Any Idea when IVIG will be a covered benefit for PANDAS?

[Janedoll]

Hello,

 

I'm new to this forum. I have a family member who is diretly impacted by PANDAS. IVIG has been suggested as a possible treatement by our doctor but our insurance company is denying care. We noticed that there is a phase 3 clinical trial going on right now for IVIG and PANDAS. Any idea when this may be an FDA approved treatment for PANDAS? Or if not, any idea on how to get IVIG covered? Thanks.

 

Jane

[tj21]

Welcome! I don't know about the FDA approval. Here's an older thread re. insurance. If you search the forum there might be other threads as well.

http://latitudes.org/forums/index.php?showtopic=23585&hl=

[pr40]

see if you can get a different diagnosis, not pandas. ivig may be approved by your insurer for encephalitis and low immunity or other similar conditions.

[Janedoll]

Thank you the responses. I found an interesting document online. http://www.cga.ct.gov/2015/fc/2015SB-00015-R000012-FC.htmDoes anyone know if this bill passed? It's about mandatory IVIG coverage for PANDAS in CT beginning in January 2016.

[kmacdonald34]

see if you can get a different diagnosis, not pandas. ivig may be approved by your insurer for encephalitis and low immunity or other similar conditions.

I agree. My daughter has borderline low immunity and Dr Williams said this diagnosis is important to hold on to in case with IVIG down the road.

[Mom23boys]

Yes - you want to get an immunologist involved and have immunological testing done. This is the only way I have heard of insurance companies covering IVIG - low immune function.