Hi Dgnk, you are not too far from me! I'm in Grafton. I go to the UMass ALS Clinic. I have BCBS, but it is out of state which makes things a little trickier. We have the right to use any BCBS PPO provider in MA, but sometimes at first glance things get denied and we have to force them to look closer at our plan and see that. Not sure if that out of state confusion is part of the issue here. We also have separate drug prescription coverage so my neuro said BCBS may be denying because they consider the drug itself the responsibility of our prescription drug provider. I will definitely update as we go through the appeals process. My neuro seems confident it will be sorted out.
So my neuro said that they will have me come to the hospital for the first week for infusions, it would be the same building as the ALS Clinic (UMass University Campus, ACC building). If I am tolerating it well they will put in a PICC line and send a nurse out to teach us how to do home infusions. After nurse has spent a week or so training us we will be doing it at home on our own and drug will be delivered to the house. After 3 months if I still want to continue long term they will replace the PICC line with a port.