I'll make this as short as I can..... After 17 years of employment my husband lost his job on Friday due to downsizing. I'm on SSDI due to MG and have Medicare Part A and B but never enrolled in Prescription Coverage because I was insured under my husbands policy. His insurance plan had EXCELLENT coverage which allowed me to receive IVIG in the comfort of my own home by a Home Nurse who is not only a wonderful nurse but also has become a wonderful friend. Hubby's insurance coverage was so good to us that I've never had to pay one cent out of pocket for any of my infusions and I've been getting them for over 5 years.

Well, sadly that has come to an end. I have until October 31st to enroll in a prescription drug plan with Medicare and to be honest, I'm very confused. I have no idea who will cover IVIG or what I will have to pay

If anyone on here has Medicare and receives IVIG could you please advise where I should begin? Do I contact my Neuro to ask them which medicare prescription drug plans cover IVIG? Do I call Medicare and ask them to assist me?

The rug has been pulled out from under us (especially me in regards to my health coverage) ...Please Help

I'm on Medicare and they cover 80% of the IVIG costs. My military program (Champus) covers the other 20%. It sounds like you need a supplement policy to cover that 20%. I go to a infusion center fot my IVIG treatments. I think AARP has supplement policies but I think they run around $200 a month.
Good Luck
Mike

OMG.. There's no way I can afford to pay 20% of the IVIG! I have to get it once every 5 weeks. How in the world can I afford to pay for all this extra crap on my little amount of SSDI per month?????? I don't know where to begin. I do know that I'm getting stressed out.

I appreciate your reply pingpong man but this is just turning into a big mess for me. I can't believe his stupid job did this to us.

I hope someone posts soon with some answers for you. I know in my case stress is really rough on my MG. I'm pretty sure none of us can afford the 20%.
Mike

Shari,
I have checked into a supplement policy but until you turn 65, they want anywhere from $400 to $450 a month. I'm like you and have medicare and a prescription policy tht doesnt pay anything on IVIG. I cannot afford a supplement policy. It doesn't seem fair that we have to wait until age 65 to get the cheaper price. My husband is 71 and pays $159 a month for one. With medicare you only pay 20% of what they pay. Get your doctor to check on that. Good Luck

Shari,

I am Medicare part B and that pays for 80% of my infusions and I'm sure Medicare was paying 80% of your infusion cost while the other 20% was being picked up by your husbands private insurance. My 20% was being covered while I had private insuance. I was carried under my private insuance for 2 years after I lost my job.

I then had to purchase a supplement policie just like pingpongman explained.
My AARP supplement policie cost $159 a month and thats going up a little on January 1srt. A cost that is much much less than the 20% you or I would have to pay without the supplement.

There are supplements out there that are less expensive and i will be looking into some of then of them before the end of the year.

I also had to purchase a presciption plan. Medicare part D. The premium is only $39 a month but the co-pays are going up like crazy next year. I am looking into other plans for presciptions and comparing yearly cost based on the presciptions I am taking now.

As much as it hurts you will probably need both B and D supplements but you may be able to take a little bit of the pain out of it if you start right now by comparing plans and deciding on the ones that will cost you the least YEARLY out of pocket expense.

Tony

Tony,
My husbands insurance was primary so they were responsible for the majority if not all of my IVIG expenses. I need to digg out and review my statements again. I was blessed for many years in regards to my insurance coverage and am thankful for that. I am, however, beginning to see just how bad it can be for those who only rely on Medicare due to disablility. I just find it hard to fathom how were supposed to pay for all the necessary coverage required in order to receive the treatment that we need and still have something left out of check to live off of. This is truly ridiculous, $100 here, $150 there, $250 there, $50 there.......

It's not my fault that the only treatment that works best for me is so darn expensive

I'm ranting so please excuse me. Guess I'll be very busy Monday trying to figure all this out. I've got 7 days to do it so I'll start with a call to my Neurologist first thing in the morning.

God has seen me through many, many things in regards to life with MG. He'll see me through this as well. I just have to keep the faith.

Thanks for all of your replies,
Shari

Unless SS approves me this round for disability, I will be without insurance at all come May. I'm using COBRA right now, but unless I am on SSDI, I can't get the 11 month extension that will cover me until I qualify for Medicare at 24 months.

Anyway---I've been checking on help with my IVIG (because I certainly can't afford to pay for it myself!) and I found that many of the companies that produce the medication itself have programs to help pay for it. I am on Gamunex and I know they paid $3,200 of the $4,000 out of pocket for another patient. My IVIG nurse also gave me a list of organizations that help pay for treatment for people who have rare or expensive diseases. They are as follows: Chronic Disease Fund 877-968-7233; Health Well 800-675-8416; Nat'l Organization for Rare Disorders 866-924-0100; Patient Advocate Foundation 866-512-3861; Patient Services, Inc 800-366-7741 amd Patient Access 800-316-7263. I haven't called any of these yet, but the IVIG nurse says that have helped other patients.

Good Luck!

Juanitad,
Thank you so much for this information! I'm sorry to hear about your insurance predicament and pray that you'll be approved for SSDI before your insurance runs out. Are you in your first round of appeal? I know all too well how frustrating the Social Security Disablility process can be so if you ever want to chat about it, please feel free to post or private message me.

Now that the shock of what has happened has sunk in, I'm realizing as well as remembering that there are others who situations are far worse than mine. I guess I've been spoiled to excellent insurance coverage for so many years that I began to panic at the thought of being responsible for paying so much money out of pocket. I just need to do a lot of research before the week is up and make sure I get the best coverage out there that won't bankrupt us.

I'm adding the phone numbers you gave me to my list of calls for tomorrow morning.

Good Luck with your SSDI claim

Shari

HI Shari - sorry to hear about your husband's job loss. This is certainly a tough economy.

What about COBRA? That allows you to extend existing coverage on a month by month basis for a period of time (I can never remember if its 12 months or longer). It's quite expensive, but may be something that would be worth considering if you and family need a short term bridge while investigating other options.

Hope things work out for you and your family in a very short time.