I called my senator's office and they called me back. It seems this is getting to be a regular problem.

Drug companies are stopping production of medications for rare diseases because they don't make money. Or they don't make enough profit on them. They were going to be looking into this and talking to other senators.

So maybe those of you in the US would like to call your senator's office. It would be nice if we could help others in the same boat. And help ourselves too.