iwantmorethanapinkribbon
  • Blog
  • My story

Komen Race for the Cure ... more or less

3/7/2016

3 Comments

 
Picture
Once upon a time, a long time ago, I had a fascination with numbers.  I loved working with numbers and I loved learning how to work with them, especially in the world of statistics.  I dreamed of a career that combined law and statistics and set about to become a courtroom statistician.
 
Then, life happened.  While I did well in my statistics courses, I tanked in computer programing and calculus.  FORTRAN was the death of me and I still have nightmares over card readers, !JOB and !END and trying to figure out what was supposed to happen in between those two commands.  I made a D my first semester of FORTRAN.  I retook the class and I think the graduate assistant simply gave me a C to make sure I stayed out of his class.  I was awful at programming and was just as bad in advanced math.  I have eight hours of Ds in trigonometry and calculus.  
 
I switched over to business and found I could still use statistics and all was not lost.  Accounting was a new art form and the concept of marketing entered my vocabulary and I ended up graduating with a Bachelor of Science in Business Administration with a major in marketing management.  I enjoyed that for quite some time and had a career in business until my daughter was born in 2000. 
 
My last statistics class was over 30  years ago.  I’ve forgotten more than I ever knew, but I do remember a couple of key factors.  In a non-clinical setting (i.e. marketing), you can make statistics say/mean almost anything.  In 1983 I wrote a paper on how to lie with statistics and I learned how easy it was to make something look much more important than it really was.  That gave me a healthy mistrust in simple numbers without having substance behind them.  Rex Stout said it best in his novel, “Death of a Doxy,” when he wrote, “There are two kinds of statistics, the kind you look up and the kind you make up.”
 
Fast forward to present time.  Believe it or not, I’m not completely anti-Komen.  I believe that local Komen affiliates are providing seriously needed services in their local communities for people (mostly women) who have been diagnosed with breast cancer.  I have absolutely no problems with local affiliates being strong supporters and for being the first responders for the newly diagnosed who have no idea where to turn when they hear the words, “breast cancer.”  Because Komen is such a marketing juggernaut, that name is typically the first resource a patient may think of.
 
HOWEVER (that’s a big BUT), my admiration ends right there.
 
Where do the local affiliates get their money?  Their funds typically come from locally managed “Race for the Cure” or “Relay for the Cure” events.  Note the key words … “For the Cure.”
 
Last year I was in Philadelphia in April, a few short weeks before their Mother’s Day “Race for the Cure.”  This year, I’m returning to Philadelphia at around the same time and I’m expecting to see the same signs promoting the annual affair.      
 
Note these quotes in encouraging people to fundraise:  “Remember, coming and walking on Mother’s Day is an important way to get involved… but it is your fundraising that drives our power to save lives and cure breast cancer!”
 
In the Frequently Asked Questions, “Where does the money go?” is near the top.  The answer? 
 
“We (Philadelphia affiliate) keep 75% of money raised here at home to support our work in 15 counties. We contribute 25% to breast cancer research.”   
 
I’ve seen that 25% statistic thrown around quite a bit so I decided to pick up the phone and call the Philadelphia affiliate office to find out exactly what it meant.  Elaine Grobman (CEO of Komen Philadelphia) graciously spent time answering my questions and was very patient with me as I pushed to understand exactly what she was saying, as well as my desire to understand what is stated in Komen’s national records.
 
According to Ms. Grobman, every Komen affiliate submits 25% of their income (raised through races, relays, corporation donations, sponsorships, private donations, etc.)  to Komen national office in Dallas.  It was my understanding that those monies were put into Komen national general funds.  However, Ms. Grobman corrected me in that local affiliate payments to the national office are designated by contract to ONLY go into research.
 
Interesting.  I hadn’t heard that before.  I started digging around other local affiliate offices statements and noticed that they were saying the same thing … that local affiliate payments did not go to national administrative costs and were only used for research.  The Philadelphia office sent $625,000 to the national office, all of which went into research of some kind.
 
This makes me feel even better about local affiliates.  They are supporting their immediate community, yet investing in research to go beyond their local community.  It’s unfortunate, though, that the national office is not following through on their commitment to end breast cancer. 
 
Here’s where it gets ugly.  Komen is very, very transparent about where their money goes.  They like to throw around words like “largest funder of breast cancer research outside of the federal government” but they don’t acknowledge how much of their budget does NOT go to research.
 
Here’s some figures to consider.  I’m focusing on the latest figures to date, fiscal year ending March 31, 2015.  (You might need to zoom in to be able to read the numbers more clearly.)

