Sunday, January 30, 2011

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.

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

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.

17 comments:

  1. In 2011, metastatic breast cancer is incureable. How’s 2012 looking?

    Note that 2.3 percent($11,000,000) of the American Cancer Society's 2009 total cancer research funding budget ($485,000,000) funded metastatic research. Is that sufficient to make a difference in metastatic outcomes?

    In a Medscape vlog, IU's Dr. Kathy Miller comments on "Cola or cure." She said: "If [we] combine all of the cancer research funding in this country from all sources--private foundations, pharmecutical companies and the U.S. government, it amounts to just under $.69 per person per week."

    Earlier this year an Annapolis, MD-based group of women with Stage IV awarded a $55,000 METAvivor grant to Dr. Danny Welch, UAB for research entitled “Mechanism of action of the KISS1 metastasis suppressor”. How far is $55,000 going to take a researcher? (The group apparently could not fund a 2011 grant.) I don’t think we can hold enough car washes, bakes sales, etc. to get the job done.

    ReplyDelete
  2. Thank you so much for your analysis of these financial statements, Anna! They do need to be taken in context and, unfortunately, the public rarely, if ever, gets to see them that way. We are stakeholders in how the organization leads, fundraises, and spends. Thank you for pointing that out. I'd love to republish on PRB!

    ReplyDelete
  3. Thank you again for all of the hard work. And wow. Just wow.

    ReplyDelete
  4. Anna,
    I must read this, again, to digest all of your efforts, but Wow! Most impressive.

    Brenda

    ReplyDelete
  5. Nice work Anna....now thats what I call "more cowbell". This information needs to be published for greater consumption by the masses. "FOR THE CURE"....Yeah, right.

    ReplyDelete
  6. http://main.uab.edu/Sites/reporter/articles/78638/


    Q. Will your service with the council enhance the research work in your lab?
    A. Absolutely. The benefits will occur at two levels. First, we will be able to use Komen funds to initiate some higher-risk projects. Second, I will be able to interact even more frequently with some of the brightest minds in the cancer research community. I am confident our discussions will lead us all toward more creative and higher-quality science that will hasten the pace of discovery.

    ReplyDelete
  7. Q. How excited are you to serve on the Komen advisory council?
    A. Very. Although there is a great responsibility associated with serving this position, the chance to influence research priorities is exciting. Of course, I have an agenda to promote the area of metastasis. It is disconcerting that the attribute of cancer cells causing greater than 90 percent of cancer deaths receives far less than 5 percent of government or foundation funding in the area of cancer. That statistic must change.

    Being selected also is very humbling. When I read the list of colleagues on the SAC, I was, and remain, amazed that I was chosen. Each has contributed significantly to understanding and more effectively treating breast cancer. While I will bring my perspectives, I look forward to learning from each of them as well.

    This is definitely not going to be an honorific position. My term on the council began July 1, and my first assignment arrived in an e-mail July 2.

    Q. Why was the council created, and how is it an asset?
    A. Several factors that contributed to council creation. Chiefly, Susan G. Komen for the Cure saw a need to prioritize where research funding would do the greatest good. By soliciting the input from investigators representing multiple disciplines and constituencies, the precious donations from the public would be more likely to go to those areas deemed to have the greatest overall impact on survival and quality of life. In addition, the council will play significant roles in peer review, hopefully creating a more consistent and robust scientific evaluation.

    ReplyDelete
  8. Dear Anonymous, I presume what you have posted here is an excerpt from the following article (http://main.uab.edu/Sites/reporter/articles/78638/). This is certainly heartening to see a representative on Komen's scientific council whose agenda is metastasis. This is a good start. However, without a commitment from Komen to significantly increase their allocation to research, in line with the increases in Net Public Support & Revenue and increases in the Education program, how is the organization ever going to fulfill its mission of "ending breast cancer forever"? It's my opinion, that if an organization is holding itself out to be "for the cure", then nothing less than the bulk of its resources should go to Research. Let's hope that Komen's 2008 "strategic shift" in their Research priorities, not only translates to game-changing research, but also more $ allocation to the Research program.

