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.
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").
- 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.
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.
Page 1 of 2: Financial Years 2004-2006
Page 2 of 2: Financial Years 2007-2009 and total for 2004-2009.
Anna: What you have uncovered in the audited financial reports is eye-opening. It's unbelievable how much allocation is focused in the education area, and how much overhead is buried in the programs. The overhead for the organization is clearly much higher than would first appear. Thank you for this work. Essay is republished on PRB.ReplyDelete
"When are our breast cancer fundraisers going to realize the economic synergies of sharing and integrating their Education programs? "ReplyDelete
Anna - I absolutely couldn't agree more. Here in the UK when I see yet another 'new' campaign for awareness or whatever by yet another breast cancer charity - that looks pretty much like the other pink branded one by the way - I have thought exactly the same myself. They are all duplicating work and wasting all that money doing it. Surely they could achieve more if they pooled resources?
Anna, First of all, thanks once again for all this research and hard work you have put into this. Secondly, I'm impressed with how you were so in tune with your body back at the time of your diagnosis. You knew something was up. It's a good thing you had that intuition. Lastly, I had no idea about these figures. It does indeed seem obvious too much is spent on education (although it is very important) and not enough on research. And the point about organizations duplicating/wasting time and money, is a very valid one. I'm not good at doing the figuring myself, but I can see the facts when put in front of me!! Thanks again for highlighting this info.ReplyDelete
Anna, thank you again for sorting through all the numbers to explain it so clearly. It's frustrating on many levels begining with the sheer amount of money not going toward research. Why isn't it? Ok, Komen sees education as part of the cure, but to the extent they're spending their dollars? Doesn't make sense, and you're right about the waste.ReplyDelete
Once again, so well done. Thank.
Dear all...thank you all for your comments.ReplyDelete
Gayle - thanks for the republish, and yes, the numbers are quite astronomical and yes there is much more to overhead than meets the eye. Hopefully the numbers are clearer to people in the formats I have produced, rather than trying to read standard financial statements. The numbers really do tell a story.
Sarah - there is so much duplication of effort in providing educational resources. Obviously education is an extremely important facet, but why can't the charities all come to the table on this and just agree to share. My stomach aches when I think of all the money that could be saved and funneled into research.
Nancy - I still don't know what it is about my intuition. All I know is that it hasn't failed me yet. I'm glad that I was able to highlight the important numbers for you. Now it's a question of what we do with all of this information. Keep agitating for change I say!
Stacey - I think you and millions of other people would agree that education shouldn't come before research in terms of spending priorities. We can no longer afford to get our priorities wrong, or this continued duplication of efforts with respect to this disease. I know it, you know it, so what's the problem here?
Anna, another illuminating post. Thanks for all the work that went into this.ReplyDelete
I wrote a post myself not too long ago that presented some information which, put together with your findings in this post, just heightens my frustration, both as a survivor and a health care clinician, about the state of public education about any and all types of cancer.
The need for coordination is key. And I couldn't agree more that all fundraising organizations that provide information and education about cancer may be missing the point and duplicating efforts that don't really get to the heart of the matter.
Nothing is going to change fundamentally for those of us with cancer if health care providers themselves are not better educated about cancer, from prevention to screening to treatment to post-treatment side effects to the long-term consequences of having and living with cancer. Your own experience illustrates the urgent need for primary caregivers, as well as oncological specialists, to be much more thoroughly acquainted with cancer. The health care system itself needs to change to allow for doctors, nurses and other first-line clinicians to be able to take the time to provide appropriate and thorough information at every step of the way, for reasons I don't think I need to explain here.
In my most recent post about this thorny subject, Not All Better - A Survivorship Toolbox, I discovered that the Centers for Disease Control has been developing a National Action Plan for Cancer Survivorship, to chart “a course for how the public health community can address cancer [treatment &] survivorship more effectively and comprehensively and focus on improving the quality of life for survivors.” The plan identifies priorities that include establishing clinical practice guidelines as well as tools for enabling patients to advocate for ourselves more effectively. It seems to me that such an organization is in a much better position to coordinate and lead such an effort, and that private, non-profit groups who are truly dedicated to making a meaninful difference in educating the public should hop on board instead of reinventing a wheel that they are not, in fact, well-equipped to invent.
I could go on, but I'll stop here. And perhaps write another post myself!!
Kathi - thanks so much for your very informative and insightful comment. I absolutely agree with you that coordination is imperative in avoiding the waste and duplication of efforts which is currently occurring. And I wholeheartedly agree with you that a central body like the CDC would be the logical choice for taking on the mission of cancer education for all. Can we ever imagine that such a spirit of cooperation could exist between all current stakeholders to pass the education mantle on? It would mean setting self-interests aside and focussing on a common goal. It could be this simple, but unfortunately probably isn't.ReplyDelete
Wow, this is definitely investigational journalism. I think you should pitch this to the NY Times and blow the cover off this issue. Or maybe you could do an editorial piece. I agree; how many pretty pamphlets do you need? Let's make research the main focus.ReplyDelete