On the money trail

I’m aggravated today. The fact is, I’ve been aggravated for several days. It began with a knee issue during a training walk last week that has left me frightened and hurting. But it is fueled by some things I’ve long suspected being confirmed about carcinoid/NETs funding as well as the stalled pace of fundraising efforts both for our Marathon Walk effort and other such efforts.

 None of us can afford to sit on the sidelines…

When I first started working on Walking with Jane, I spent considerable effort trying to unravel how much money was being raised and spent on the disease. That’s not as easy to do as it looks. Places like the American Cancer Society don’t do a very good job of saying what particular cancers they put research money into. Individual cancer centers suffer from similar problems. It isn’t that they won’t tell you. You just have to find the right people to ask–and they are not always easy to reach.

How much money?

Josh Mailman, a NET cancer patient who is also an impressive advocate for the disease, last week told a group of us in one of the online support groups the results of his latest efforts to unravel carcinoid/NETs funding. The numbers were not pretty–and some people in a position to know pointed out a couple of his figures seemed a bit over-optimistic.

It isn’t that they won’t tell you.

Josh’s estimate of the total available money for research into carcinoid/NETs is about $7.5 million. But less than one-third of that total comes from charitable giving. The lion’s share comes from drug companies and the federal government–though the feds currently contribute only about $1 million to the total. Individual giving, Josh thinks, still totals about what it did four years ago–about $2 million.

Patients and money

That works out to about $15 per known patient–a paltry sum that goes a long way to explaining why progress is so slow. Even with what drug companies and the feds kick in, we are talking spending on carcinoid/NETs per patient of around $50. In terms of cancer research, that is pathetic.

The numbers were not pretty…

Then, as that conversation continued, a doctor who heads one of the major carcinoid/NETs programs revealed that his department is being down-sized because there just is not money to keep it going at its current level. And if that program is in trouble, others likely are as well.

Too little money is too little money

Meanwhile, we keep writing letters and trying to invent new and different ways to raise money to fight this disease. But I feel sometimes as if we are trying to bail out the Titanic with a tablespoon. Between the three carcinoid/NETs teams that historically have done the Jimmy Fund Walk, we raised about $70,000 in the past. This year, with less than two weeks left before the Walk, it looks like we are going to be well short of that number.

…his department is being down-sized…

Part of that is my fault. I’ve had three gum surgeries since March, lost my father, my niece, and a good friend from high school. I still have not recovered from Jane’s death. I feel about as beaten down as a man can feel. The energy just is not there to get through things on too many days.

Money without walking

And now I’m looking at a knee injury that may mean not only that I can’t walk this year, but that I may never be able to take part in fundraising walks again as an active participant. Oh, I’ll volunteer and do all that I can, but I’m under no illusion that this will make my fundraising efforts easier. It will make those efforts more difficult.

…we are trying to bail out the Titanic with a tablespoon.

So I’m sitting here this morning  feeling sorry for myself, feeling sorry for patients, feeling sorry for doctors and researchers–and getting angry at myself that in three years I haven’t managed to do more than I have to get this thing moving forward. I’m thinking we need to rethink what we are doing on the financing side of things–rethink what we are doing on the organizational side of things–and do so in some pretty radical ways.

The road ahead

I don’t have answers for any of this that are ready for public consumption. I just know that what we are doing currently isn’t being very successful–and that people are hurting–and dying–as a result. We need to figure this out–and we need to do it soon.

…we need to rethink what we are doing…

I’ll be writing more about this in the coming weeks, but that writing can’t take place in a vacuum. We need all the interested parties involved in this conversation: doctors, researchers, foundations, caregivers, patients and families. None of us can afford to sit on the sidelines and watch or wait for someone else to solve the problems we confront.