Insurance denied for the 3rd time

[tpotter]

I feel like I just can't take much more of this. He was supposed to have PEX 5 months ago...it didn't happen. Then he was supposed to have IVIG 2 weeks ago. Insurance keeps denying. Dr. K. joined me on the 2nd appeal, but they still denied. Please...whoever has research they know of that correlates IVIG and PEX with PANDAS tx (besides the Lancet), I desperately need it by Monday. I have asked Dr. K. and Dr. L, as well. I just can't believe this keeps happening. My DS is so sick.

[kimballot]

I feel like I just can't take much more of this. He was supposed to have PEX 5 months ago...it didn't happen. Then he was supposed to have IVIG 2 weeks ago. Insurance keeps denying. Dr. K. joined me on the 2nd appeal, but they still denied. Please...whoever has research they know of that correlates IVIG and PEX with PANDAS tx (besides the Lancet), I desperately need it by Monday. I have asked Dr. K. and Dr. L, as well. I just can't believe this keeps happening. My DS is so sick.

I am so very sorry!!

 

I also just remembered the Turkish study that (I think ) EA Mom posted a while back. I have to run now so I cannot look but if you don't have it when I log back on later I will find it.

[tpotter]

Got that one for PEX alone. Certainly a good one. Any more for IVIG? Thanks guys.

[mkur]

Call Dr B office and figure out how they do it. Somebody said he has only been turned down 2 times. Search the forum.

I am so sorry. Insurance can be a big pain in the rump.

[melanie]

ccall Dr B.They seem to get everyone covered.Just try

[matis_mom]

I feel like I just can't take much more of this. He was supposed to have PEX 5 months ago...it didn't happen. Then he was supposed to have IVIG 2 weeks ago. Insurance keeps denying. Dr. K. joined me on the 2nd appeal, but they still denied. Please...whoever has research they know of that correlates IVIG and PEX with PANDAS tx (besides the Lancet), I desperately need it by Monday. I have asked Dr. K. and Dr. L, as well. I just can't believe this keeps happening. My DS is so sick.

Does he have any other immune problems? I've heard some people get it covered using other issues as the "reason" for it if their insurance doesn't cover it for PANDAS.

[sptcmom]

PANDAS diagnosis (there isnt even an ICD 9 code for it I don't think) is not very recognized if at all. Very much like what Sensory Integration issues were and in many places still are with insurance companies. Many therapists still use motor apraxia codes to get that covered. A related diagnosis code is used by most doctors- Dr K I believe uses encephalitis etc. We used an immune deficiency code since Ds actually has one as per his bloodwork and that helped.

I agree about Dr B- I've heard he seems to manage esp since hes an immunologist per se.

[jayjay]

Dr. B. can get you covered if your child has an immune deficiency. My son happens to be one of only two patients he has not been able to get coverage for. We've been denied three times by insurance also. We just sumbmitted our appeal to the CT State Insurance Commission. Sadly, we are not very hopeful that the denial will be overturned. I absolutely hate the fact that we have spent countless hours on the phone and have written mountains of paperwork to people that just don't care. Bottom line is that IVIG is considered investigational and experimental with the code that Dr. B had to use because my son is not immune deficient. Our son had IVIG 7 weeks ago that we paid for out of pocket. We are just praying that one will be enough.

[tpotter]

Thanks everyone. Actually, Dr. K. does use Encephalopathy, NOS, but there was a mention in a previous note by another dr. of PANDAS, and they are trying to claim that it is experimental. I am planning to fight this based on the fact that he has way more symptoms than just OCD and tics, and that it really doesn't matter what the cause, but he does have inflammation in the brain, and that's really the bottom line (I'm going to list about 25 symptoms, which can't be treated by SSRI's.) Also, I'm going to point out that it's not uncommon to have co-diagnoses, and he has inflammation in the brain causing all of these symptoms. Then, I'm going to include articles that show that inflammation in the brain is successfully treated with IVIG. What do you guys think?

