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Insurance reimbursement for IVIG?


amyjoy

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Hello!

I am the mom of a 14 year old boy with PANDAS, which he has had for about 5 years. He was just diagnosed a few months ago by a progressive MD in Northern CA, in addition to a brief email consult with both Dr. K and Dr. Cunningham. IVIG is his definite treatment of choice.

 

I am also fortunate to work in a large integrative medical practice where we now have a dedicated IV treatment center to treat our PANDAS children on the west coast to avoid if possible the extra costs and strain of traveling eastward for IVIG treatments to those of us who simply do not have those resources available.

 

Our first wonderful child, who came in last week for treatment, had the blessing of (doing very well, and) having a family with resources able to pay out of pocket for IVIG which as you all know is ridiculously expensive. So even though our office is working very closely with the suppliers of IVIG to pass on reduced rates to our patients and families, many of us still cannot pay out of pocket, including me. I have already spent my entire life savings on the medical care of my child these past 5+ years. Many of you are in the same position. Thus, we are waiting for insurance and pushing and praying for coverage so that he can be treated.

 

What would really help, both for my son as well as anyone who brings their child to our office - or to any office - for IVIG, would be any information you would be willing to share regarding billing codes and insurance, whether successful or unsuccessful. Even if you would be willing to fax me the info (removing personal identifiers) so we can do the best we can to dialogue and code with insurance.

 

Like my son, many are waiting in the wings for IVIG, having run through all resources before finally landing PANDAS as a diagnosis. Pooling our information would really help, and i would be willing to sort through and make it all available to everyone.

 

Thank you and i wish you all every success in treating your child.

amy

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sorry i cant help, i am about to start an appeal (denied because of out of network), and hopefully be re-imbursed something.

i wish i knew of some ideas too.

 

Hello, i'm sorry it was turned down and how stressful that is....and, i would love to know a couple of things, if you don't mind, like, what diagnostic codes you used? its so interesting that it was turned down due to out of network, not diagnosis or other actual billing codes. or maybe, knowing insurance, if you had gone innetwork they would have found some other reason to turn down, right?? but anyway, anything else you can share about your claim would be very helpful.

 

And meanwhile, i hope your child is doing really well and may not require a second treatment:)

thank you for your reply.

amy

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BCBS of Illinois states they do not cover ivig for Pandas diagnosis. We have been going for Variable Immune Deficiency but have been turned down and appealed now 3 times. In addition to the labwork to support the diagnosis, they have required evidence of serious, difficult to treat pattern of infections. We have gotten the IVIG and expect we will have to pay out of pocket for it if we fail in our attempts.

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Thank heaven you had those resources to treat your child!! And I hope, successfully.

We are anxiously awaiting info from our insurance company, we coded for sydenham's chorea, after hearing that any diagnosis of PANDAS or strep related encephalitis may be a red flag. and since my son primarily has tics, we figured its probably an accurate diagnosis as well. I wish you luck and would be interested in any update - hopefully a good news update!

amy

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