Appealing HD IVIG/PANS denial -- do/don't mention IgG deficiency?

[wisdom_seeker]

Hi all,

 

We've just received the first insurance denial of our request for high dose (HD) IVIG for DS16's autoimmune encephalitis (PANS).

 

Would it add to or undercut our case to simultaneously apply for IVIG based on DS's IgG3 subclass deficiency? Either as a separate application or as part of the appeal? He has low IgA and IgG3 and a long history of chronic sinusitis.

 

I know it all depends on the wording of the denial. Here are ours, for two different diagnoses -- neither of which is a medically necessary indication in our health plan's "clinical guideline".

 

We cannot approve your request for a blood product to help boost your body defenses (IVIG). Your request tells us that you have a problem with the brain (encephalitis).

Medical studies have not shown that IVIG improves health for this problem. For this reason we believe that IVIG is not medically necessary for you [based] on the health plan guideline....

Dx: "the PANS syndrome"

We cannot approve your request for a blood product to help boost your body defenses (IVIG). Your request tells us that you have the PANS syndrome.

Medical studies have not shown that IVIG improves health for this problem. For this reason we believe that ....

 

I intend to argue that we do not want IVIG to "boost [the] body's defenses", but to modulate the immune system, which high-dose IVIG does, so as to stop his production of the pathogenic auto-antibodies and his elevated CamKII. And that IVIG is the only effective, standard treatment for various autoimmune encephalitides.

 

On the other hand, IgG subclass deficiency IS an approved indication for IVIG, so that makes it tempting to also include his low IgG3 & history in the appeal. But then I worry the could (erroneously) conclude that we do want the IVIG in order to boost the body's defenses.

 

So the way I see it is that the HD IVIG will reduce the production of auto-antibodes, starting the healing process, AND as a side benefit, the IVIG will help keep him healthy for a few months while his BBB and brain heal. But that seems too subtle a distinction.

 

So what do you say? Stick to the reason for HD IVIG, i.e. AE / PANS, or also include the low IgG3?

 

Thanks,

WS

 

PS. To complicate things, the clinical plan guideline for IG lists a set of approved conditions, and states that IG therapy "is considered NOT medically necessary for all other indications not listed above as medically necessary." Of course the guidelines don't mention any encephalitis, so they look like they've not been updated in years.... but still that is worriesome (as intended, I'm sure).

Edited April 21, 2016 by wisdom_seeker

[Gpookie]

I would say, if you want to go for approval, go for the subclass route if that's what your policy covers. If your goal is to educate them and change their policy, go the immune modulation route.

 

Not sure if either would work on appeal or new claim since it would be the same initial procedure...

 

I would get someone on the phone and ask them what WOULD be approved. This may be the best way to figure out what the would accept, especially if they were to accept a change in rationale on the appeal.

 

Hope this helps?

Edited April 21, 2016 by Gpookie

[wisdom_seeker]

I'm not sure how to ask "what would be approved?", and get any info beyond what is listed in their IG clinical guideline document. That doesn't even list anti-NDMAR encephalitis -- so it's so out of date.

 

But you're right; if it were a change in rationale, it wouldn't sound forthright. If I were to pursue the deficiency angle, I think I'd want to expand the argument and state what is the truth, i.e., that we're dealing with two problems.

 

However ....The low dose and high dose seem to have opposite effects -- the low dose is immune-stimulatory, and the high dose immune-regulatory. So I'd be wary of making things worse by giving DS the immune-stimulatory dose.

 

But... what if insurance were to approve say 500mg/kg IVIG product for the IgG deficiency, and my doctor prescribed 1.5 g/kg, would insurance pay for the administration and 1/3 of the Ig product, or nothing?

 

I think I've read of someone on this site whose kid had had LD 2x, which didn't help, then the third time the MD prescribed HD and it did help a lot. So i hope the answer is the former.

