1 - I am on GammaGaurd. No problems if I pre-treat with Benabryl and Tylenol. I think that, important with any brand to avoid a reaction.

2 - No matter what insurance company you choose, there is a formulary list of drugs they cover and your co-pay depends on the tier number they assign. Usually tier 1 through 5. Tier 5 being the most expensive co-pay.

My formulary considers Privigen a tier 5 drug. The formulary does not list immune globulin at all and I think all the other insurance companies would be the same.

3 - Based on my answer to #2, I think any Part D insurance company you choose will be exactly the same.

4 - I go to an infusion center.

In 2011 I just chose the same Part D provider that I had my Part B through. But for 2012 the co-pays were going up so I wanted to compare different companies.

I called 1-800-MEDICARE and the rep took me through the steps I listed in my prior post. My list consisted of 6 drugs. You can go through this process 10 times if you want without making a decision. I suggest you start today.

You can open 2 windows. One to go back and forth from this site and Medicare. Or call Medicare and have them take you through the steps if you do not have a printer.

It was confusing to me and I had to do it a few times before I really understand it.

Good luck;

Tony

It looks like my infusion will be 100% covered under Medicare Part B as long as I go to my doctors office or infusion center for it. I found a pretty good Prescription D plan but still have a few more phone calls to make about trying to obtain a medigap policy and which one is the best one for me.

While I am very relieved to find out that the infusion and IG medication will be 100% covered under Medicare Part B, I'm not happy that MG doesn't qualify in Medicares eyes to be a condition which would be approved for Home Infusion. The only thing I can think is that when on this therapy Medicare expects one to be more functional but I can truly say that there were times when I received the treatment every two weeks and it felt as if I could still do nothing but lay down. In the beginning 7 years ago I had to start IVIG infusions my disease was in full gear and it would take forever and a day just to walk a few feet to my bathroom. The thought of having to get up, wash up, comb hair, get dressed, possibly drive to infusion location by a specified time, stay there for 5 hours while getting infused and possibly driving back home when I was at my worst state of MG is unfathomable.

I have been blessed to have infusions at home for 7 years and can truly say that is the way to go if possible while receiving an IG Infusion for many of us. There is truly no place like home and PJ's and fuzzy slippers..lol
Currently I'm blessed to be at a point in my condition where I will be able to make it to an outside location for future infusions (although my driving is still limited at times) but one never knows with MG how long that will last or what will put you back in the pitfalls of MG.

I in no way want to appear to be ungrateful , as I would travel to the moon if I had to in order to have the IG infusion paid in full and I'm grateful to God that I won't have to pay 33% of the cost for EVERY infusion. I just wanted to state that in some cases Medicare should allow infusions to be administered in home of an MG patient if it's easier on the patient to do so.

In saying this, I may have had my last home infusion today and had to say goodbye to an awesomely wonderful nurse who has become more than just a nurse to me. She's my friend

I'll continue to keep everyone updated

Shari, Well that's good and bad news. However, I've always found that one or two phone calls can change even a Medicare policy! They have policies in place so that they don't have to spend money. It's not really about you but their bottom line. So if your doctor lets them know, along with you letting them know, that you can't get out of the house that often due to how much worse you get, then I'll bet you could find a way to still have that nice nurse come help you!

MG makes everything difficult, including even a change in location of treatment. So don't feel bad about being so sad that you might lose it! I would be thrilled to have someone come to my home to make my MG better. Losing that would feel awful. You're right, she's not just a nurse. Most nurses are amazing that way.

So make a few more phone calls and see what you can do. Congrats on getting this worked out!


Annie

Thank you SO much Annie I really hate to complain but sometimes the compaint is not a complaint but the truth so I appreciate you encouraging words.

My Neuro set up an appointment with me for this Tuesday just to discuss what I have found out regarding my new coverage, what they found out and go over my options (I've been blessed with one of the GREATEST Neurologists IMHO) He told me on my last visit that while he will not agree to lose money with a new plan I enroll in (in all honestly who would do that?) he would not profit either, he will cut all costs involved in my care if he had to in order to continue my IVIG treatments. (That was when I thought my best option would be to go with Medicare Advantage Policy who told me I would have to pay around $2500 for EACH IVIG treatment! I later was told by Scrubbs that a Medicare Advantage is NOT the best option for MGers on Medicare. (THANKS SCRUBBS )

I'm going to talk about all of this with my Neuro. Especially about the possibilities of continuing my infusions at home. You never know what can be done unless you ask the questions to find out!

