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need insurance advice for ivig - Aetna


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We have Aetna, and in searching back through old posts I don't think I've seen anyone get coverage thru them for ivig unless it was a clear immuno deficiency. We are seeing Dr K. He gave us diagnosis codes:279.9, 348.30, and 348.39 NEC

 

looks like those are Unspecified disorder of immune mechanism, Encephalopathy- not elsewhere classified, and Other encephalopathy respectively.

 

Any advice before I go put my foot in my mouth? I am not hopeful, but perhaps with a little advice from those of you who have already been through this I might get lucky.

 

Thanks!!!!!

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After having been denied by BCBS 3 times, another parent on the forum recommended to us to not use the NOS codes, because many insurance companies consider that a red flag. I would go on the internet and find CPT codes, and see if you can get a dx code for Encephalitis or Immune Disease. Then ask Dr. K if he can use one of those codes. Also, be very, very careful about using the term PANDAS. I think that's what got us (it was mentioned in doctor's notes.) We still don't have approval, but are going back to see Dr. L. in 2 1/2 weeks, and will just try to get PEX again for now.

 

Good luck.

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I don't know how to avoid the p-word..its all over ds records. Good luck and thanks for the advice!

 

Ironically, while aetna's site says that ivig is considered experimental for pandas, it also has a webpage that explains disorders and their treatments, and there it says that ivig is used for treatment in some pandas cases.

 

I'm debating just hiring someone to fight it for us. I think I saw an old thread that mentioned companies that do this. Hard to spend even more money when the price tage is daunting to begin with.

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I wish I knew what to suggest. We are seeing Dr. B. also to get immune testing. I think with that, if we need IVIG in the future, it might help. Also, I surely hope that the White Paper that is supposed to be coming out will also make a big difference.

 

Do you have any immune testing done? Or can you go with an Encephalitis dx?

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We have Aetna, and they cover IVIG for both of my boys because of their immune deficiencies (after we jumped through a bunch of hoops), but wouldn't cover my immune deficiency. Even though I meet diagnostic criteria for a primary immune deficiency, I don't meet Aetna's criteria. Dr. B appealed and submitted me as "other immune disease" due to long history of immune complex issues, lupus reactions, lots of weird infections, etc. - if ever anyone had documented immune issues it's me - and they still denied it. I think Aetna is stingey with IVIG... but if you do get it covered, please let us know how! My boys still seem to be very dependent on it each month and since Aetna demands that they go off of it after a while and then re-test, I'm afraid that their numbers will squeak out of what Aetna will cover and then we'll be stuck with crazy bills.

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How long did it take before Aetna gave their approval for your boys? Dr. B.'s office is working on our precertification this week.

 

We have Aetna, and they cover IVIG for both of my boys because of their immune deficiencies (after we jumped through a bunch of hoops), but wouldn't cover my immune deficiency. Even though I meet diagnostic criteria for a primary immune deficiency, I don't meet Aetna's criteria. Dr. B appealed and submitted me as "other immune disease" due to long history of immune complex issues, lupus reactions, lots of weird infections, etc. - if ever anyone had documented immune issues it's me - and they still denied it. I think Aetna is stingey with IVIG... but if you do get it covered, please let us know how! My boys still seem to be very dependent on it each month and since Aetna demands that they go off of it after a while and then re-test, I'm afraid that their numbers will squeak out of what Aetna will cover and then we'll be stuck with crazy bills.

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Hi, My dd goes to Dr. B. and we are trying to get precertification for IVIG from Aetna. I spoke to the staff at Dr. B's office and asked them as far as insurance companys go how is Aetna at paying. They said Aetna is one of the ones that usually does pay. They told me the process of precertification goes something like this... The staff submits to Aetna for precertification. If it is denied they ask for a peer to peer review where some doctor at Aetna will speak directly with Dr. B. and he will argue the case with them. Would the business manager at Dr. K's office be able to call about pre-certification? They may have better luck than you as they probably know all the, "right words" to use. You could always ask about peer to peer review with Dr. K. if you are initially denied. Good luck!

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On 7/27/2010 at 2:08 PM, norcalmom said:

We have Aetna, and in searching back through old posts I don't think I've seen anyone get coverage thru them for ivig unless it was a clear immuno deficiency. We are seeing Dr K. He gave us diagnosis codes:279.9, 348.30, and 348.39 NEC

 

looks like those are Unspecified disorder of immune mechanism, Encephalopathy- not elsewhere classified, and Other encephalopathy respectively.

 

Any advice before I go put my foot in my mouth? I am not hopeful, but perhaps with a little advice from those of you who have already been through this I might get lucky.

 

Thanks!!!!!

 

Edited by philamom
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I don't think ds's immune deficiency is bad enough. He doens't have lots of infections or allergies. Other than pandas, he's relatively healthy. I was surprised that he had low IgG and low Subclass 1. HIs IgG is low on some ranges and normal on others - he is borderline there, but his IgG subclass 1 is 386 and the range is 423-1080.

 

This is ridiculous. He's looking into the sun for god's sake! If he goes blind, how much money will they be shelling out then? I'm off to figure out next step of appeal process. Also to see how to get Dr K's fees covered, since they have no in-network providers that can provide treatment for pandas in my area. also found out that the Medical Center that Dr K uses (which looks huge) isn't in Aetna's network either. Gulp. So now my hopes for coverage are cut in half becuase they only cover 50% out of network.

