IVIG denied for 3rd time

[mdmom]

I know that some of you have read my whining over the last few months and I appreciate you following my situation.

 

I did 3 appeals with BCBS of Minnesota - my son has CVID (and PANDAS) and they are still denying IVIG.

 

Please help me if you have any ideas. I cannot stop crying wondering how I am going to help my son further. And at this point I am more concerned about treating CVID than PANDAS - he cannot go anywhere without getting infected with something new. He has been at home since May 2011 and his activities are very limited because of the health issues.

 

Just to review -- I have already solicited help from Dr. B, Dr. T. Their help made no impact on my appeals.

 

Ironically, I found on the Immune Deficiency Foundation website today that other people have had issues getting IVIG covered for immune deficiencies through BCBS of MN. I e-mailed them to ask for more help.

 

We will see a new immunologist today but I have to be prepared that he will either deny the existence of PANDAS or say that my son does not have CVID.

 

Thoughts?

[PowPow]

How can he deny the CVID if it is valid?

How was it diagnosed?

Can you just skip mentioning PANDAS at this visit today, if you will lose credibility? I learned to do that in certain places regarding both Lyme and PANDAS.

[mdmom]

PowPow - I am thinking about not mentioning PANDAS since I have to mention Lyme because of the aggressive treatment he is receiving.

 

The CVID is valid but our policy says my son must show proof of an impaired response to vaccinations - and he cannot be vaccinated! He has a history of PANDAS exacerbations following vaccinations. Both Dr. B and Dr. T wrote letters on our behalf exempting him from vaccines, but BCBS won't take this into consideration.

 

He has met the other two criteria for CVID outlined in the policy - history of recurrent infections and low IGG (2 standard deviations below normal).

[thenmama]

Research caselaw for some examples of cases in which the insurer (and/or the policy) failed to account for comorbid conditions and its decision was overturned by the courts (I remember seeing at least one ERISA case like this). You may find the language/info/legal jargon and regulations that you need for your own claims/appeal, and/or you can send the examples, or the wording of the court's decision, in with whatever you submit next. Also, are you ERISA or state regulated? If state, contact the BOI and ask if they can legally deny treatment if a beneficiary has a co-morbid condition and one of the medical procedures the insurer requires for coverage is contraindicated due to that condition. I'm guessing you'll find something.

 

Also, BCBS is sneaky-- double check your IVIG policy and see if it reads that the IgG must be two SDs below the norm (which means it's considered low and flagged by the lab) or if it reads that it must be 2 SDs "below the lower limits of normal" which is something I'm not even sure they can definitively determine without the lab's specific data set...(the math/science folks might know???). Also, some BCBS policies have a numerical cutoff for quant IgG for CVID dx, and the 2 SDs below lower limits is actually the wording for the subclass deficiency criteria. It really matters which set of criteria you're dx is coded for- b/c what works for one set may not for the other and even though the insurance company should just contact the ordering to give them the correct code to file under, as we all know that just ain't how they roll.

 

HTH

[norcalmom]

I think CVID may also be at a different dosage - so they may be able to deny the HD IVIG - since the treatment for CVID is lower dose.

[mdmom]

Life is full of surprises....

 

I was hesitant to talk about PANDAS today with the new immunologist. But, he is not sure my son has CVID and wanted to confirm it with a vaccine challenge - which meant I had to talk about PANDAS and why he can't have vaccinations.

 

The doc does not believe in chronic Lyme, but we agreed to disagree.

 

However, he was most interested in the PANDAS diagnosis and is going to find us help with IVIG somehow. He's going to "call around" to some colleagues to see if they can help.

 

I couldn't believe his humility...when he started explaining his scientific reasons for not believing in chronic Lyme, my son stormed out of the room. I then apologized for his behavior and started to cry and the doctor said to me, "it's ok - you both have clearly been through a lot." Whoa - if nothing else, it sure was nice to see some humility.

 

So, now I do what I'm really good at: WAIT.

 

He said it might take 6-8 weeks to find some additional help. But we have waited 11 years to get help for PANDAS, what's 2 more months?

 

I gave the doc copies of Swedo's white paper (he used to work at NIH) and the PANDAS info from the IOCDF website. I think he might be intrigued by my son's case from a scientific perspective.

 

Thanks for everyone's responses. Thank goodness you all understand.