IVIG for PANDAS insurance coverage?

[mdmom]

I know that CIGNA and United Healthcare both cover IVIG for PANDAS specifically (according to my friend who's son just got IVIG paid for by United).

 

We have Blue Cross/Blue Shield and IVIG for PANDAS is considered "investigative treatment."

 

No surprise that my son's IVIG coverage was denied last week when a well-known (to this forum) PANDAS doc tried to have it pre-authorized. This doc usually comes from an immune deficiency angle (which my son has, but not severe) when getting IVIG covered; however, he used PANDAS as the dx. The Dr's office is appealing the case on our behalf.

 

Has anyone else gotten BCBS (from any state) to pay for IVIG for PANDAS specifically?

 

Those of you who have insurance that covers IVIG for PANDAS specifically -- do you know what research/data your insurance company is using to support their policy?

 

A little background info: My DS13 was only dx 3 months ago with PANDAS. Four doctors have now diagnosed him with PANDAS (3 of them well-known on this forum) and all agree that he needs IVIG. They all agree that an uncleared strep infection at age 3 1/2 and then a ruptured appendix/peritonitis at age 4 triggered the autoimmune response in his body. He has shown more improvement on daily Biaxin and 2 steroid bursts within the last 3 months than he has in the last 3 years with therapies, psychiatric drugs, special schools, OT, etc. You can also do the math -- he has been sick with PANDAS for 9 years with no treatment. It is a sad story (like many others's on this forum....) Diagnosed with Asperger's, then severe, untreatable OCD, Anxiety Disorder, Sensory Integration, etc. He has been hit so hard with PANDAS that we were forced to place him in a school 50 miles from home for children with special needs. But we are on a hopeful path now that we know it is PANDAS.

 

I would appreciate any information you can give me.

 

Thank you.

[kimballot]

I know that CIGNA and United Healthcare both cover IVIG for PANDAS specifically (according to my friend who's son just got IVIG paid for by United).

 

We have Blue Cross/Blue Shield and IVIG for PANDAS is considered "investigative treatment."

 

No surprise that my son's IVIG coverage was denied last week when a well-known (to this forum) PANDAS doc tried to have it pre-authorized. This doc usually comes from an immune deficiency angle (which my son has, but not severe) when getting IVIG covered; however, he used PANDAS as the dx. The Dr's office is appealing the case on our behalf.

 

Has anyone else gotten BCBS (from any state) to pay for IVIG for PANDAS specifically?

 

Those of you who have insurance that covers IVIG for PANDAS specifically -- do you know what research/data your insurance company is using to support their policy?

 

A little background info: My DS13 was only dx 3 months ago with PANDAS. Four doctors have now diagnosed him with PANDAS (3 of them well-known on this forum) and all agree that he needs IVIG. They all agree that an uncleared strep infection at age 3 1/2 and then a ruptured appendix/peritonitis at age 4 triggered the autoimmune response in his body. He has shown more improvement on daily Biaxin and 2 steroid bursts within the last 3 months than he has in the last 3 years with therapies, psychiatric drugs, special schools, OT, etc. You can also do the math -- he has been sick with PANDAS for 9 years with no treatment. It is a sad story (like many others's on this forum....) Diagnosed with Asperger's, then severe, untreatable OCD, Anxiety Disorder, Sensory Integration, etc. He has been hit so hard with PANDAS that we were forced to place him in a school 50 miles from home for children with special needs. But we are on a hopeful path now that we know it is PANDAS.

 

I would appreciate any information you can give me.

 

Thank you.

 

mdmom - I do not have any advice for you re: IVIG coverage, but I just wanted to wish you well... As the parent of another 13 year old with long standing infection and PANDAS, I do hope you get the coverage you need to help your child.

[mdmom]

Thank you for your support and well wishes. I have found so much helpful information on this forum in the last few months. How is your child doing? Did he/she have IVIG?

[melanie]

Hi We get IV every 21 days with a CIVD dx through our immunologist.I have BCBSNJ direct.It wasnt easy but the immunologist and Dr T wrote a letter and it was covered.

 

Melanie

[Dedee]

Wishing you luck with your IVIG. Continue with your appeal. I have heard many cases that eventually get approved after several doctors send letters confirming the same diagnosis. I wondered how you found out that Cigna will pay for IVIG. We are seeking IVIG and have appointment next week with a PANDAS expert. Our insurance is Cigna and we are hoping we can get approval. Please keep us updated on your son's progress. IVIG has helped so many.

 

Dedee

[mdmom]

Melanie -- We saw Dr. T. once and loved him, but I could see he was struggling with how to build a case to insurance for IVIG. My son's CVID evidence isn't that strong. Do you see Dr. B too?

 

Dedee - My info on CIGNA is hearsay.....my friend with United said that she is sure they cover IVIG for PANDAS. Sorry for the weak information.

 

Thanks to all who have posted so far.

[Christianmom]

mdmom--

What would be the profit of going to Dr. Bouboulis? Is he having success getting IVIG for kids that basically have good immune systems but have PANDAS. That is where my son is. I would gladly go to him, but I hate to pay for another out-of-network consult and then still be denied the IVIG. My doctor now is Dr. T.

[mdmom]

My son's immune system isn't great (some slight IGG deficiencies), but not bad enough for immune deficiency dx. Dr. T. is actually out of our network and Dr. B is in our network.