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IVIG most recent insurance successes?


amyjoy
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HI - I came across this site called "Advocacy for Patients With Chronic Illnesses". It looks very interesting and they have some good ideas for advocacy in general...

 

http://www.advocacyforpatients.org/index.html

 

 

 

They also have a specific section on IVIG and appealing IVIG denials. They do not have examples for PANDAS, but perhaps someone from this forum would be interested in working with them to do that Amyjoy - could this fit in with what you are doing?

 

http://www.advocacyforpatients.org/hi_ivig.html

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HI - I came across this site called "Advocacy for Patients With Chronic Illnesses". It looks very interesting and they have some good ideas for advocacy in general...

 

http://www.advocacyforpatients.org/index.html

 

 

 

They also have a specific section on IVIG and appealing IVIG denials. They do not have examples for PANDAS, but perhaps someone from this forum would be interested in working with them to do that Amyjoy - could this fit in with what you are doing?

 

http://www.advocacyforpatients.org/hi_ivig.html

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May ds10 had his first IVIG in May of last year which we paid out of pocket for because we were denied by United Healthcare/Oxford saying that IVIG for PANDAS was experimental and investigational. We appealed and got denied three more times so we took it to the CT State Insurance Commission. The State overturned their denial. They made them reimburse us for the one we had and to pay for one more before the end of Oct. So he had is 2nd IVIG early Oct. The Dr. wanted him to have a third IVIG and they initially denied that one, but within an hour after the denial they called us back and approved it and any more IVIGs he needs until June. The added stress to fight an insurance company while trying to care for a child with PANDAS is overwhelming and wrong. Thank you for putting this together.

Edited by jayjay
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I believe my son's infusion will be covered under immune deficiency diagnosis rather than PANDAS dx. We have Anthem BC PPO. I did not have to get prior authorization. My son has specific deficiency in pneumococcal antibody. We will be doing every 21 days. I will let you know when I hear what/how much covered.

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May ds10 had his first IVIG in May of last year which we paid out of pocket for because we were denied by United Healthcare/Oxford saying that IVIG for PANDAS was experimental and investigational. We appealed and got denied three more times so we took it to the CT State Insurance Commission. The State overturned their denial. They made them reimburse us for the one we had and to pay for one more before the end of Oct. So he had is 2nd IVIG early Oct. The Dr. wanted him to have a third IVIG and they initially denied that one, but within an hour after the denial they called us back and approved it and any more IVIGs he needs until June. The added stress to fight an insurance company while trying to care for a child with PANDAS is overwhelming and wrong. Thank you for putting this together.

 

How daring for you to go all the way to the commissioner!!!!!

Do you have any idea, when United ultimately paid, what the ICD-9 code was?

They have been known to pay for immunodeficiency, when that is documented. We also had coded one child with encephalitis with success.

 

We have one parent currently fighting with Anthem BC and has escalated that quite far. her DS does have an IgG subclass 2 deficiency, and multiple years of fighting infections and co-infections in addition to having PANDAS. Their insurance has paid through the nose for endless useless therapies for years of recurrent infections and still denied the ivig, but we'll see how far this one goes.

 

If some insurances pay for the same exact ICD9 codes, and if the Canadian Healthcare system can include IVIG as an indicated therapy with PANDAS which they do recognize - who the heck is BC to deny coverage?? that's the thing i really want to push on them.

 

Maybe once we pull enough info and an information packet / sheet together, we can mobilize our entire networks and put many faces behind this, maybe we can like, all of and everyone we know send a message to oprah or ellen or a newspaper that will be willing to look at taking this on, it should have a public face, not just rest on the backs and lives of individual sick children.

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Both of my kids have had monthly IVIG covered by Aetna, but both have immune deficiencies, one CVID and one IgG subclass 3 - and lots of documented chronic & recurrent infections. I don't think that PANDAS has even been mentioned in their applications.

 

We are switching to United this month and I'm hoping they continue to be covered. United says in its policy on IVIG that it covers use for PANDAS, so I'm puzzled as to why it would ever be denied. Do they only approve it for severe cases?

 

I applaud what you're doing!

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