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If you fought insurance and won...

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If any of you were denied treatment, fought it, and won, please reply. I'd like to know on what grounds it was denied and what data, arguments, and/or tactics were used to win a reversal.


Without going into a lot of detail, our DS16 who I've posted about several times before, is doing quite well (80-90%) post IVIg back in December of last year. He still deals with some residual OCD and minor flare-ups occasionally (tics, which he suppresses), nothing serious or debilitating. It's very manageable for him, but our Ps doctor recommended a 2nd round of IVIg earlier in the summer on a out-patient basis. Aetna denied the 2nd IVIg, now saying the same old "it is experimental and investigational" for Ps. What's odd is that the dx code the hospital used before was not specific to Ps (there still isn't one, right?) and they claim they used the same code again. The letter from Aetna specifically refers to PANDAS, though. The hospital thinks the difference may be out-patient vs. in-patient and the severity/acuteness of his initial onset. Whatever.


On one hand we could just leave well-enough alone and be grateful for what he got. On the other, the next or equally important front for battling this disease is with the insurance companies and why should we settle for anything less than the best chances for getting back to 100% at the advice of his neurologist? We're lucky that ours is not a critical case at this time, but I am fed up with these insurance companies denying coverage for our children.


So, if you can provide some encouragement by sharing a success, please do so. If we can go into this thinking we have a fighting chance, I think we're ready to give it our best effort. Please feel free to PM me if you prefer.

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My daughter had her first ivig sept 2010 which we paid out of pocket and finally got approved just recently. We have bc/bs HMO access. My son was approved alot sooner but still took quite a while. It's a combination of insurance denying and office staff not really making an effort to do too much to get the approval (too much) for them. I had a patient advocate working on getting it approved but I think what really did it in the end was the nurse advocate that I requested from the insurance carrier. I wasnt aware that

they had such a service to us. This nurses husband almost died from undiagnosed Lyme disease so I think she was quote helpful and understanding. She really pushed for us to get approval. Pm me if u have any additional questions.


Edited by Tamistwins
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Nancy, you bring up a good point. I can say we discussed that before deciding to proceed, but the risk is real, as you say.


There are so many facets to managing this disease, i.e. doctors, courses of treatment, insurance, etc. So much of it is left up to your gut instinct. There are few, if any, concrete answers.


We'll continue to explore options, but if in the end we get shut down, maybe it was a blessing.

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When BC/BS Federal denied our first pex, I wrote a letter of appeal. Basically, my son was totally incapacitated at the time. Having dealt with years of occupational therapy and my sick elderly father, I remembered that somewhere in that black hole of insurance rules that they are required to see that the patient be able to achieve all the normal daily activities of living...Eating, Bathing, Toileting, Walking/Movement, Sleeping, Dressing. These can vary depending on what you look at, but basically these are it. Most often they are used with elderly patients, but I figured why not with my son...he couldn't do any of these. So I took each activity and explained to the insurance company how he couldn't do them or how difficult they were. Basically, I said this is what's wrong, and by using the daily activities of living I left the ball in their court.


We got approval, but it was rather strange how it happened. The same doctor who denied before denied it again. Then a few days later I got a call saying it was approved from one department as well as our doctor's office. About 20 minutes later the bad doctor's secretary called me saying it was denied (i had left an interesting voice mail for him earlier that day ;) I informed them I was just told it had been approved and she had no idea what I was talking about. Good thing I was taking names!! It was funny in 1 hour's time I got 3 calls from 3 different area codes discussing this issue!! Anyway, I think we lucked out with a very sweet nurse, Donna - I'll never forget the name, who took the letter to the right desk and got it improved.


Ugh...I probably haven't helped you! Basically, it was luck, but I do think the letter helped lay it out clearly for the insurance company. And that using the "normal daily activities of living" gave them more responsibility. I know you said your son was doing better, so maybe you could go back and state you don't want to go backwards or something, and that prevention is the normal standard of care for autoimmune diseases.


We didn't find out about the patient advocate until after either. Funny how that stuff isn't made clear.


Well good luck and my best!!

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My son's IVIG was denied last fall and I fought BCBS of NC and won. He was severe with chorea and had PEX at Georgetown which they covered without question. He relapsed 4 months later and they paid for IVIG. Our immunologist wanted him to have one 8 weeks later and they denied it but then paid without us ever getting involved. He needed it again 5 months later and they denied it and sent me a letter that they did not cover IVIG for PANDAS because it was experimental. I guess they finally connected the dots. I had his two neurologists write letters and his immunologist. Included were the studies so far and the NIH statement. They also included that we had proof it worked from previous treatments, the only other options were chronic steroids which are not an option in a child, and that he could suffer debilitating long term effects if he was not treated. Instead of going through the typical appeal process (which I knew it would be too confusing for anyone down the chain) I had the neurologist call the medical director. She claimed she reviewed all denied claims and that she had never received info on our child. That was not true since we had faxed the info three different times. We refaxed the info and she finally approved it. We did switch to Cigna for the next year because I felt BCBS had become a nightmare. To have to go through the appeal which overall took 2 months was difficult.

We have had his 4th IVIG on Cigna this year and will have one in the fall. Our neurologist wants to do it every 6 months for now. We may have to battle again but his medical chart speaks for itself that IVIG has worked. My son does get a rise in titers and a positive ANA with his flares which I am sure helps having positive labs. I think the fact that you have done it once and proves it has helped is good.

Let me know if you need more info. I am sure I have a copy of the letter somewhere.


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