Doctors should be the ones making the medical decisions, not the faceless employees working with spreadsheets at insurance companies. Our system is backwards and needs to be overhauled.
There is another high profile ALS sufferer in the US: Jason Becker, a super virtuoso guitarist popular in the 80s, tragically afflicted at the very peak of his ability. Still alive, still writing music, but can’t move anything but his eyes or breathe. No one sentenced him to death or anything.