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Posted

 

Our insurance company recently denied Plasmapheresis for my son. While our Doctor is trying to work with the BCBS doctor, I am doubtful that it will happen. (It had been scheduled for this morning, but now that it is 11:00 my time, don't think so!)

 

I am now thinking about doing another round of IVIG, which we pursued in July of '09 and was beneficial. I wondered if anyone had any insights. I confess to being a little skittish about PEX because of the risks, and also my son is extremely sensitive to anesthesia. I have also heard that if you have a positive response to IVIG the first time, a second round is recommended in lieu of PEX.

 

Thanks for any insight any of you can provide. I have been so incredibly stressed about this whole thing, not to mention the stress of taking care of a child with PANDAS as you all understand.

Posted

Brooke- as you know, we were pre approved, and then denied :(

 

But, don't be nervous about pex- even though we had a few glitches, it really wasn't a big deal, and didn't seem risky at all. There was sedation, my daughter did well with that, though.

 

Eileen

Posted
Brooke- as you know, we were pre approved, and then denied :(

 

But, don't be nervous about pex- even though we had a few glitches, it really wasn't a big deal, and didn't seem risky at all. There was sedation, my daughter did well with that, though.

 

Eileen

 

I am so sorry! Where are you?? I am in McLean. Would love to talk. I am so weary!

What can you do about the refusal? It sounds like such a breach of contact, but I am not a health lawyer. Detrimental reliance on the hospital's part too, not to mention you too.

Thanks for the words about PEX. Did the hematologist give you any insight into post-PEX exposure? At this point, I am not sure we will have an option because Georgetown is using the machine for multiple organ donations as you likely know.

Posted

Did you get the approval in writing? At what point did they deny it? I'm not a lawyer, but there was something that happened with our insurance and they kind of explained to us how it worked and how they got away with denying one thing but being responsible for another. Totally not related to PANDAS.

Posted

Hi all- right now the hospital is working on an appeal. If that doesn't go anywhere I will get involved. We were pre approved, but they always reserve the right not to pay. I do not have it in writing, as it was done between the hospital and my ins company- who I think is saying it never should have been pre approved. Oy! To be honest, I have am not emotionally connected to it now- I can only deal with my daughters and their health issues right now. We have been hit a bit hard, personally by the economy (as many have), so I know we won't be paying it anytime soon.

 

My biggest concern about it is it ties our hands a bit for future treatments, possibly.

 

Eileen

Posted

Well, if it comes to the point that you need to be involved, our insurance (United Health Care) said that if they give you approval (we did not get in writing either, but they have notes on each phone call that they can pull up) and you have a procedure done, they are required to pay it. They cannot backtrack once the procedure is complete. Now, if they approve it, then deny it BEFORE the procedure is done, they are not required to fulfill what they said.

 

However, they would be able to deny future procedures (even if they covered it before).

 

I hear you about the economy. Trust me, I hear you....

 

Hi all- right now the hospital is working on an appeal. If that doesn't go anywhere I will get involved. We were pre approved, but they always reserve the right not to pay. I do not have it in writing, as it was done between the hospital and my ins company- who I think is saying it never should have been pre approved. Oy! To be honest, I have am not emotionally connected to it now- I can only deal with my daughters and their health issues right now. We have been hit a bit hard, personally by the economy (as many have), so I know we won't be paying it anytime soon.

 

My biggest concern about it is it ties our hands a bit for future treatments, possibly.

 

Eileen

Posted

Hmmm....and isn't United Health Care the one (Peglem said) that covers IVIG for PANDAS?

 

I suppose if you need more treatment, you could always do IVIG instead of PEX.

Posted

We had the same issue with bcbs we did a treatment ivig in sept and are awaiting to do another one bcbs no is turning us down

  • 2 weeks later...
Posted
Here's the UHC document for IVIG coverage:

https://www.unitedhealthcareonline.com/b2c/...ulin_(IVIG).htm

 

Here's the one for Apheresis (plasmapheresis is a type of this):

https://www.unitedhealthcareonline.com/ccmc.../Apheresis_.pdf

 

Looks like PEX is much more difficult to get covered.

 

 

I think I can switch insurance companies.Is it true that United Health Care covers IVIG according to the link it says it does Does anyone know for sure

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