IVIG, PEX and Insurances

[Joan Pandas Mom]

Does anyone have experience with Insurance Companies and getting "exploratory" treatment changed to a standard treatment? Lots of PANDAS kids are getting better with IVIG and PEX together with abx and ERP. How do we approach and change this standard treatment plan? Can we collectively as parents write, petition, Etc. Where does this process begin? I have video of my DS in such a sad, sad state 1 1/2 years ago and now about 90% better. How do we get this approved for all PANDAS kids?

[Kiera]

I think Dr B in Conneticut is taking the lead via legislation to get a study going into how Pandas treatment is covered by insurance companies. There was legislation passed a few months ago regarding this but it is a long, slow process. ERP is usually covered under the mental health plan and antibiotics, steroids etc are already covered under regular insurance plans so that leaves the IVIG and PEX (the big expense items) as the battleground area. And insurance won't pay until the research is there to PROVE it works! But I get your point, insurance is moving toward a "results based" coverage, meaning they will only pay a Dr X amt of money to treat X condition, so it's up to the Dr to find the most effective method of treatment, but this is way down the road I believe.

[LNN]

This bill passed in the Connecticut Senate but the House did not take it up for vote before the end of the last legislative session, effectively killing it for now. (CT SB-206 was the bill number if you want to google)

You can contact Lynn Johnson or Pandas Resource Network for additional info or to ask abut ways you can help (Dr B is or was associated with this non-profit).

 

The NIMH study is also aimed to help provide supporting research that will hopefully lead to coverage, but as Kiera says, it's a long, frustrating process.

[thenmama]

I can think of something the doctors could do that could really help things (and help them/save them time). They should draft a statement or letter stating that immunomodulatory treatments are considered standard of care for the treatment of children PANDAS (noting that which of the two treatments is prescribed depends on the specifics of the child's case). Then they need to get as many as possible of the docs treating PANDAS to sign it-- even if they don't typically collaborate with one another-- and with the various areas of specialty represented (and any representatives of major professional orgs, researchers, etc.-- the more weight behind it the better). The key is having a collective statement made by the doctors in the field who actually treat the condition (not just who have the same credentials as the ordering doc but don't treat it or don't believe in it-- so more credible than the insurance company's md or external reviewers), establishing immunomod as standard of care for PANDAS. Standard of care is just that: the standard for treating a certain condition. If it is considered the standard by the docs who treat the condition, it can't really be experimental-- since it's not one or two of them trying it out or acting on a hunch to see how it goes. A collective statement makes it clear that it's a regular tool in the established doctor's bag. Once the statement/letter is drafted each doc gets to keep a copy on file so they'd all have it to submit to insurance companies for their patients' denied claims.

 

Beyond that, there are a few other things they could do that might help...

Such as reaching out (and applying pressure if necessary) to the editorial boards and publishers of the standard reference compendia insurers use to decide whether a treatment should be covered (ironically they use the absence of PANDAS in the IVIG/PEX sections as reason to deny coverage, overlooking the fact that PANDAS doesn't actually appear anywhere in the compendia for any drug/treatment-- in other words they cover other treatments that have no support for the condition in their precious compendia and deny a treatment based on a source that doesn't even acknowledge a single treatment for the condition or even mention it by name...). Getting the standard of care treatments included in one of the compendia would be a tremendous help-- insurers would have a hard time denying it.

 

Also, they (PANDAS docs) should be publishing in professional journals and peer-reviewed lit based on their hands-on experience and the info they've gathered from their practices. The more the treatment is presented as the standard in the types of sources most medical policies require for coverage, the harder it gets to deny it (and hopefully the more accepted it becomes).

 

And of course they should be advocating professionally-- organizations, peer to peer, etc.

 

Must sleep-- more later...

Edited August 16, 2012 by thenmama