Picture
Figure 1
According to this statement, Komen spent 16.58% of their total net public support and revenue on research.  But is that true?  Are those figures correct?  Consider this breakdown:
Picture
Figure 2
Look closer … Figure 1 shows that $41,498,217 was spent on research.  One would assume that meant pure research dollars.  Figure 2 shows that awards and grants for pure research was $30,174,566.  Under 75% of the research breakdown was actually spent on research awards and grants.

Let’s compare Figures 1 and 2:
Picture
Figure 3
Looking at the top figure, one would assume that 16.58% of the total net public support and revenue was spent on research.  The truth is, only 12.06% was spent on research awards and grants.

It gets worse.
Picture
Figure 4
Affiliate payments for the year ending March 31, 2015 totaled $20,910,092.  This means that the local affiliates funded 69.29% of the research awards and grants.  Total awards and grants were $30,174,566 (See Figure 2), meaning that the national office funded $9,264,474 in pure research awards and grants.
 
How much public support and revenue did they declare?  $250,276,362 (See Figure 1).  (Although, their tax form 990 declares gross receipts to be $279,485,608, but let’s stick with the consolidated statements to be consistent.)
 
If we subtract out the affiliate payments from the public support and revenue, the balance is $229,366,270.  This means the percentage that Komen national office actually spends on pure research grants and awards is 4.03%.
 
I’m not an accountant and I’m not a statistician.  However, I can look at these numbers for a single year and see that the majority of Komen’s national funds are not going “for the cure.”   
 
What does it take to change?
  Last weekend, my smoke detector batteries died and I had to deal with that screeching noise those alarms put out until the batteries are replaced.  However, over the next few days, the alarm continued to screech.  Turns out that it was time to replace the entire unit.  It wasn’t good enough to keep putting new batteries in it … a completely new model had to be put into place.
 
When Komen began, the model of public awareness and education was vastly needed.  However, 30 years later, it’s time to replace that model.  It’s no longer acceptable to say, “Early detection saves lives” because if that were true, all early stage diagnoses would result in a 100% cure with no risk of recurrence.  There are too many early stage patients having metastatic recurrences two and three decades after their primary diagnosis.   More research must be given into the biology of tumors to understand how to stop metastasis long before it occurs.
 
Research takes money.  Komen, please open your corporate wallets and designate more money into the area where differences can truly be made.  No more running and racing for a cure.  Let’s have research for a cure. 
3 Comments
karen l hoak
3/7/2016 08:20:43 pm

My greatest challenge is getting the checkbook to come close, this from the daughter of a CPA. You made it easy to understand, I glossed over what the columns purported to be, and focused on what the final cut of the pie was and it was pitiful. All I know is I have lost one Stage II friend and have another in hospice as I type. I have not had a reply to my last P.M. in two days and am afraid to call. Komen is no friend to these women, the Race has done nothing for them, the small Cancer Support Group I am in, I need to make a decision to stay in or bow out - emotionally I can't lose too many more women I come to love..

Reply
Sharie Thomason
3/8/2016 02:16:17 pm

Thank you for doing all of this work........I have worked with and come to know every Cancer Charity in my County-there are a TOTAL OF TWO Legitimate ones in my community~imagine raising thousands of dollars and finding out it was spent on gowns, formal wear, expensive shoes, lunch dates, airfare, fancy restaurants, matching outfits for the families. I did Radio, TV, Media, Speeches, Interviews etc. Advocating for Early Detection..............and then I discovered the 1-8 becomes 1-3 with METS! When I began to speak about that.................it was cut-the most important Statistic about BC no one really wants to know!

Reply
Beth Caldwell link
3/8/2016 08:07:41 pm

Oy vey. It's even worse than we've been lead to believe. Komen should be ashamed. The only thing that will cure us, the ONLY thing, is research. Why aren't they trying to save us? Why?

Reply



Leave a Reply.

    God's Story

    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

    The Best Metastatic Breast Cancer Blogs of the Year
    Healthline

    Archives

    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013
    December 2012
    November 2012
    October 2012
    September 2012
    August 2012
    July 2012
    June 2012
    May 2012
    April 2012
    March 2012
    February 2012
    January 2012

    Categories

    All
    Blood Test
    Breast Cancer
    Chemo-cap
    Chemotherapy
    China
    China Post Office
    Construction
    Fish Testing
    Hair Cut
    Hair Loss
    Her2
    Hong Kong
    Humor
    Joy
    Losing Eyebrows
    Nadir
    Pink Ribbon
    Shengli
    Staging
    Starfish
    Symbolism
    Tnm Rating
    Tumor Shrinkage
    Victory
    White Cell Count
    Xile

    RSS Feed

Powered by Create your own unique website with customizable templates.