IVIG DENIED!

[BoyIowa]

We have been praying for an approval - denied! IVIG is considered experimental for PANDAS and Lyme. I am so angry! Our insuance will pay for a sex change if I want it, but not for treatment that may help my ds because it is cinsidered experimental, investigational or unproven and not medically necessary. I wonder what nay-saying doctor is on their board.

 

Sorry to vent - spent an hour shoveling snow to work off some anger, but I think it made me more mad thinking about it. Where do I start on the appeal? I think it has to come from me as the request for IVIG came from a LLMD and we are seeing another doctor for PANDAS. Anyone have good experience from an appeal? Did you submit or the doctor or both?

[tpotter]

We have been praying for an approval - denied! IVIG is considered experimental for PANDAS and Lyme. I am so angry! Our insuance will pay for a sex change if I want it, but not for treatment that may help my ds because it is cinsidered experimental, investigational or unproven and not medically necessary. I wonder what nay-saying doctor is on their board.

 

Sorry to vent - spent an hour shoveling snow to work off some anger, but I think it made me more mad thinking about it. Where do I start on the appeal? I think it has to come from me as the request for IVIG came from a LLMD and we are seeing another doctor for PANDAS. Anyone have good experience from an appeal? Did you submit or the doctor or both?

 

 

OK...now that the new NIMH website is up and running, and they do mention using IVIG on this major, official website, you could try using that + the 1999 study that Swedo, et al published in Lancet. Typically, you can argue that it can be used: "off label", if there are 2 or more documents showing it's efficacy where it has been published in major publications. Until now, it was just the 1999 study, but now there's also the website.

[hawks]

Tracy -

 

Go through thenmama's content - she has great ideas for appeals. Maybe she will chime in. Angie

[thenmama]

Hi Tracy,

 

I'm swamped at the moment, so unfortunately don't have loads of time to reply today. But, to get you started, here are direct links to a couple of things I've previously posted re: IVIG insurance appeals:

 

One post with some info

 

My big fat post re: appeals

 

If you'd like to ask me specific questions feel free to reply or pm me.

 

HTH!

[Iowadawn]

Hi Tracy,

 

I'm swamped at the moment, so unfortunately don't have loads of time to reply today. But, to get you started, here are direct links to a couple of things I've previously posted re: IVIG insurance appeals:

 

One post with some info

 

My big fat post re: appeals

 

If you'd like to ask me specific questions feel free to reply or pm me.

 

HTH!

 

 

I am indebted, Thenmama, for the info you provided. I used portions of it along with our info to send along with the original Pre-auth for additional IVIG in an effort to head off a denial. I held some back in case we needed more to fight an appeal. And it WORKED!! We rec'd approval for a year again. DS (13 in a week!) had another IVIG 2 weeks ago. We are seeing some encouraging signs again.

[BoyIowa]

Thanks for the great info and links. I am working up the appeal letter now.