Those are all good questions.

As a somewhat valid option, go get the Stem Cell Transplant in the next three years. Then, MAYBE, the existing private insurance covers it. Ba Da bing- you are all done, no need to worry about Medicare covering IVIG.

I do have ‘on good authority’ the following “facts”:

1. Your husband’s Medicare will not cover you…..

2. Most private Insurance reserve the right to modify the terms, conditions and prices charged at will and without notice at any time. Given that small print somewhere in everybody’s coverage, we are all at risk at any moment of losing coverage.

3. Most private Insurance require that a Medicare eligible client apply for, and accept, Medicare as soon as eligible. Then, and only then, they may offer secondary coverage. Government, or ‘Cadillac’ Plan workers need not offer a rebuttal….

However, in this case, you only mention the husband and Medicare. How about you? Will his private Insurance continue to cover you, if it even does now?

4. Medicare will not pay for IVIG at home.

5. Medicare probably will pay, but only 80% of approved charges, for IVIG infused at any approved location. But, only for a Medicare Client. Will you also be on Medicare?

6. If you have insurance now which then becomes secondary, it will probably pay some, or most, of the 20% difference depending on your co-pay, deductible, out of pocket and other limitations.

I couldn’t guess (well, yes, I can guess) what happens if you retire, lose the current health coverage, if any, and then apply, with a known pre-existing condition such as CIDP. Maybe someone who has been down this road will respond.

Of course, the option already mentioned is to purchase an appropriate Medicare Supplemental Plan. My neighbors pay about $900 month for a supplemental plan for husband and wife. Presumably, no pre-existing conditions, however.

Other treatments? Some doctors associated with the GBS-CIDP foundation allegedly prefer steroids because they are as effective and much cheaper.

Everyone on this forum is either dealing with this now, or is going to deal with it…..Hide the head in the sand.

I have been on Medicare for 17 years and it has covered (80%) my for 17 years. I have to go to the hospital infusion center but for me not a big deal. I would not want it at home as I had a anaphylactic reaction once and am glad I was at the hospital and not at home.

Hi Bill,

Thanks for a response.

But, my goodness- 20% of a big number times 17 years is still 17 times a lot.

I could not afford it…..

Do you have Private Secondary or Medicare Supplemental coverage or other?

Hi,

Yes, I am fortunate to have a supplement that covers the 20%. I figure that in the 17 years I have had IVIG 175 times and plasma exchange 180 times.

OMG, you are so lucky.

I’ll second that. And add a twist- lucky to purchase coverage with the pre-existing condition?

Or, lucky to purchase the supplement plan prior to diagnosis?

I couldn’t decide, yet, which is the greater luck!

where PE = plasma exchange.

I have Medicare and BCBS. First one paid till it went to Part D but I decided to keep my BC Pharmacy Benefits (can’t have both covering pharmacy). Then BC changed my coverage to regular non-pharmacy plan coverage. Now BC paying when they darn well feel like it.
Got a letter from them this week saying I’m being reviewed again. Last time they said I wasn’t properly diagnosed after they’d been paying for 4 years and they stopped my IVIG infusions ‘ ‘ ‘
Either I have CIDP or I don’t. Geez.

Been wondering about getting with Medicare Part D because it’s gotten so bad.
Insurance woes……

I am on straight medicare no supplements(due to my age) I receive IVIG two times a week every week and have been for awhile. My doctor went to the drug manufacturer to see if they would decrease the cost for me and he donates his time and the facility. I still pay something but it is somewhat affordable now. (cant tell you exactly because my mom handles my finances) U should check with your nuero and or infusion center to see if they have any programs to help. I was also told that Medicaid would kick in after a while and would depend on the bills i incurred. With the doctor doing what he did i dont need medicaid just my medicare. do you have a social worker? You may wont to look into that as well they can navigate the system for you and help you with questions.

The bottom line is IVIG is expensive & private insurance companies don’t like it. I am not the first person to be denied coverage for some insidious reason. Right now I am getting my needed infusions but wonder when I’ll have to fight my insurance company again.

I have been getting IVIG for 9 years with medicare. I think it must be done as an outpatient in a hospital for medicare to pay. Only once has medicare bounced it and I think the hospital had miscoded the claim. I guess medicare has paid for aproximately 200 IVIG for me.

Good luck. Hope this helps.

your part D provider will pay for it

i use sterling for part d and theyre pretty good

check the medicare database for the best part d provider for your prescription needs

be careful about dropping your wife’s insurance – part D has a beginning deductible of a few hundred dollars then there is a fee plan where after approximately $4k in bills you pay everything in a “catastrophic” area which is the next $2500 then your provider pays 100%. Those figures might be slightly off.

When I had United HealthCare I couldnt use Medicare and have UHC be a secondary provider. You can use Medicare and Medicaid that way though. I pay only a few dollars for scripts every first month of the year since the IVIG costs place the plan into the catastrophic zone immediately.

I didnt switch over to Medicare part B and D until I could get Medicaid because I would have been paying more. for example – I paid a 20% copay on IVIG with United HC but only up to $400 a year. If I used Medicare I’d rack up $2700 in IVIG costs.

Please analyze your costs carefully. You dont have to use Medicare as soon as you are eligible and since you have other coverage you wont be penalized.

I’ve been getting IVIG at a hospital infusion center for several years paid by Medicare, no questions asked. It was not a drug covered under Part D but a procedure under part C which included a drug. Now I am getting Rituxan instead.

I get mine done at home. My Neuro had to write a letter saying that it was necessary to get done at home due to my mobility etc. Your Neuro. should be able to help you.

Jerimy