    ReplyDelete
  9. I am President of METAvivor Research and Support, Inc., the 501(c)(3) non-profit organization that awarded the $55,000 grant in 2010 mentioned in the comment above. In response, yes, we will be awarding a 2011 grant. It will again be a small grant because ... despite the fact that we advertise widely that 100% of all research-designated donations will be used solely to fund metastatic breast research, and despite the growing awareness that many organizations devote only a small fraction of donations to cancer research overall and even less to stage IV cancer research ... despite all this, most people -- even those with metastatic cancer -- prefer to donate to the large, well known organizations.

    That being said, our small grants are in great demand ... we have already had over 100 inquiries from career metastasis researchers concerning our 2011 grant. METAvivor has a series of annual fundraisers such as a triathlon (April 16 in Annapolis), authors luncheon/silent auction (Oct), holiday home tour (Dec), etc. In addition, we encourage donations, third party fundraisers and anything else that will help us raise the money needed to fund the research that will ultimately end death from metastatic breast cancer. CJ (Dian) Corneliussen-James, President, METAvivor Research and Support, Inc. (www.metavivor.org)

    ReplyDelete
  10. Dear Anonymous,
    I am of the same opinion as Anna. If Komen is putting it out there "for the cure", then definitely the bulk of the resources should absolutely go to research. I am sure if a poll was taken, the majority of the Komen donating public would strongly feel the same....and quite frankly, would be quite surprised at way Komen allotcates their funds. I once spoke to an employee of the American Cancer Society and she told me that she donates her money exclusively to Komen because they will find a cure and when they do, it will be the key to curing all cancer. So, not only does this person who works for the ACS, whole heartedly believes Komen will put an end to breast cancer, but is fully expecting Komen to cure all cancer.

    The Komen Foundations has done so much to advance the progress of breast cancer treatment and has saved many lives and given hope. My personal mission is to increase funding for brain cancer research...a highly underfunded orphan cancer, for which there is practically no hope. It angers me to see how Komen misleads the donating public with the "FOR THE CURE" tag. I have been turned down for donations by people who support Komen FOR THE CURE....for the cure. And that is fine,really....if the money is truly going where the donor is expecting it to go. To me, its a calculated emotional deception by Komen to cash in and fund its agenda without really letting on. Come clean, drop the "FOR THE CURE" tag....or put your money where you "mouth" is.

    ReplyDelete
  11. Anna, Another informative post on this topic about how funds are actually allocated. Such conversations are truly starting to generate "rumblings" and questions. You are making a difference in bringing this to light. Thank you!

    ReplyDelete
  12. Anna - thank you so much for all your hard work and research here. You are doing a fantastic job. I take my hat off to you. Well done.

    ReplyDelete
  13. Dear all - thank you all for taking the time to comment. In highlighting this information I hope that it causes us to question the status quo, and continually ask ourselves whether what is happening is good enough? By setting emotion aside, and having a better understanding of the context of the numbers, we can start to know what questions need to be asked. As stakeholders, we have earned the right.

    And thank you to Uvmer for pointing out the difficulties she has faced in her fundraising and advocacy work for brain cancer. This is the dark side to Komen's relentless efforts to monopolize the cancer fundraising activities in this country. You can follow Uvmer's excellent advocacy work on Twitter via @uvmer.

    ReplyDelete
  14. Anna, amazing. Keep ranting and keep writing. We've nothing to lose and everything to gain. Well done.

    ReplyDelete
  15. Remember, every organization who is sponsoring "research" for a "cure" has a stake in the disease continuing. If a cure was discovered, would they run with it? It would put them out of business. What would they really do? Food for thought.

    ReplyDelete
  16. Anonymous...I don't want to be naive, but oh my God...If that is the case, then we truly have no hope. If foundations are holding back research money so they can stay in business, then so are the researchers and drug companies. It is obvious that Komen is big business and that other companies are making money hand over fist by being "attached" to Komen...but it makes my whole body hurt to think that staying in business is the motivation. Thats why this information needs to be out there...so it is food for thought for all. I feel so incredibly sad at the idea of perpetuating diseases that take the lives of those we love, to make money or stay in business. If it is true....what has become of us?

    ReplyDelete