[Gpookie]

Our kids were not helped much by the HD two years ago. The are being helped by the 5 low dose infusions . It helped their IgG levels return to normal and they are much stronger. The last one (#6) is to knock out residual PANS and the doctor ordered this one to be HD at the last minute. BCBS approved 6 infusions starting low and still covered the high dose 100% when the doc raised it, but we let the home infusion company ask BCBS since they're in network. Hypogammaglobulemia gets approved.

Edited April 23, 2016 by Gpookie

[pr40]

you say: "But... what if insurance were to approve say 500mg/kg IVIG product for the IgG deficiency, and my doctor prescribed 1.5 g/kg, would insurance pay for the administration and 1/3 of the Ig product, or nothing? "

it strikes me that this is not a possibility at all since they would approve only what your dr ordered. if your dr did not order LD, they would not make their opinion on it at all. in other words, panel only decided on given orders. and yes, I believe, you are correct to argue with their wording blood product to help boost your body defenses -- and offer a different reason for IVIG. this is all very, very technical and the only way to win is on technical grounds. for the same reason, you don't need to mention additional benefits since the panel is not there to consider those.

Further, you can ask a representative what IVIG is approved for. they are there to HELP you and have to answer that question in most helpful way.

best of luck!

[wisdom_seeker]

 

 

and yes, I believe, you are correct to argue with their wording blood product to help boost your body defenses -- and offer a different reason for IVIG. this is all very, very technical and the only way to win is on technical grounds. for the same reason, you don't need to mention additional benefits since the panel is not there to consider those.

Thanks. What you say make sense.

 

I was very glad they wrote that "to help boost your body defenses" phrasing, since I can counter that. So no mention of IgG subclass deficiency in the appeal.

 

 

I guess the remaining question is whether to try to start IVIG faster by having his immunologist apply for IVIG w/ the IgG deficiency, while waiting for the appeal wheels to slowly grind through for the encephalitis indication. He meets all the criteria (recurring infections requiring abx, subclass deficiency, and inadequate response to polysaccharide vaccine).

 

Gpookie's experience makes me think I should consider it -- perhaps start a separate thread to poll folks about LD IVIG for PANS. I sure wish we had a registry already!

[Mom23boys]

I know this is an older topic, but the easiest way to get IVIG approved is to read your policy and to go with what your policy says. PANDAS/PANS is almost always excluded. Immunodeficiency is almost always included in some way, shape or form. Whether your son meets the guidelines and what dosage he will qualify for depends on what your policy says and what your doctor orders. It may well be if he qualifies under an immunodeficiency section of the policy that your doctor can get them to approve HD IVIG on the basis that he also has an underlying autoimmune condition that would contraindicate low dose IVIG.

 

Most IVIG policy provisions are updated yearly and there should be a date on the written IVIG coverage provisions to ensure you are dealing with the latest one.

[Gpookie]

100% agree. Worked for us.

[wisdom_seeker]

.... the easiest way to get IVIG approved is to read your policy and to go with what your policy says. PANDAS/PANS is almost always excluded. Immunodeficiency is almost always included in some way, shape or form. Whether your son meets the guidelines and what dosage he will qualify for depends on what your policy says and what your doctor orders.

 

It may well be if he qualifies under an immunodeficiency section of the policy that your doctor can get them to approve HD IVIG on the basis that he also has an underlying autoimmune condition that would contraindicate low dose IVIG.

 

Most IVIG policy provisions are updated yearly and there should be a date on the written IVIG coverage provisions to ensure you are dealing with the latest one.

 

Hi Mom23boys,

 

I do like the idea of having the MD ask for HD IVIG on the basis of the autoimmune condition that would contraindicate LD IVIG ... as long as it didn't make insurance deny IVIG altogether. Do you think there's much risk of that?

 

DS16 does fit the strict criteria for the subclass deficiency, as long as one looks for the 2/4x increase in titres, or evaluate the lack of persistence of protection when tested a bit beyond the 12-month threshold.

