Oooh, this sounds like a box of frogs. I'm so glad I'm not in the U.S.
Having moved from the UK and its NHS which I was confident would take care of me for ever, my Dx in Oz struck the fear of wotsit into me.
Luckily, even without private health insurance, things aren't too bad. my neuro works out a bit costly but my GP is free and my Beta is $30 a month.
Could be worse.

I hope you get the help you need. I can't imagine being in your position. need the treatment but can't get your hands on it...