Hello. I am new to ALS. Medicare just kicked in and my Radicava (the best drug available for ALS) has now stopped, after being covered by private insurance. $21,000 a month through Medicare.
I wish there was more focus on what we can do and what our options are. Isn't this the exact opposite of Medicare's mission of helping US citizens?
Most foundations won't help if Medicare does not cover.
Feeling somewhat hopeless. I'm certain there other out there with the same feeling. We could use some leadership on this issue.
Best to ALL the readers of this message.