But why can they not get a supply form Bayer, not being profitable makes no sense then they would stop making it altogether. Why do they still make it at all?
If it was about profit they could simply charge him more then the production cost, if he agreed to pay 2-5x above cost they make profit, he gets drug. Pure capitalism.
Three things (one in relation to the text above, two in relation to other postings here):
First, I read somewhere, that the CDC has a supply of the drug, which they will release to doctors who have patients who need it (ie. have sleeping sickness, and meet the other criteria). A course of this drug (not one dose, but all that a infected person needs), costs $27. So even if someone would need to pay double price for it, we are still talking about little money.
Second, a lot of people are mixing FDA regulations covering prescribing drugs off label, and running clinical trials. These are different activities and covered by different rules. Yes, if a drug is approved in the US a doctor can prescribe it "off label" for other diseases or symptoms. But that does not mean they can run a clinical trial with it. Clinical trials require approvals from IRBs (a review committee) and you can't just say "we're prescribing this off label". In this case, the drug is not approved in the US, a researcher would need to file an IND (request for FDA approval of use in research). A doctor can not just buy the drug in another country and bring it in him or her self. He or she would still not have approval to use it in a clinical trial. ("Off label" approval can not be used for clinical trials.) I don't remember if an IND is approved for a drug for one disease, means you can test it for other diseases, but I think the answer is no.
Third, some one said that a phase-III trial would cost $20 million, and the drug was too cheap to pay back that cost. This is not how it works. First of all, no one starts out with a phase-III trial. You start out with a phase-I trial. For a drug like this one (dirt cheap and well understood), it would take much less than a million US $. I've heard of researchers doing this kind of small phase-I trial with overhead money they had in their lab already. Good results from a phase-I make it easier to raise money for a phase-II, and so on.
Remember that the drug is not approved in the US right now. So that means that if there was a successful phase-III study, they could set the price at any level they wanted. The fact that it is very cheap to produce means that they could earn a huge windfall. I think people are mixing up drugs that are available in the US, with those that are not. Sure, if a drug is already available in the US, then if it is cheap, that cuts into profits. But this drug is not available, so if it was found to cure (or even treat) ME/CFS, that cheapness would just turn into a huge profit margin.
Based on all this, I don't understand why Bayer would not provide the drug to a ME/CFS researcher in the US. It just doesn't make any sense.
