Insurance denied coverage of our 2 ivig treatments

[GraceUnderPressure]

Well, haven't been here much lately. Wish it was for happy reasons, but not the case. I've been too stressed to do much more than just cope lately. But I'm here to beg for any help y'all can give. The 2 ivig treatments we had done for our ds19 back in the spring were rejected by UHC. (I never bothered to get preauthorization because their website page on IVIG said that it was covered for PANDAS & preauth was not necessary - since we had a PANDAS diagnosis from the dr, we thought that was all we needed) UHC asked the dr's office for copies of ds's medical records, questioned the encephalopathy diagnosis the dr had used for it, & said that ivig has not been shown to be useful for encephalopathy.

 

So Dr. R's office manager resubmitted the claims with different diagnoses since there isn't a specific one for PANDAS - one with a 'misc. autoimmune' code and the other with something like 'hypogammaglobulin' (based on a low test result he had back in 2005! I'd have been surprised if they'd bought that one)

 

I've been holding my breath for the last 2 months in hopes they would take at least one of them, but word has finally come down from on high at UHC that they will not cover the 2 ivig treatments my ds19 had in April & May because, once again, the treatment has not been shown to be useful for his condition.

 

I want to write a letter of appeal (I need to - we can't afford $25K!!!), but I'm not sure if I can -- They told me I would need to get a letter of medical necessity from my dr's office plus any medical records which would support the diagnosis & treatment.

 

My ds does not have a clinical history of strep because his immune system has always been hypo-reactive. So he has had a sore throat a number of times over the years, but never anything that sent me running to the dr's office except one time around the age of 6 (I think) when it was positive for strep - but I don't have any copies of that result, & since it's been at least 13yrs, that family dr's office does not have those records anymore.

 

Still, his condition always worsened when he got sick or his immune system was taxed.

 

And I suspect he was exposed to mycoplasma by his brother at the time that his condition seriously nose-dived, but the test result was ambiguous (I'm sure the insurance would therefore consider it negative).

 

His Cunningham test results put him just under the mid-level for PANDAS so it's considered positive, BUT insurance doesn't recognize her test right?

 

His stomach couldn't handle augmentin or doxycycline, but his condition definitely improved on zithromax. So we went ahead & tried the ivig's. I figured even if it didn't help his tics, it was supposed to help the brain repair itself from the inflammation, & after 14 yrs with this condition, he surely would need any help he could get in that dept.

 

He got incrementally better for approx. 2 wks after the first one, but then our family was passing around a cold type bug and he began going back to where he had been before. We had hoped the 2nd would bring back the benefits we started to see with the 1st, but one of his brother's developed a stomach bug & we saw nothing

 

Then we tested positive for Lyme - positive even by CDC results. Our first LLMD appt fell thru & we had to line up a new LLMD (who we'll be seeing in Oct). Meanwhile, I discovered mold due to a leak under our kitchen sink & it appears to be a good possibility that mold allergy is contributing to ds's issues as well.

 

Now I would imagine that most of us on this forum have no problem looking at my ds19's case history & recognizing it for what it is, but how do I furnish proof to the insurance company to accept it as PANDAS? I thought the dr's were allowed to make a diagnosis based on clinical presentation rather than lab tests - so what do you do when your child is all clinical presentation with no concrete labs? It would have helped if I could point to benefits that ds received from the treatments, but what we did get, didn't last long. Do I even have a leg to stand on here or should I just despair & start researching bankruptcy?

[Dedee]

I understand your issues with Insurance. We fought hard for pre-approval and appealed three times before we had to throw in the towel and move forward on our own. Our daughter was so sick we couldn't wait any longer. Our Doctor worked with us on the cash price as did the pharmacy so it wasn't as bad as we thought although still a big hit. I have a good friend who worked for Insurance for several years. She told me from the beginning they would never pay if I tried to get it paid after the fact. If you are one of the lucky ones to have a really good and cooperative insurance company maybe, but pretty much retro payments are only in the case of emergencies. Your best bet is going to be to try to get three letters of neccessity from three different physicians saying this was a necessary treatment. They are supposed to re-evaluate if three doctors agree on the same treatment. It can be your pediatrician, neurologist, and who ever was doing the treatment. Something like that. The more sepcialized the better. They should all say pretty much the same thing in their letters on the reason IVIG is recommended in your sons case. The collaborative opinions of three doctors may get you what you need. Or so I'm told......Best of luck....

 

Dedee

[GraceUnderPressure]

Okay, I sent an email to UHC asking for clarification of their rejection of our IVIG coverage since the EOB wasn't very clear if their problem was with my son's diagnosis or if it was the diagnosis code. Apparently they do not like the diagnosis code for "encephalopathy" or "misc. autoimmune conditions".

