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Ugh! May have to switch from BC/BS to UHC - Dr. B

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K- When was the last time you re-authorized with BC/BS? I ask because the last time we went to re-authorize with BC/BS after being covered for IVIG for two full years, they pushed back. They said for CVID, she would only be approved for low dose, monthly. At that time, we had worked my dd13 down to HD every 16 weeks. I actually canceled her December IVIG appointment because she was stable before getting the letter, so I took it as a sign. But my point is that I believe we are not the only ones who only recently were given a hard time by BC/BS regarding high dose and frequency. I don't think they give a fig about standard of care, but I'm sure they are onto what is going on with CVID as "acceptable" dx but HD treatment regimen.

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Okay- we have the HMO version which is Keystone East. We would be authorized for a year at a time. Honestly, I always felt nervous because the bills never seemed stable. Then the facility fee was added, but no co-pay, then I started getting bills for co-pays. I can't say I'm going to miss that uncertainty.


She is doing well. We have recently added Enhansa into the mix trying some alternatives to keep health strong/less vulnerable. Since December, she's been taking IgG 2000 also. We are heading into the good months now. Fresh air and sunshine always help.


Can you go online and see how your January and March claims are being processed?


Best wishes with your decision. It shouldn't have to be this way.

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We have UHC and actually have 2 doctors ordering IVIG (one local, one PANS expert). UHC sent local doc a letter requesting information about reason for IVIG. DS has CVID and PANDAS, but local doc just put PANDAS in letter to insurance co. Insurance co. denied IVIG and we have to appeal now.


I called UHC and they said they would continue to cover until August, as that was the original approval period. Now I have to get docs to appeal based on CVID.


I don't know if your son is CVID. If he is, I would recommend requesting it under CVID.


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We have UHC, and have just been at dr. B's for IVIg the last two days (hence why I'm up...riding out the headache/vomitting- he's sleeping now, but there will be no sleep for mommy!). Here's what I can tell you:


Dr. B is in network for is - even though we live in FL. So face to face apps are just a copay. (phone consults not covered :( )


UHC does no longer covers IVIG specifically for PANDAS as of 11/2012


De. B's office was able to get us pre-auth for HD IVIG every 8 weeks through 11/2013 - 4 total (this was our first). They got it covered under "specific AB immunodeficiency - no mention of pandas whatsoever". We have a history of positive strep cultures but lots of normal labs, although Sharon did say that there was one lab that they used to help - even though it was borderline normal (don't remember which one now sorry)


Sharon also said that since my policy is a "commercial" policy there is more flexibility. Basically my company pays claims directly through UHC and basically cuts them a fee to use their networks/discounts so the coverages are more flexible. If they denied us, our HR dept could have stepped in and helped get it covered (which in my case they likely would have). Might want to have hubby ck on how his policy works.


We have been overall happy with UHC for the PANDAS aspect anyways (getting my AS meds from the specialty pharmacy is another matter!). They have covered all our therapists, meds, etc. have given us no trouble with long term abx or refills either. How much of that is UHC vs. the type of policy I have no clue. Bit thought I would share my experiences.

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