notes-experimentalCureOrganization

Reading about the current Ebola outbreak (Aug 2014), it bothers me that there are a number of vaccines and even experimental therapies that can cure post-exposure with a high degree of probability, but they have not been produced and made available to the people who have been infected or are at high risk, and the reasons afaict seem to be bad ones: (a) cost of funding trials for a drug with a small market, (b) the legal requirement of doing trials before giving out the drug, (c) the difficulty of finding and signing up patients for a trial in a situation where the disease only occurs in sporadic outbreaks, and one good reason, (d) worries about making people distrust doctors if they are given experimental vaccines.

Instead, people infected or at risk of infection are either not given any potential cure, which in the case of Ebola means they probably die, or in a few cases (at least a few infected healthcare workers) they are being given serum from other people who survived the disease, which appearently has a similar effect to a vaccine, but not as good and more dangerous. I think we already have a vaccine that appears to be safe in non-human primates and that is ready for human trials, so wouldn't it make more sense to give the exprimental vaccine to the people who would otherwise be given serum? Afaict the reason they are taken serum is because it is low-tech enough that they can do it themselves, without exposing a corporation to the legal liability of doing something risky.

I say these are bad reasons because there is an obvious alternative; produce expensive, small runs of the experimental therapies, and then test them on informed patients who are infected or at high risk. If they seem to work and be safe (or if their level of harm seems worth it given the severity of the disease), scale up production gradually as needed. Eventually, for each experimental therapy, either you'll discover that it's bogus, or you'll have enough data to give it to everyone.

If we had done this, we probably could have wiped out each outbreak of Ebola when it was still a few hundred people.

The best thing would be if governments would (a) legalize this sort of thing and (b) fund it, since wiping these things out when they're small is an obvious public good/tragedy of the commons sort of thing.

But i can't influence the government, so here's a proposal for a private organization that could help.

It's a non-profit or coop or insurance company. The idea is, that people who are well-informed give prior consent to being tested with specific experimental drugs before they are infected. They also pay money. The money is in one or both of two forms; (a) they buy their own reserved doses of a specific treatment, which are then saved especially for them, and not used even if other people need them (b) insurance premiums, which are computed so as to give a high probability that all people who paid will be served if they need any one of a buffet of available treatments.

However, the organization does not just provide for its members. For every dose a member buys, the organization also produces and donates X doses to the public. This allows the organization to provide experimental doses to healthcare workers and other informed at-risk or infected people early in an epidemic.

Some details:

• some treatments cannot be kept indefinitely. For these, if people buy them, the organization is constantly producing more, and the newest ones are stored in case the members who purchased them need them. But as older doses are being replaced by newer ones, the older doses are then made available for donation to the needy.
• the members will worry about the government seizing the reserved stock in case of an epidemic. For this reason, the organization (a) offers to send members their doses upon request and for an additional fee, so they can store them themselves, and (b) is legally and logistically composed of many affiliated based in different countries, with dose storages of local citizens in that country.
• the organization also solicits pure donations and government grants which it uses to produce stock that is all for giving away to the needy/at-risk/infected.
• the idea is that when there isn't enough demand to fund studies or mass production beforehand, (a) do very small production runs (e.g. even the original lab making a few doses by hand) at high per-unit cost, (b) sell doses to rich people who can afford to spend what to them is a small amont of money on protection against a low-probability event, (c) get informed consent in a situation where people have time and lack of pressure to think about it.

Note that since only people who are informed enough to sign up before they are sick can be members, there is less chance of someone uninformed signing up when under pressure.