 

I spoke to the person that answsers the 800# yesterday and she said that I should confer with my doctor and show him their page that considers ivig experiemental for the codes he used.They don't dispute that pandas exists, just that ivig is experimental for pandas treatment. Not that we talked about pandas..haven't even mentioned that yet. But it is clearly list as a condition for which they consider ivig experiemtnal.

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Aetna really goes by the numbers. If he has at least one subclass deficiency and failed to respond to prevnar, then he should get IVIG. That's all my ds6 had - his total IgG was just above the bottom of the normal range. He had had recurrent/persistent sinus infections for the 6 months prior to IVIG, but not before that - no long history of infections. We didn't even mention PANDAS to Aetna. I, in contrast, have had constant infections for a long time and fail pneumovax, but all of my IgG subclass levels squeak into the normal range, so I was denied.

 

Dr. B's office told us they would have the approval within 4 days, but it actually took over a week.

 

The above having been said, Aetna is VERY stubborn about their network. I went around and around with them trying to find someone in network who would treat the kids locally, and when I didn't find anyone in network locally (and Aetna didn't either), they just said that I had to either travel or go out of network. I even got a rare disease case manager, had interviews with Aetna folks on the phone, and jumped through a bunch of hoops, and still they didn't budge. They told me that I could go through a process to "prove" that Aetna didn't have in-network local MDs who would treat the condition, but even if I did prove it, I would just be doing the service of informing Aetna of that fact; it wouldn't change my coverage. That's how we ended up traveling to Dr. B - he participates in Aetna, and it was cheaper to fly out there than to pay for 50% of the IVIG for two kids...and even that only after a very large out of network deductible.

 

That having been said, we did end up eventually finding 2 doctors in California who have prescribed IVIG for the kids. We got the initial high dose with Dr. B and have been following with medium-dose (0.75 g/kg) in CA. Dr. McGhee at UCLA has expressed willingness to do higher doses for PANDAS and he participates in Aetna, but my kids have done quite well on the medium dose so we haven't raised it yet.

 

One trick with Aetna that we figured out the hard way: at least with our plan, when we got IVIG at an infusion center, we had to pay 20% for both the drug and for the administration - which for the two boys, was a lot of money to lay out each month. HOWEVER, now that we get it administered DURING our doctor appointments at UCLA, it counts as a procedure done during a specialist visit, and we only pay the $40 specialist visit charge per child for the whole shebang -- and the deductible doesn't apply. We preferred the infusion center (more local) and I argued with Aetna that it had to be cheaper (for them) for us to do it at the infusion center than for us to have to see the specialist each time -- so why were they incentivizing us to go the route that was more expensive for them? But they stuck to their guns.

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I have Aetna. I had 1 subclass deficiency, and another subclass borderline, and failed the pneumovax challenge (didn't produce substantial antibodies in response to strep pneumonia vaccine). IVIG was initially disapproved, but after my doctor spoke with Aetna's doctor, it was approved. I also have lyme, not sure what role that played in approval, my guess was it was the subclass along with pneumovax failure.

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Thanks for all the awesome information. I just discovered they removed the page what says that ivig is treatment for pandas (but I have hard copy!). They probably get alerts whenever their name is typed (I myself ahve this service from google for my business, so I can follow chats about my product).

 

momtotwopandas - you are a wealth of information! And UCLA is alot closer than Chicago if I need ot do this again.

 

About the testing for failure - I am VERY hesitant to give my son any tests involving vaccines. Immunologist wanted him to come in get vaccine and then see how he would respond to see if there really was a problem. I heard vaccine and I baulked! I'm assuming this is the prevnar test you both are talking about.

 

on his strep. pneumoniae IGG AB 14 serotypes he is only above 2.0 for one of the fourteen serotypes. Nine of them were below 0.3. I may post this separtely becasue I have had so many tests done lately its hard to know what is normal and what is not. These didn't have a range, or anthing saying they were out of range, but if you read the page long description of the test it appears that anything below 2.0 means you body is not protecting you from the disease.

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Did you child go through the regular Prevnar vaccination schedule as a baby/toddler? If so, and if the numbers are still that low, he/she would be considered to have failed Prevnar. I think that if this was already done, the experts have ways around doing the vaccine again. Of the four doctors we saw, one insisted that there was no way around vaccinating again to prove the the immune system wasn't functioning, and the other 3 (all more familiar with PANDAS) felt that that part could be negotiated. Normally, after 1 year of IVIG treatments, Aetna requires that kids be revaccinated to see if their immune systems have "healed" so that treatment can be discontinued. I already told our immuno that I won't be willing to do that challenge on my kids next year, and he agreed that it was inadvisable for PANDAS and seemed to feel that if Aetna approved it the first time then he could negotiate his way out of revaccinating. That would mean, however, that we'd have to "wait and see" if they got more infections in order to qualify for additional treatments. So far, my kids have only gotten PANDAS symptoms in the context of clear and visible sinus infections, so this doesn't worry me too much for now.

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p.s. That's interesting that Aetna removed the page with the info about PANDAS. Before I got my immune tests, Aetna's written policy on-line would have covered my IVIG. However, after I got my tests done and they denied it, I went back to find that page again in order to show the representative that I should have been covered, and the page had been revised to criteria that now excluded me. The page had a revision date, coincidentally, of the date right after they received my claim for precertification but before I got my denial, and the old page had been completely removed. Unfortunately, I didn't have a hard copy and my bookmark just took me to the new page. Apparently they are allowed to change their criteria at any time... but this situation smelled bad to us.

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