Crazy thought, but what could it hurt? Write both of your senators, explaining your diagnosis and treatment, and asking them to help you persuade the insurance company to cover some of these costs. Remind them of how many people suffer from this and how grateful they'd be for your senators' help and bringing attention to this matter.

I imagine it's hard for you to write even more, but I bet one or two writers who are your fans might be happy to draft something for you. In fact, one or two people reading this might draft something up and send it to you privately.

We all pay taxes and it's perfectly okay to expect help from the government when we need it.

Ask and keep asking!

Another thought is a web site, unless there's already one. Again, someone reading this might volunteer to help with that, too.