My husband Jeff recently changed jobs and insurance carriers.  He is actually back at a company which covered his IV/IG before (Aetna), but they are now saying they won't cover an "experimental" treatment.  Jeff's doctor is being a strong advocate, and they are reviewing his case.  We won't know the decision before the end of the month.   Naturally, this has interrupted Jeff's IV/IG treatments.  So we're a bit stressed.

IVIG therapy for SCLS is NOT an experimental treatment.  There are more than 25 medical articles written about it, including several very convincing ones published last year in authoritative journals -- see the Disorder Resources section of this website -- and you can also get a supportive letter from Dr. Kirk Druey at NIH, if Jeff has ever been seen by him.  (It's easy to arrange, especially since you are in the Washington DC area.)  Let me know if you'd like any of the top articles for you to send to Aetna, or if you or Jeff's physician need anything else.

Thanks, Arturo.  Jeff's doctor has all that, and has the contact information for Dr. Druey.  Jeff was part of that first leaky capillary survey that NIH did.  We actually just heard this morning that Aetna has approved IV/IG for the next six months, so we're much relieved.  We thought we were going to have to wait until the 27th to hear the results of the appeal, so maybe someone actually did their homework.

Just to close the loop on this, Aetna finally approved the IVIG and I had my first treatment.  It’s nice to have this resource for support.  Thank you very much Arturo.