I have Cystic Fibrosis. Orkambi is the closest we've been to a cure (treating it at cellular level). Retail: $260,000 a year. However, I pay $15/month. (insurance + manufacturer subsidy). Many of my other medicines (which would cost another $100k+) are similar. I picked one of the better insurance packages (about $375/mo); I pay another $100-200 a month in copays to get $400k or more in medicine.

I'm also in the US. Why is my experience so much different than yours?

(edit: some punctuation)