I am puzzled by the above post.  I have been on Soliris since 1/20.  The hospital(infusion center is part of hospital)bills a horrendous amount to Medicare.  Medicare pays what it pays and by law the hospital is obliged to accept that amount.  My supplemental insurance pays what they pay and that’s that.  The only cost I have incurred for Soliris was the Meningococcal vaccines required before  beginning Soliris.  Medicare refused to cover them and all appeals failed.  Truly the only real costs I have had to pay myself have been the Part D drugs (Mestinon and Cellcept) that I take.  I know the post refers to IVIG but I was on IVIG before Soliris and had no out of pocket expenses for that treatment either.