Health insurance

I believe that the bigger concern is for those of us that do not respond to the standard, less expensive treatments and have no other options but the more expensive treatments. For me now that is IVIG.

It seems to me that the insurance companies have written all their contracts such that they avoid paying for these more expensive treatments by calling those treatments experimental and investigational without any real consistent guidance as to how that determination is made and or what options are available to insured to appeal that determination. As far as I can tell it seems that anything off-use is called experimental and investigational however my research indicates that a far greater majority of uses of these treatments are off-label, for many reasons, most of which are financially driven.

So what would be needed to make IVIG for MG no longer considered experimental and investigational. I know trials are being done but how many need to be done/for how long? Anyone have any insight on this issue?