Getting IVIG

Hey there everyone,

It seems to me as though a big hurdle can be getting IVIG treatment covered (although I may be wrong). To help out your fellow members, comment on what your experience was like: what is your insurance/where are you located/how much did it cost/were there any special circumstances etc.?

Hope everyone is having a good week,


Where I live, it seems that the company you use for IVIG can make all the difference. My current drug company advocated for me with my insurance company. They fought for me to get home infusions and they help me by communicating with the doctor. This saves valuable time and helps with frustration. My recommendation is to shop around. The first company I tried to use was a nightmare! My current company also helps me pay towards my deductible. I also find that your doctor needs to help with the fight for IVIG, otherwise you won’t get proper coverage or care. It’s all in the way to write their medical documentation. Good luck!!

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Several years ago I had five rtearments as an out patient. Insurance did not cover it. (or most of it). If I had been an in patient it would have been covered.

There IRA a new treatment which is self administered at home you might want to check out.

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Thank you for the replies everyone!

For NYC;
I am on Medicare (over 65) and have United Healthcare through AARP,. I have their most comprehensive plan (Plan F) which costs about $275 per month. I am fully covered as long as I have my infusions in a hospital. Cannot have it at home or a clinic, which then coverage falls under my drug plan (cost would be $1,600 each).
My Medicare statement shows a cost of $17,000, although the hospital actually receives about $3,000 (not sure if that number). However, Medicare pays most and my soookenentak pays $750.00. I pay nothing, and feel very fortunate. I get treatments every other week, and have been getting IVIG for 5years.Hope this info helps someone.
Good luck and best wishes to all.

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I’m in Australia. For IVIG my specialist simply recommended a ‘loading dose’ (daily treatment for five days) and then put me on a four weekly cycle of infusions. That’s been my life since 2014. The Government apparently pays for the IVIG and my insurer pays the cost of the infusion at a private hospital (they advise that there is no limit on their payments - they will pay as long as the treatment is required)

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I live in the Falkland Islands. I was diagnosed 13 years ago with CIDP. I am fortunate that my Government pay for my infusions. I started by having an infusion every 4 weeks for 5 days, 10 hours a day. I have also tried Prednisone and Imuran with no effect. The Immunoglobulin Infusion works so well for me. I was given 6 weeks to live on diagnosis as my lungs were effected and breathing was difficult. To cut a long story short I am now 42 years old I hold down 2 jobs, I am a single mum of 4 boys, one of which was born only 3 years ago. I run as a hobby ( I was told I would probably never do this again) I am hoping to start my own business as a Foot Health Practitioner (despite a hand tremor) I have now got my infusions down to twice a year for 2 days only, I was due to have it now, although I feel I don’t need it so I may have got it down to once a year. That was my aim. It has been a long difficult emotional road but the infusions worked for me. My advice to all is stay strong in the mind and don’t give up. A positive mind and my children have got me where I am today and the IVIG, plus exercise when I am able and a good diet. I also take a lot of vitamins especially large doses of vitamin C.

I’m on Medicare. My neuro’s office made a mistake and signed me up for Plan D drug coverage, and I paid thousands and thousands of dollars out of pocket in co-pays before I discovered that Medicare Part B covers 80% of the cost of IVIG and my medigap insurance pays the other 20%. If you’re a Medicare patient, don’t let anybody tell you it doesn’t civer IVIG for CIDP. It does. But doctors’ offices and infusion centers alike are out there telling patients they can’t get Medicare coverage. Do your homework. Talk directly to Medicare. Get what you’re entitled to.

I have Blue Cross Blue Shield and have had no issues except scratching up enough money for my deductible and MAX out of pocket # which I regretfully hit every year. I take IVIG every 3 or 4 weeks depending on how I feel. January will be 3 years.

I’m on Medicare [original] as well. When I was first diagnosed with CIDP in September '17 the doctor’s office set me up with home infusion. But because I had to pay for 100% of my premium heath insurance I stopped my individual plan and signed up for Medicare in August. There was a mix up at Medicare and they showed me as still having an individual plan. This caused me to not start IVIG and to research everything and eventually got it all straightened out after a few weeks.
If you are on home infusion it is covered by Plan D [prescription] and will be very costly. After the researching, calling Medicare and the local infusion center I found out that for CIDP IVIG at an infusion center [or hospital] would be covered by Medicare[original]. Because I had just signed up for Medicare in August [there is a 6 month window for signing up with no penalty] I was able to purchase a supplemental Plan F which covers the 20% co-pay. I get infusion of 80G Gamunex over two days every 3 weeks. Medicare is billed approximately 32K and authorizes 6.5K. My supplemental pays the 20% co-pay. I made sure my local infusion center accepted Medicare assignment which is a must when selecting treatment options. One last thing. IVIG is working for me. Before treatment I plopped my feet when I walked,staggered when I walked slowly, and couldn’t stand still without swaying. I now don’t plop my feet, can stand still, and don’t sway. My feet still don’t have all the right sensations but they are improved. I’m hoping I can eventually increase the time between treatments or stop them altogether but I do notice that at the end of the 3 weeks before my next treatment some of my symptoms start to come back. I realize that this means that my immune system is still attacking…