lot of money, especially when compared to the $28,000 invested in 1983.   Komen's 2009-2010 financials are not yet available on their website. But if history is a guide, the organization probably earned in excess of the $331 million in Net Public Support and Revenue that it earned in 2009. Based on this estimate, a Research investment of $60 million would amount to about 18% of Net Public Support and Revenue.  When viewing the $60 million research allocation in the context of Komen's full financial situation, this investment sounds a lot less impressive.

Research Focus

Komen's 2009 "Research Involvement" media sheet states that the organization's research focus has shifted:

"Beginning in 2008, Komen’s chief scientific advisor, Dr. Eric P. Winer, and the organization’s Scientific Advisory Board initiated a strategic shift in the focus of Komen research to translational studies that would contribute to significant reductions in breast cancer mortality and/or incidence within the decade."   

Now for anybody who's not aware, "translational studies" refers to research that "...transforms scientific discoveries arising from laboratory, clinical, or population studies into clinical applications to reduce cancer incidence, morbidity, and mortality." (See National Cancer Institute for more information).

This all sounds quite promising, but what does it mean for Komen's Research program allocation? Since this new focus began in 2008, it may be too early to draw any conclusions from the financials, except to note that the 21% allocated to the Research program in 2009 is lower than each of the five years previously.  Is this what Komen really means when they talk about a "strategic shift" in their research policy? That there will be less money allocated to Research even as Net Public Support and Revenue continues to increase?  I certainly hope not, but I'll be watching the numbers closely as they become available.

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How does all of this evidence support Komen's statement that it's Research program has "grown at unprecedented rates"?  It's all in the context.

In performing these analyses, it's been my intention to answer the many questions that I have about Komen's policies and activities.  There is too much money at stake, and there too many clocks ticking for the women who are currently living with breast cancer, and too many women yet to be diagnosed.

If I invested in the shares of a public company, it would be within my rights, as a shareholder, to question that company if I had concerns about their operations and how my investment was being spent.  As a past donor to Komen, and as someone living with metastatic breast cancer, I am a stakeholder for whom the Komen organization looms large in the fight to end breast cancer. I maintain my right to ask reasonable questions of the Komen organization.  I need an investment in a cure, and sooner rather than later.  This is my context.

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.]