 

Dear Grace,

 

 

Thank you for your request about a claim denied for services received on on 04/29/2011 and 05/23/2011 from XXXXXXXX XXX.

 

Based on the terms of your health benefit plan and the information received, unfortunately, the claim is denied because the diagnosis coded provided on these claims do not match the services that were performed.

 

We do use the guidelines sent down by the American Medical Association (AMA) and unfortunately these are not proven diagnosis codes for these services.

 

We have spoken with the provider several times asking if they had any scientific evidence to show that they are compatible.

 

Visit the Claims & Accounts section for more details about this claim.

 

I am sorry Grace I wish I could do more for you.

 

 

Thank you and have a nice day!

 

 

That last line really irked me. Anyway, does this UHC reply make sense? Their own IVIG policy book lists PANDAS as a proven condition that they cover. But PANDAS does not have a specific diagnosis code. The dr's office tried submitting it with the diagnosis code for "encephalopathy" first, then I asked them to try resubmitting it with the code for "misc. autoimmune conditions". The UHC rep tells me that they can't provide the dr's office with the diagnosis code so then how the (bleep) do we figure out which diagnosis code UHC will recognize PANDAS under? This is nuts!

 

I sent them a response asking them how we are supposed to figure out what diagnosis code they will accept PANDAS under (hopefully a little more restrained than here), but I don't hold out much hope of getting a different answer. Does anyone have any ideas? Does anyone know what the AMA guidelines are for PANDAS & IVIG?

[Christianmom]

Would it possibly help to have your doctor speak with another doctor like Dr. T and see how they get the IVIG's through insurance. I think you will need to get a CVID diagnosis if possible. Dr. T has some very specific immune tests that he runs that might be helpful in getting this diagnosis even if your son is coming up normal on the regular immune tests. Not sure if insurance will accept tests run after the fact either (maybe Dr. T would know). And the tests are expensive, so maybe if wouldn't be worth it unless you've already met your deductible. One of the test is a t-cell subset test run through Mayo Clinic. We had trouble getting insurance to pay for this originally (not sure why, but I think because it may not be FDA approved yet), but they did in the end.

[GraceUnderPressure]

Thanks! I was actually thinking of calling one of the major PANDAS dr's offices to ask, but I wasn't sure if they would be willing to help since they are all so busy & we're not part of their practice. Do you know if they have done anything like that before? (Or does anyone know if any of the other dr's offices would be receptive?)

[Christianmom]

Thanks! I was actually thinking of calling one of the major PANDAS dr's offices to ask, but I wasn't sure if they would be willing to help since they are all so busy & we're not part of their practice. Do you know if they have done anything like that before? (Or does anyone know if any of the other dr's offices would be receptive?)

 

I don't know, but I know Dr. T told me that if a doctor gets an e-mail from another doctor, they usually answer as soon as possible out of professional courtesy. So that would be a way to at least get to Dr. T quickly.

[GraceUnderPressure]

I am going to try to contact the person at Dr. T's &/or Dr. B's offices who handles the insurance billing next Wed (I figure the Tues after a holiday weekend is likely to be really bad timing) to see if they can help. Are they good with email or should I go ahead & phone? (Or should I try to get my dr to contact them? I suspect that will take longer though)

 

Meanwhile, I am trying to pull together info for an insurance appeal as it is looking like I'm probably not going to get out of it. Can anyone out there - esp if you've written an appeal before - share with me how to tell if research is "peer reviewed"? Is it enough to give just one citation as proof or should I do more? And do I need to print out & attach complete copies of the research I am citing or is it enough just to give the citations?

 

I will try to post it here when I finish so that others might be able to use it. Or maybe I should wait to see if it is successful first.

[Christianmom]

I would not bother to contact Dr. T's office about billing as he has problems with his office help (I think the girl is part time), and he's the one you really need to speak with anyway. He is the only one there that understands the procedure codes enough to steer you in the right direction. I would have your doctor send an e-mail directly to him. I am sure he will respond quickly to a doctor out of professional courtesy. Also, you could just have the doctor call directly. That may be your best bet. If you ask to talk to him instead of your doctor asking, you will be told he is busy and that he will return your call. And sometimes it is days before he calls, if at all. He is extremely busy.

 

The reason I mentioned using e-mail is because Dr. T is never far from his e-mail, even if he is out of town. He always checks his mail, even from home on the weekends.

[Dedee]

I have appealed three times and even went to the National Appeals Committe with over 70 pages of "Peer Review Articles". What they mean by that is something that is published by another physician or researcher in a medical journal. I sent every article that supported our diagnosis and mentioned IVIG as a treatment. They simply sent me back a letter that said there was no evidence that there was anything physically wrong with my child. Have I mentioned that I hate insurance?