When will IVIG be covered?

[LaurenK]

Any ideas when IVIG will be covered? If the cunningham tests are FDA approved, wouldn't that technically serve as diagnostic criteria? If the phase III clinical trial that swedo is doing proves that IVIG works, will it be mandatory for IVIG to be covered? Any ideas or opinions would be appreciated.

[Mayzoo]

If your child has a primary immune deficiency, encephalitis, or some other similar recognized condition, then it may already be covered for you, especially if the doc is willing to go to bat for you. Have you had the IgG, IgM, IgE, and IgA levels tested? If not, that would be a good start since many PANDAS/PANS kids have immune deficiencies.

 

PANDAS/PANS is still not a "medically" recognized condition, it does not have an ICD-9 code and it is not in the DSM. IMO, It will not be commonly covered until these things happen. Even after these things happen, it will have to be proven to the FDA that IVIG is an efficacious treatment. Then, and likely only then, it will become commonly paid for. I have no idea how much longer until it becomes a recognized disorder/disease.

 

Some people have been able to appeal a rejection (sometimes it takes more than one appeal) and get it covered, but I do not know under what diagnosis they are getting it covered. Hopefully they will chime in here.

 

Good luck.

Edited May 30, 2013 by Mayzoo

[beeskneesmommy]

Whether or not the 'Cunningham' test is approved does not hinge upon IVig being covered. IVig is still considered and listed as experimental for the treatment of PANDAS. My hope, however, is that the current ongoing trials at NIMH will eventually provide us with what we need...but it may still take several years.