Help please: insurance med. necessity / efficacy of IVIG for PANS / autoimmune encephalitis)

[wisdom_seeker]

Hi folks,

 

My son has PANS with very high Cam-KII, but no anti-strep antibodies. It's now been over 7 months now since his symptom onset, and he's no better; a brilliant HS Junior unable to attend school. We've exhausted non-IVIG medical management, so we've been recommended high-dose IVIG+prednisone.

 

How does a doctor (or I) persuade an insurance company that this is a rational, effective treatment, when all the (few) studies are on PANDAS, which he does not have?

I'd love any

• advice on how to file a successful application and/or appeal!
• And, clarification on what is my optimal role?

The MDs aren't jumping up to apply to the insurance, perhaps having been refused before. How can I help the MDs write a successful letter, given that it's not easy/pleasant for MDs either.

 

Given DS16's high Cam-KII activation levels, autoimmune encephalitis seems a completely rational Dx, though his brain MRI was essentially negative, and

• (a) I don't even know if the Cunningham Panel test is accepted as evidence for autoimmune encephalitis, much less if it would be sufficient for Anthem BCBS to accept the Dx,
• ( we don't know the specific anti-neuronal antibody that causes his Cam-KII activation,
  and
• © there's still the matter of showing that IVIG is a necessary and rational treatment, even as a 3rd line Tx.

 

I can easily search PubMed, read the journal articles, but so far I haven't found any trials or even case series of IVIG for PANS or (nonspecific) autoimmune encephalitis. Have I missed even prospective or retrospective case series of IVIG / plasmaphresis for (nonspecific) autoimmune encephalitis. (The only studies I've found were for the potentially fatal NMDAR-encephalitis, or things like Guillain-Barre syndrome.)

 

Still, many of you seem to have persuaded the insurance companies effectively.

 

How?

 

Thanks!

 

wisdom_seeker

 

 

 

 

 

[dcmom]

PMd you!

[lw47]

My daughter had IVIG TWICE- the first time insurance didn't pay, but the second time her IgG levels were low, so she had CVID- immunodeficiency- so insurance approved treatment. She was good for 3 months, then it all came back.

[pr40]

what I remember reading about encephalitis is that it is a clinical diagnosis. no test can rule it out. why not go with it? your ds's symptoms seem to fit. please, tell us if this or any other tactic worked.

[Gpookie]

BlueCrossBlueShield (CareFirst) doesn't cover HD IVIG for Pandas for us or autoimmune encephalitis. We paid out of pocket.... However, after we discovered that the kids have subclass deficiencies, they covered the monthly LD IVIG no problem at 100% for home infusions and a nurse once a month. It's even "in network"...

[tj21]

Hi,

We had to use hypogammaglobulanemia (sorry, sp. is incorrect), basically low IgG and illness/symptoms. We got 2 high dose IVIGs approved (UHC, then Anthem BC).

See previous thread: http://latitudes.org/forums/index.php?showtopic=23585&hl=

 

Good luck! High CamK II for us also, and tics are back in high flare right now, so figuring that out now...

Tracy

[wisdom_seeker]

Thanks to everyone.

I will certainly post an update once we have a determination.

 

@Gpookie and @Tj21 -- which specific subclass deficiencies did your kids have, and did they have low total IgG and low response to pneumococcal vaccine challenge as well as clinical symptoms?

 

Tj21, thanks for the link to your other thread. Very helpful! I skimmed it and will read in detail tonight.... but I think I'm asking for info you didn't give there. And since you have BCBS as well, and got high dose IVIG approved, this info is especially relevant.

 

@Gpookie, how well (if at all) do your kids' PANS symptoms respond to the high dose and the monthly low dose IVIG?

My DS only has IgG3 (and partial IgA) deficiencies, with borderline normal response so does not fit CVID despite tons of sinusitis illnesses. I need to review the pneumovax rsponses to see if they really could fit, unfortunately the MD didn't order tests for all the 23 subtypes, and the pre and post weren't even the same sets (different lab), so it's a bit confusing.

 

My update:

 

Until this week I've been waiting for the MD who's willing to take on our case to have the blocks of time she needs time to review all of our son's records and write the letter of medical necessity. ... I just heard from her that she will start this week. Frustrating, but I know she is thorough, kind, and overworked, and that this is a thankless task for any MD. So I'm really trying to focus on the positive.

[tj21]

Sorry, was without computer access this past week. Hope you've made progress w/insurance already.

Re. "which specific subclass deficiencies did your kids have, and did they have low total IgG and low response to pneumococcal vaccine challenge as well as clinical symptoms? "

-Below range total IgG, subclass 1; other subclasses were at very low end of the lab's (Labcorp) range.
-Got ins. approval before we had time to do the pneummovax challenge
-ds16 doesn't have hepB coverage despite the vaccination series, so we have to repeat this fall

PM me if you have more questions!

Tracy

[philamom]

Thanks to everyone.

I will certainly post an update once we have a determination.

 

@Gpookie and @Tj21 -- which specific subclass deficiencies did your kids have, and did they have low total IgG and low response to pneumococcal vaccine challenge as well as clinical symptoms?