If that doesn't work out then I'm going to find out if some type of transportation is provided to the infusion location if needed. Especially in the winter. Who knows with Medicare... they may expect me to crawl there...lol

We shall see

Shari,

Really glad that you don't have to pay the 33% differential...that would have been prohibitive. But sorry they won't automatically go with home infusions.

Medicare is really strange. My husband used to go to central lab to get his blood drawn for his annual cardio visit. But now he's on Medicare, he can't go to that place....he has to go to the Dcotor's office! (The nurse explained that the Medicare will only pay if it is part of in office patient care! Now how stupid is that when everyone knows you don't get the lab results or see the doctor the same day as the the blood draw!)

Thanks for the info suev,
I'm learning that about Medicare more and more as I review my options. Many things are making me scratch my head and go Hmmmmm, REALLY?
But as I get older and wiser I realize that changes happen for a reason. I've been blessed to have my infusions at home for so many years that I should be nothing but thankful. Especially because I had them at home during the times when my condition was by far the worse than it's ever been in the 18 years since my diagnosis. It's time to move on, go with the flow and Praise God that the infusions will still be fully covered if I have it in my Neuros office. Even if it means having to get them without my comfy pajama pants and cute little fuzzy bunny slippers

I have to admit that I'm going to miss looking down at those big brown bunny eyes and cute floppy ears during the times when the needle was pushed, wiggled and sometimes jabbed into my arms in order to get the "go go juice" flowing in my veins. Those cute eyes and floppy ears brought me so much comfort and many time made me smile instead of cry.

I just may bring them to my Neuro's office when I have my next infusion (which will be my first one there)

Who knows what effect they will have on others there in the doctors office. One of two things can occur:

1. The other patients there will either think I'm as crazy as a bed bug or
2. My fuzzy little bunnies may bring a smile on their faces too!

As usual, I'll keep you posted!

PROMISE you will take the bunnies with you to your infusion!!

I've talked to folks in my neuro's practice who have infusions there regularly. It's like a social club!! A steady group forms (much like here) and the newbies are welcomed with open arms.

I'll bet the fuzzy bunnies slippers will be welcomed with open arms...perhaps they should get names before their big intro..lolol!!

Well, the saga continues I need that medigap policy of course. There is only one medigap insurance policies that offer coverage for disabled under at 65 in OH and the first one I contacted informed me that my monthly premium would be $409.76

OMGoodness.... this isn't PRIMARY coverage, it's a freakin back up policy! Waiting on the second place to give me a call back and wondering what in the world they are going to tell me

Then of course I just thought about the "pre-existing conditions" that just well may eliminate me from getting the coverage anyway. I think being diagnosed with MG 17 years ago qualifies as pre-existing.

Well, it looks like I'll be applying for medicare help in paying expenses as well as contacting the MDA and possibly drug manufacturer for some assistance with the IVIG.


80/20 my beehind.... Why in the world aren't the disabled excluded from paying all the stuff that healthy people have to pay like co-pays, coinsurance, deductibles etc???? Not like I have a job and can afford to pay 20% for my IVIG.

I really need my IVIG

UGH, sorry. That really stinks!

As for the MDA helping you....don't waste your time. They provide zero drug assistance. They are more helpful for adapting homes, providing equipment.

My family of 3 pays nearly $1300 a month for health insurance. With that I still have $7500 out of pocket annually for IVIG alone. My child has health issues, so our monthly scripts are several hundred a month. It's tough....but at least we can get a little back at tax time each year.

Things will only get worse with the new healthcare changes coming our way. We the paying people will pay more and get less for it. It's very sad, and I worry greatly for my daughter's future.

Under the new "Patient Protection and Affordable Care Act," you can't be discriminated against for a pre-existing condition!!! It's H.R. 3590 and you can quote it to your insurance company!

Hang in there.

Annie