What I am going to say today some may find offensive. But I am at a level of anger that is hard for me to let go of.

Most cancer funding in this country comes from the federal government through the National Cancer Institute.The NCI makes its decisions on what cancer research to fund–and how much to spend–based on how much money the congress has appropriated and, apparently, what group has the loudest voice.

The group with the loudest voice–at the moment–garnered $631 million from NCI last year. That is more than the NCI decided to spend on the next two categories of cancer combined. And that form of cancer that got the big check is only the third most common cancer in the US. The number one form of cancer in the US finished third in NCI spending with $281.9 million appropriated. The second most frequent cancer  finished second in spending with$300.1 million.

Number four, at $270 million was also fourth in incidence. But number five on the frequency chart finished seventh in research cash with a paltry $22.6 million. But the sixth and seventh most frequent cancers received $102.3 million and 122.4 million respectively.

The top four cancers all had significant increases in funding from 2009 to 2010. With the exception of a small increase for number 9, all the others in the top ten took cuts.

How did neuroendocrine cancer and carcinoid syndrome do? They are not even on the list of all the cancer research funded by NCI last year. The only conclusion I can draw from this is the federal government spent so close to nothing on this last year as not to make any difference.

That’s right. 11,000+ people were diagnosed last year with a cancer the NCI barely acknowledges exists. We are witnessing a cancer whose diagnosis is increasing by five percent a year–and which may well have far more cases being misdiagnosed or totally missed every year–whose researchers essentially have to rely on the kindness of strangers for funding.

I say “barely acknowledges” because the federal government did organize a session for doctors to get together to talk about what the research priorities for NEC ought to be in the future. And maybe some money trickled in from some other cancer research somewhere. It’s possible.

But given the current mood in Washington, I don’t see things getting much better on the NCI front.

But, you say, what about cutting some of the money from the top fund-getter? Surely we could get something there? More than twice as much money as the next two combined? Surely taking from that would not cause a fuss.

I left those top ten cancers nameless to this point for a reason.

What would the political price be for cutting the budget for breast cancer? A cancer with a month devoted to raising awareness about it?  A cancer that is so big in the public mind it can get the manly men of the NFL to wear pink shoelaces? A cancer whose image is so big and so pervasive that it gets #1 money despite being the third most frequent cancer in the US–ahead of lung cancer (#1) and prostate cancer (#2)? And get twice as much as either of them?

And I can’t bring myself to argue against funding for breast cancer even if it meant more money for NEC research–which it probably would not. My sister is alive today–about 15 years after being diagnosed with a particularly  virulent form that was on the edge of going from stage 3 to stage 4–because of the money we have poured into that disease. My sister-in-law is not buried next to my wife because research into early detection spotted her virulent form of the disease at stage zero. She says she thinks of the experience as no more than a cold she got over–when she thinks of it at all.

But last year we spent less than $3 million on NEC and CS–probably less than $2.5 million. And less than that the year before. And less than that the year before.

Without early detection–actually accidental detection–Jane never had a chance. She never had the chance my sister had. She never had the chance my sister-in-law had. She never had a chance because our system of funding research is based on cost-benefit analysis and who yells the loudest.

No drug company is interested in the disease because they don’t see a profit in it. That is why we have had only one drug approved for NEC in the last 30 years. And that drug only addresses symptoms. It is not a cure or anything that looks like a cure. And it only works on the tumors that start in the pancreas–the least common of all NETs. And I’d be willing to bet we would not even have that if Steve Jobs, CEO of Apple Computers, had not been diagnosed with the pancreatic form eight or nine years ago.

Even the other drugs we have were not developed to treat NEC. They were created for use in chemo-therapy patients who had problems with diarrhea as a side effect of their treatment. Now I read that Affinitor–the new NEC drug–has successfully finished phase three trials for use in breast cancer treatment. The cynic in me wonders if it was developed for that all along–and its use in NEC was pure serendipity. Not that I really object one way or the other. When you have but one or two arrows in the quiver you are not too proud to pick up what is lying on the ground.

People wonder why I worked so hard and badgered so much in my efforts to raise money for the Jimmy Fund Walk this summer. People wonder why I button-hole anyone I think may be a policymaker for cancer charities that may be able to shake loose even a few pennies for research–why I say I will go anywhere and talk to anyone if it means I may be able to find a few more dollars to research and treat this disease.

People wonder why I spend hours every day chained to a computer, working on this site, writing letters–why I seem to be working even harder in retirement than I did as an English teacher in the classroom.

I have watched people die: I have seen death by lung cancer, by breast cancer, by prostate cancer, by colon cancer. I have watched people die in automobile accidents and the slow descent into Alzheimer’s. I have watched them die of heart attacks and pulmonary fibrosis and cystic fibrosis. And every one of those deaths was painful.

But the last weeks of my wife’s life were more horrible than any of them. I watched her world shrink to the size of a hospital bed.

But that was not the worst.

I watched that proud woman realize she no longer had any control of her bowels.

But that was not the worst.

I saw her despair when I had to tell her I could not pick her up and carry her to the bathroom without tearing out the wires and tubes that were keeping her alive.

And that was not the worst.

I watched her shame as I helped change her diarrhea soaked bed linens.

And even that was not the worst.

I watched her mind descend into chaos.

And even that was not the worst.

For what was the worst, I have no words–I can only say it is a vision that haunts me even now, nearly 10 months later–a vision that combines every aspect of every death I have ever encountered in the worst possible ways.

That finally, after a long struggle,  she died peacefully in my arms is the only thing that allows me to go on.

The thought that somewhere someone else is going through that hideousness as I write this–as you read this–drives me–as I hope it will drive you–to do all I can to remove this nightmare from the world, so that some day no one will experience what she went through and what I went through.

And god help anyone–or anything–that gets in the way.