 

Tj21, thanks for the link to your other thread. Very helpful! I skimmed it and will read in detail tonight.... but I think I'm asking for info you didn't give there. And since you have BCBS as well, and got high dose IVIG approved, this info is especially relevant.

 

@Gpookie, how well (if at all) do your kids' PANS symptoms respond to the high dose and the monthly low dose IVIG?

 

My DS only has IgG3 (and partial IgA) deficiencies, with borderline normal response so does not fit CVID despite tons of sinusitis illnesses. I need to review the pneumovax rsponses to see if they really could fit, unfortunately the MD didn't order tests for all the 23 subtypes, and the pre and post weren't even the same sets (different lab), so it's a bit confusing.

 

My update:

 

Until this week I've been waiting for the MD who's willing to take on our case to have the blocks of time she needs time to review all of our son's records and write the letter of medical necessity. ... I just heard from her that she will start this week. Frustrating, but I know she is thorough, kind, and overworked, and that this is a thankless task for any MD. So I'm really trying to focus on the positive.

Edited April 19, 2016 by philamom

[tj21]

Our other dx was for recurrent aphthous mouth ulcers and sinusitis as @philamom notes too. We also had a 1.5 yr. lab report history of a continuous decline in total IgG numbers.

Tracy

[Gpookie]

I second what philamom says. My kids also failed all pneumo serotypes. IgG numbers were normal after 4 ld ivigs. Insurance just approved HD ivig today for the final one. Kids are doing great.

Edited April 18, 2016 by Gpookie

[wisdom_seeker]

To Philamom,

 

I thought that if we apply under IgG subclass deficiency & chronic sinusitis as well as the autoimmune encephalitis Dx, they're more likely to just approve low-dose IVIG, which isn't immunomodulatory, unlike the HD one.

 

I've read some posts saying that their kids got worse after LD IVIG, but improved when they finally got HD. What I've read is that HD IVIG induces the production of T-regs and helps turn off the production of the aberrant antibodies. But maybe the LD is enough for some?

 

@Gpookie,

 

Did your kids' PANS improve after the LD IVIG? And if they did, on what grounds did insurance just approve HD IVIG?

 

wisdom_seeker

[wisdom_seeker]

Update: BCBS initial determination:

 

Denied -- with the following rationales:

 

1. "We cannot approve your request for a blood product to help boost your body's 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 IVIG is not medically necessary for you."
   
2. The same paragraph except substituting for

"...PANS syndrome."
"...a problem with your brain (encephalitis and encephalomyelitis)."

 

 

Our goal is not "to boost the body's defenses", so their premise is wrong. Still our policy's BCBS clinical health plan guideline for IG has a set of approved indications, ending with the following blanket exclusion.

 

Immune globulin (Ig) therapy is considered not medically necessary for all other indications not listed above as medically necessary, including but not limited to:

• Alzheimer's disease
• Immune optic neuropathy
• Multiple sclerosis

• Amazingly, this BCBS policy doesn't approve IVIG for any autoimmune encephalitis, not even the often-deadly NDMAR autoimmune encephalitis, discovered in 2007, for which IVIG is an absolutely standard, life-saving treatment. So I'm guessing that this is a pretty old clinical guideline, developed before antineuronal antibody tests were used in encephalitis dx.
  
  But I can't even point to a specific elevated auto-antibody level, just the downstream CAM-KII over-activation. And because that test is so new and expensive, there isn't any published data demonstrating that IVIG will reduce CAM-KII in proportion to decrease in symptoms.

Does anyone know what journal article says / proves that abnormal CAM-KII activation is the result of antineuronal antibodies attaching to nerve cells? (as opposed to say a fever, NSAID use, or some other irrelevant cause)? Maybe I should ask that as a separate post?

[Gpookie]

When they approved ld ivig, they (pre)-approved 6 rounds due to hypogammaglobulemia (that was our diagnosis and most likely the cause of PANS in our case). Each time the product is ordered from the provider, the provider asks if there has been a change in dose. Yesterday, the doc said yes and the next (last) will be HD. Their ivig was to treat the immune deficiency not pans or autoimmune encephalitis. Their numbers were normal again after the 4th infusion.

 

Two years ago we simply paid out of pocket for HD due to BCBS policy. Which is a policy with which I agree.

 

Our goal (as is the goal of LD), was to boost the body's defenses so that we could treat the infection which led to PANS. Only after several ld, have we been able to finally eradicate strep. Only one son needs the higher Dose with the last round, but his autoimmune reaction was bigger.

 

Please pm me because I don't really like having so much personal info on the internet...

Edited April 19, 2016 by Gpookie

[tj21]

So sorry to hear, @wisdom_seeker. Will you appeal (if time)?

We were fortunate that our ID MD got us approved both times; she said she routinely does high dose IVIG for other conditions (though not autoimmune encephalitis); she also did not put PANS anywhere as a dx since we already know it's excluded from any medical treatment right now (no ICD/dx code exists).

Good luck!