Let's get PANDAS it's own ICD-9 code

[forjpj]

Did some more poking on this subject and think this is something we can do!! It seems so basic that it is overlooked...if we get pandas it's own code then it seems insurance companies might have to start recognizing it more. Check out these links

 

 

http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

 

http://www.healthcareitnews.com/blog/cms-cdc-call-icd-9-and-icd-10-code-freeze

 

It looks like it is too late to submit for the September meeting, but it looks like the next one would be in March...so probably need to have the proposal submitted by Jan. And according to the second link, we better do it soon, or it will be harder to do it after October 2011.

I need to look around some more and be more thorough, but I got so excited, and I wanted your thoughts. If we collect the stories for a book, they could go towards the proposal. So is this a pipe dream or what?

[JAG10]

That's interesting.

 

Are we sure it hasn't been looked into before?

 

What organizations would we need "blessing" from? For example, in the March minutes 2010, a proposal for a Fluency Disorder code was made and this was endorsed by American Speech-Language/Hearing Association and the American Psychology Association. Whose endorsement would we need??? American Pediatric Assoc? neurology? immunology? psychiatry? Each individual association? Would we need an OCD or Tourette Foundation endorsement?

[P_Mom]

forjpj....NO itis NOT a pipe dream.....that is what I initially thought about the Pepsi Project....I thought winning the grant was a "pipe dream" and I almost did not do it.

 

GO FOR IT!!!!!!! I will be behind you....as I am sure all of us will!!!!

[JAG10]

Can someone explain how the codes basically work?

 

Is it PANDAS that would get the code or "encephalopathy of viral or bacterial origin", "post-infectious encephalopathy", something like that? Does Lyme Disease have a code or is it several codes listed like "tick bite xyz"

[peglem]

I'm worried about how this might work in actual practice. Right now, doctors are able to code PANDAS/PITANDS under things that have fitting criteria and often are getting treatment approved that way. If it has its own code...would it have to have clearly defined treatment protocol to get the treatment covered, or would they then say all treatment for that is experimental? I mean the insurance companies could then point to NIMH treatment recommendations specifically for PANDAS and decide that's all that will be covered. Or, am I way off base on this, not knowing how it really works?

[forjpj]

Keep these questions and issues coming!! I think I will ask for some doctor opinions and see what they think, who might support it, etc. And you are right...we don't want to upset the apple cart and make things worse. Not officially saying it is pandas might be the only way some of us are getting help. Maybe until the docs agree there is nothing we can do. As far as how the codes work, I thought the insurance companies simply used them to identify each condition numerically - for easier record keeping, processing, etc. Maybe I should go look up the history of icd-9 codes now!

[tpotter]

I think it's a great idea, but I'm not sure if it is what we really need. What we have found is that the insurance companies look to the NIH for guidance. When the NIH endorses SSRI's, rather than abx, IVIG and PEX, the insurance companies call it: "experimental", even though it already falls under several accepted diagnostic codes, such as encephalopathy, NOS and autoimmune disorders NOS.

 

So, although I think it's a good idea, I really think we have to find some way to convince the NIH to at least note that IVIG and PEX has been studied, and used in extreme cases where other treatments failed (and to even mention their own study.) This would get them off the hook of endorsing something that they aren't 100% convinced about.