Not a rock, but a mountain

The New York Times did a story two weeks ago about the “feel-good” war on cancer. In it they revealed that the CEO of Komen for the Cure pays herself $650,000 a year and that the vast majority of the money the group raises is spent on “raising awareness” and “education” about breast cancer. In fact, of the more than $2 billion the group has raised in the last six years, only about $77.5 million was spent on breast cancer research.

…every penny you donate for NET cancer research will go into NET cancer research…

I read numbers like that and it makes my blood boil. First, because you would have to be living under a mountain not to be aware of breast cancer in the US at this point; and second because her salary amounts to more than ten percent of the total amount raised for NET cancer research last year.

What would $77.5 million mean to NET cancer?

But I also have to admit to a certain level of jealousy fueling my anger. I can only dream about what we could and would do if we had a research budget of $77.5 million. The only thing in the way of full testing of both the Seneca Valley and Uppsala viruses would be setting up the safety protocols. We’d be able to accelerate the DNA research on NET cancer lines. We could actually pursue a number of other interesting ideas that I only hear occasional whispers about now.

Knowing what is killing you offers little solace in the absence of a potential cure…

Actually, that amount of money would likely overwhelm our slender research facilities. We might actually be able to afford to do the in-service training for primary care physicians we all dream of but have yet to find the money to pull off as well. And with that training we might actually begin to find more cases of the disease before it becomes irreversibly fatal.

NET cancer funding declines ahead?

But we are not going to see $77.5 million this year or next year or even the year after without a drastic change in the way things are. The fact is, I more than half expect we will see a decline in the $5 million total all the NET cancer groups raised combined last year. The economy is shaky. My friends at the American Cancer Society Relay For Life tell me that numbers are down virtually everywhere from where they were a year ago. I have not asked about the Boston Marathon Jimmy Fund Walk numbers year-over-year yet, but my sense is the numbers are running behind–though my own group is ahead of last year financially at this point.

The economy is shaky.

And the sequester is doing damage as well.

What I know and what I don’t know

I don’t know what happened at Komen. They had a great idea and a great mission. I don’t know why so many of the larger cancer charities pay their CEOs so much money or why they spend so much on administration and raising awareness–and so comparatively little on research.

I also have to admit to a certain level of jealousy fueling my anger.

There are cancers out there where raising awareness is an important thing–NET cancer among them. It is important people know about symptoms and ways to test for them. But research is hugely important as well. Knowing what is killing you offers little solace in the absence of a potential cure–or anything that even remotely resembles one.

My NET cancer pledge

So here’s my pledge: I’ll never take a penny for running Walking with Jane; every penny you donate for NET cancer research will go into NET cancer research, every penny you donate for scholarships will go into scholarships. For now, I’ll work on finding corporate and foundation money to fund education programs for doctors and the general public–or pay for them myself. I’ll pay for the office supplies and stamps and whatever else it takes to keep us moving forward.

…the CEO of Komen for the Cure pays herself $650,000 a year…

I know you work hard for the money you donate to charities like this one. We should all make sure that money is spent with that in mind.