My adult son was diagnosed with CIPD in July.  He has started IVIG treatment.  His insurance has a 30% co insurance payment, after deductibles are met.   We are expecting his portion to be about $18,000 dollars.  We could pay that one time, but not on an ongoing basis.  Anyone want to share their experience?  How do you manage to continue treatment at those cost?  Is there any help?

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He might want to look into getting a home infusion via a company such as Axelacare, Bioscrip etc. Generally those are cheaper than in the hospital setting. I've been on IVIG for about 2 years, and I'm 19, so trust me, I know about the financial hardship. Look into different infusion centers as well - not all of them have the same costs.

I agree totally with rgalla7822  above.  Different companies have diifferent agreements with insurance companies   When I had it done in the hospital - they charged insurance over $60 K just for the infusion and meds   I have had Walgreens do it since and my outlay was significantly less - plus they were willing to let me make monthly payments,  which helps a lot since I had to retire  Good luck - but definitely shop around

Some of the Immunoglobin companies will help with your copay. I get Gamunex and they have a copay program. Every year I get a prepaid Visa with $2500 on it to put towards my out-of-pocket insurance expense. It won't cover all your out-of-pocket but every little bit helps. I don't know about other immunoglobin brands but Gamunex does have a copay assist program. Call your company and find out.

 I get IVIG for auto-immune induced ataxia. I get it in Israel where it is free or cheap because there is universal health care. My suggestion: Call your local congressperson/or/and TV station. Make a stink. I know this is a pain but it might be helpful. On a practical note: Look into treatment in India-- much cheaper or Canada.  Medical Tourism, the field is called.

Thank you all so much for responding.   We are trying to find any information possible, and what better source than veterans.  Again thank you.

I am in Australia, I too don't pay. My dr has to ju$tify treatment though. If I didn't respond well enough no ivig I wouldn't be allowed to get it. What happens to you if you can't work & therefore can't pay? I had no ida how expensive it all was. I was just glad someone finally had an idea of what was going on; and they had treatment. Good luck!

http://www.gbs-cidp.org/You should be able to participate in a program through the drug manufacturer.  My wife takes GamunexC & they pick up the out of pocket for the drug.  I recommend having the infusions at home.  You may want to contact the CIDP org. as they have additional resources: http://www.gbs-cidp.org/

My IVIG treatments are run through my insurance as a "preventative" cost....which covers 100%. You may want to check and see if it can be run through your insurance this way instead. It is all in the way it is coded. I have been getting IVIG treatments for 2 years and haven't paid a dime because it is coded this way. It is worth checking into.

Reading the above responses, I get my infusions at home and use Bioscrip if this helps any.

I used Gammunex C and have now switched to Omigram. I am told they are the same thing just Omigram is cheaper.My infusions are done in the hospital ambulatory clinic.
Tammy said:

Reading the above responses, I get my infusions at home and use Bioscrip if this helps any.

I am an American living in Australia and was/am surprised to learn that ALL IVIG products here are stored/distributed by the Red Cross...(when I asked the nurse about it she said "it is a blood product") .just saying maybe check with the American Red Cross?

Cheers

Welcome to the group! Sorry you need to be here, but what a great support group it is. It has been very encouraging reading from everyone, knowing we are not alone & there are lots of folks out there for each other. I'm extremely fortunate as my insurance pays 100% of my treatment costs minus my $30 copay. I am on a biweekly IVIG treatment schedule so it extremely expensive & if not for my ins couldn't function, I get my infusion at my neuro's office. They have set aside a small unit where we can go & it is right next to the doctors office just in case we have an adverse reaction. I'm not sure how many doctors do it this way but it is covered the same as a regular visit to the doctor's office. The hospital would be much more costly for me. Maybe you could find a neuro that does it this way & maybe the ins company would cover it as mine does.
Best wishes -
Terri

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