 

MD and Dose -

 

If insurance approves IVIG based on a request by one MD, would they allow IVIG when treated by another MD? Say a closer one, or an in-network one? Some MDs I know are willing to take an approval for LD and just bill extra and administer the HD, but I don't know if this immunologist would be willing to, if we only get approved for LD.

 

wisdom_seeker

 

PS. Unfortunately we are dealing with the correct policy; (supposedly updated in 2015). I say unfortunately for it mentions not a single type of autoimmune encephalitis. Not even the NMDAR!

[Gpookie]

Our immunologist prescribed LD for 6 months. Immediate insurance approval. Prior to the 6th infusion, a different doctor (allergist), called the home infusion company and increased the dosage for the last dosage to 2g/kg from .5g/kg. Immediate approval. We never had to do the pneumovax or prevnar or NMDAR tests. Just on the basis of mild subclass deficiency, BCBS approved IVIG. Hypogammaglobulinemia

 

We had the doctor and the home infusion company talk to the insurance company. We never did so ourselves. Both doctors are out of network, but the home infusion company is in network. However, 2 years ago, BCBS had denied coverage for the IVIG we did with Dr. L.

Edited June 5, 2016 by Gpookie

[jan251]

Our immunologist prescribed LD for 6 months. Immediate insurance approval. Prior to the 6th infusion, a different doctor (allergist), called the home infusion company and increased the dosage for the last dosage to 2g/kg from .5g/kg. Immediate approval. We never had to do the pneumovax or prevnar or NMDAR tests. Just on the basis of mild subclass deficiency, BCBS approved IVIG. Hypogammaglobulinemia

 

This is encouraging. If you don't mind saying, which BCBS is this? Our BCBS is IL (which is not the state we live in but whatever). We are awaiting a decision on coverage for LD for a subclass deficiency and we don't want to do the pneumovax challenge (had prevnar as a baby, recent testing shows no response).

[Gpookie]

Maryland. But what I think we are all are saying is figure out what the policy accepts and get a doctor in board to help. Don't try to go it alone. We focused on gettings our kids help rather than the energy to fight the system. Use the system as it is (with the loopholes that a good doc can help you use). Once you're child is healthy, you can work on changing policies, etc.

[Gpookie]

I was doing some administrative work today and actually found out why the HD IVIG at the end of the trial didn't need separate insurance approval.

 

Given that my kids have hypogammaglobulinemia, we knew that the insurance had approved 6 months worth of infusions. I found out today that due to that diagnosis and the immunologist's Letter of Medical Necessity to the insurance, they were actually approved for a full year, without having to renew the approval. Also, it's all covered 100% (no deductible), but that's due to the type of plan we have (preferred PPO) and the infusion company is in-network.

 

Thought I'd pass on this info, as I wasn't aware of it myself.

 

Our immunologist prescribed LD for 6 months. Immediate insurance approval. Prior to the 6th infusion, a different doctor (allergist), called the home infusion company and increased the dosage for the last dosage to 2g/kg from .5g/kg. Immediate approval. We never had to do the pneumovax or prevnar or NMDAR tests. Just on the basis of mild subclass deficiency, BCBS approved IVIG. Hypogammaglobulinemia

 

This is encouraging. If you don't mind saying, which BCBS is this? Our BCBS is IL (which is not the state we live in but whatever). We are awaiting a decision on coverage for LD for a subclass deficiency and we don't want to do the pneumovax challenge (had prevnar as a baby, recent testing shows no response).

 

[tj21]

Hi all,

It's been awhile. We were approved and did a HD IVIg Jan. 2018. Approved for on-going monthly LD through Nov. 2018, however those are triggering (immune-stimulating) DS18 so trying to appeal insurance (BSCA) for 65gmx2 every 12 weeks. They already approved 65gmx1 every 4 weeks, so this would be less costly and less frequent, ultimately.

But then we get to medical necessity. Any other advice re. dx, does have hypogammaglobulinemia dx. But as mentioned above, also has PANS, so needs IGg levels to stay high, but also needs immune-modulating of the high dose.

Thanks, Tracy