Three things NET cancer patients can’t count on

NET cancer will never be cured by the free market. It will never be cured by a government that makes decisions based on cost-benefit analysis. And it will likely not be cured by the kindness of strangers.

That needs to change.

Saturday, I received a note from the Carcinoid Cancer Foundation about a potential cure for NET cancer that is sitting in a freezer in Sweden. The difficulty is the researchers cannot find the money to do even a Phase I trial of the oncolytic virus they have developed that, at least in mice, likes to eat NET cancers. Because the virus was engineered from an existing virus–and the group published its results very quickly–the virus cannot be patented.

NET cancer and the Market

The result of that is that no big pharmaceutical company is willing to pony up the money to fund the trials in humans because without a patent they will be unable to recoup their investment. Even were the virus patentable, given the relatively small market for the drug and the fact if it really works there is no repeat business–ideally, you use it once and the cancer is gone–the profits would likely be relatively small. And where profits are small, private enterprise has small interest.

NET cancer and government

Of course the next place the Swedes turned was to their own government. But the government of Sweden does not fund human trials–that is the purview of private enterprise.

I prefer not to bet on the kindness of strangers.

But even were the trials done here we would be hard-pressed to get money for the trials from the US government. Remember, all federal funding was cut for NET cancer research in 1968 on the basis of cost-benefit analysis. We have a mere 120,000 diagnosed cases of NET cancer in the US. There are a lot more people with lung cancer, and breast cancer, and…and they will die more quickly than NET cancer patients. So solving those cancers provides a greater benefit than solving NET cancer.

I would not hold my breath waiting on the US government to step in to solve this funding problem.

NET cancer Naming Rights?

The Swedes have come up with an approach to funding worthy of any American sports team in search of a new venue: Naming Rights. Donate $1.6 million and you get to name the new virus. That could, I suppose, be a big deal: What else do you get the multi-billionaire who has everything besides putting his name on a new virus? Assuming it works virtual immortality is assured.

…it may do nothing at all.

But that, in part, is the rub. We have lots of drugs that work well in mice or fish or monkeys. But very few of those drugs work equally well in humans. And some of them prove deadly. This new oncolytic virus may prove out every bit as potent in humans as it does in mice. Or it may do nothing at all.

Trolling for whales

There are people out there for whom a million or two or three is pocket change. None of them are likely to read this post, but maybe one of them will. Maybe you know someone who knows someone who knows someone who can get it to them.

…where profits are small, private enterprise has small interest.

But I prefer not to bet on the kindness of strangers.

Meanwhile

So, in the meantime, I’ve asked a couple of doctors to take a look at the research on this particular oncolytic solution. I’m going to continue to do some research myself. In a few days–a couple of weeks at most–I hope I will have a clearer idea whether this is a good investment for

our time and resources or not.

NET cancer will never be cured by the free market.

For 44 years NET cancer patients and their caregivers have known they can only rely on their friends and each other.

That needs to change.

(For a chatty, in-depth look at the potential cure for NET cancer, here is an article from a British newspaper.)