If your child's IVIG or PEX was covered spec. for PANDAS

[thenmama]

Hi all,

 

I'm doing some research and writing about insurance coverage for PANDAS treatments-- working on this issue has become a crusade for me. I am trying to conduct a (very informal) poll to see which insurers or TPAs have covered IVIG or PEX specifically for a PANDAS dx. I'm currently researching specific medical policies, and will compare that to actual coverage decisions where possible. Beyond that I hope to (now or down the road) compare how state-regulated insurers' coverage decisions differ from those of federally-regulated plans (my hypothesis: more approvals w/ state-regulated insurance).

 

I'm working on an insurance guide for PANDAS parents, as well as some pieces that'll be broader in scope/audience to bring more attention to this issue. Any help you can offer is appreciated.

 

I hope this is okay to post here? I'm not writing any of this for profit-- it's all strictly to help those in our community with their insurance issues and advocate on behalf of our families in the larger sphere.

 

I'd appreciate it if you can spare a moment and reply (in this thread or by pm if you'd prefer) to the following if your child has had either IVIG or PEX covered by your insurance:

 

1) IVIG or PEX?

2) Insurance Company name

3) (if known) State or federally regulated insurance? (purchased from insurance company or funded by employer?)

 

Thanks all!

[Kiera]

Had IVIG self-paid, insurance denied, currently appealing, ordered for encephalopathy & unspecified disorder of immune system

Company - Cigna,

Self funded by employer, plan run by Cigna

 

Plan states PEX IS covered for Pandas as first line treatment, no ivig coverage as says it's experimental!

 

Thanks so much for doing this!

[dcmom]

nmama-

 

I had two daughters have PEX for pandas.

 

It was initially denied, but approved on the third appeal thanks to doctor and HR intervention.

 

United healthcare administers the policy for my dh's company. Dh's company ultimately pays for all, UHC just administers.

 

BTW- the cost of PEX wast $26k, since the hospital was in network the insurance co paid about $5k!

[melanie]

We had PEX covered I think it was pandas dx. Not sure. We also get ivig every 21 days covered but under low igg dx specific immune deficiency dx. I have njbcbs direct access.

[NancyD]

IVIg (3), BCBS of MA, direct pay, only approved for low IgG

 

IVIg (>10) and Plasmapheresis (latter approved but never done), Harvard Pilgrim Health, direct pay, approved for PANDAS

[thenmama]

Thanks for the replies so far!

 

Kiera, I typed a reply to you but it got lost between hitting the button to submit and posting. Ugh. I am usually careful to copy all right before I hit to submit but apparently I forgot this time

It may have been info you already have, anyway, so I'll hold off on starting over-- but if you need a hand with your insurance stuff or need any other info feel free to ask me and I'll do whatever I can to help.

 

Unfortunately we're in the midst of another insurance fiasco ourselves right now. But, on the upside, my last appeal was prior to the latest (1/12) round of PPACA regulations to hit, so even though I would have preferred to take on that research on my own timeline, at least I'll be all caught up when I am posting here and now I've got a jump on it heading into the writing process...

 

TH

[Kiera]

PM ed you!

[PowPow]

Pming you