[tpotter]

Oh, I also called Dr. B's office, and she said to call back on Monday when someone else was there. I told her our problem, and she said this other woman in the office could give us an idea if it might be an option. She's also going to see if there's an earlier appointment. At this point, I want to cover all bases, and even if all the 3rd appeal is denied, it can always be resubmitted. This is just totally crazy.

[jayjay]

We have submitted every study and paper we could find to our insurance comapny. We used the analogy that the zoloft that my son had been on was like trying to fix a hangnail on a severed finger. The zoloft would cover up symtoms while causing more symtoms and never getting to the root of the problem. They did not even care that my son had been hospitalized for trying to harm himself. That hospitalizion alone would have paid for a few IVIG treatments. If a child killing himself is not alarming enough to them, I'm not sure what would be. If you find the magic words or papers that will change their minds, please let me know. I'm so sorry that you have to go through this.

[tpotter]

Wow. Another reason that the NIH absolutely, positively MUST change their website. Pray for me, anyway. This is really a very sick system. What insurance company do you use? I suspect it is hit or miss in all these cases.

[sptcmom]

Wow. Another reason that the NIH absolutely, positively MUST change their website. Pray for me, anyway. This is really a very sick system. What insurance company do you use? I suspect it is hit or miss in all these cases.

This question isn't directed to me but wanted to let u know- we have BCBS. I deal with insurance companies on a daily basis at work. Most of the time its also the plan one is on that matters. The more comprehensive a plan the better ones chances are. I've heard of Oak Brook surgical returning parents money upto 6 months after IVIG when they've been able to get reimbursement after appeals.

The best I've seen to date with regards to pediatric therapies (PT, OT, SLP), MRIs, procedures, IVIG etc is CIGNA. The reps will actually converse with the docs to come up with the best possible codes. Again the more cadillac of a plan you have, the bigger a client your company is and the better the care and attention you get from the agents but Cigna is by far heads and shoulders above the rest both for my patients and the IVIG stories Ive heard.

Encephalopathy is fine if specific, its the NOS code being used that kills the deal. Not otherwise specified is the diagnosis code, so it can't really have a very specified Rx option with IVIg and thats why its rejected. Plus so many many many many IVIGs being done by Dr K with same codes and all that billing coming out of just one facility- sooner or later the insurance companies were bound to notice it was bound to happen. I was told that those codes maynot work for Dr K so much anymore. Lots of luck to you.

Edited July 24, 2010 by sptcmom

[jayjay]

We have United Healthcare/Oxford. My husband's company just switched to them in January. They were not the insurance company that paid for my son's hospitalization, that is why I assume they do not care what happened a year ago. The one thing that we hope might have some weight with the appeal to the state is that United Healthcare (the parent company of Oxford) has a code that covers IVIG for PANDAS. Like I said, we will not hold our breath. Right now, I am just thankful that we did the IVIG and my son is doing better, not perfect, but out of the dark scary place that pushed us to make the decision not to wait.

[PANDAS_Denmark]

Hi,

So very sorry to hear, that you are having such a hard time getting treatment for your child !

Hoping this might help you :

 

"Evidence-Based Guidelines on the Use of Intravenous Immune Globulin for Hematologic and Neurologic Conditions" :

 

In Canada, intravenous immunoglobulin (IVIG) use has increased by 115% over the past 7 to 8 years.

Given this increased usage, Canadian Blood Services and the National Advisory Committee on Blood and Blood Products for Canada identified the need to develop and disseminate evidencebased guidelines to facilitate appropriate IVIG use.

As a result, guidelines for IVIG use in hematologic and neurologic conditions have been developed and are published in this supplement of Transfusion Medicine Reviews. This commentary provides a brief description of the process used to develop

these guidelines and includes a summary of the recommendations for IVIG use in the various conditions evaluated.

 

The guidelines states, that :

 

"Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS)

IVIG is recommended as an option for treatment of patients with PANDAS. Based on consensus by the expert panel, diagnosis of

PANDAS requires expert consultation."

 

(http://www.bloodmed.com/contentimage/guidelines/2854.pdf)

 

Best wishes -