I'm happy to report my husband David was approved for IVIG without too much wrangling with insurance company.
They rejected the doctor's first prior authorization request, asking for clinical chart notes confirming the SCLS diagnosis.
When she responded with the notes including Dr. Druey's confirmation, we got a letter saying the appeal would take 30 days, but if a delay would significantly increase risk to his health, we can request an expedited review.
I requested the expedited review via phone, and after being on hold for about 15 minutes got the approval!
He had his first infusion 2 days last week.
Insurance approval is only thru August 2019.
So I guess we have to keep standing on our head to request the infusions indefinately...
Thanks again for all who've gone before us to smooth out the way for this life saving treatment!