Money is the root of all research

We are in the heart of fundraising season right now. Most organizations push for money during the winter holidays, but Walking with Jane doesn’t. We don’t like getting lost in the avalanche of mail that season delivers. We’d rather push from February to October when we have a clearer field to work with.

It makes me sad–and it makes me sick.

In that time period we do most of the walks and other events that fuel our efforts. I feel better about asking people for money when I can do something to feel we have earned it. By late November and December winter has closed in, bringing with it memories of Jane’s last days that are sometimes unendurable–and weather that is largely uncooperative.

Cancer never takes a break

I don’t stop thinking about raising money in those deep winter months, though. I can’t. Cancer never takes a break. It just keeps growing and spreading. The need to fund the research never ends either–especially when it comes to carcinoid/NETs. This is a disease that has been underfunded for decades.

We don’t like getting lost in the avalanche of mail…

Yesterday’s post about Dr. Robert Fine’s work on CAPTEM underlined that yet again for me. He first came up with the idea of that combination nine years ago. A year later, he gave it to his first patients. But we are really only hearing about it for the first time this year. So far, only 28 patients in entire carcinoid/NETs community have received the CAPTEM regimen.

Profit margins versus human profit

The central reason for that comes down to money–or rather the lack of it. Both Capecitibine and Temozolomide have been around long enough to become generic drugs. Drug companies see no profit in them–for all that patients might profit from them. Where a drug company sees no profit it sees no reason to spend research money that, used elsewhere, might bring a new–and more profitable–drug to market.

This is a disease that has been underfunded for decades.

It doesn’t help that Medicare and insurance companies view intravenous and oral drugs as different beasts in terms of reimbursement. If the drug needs to be injected, they will pay more than they will for a drug that is simply ingested–a lot more. Hospitals and clinics are trying to change that, but with only marginal success. The drugs are not cheap, for all that they are generic.

Money, money, money

And while charitable and government funding for carcinoid/NETs research is better than it was four years ago, it is still pretty pathetic. The promising Uppsala oncolytic virus–that was sitting in a freezer when Jane was diagnosed–finally found funding last fall for a Phase I test in Europe. But it only happened after a crowd-funding effort turned up one billionaire donor willing to pony up the funds to get it there.

The drugs are not cheap, for all that they are generic.

Federal money for all cancer research is drying up. Barely five percent of all cancer research proposals find government funding.There are just two federal grants extant for carcinoid/NETs. The sequester has cut both those grants the last two years.

Jane could still be here, if…

I look at all of this and know Jane would still be here if we cared as much about cancer as we do about war and tax breaks for the rich–if we cared as much about knowledge and research as we did about profits.

Federal money for all cancer research is drying up.

But we don’t. And the result is I can only see her and hear her in my memories. The closest I can come to touching her is to run my fingers over the stone that marks her grave.

Facing the past and the future

I know, too, that unless something changes, more people will die the same death she did–and more spouses will face what I do. So I walk, I sell this and that, I lobby, I figure out new ways to live frugally, I beg strangers and friends alike for money–hoping that the few dollars I raise or contribute will make a difference.

I can only see her and hear her in my memories.

Potential treatments should not languish in a freezer for four years. It shouldn’t take us nine years to get a promising treatment to people who need it. For all that yesterday’s post excited me as I researched and wrote about it, so much of the back-story filled me with rage and hurt. Here was a possible cure–and we never saw it, never heard of it, never had a chance to try it.

It makes me sad–and it makes me sick.