Just a follow up.... Mom passed away less than a month after starting this drug. Not sure if it helped her symptoms any, or if it even possibly contributed to her quick decline. Never did figure out if her insurance would pay, as she had free samples that lasted until she passed.
Personally I would avoid this drug if at all possible, due to it being so new, the cost, and from what I saw, no real benefit. At least for someone who is at end stages of this awful disease. Hopefully it works well for someone who is younger and in better health than my mother was.