Husband Lost Job, Now I Need Medicare Prescription Coverage
 

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 :confused:

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 :confused:

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:hug:

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 :mad:

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 :hug:

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.

Thanks suev :)

Actually I have good news.... I don't have to worry about adding prescription coverage to my Medicare or getting a supplemental policy right now. My husband's severance package lasts for the next 8 months so we are still able to keep his Insurance Coverage at the "active employee premium rate" until his Severance Payment Period is over in June 2012. :yahoo:

Whew! Now I have more time to figure out what I'm going to do when that time comes. Until then, I'll keep thanking God as I recieve my fully covered very expensive IVIG's in the comfort of my home while wearing my cute little pink fuzzy slippers.

Thanking everyone who responded and /or even thought of me during my little freak out phase :grouphug:

Great news! Can you contact your husband's current provider and see what it would cost to maintain the existing plan after the 8 months are up? My own plan at work is setup so that as long as I pay my premium I keep the plan whether or not I'm still with my current employer...

Shari

I mentioned in my last response that I would be looking into differant suplement coverage that may be cheaper than the part B Medical) and part D (Presciption) that I am curantly enrolled in.

Yesterday I talked to someone at Medicare (1-800-Medicare ) and she walked me the process of locating all the providers for finding the providers for PART D that would make my out of pocket expense less and I found quite a few that will save me Money on my presciptions. She waled me through the prosess on the computer and it was very time cosuming but it was definatley worth it.

A representitve should be able to do the same for you to find the lowest cost coverage for PART B. That is the part of Medicare that covers IVIG.

If you call , be patient and persistant.

Tony

Thank you Brennan068 :)
From what I read in the paperwork that was sent home with hubby, after his severance period is over is when COBRA kicks in and those premiums are so high it's unbelievable! We're waiting for additional paperwork regarding medical insurance to arrive in the mail. I did read something about him possibly being eligible to receive a premium reduction after his severance period is over. Guess I'll find all that out once the paperwork arrives.

And, Thank you too scrubbs :)
I was wondering how in the world I was going to figure out my way through this Medicare Maze when the time comes! That's great that you found someone to walk you through the provider process. I hope I find someone as helpful as you did when I make my phone call. As soon as I get that paperwork I'm going to get a jump start on it.

Wish me luck! :wink:

glad to read it worked out.
I also wear pink fuzzy slippers but my nurse makes fun of me.

Thanks allen L,
Have to admit, If I saw you in pink fuzzy slippers, I would make fun of you too :D

I just would like to say how sorry I am about your circumstances and others like yours. My heart goes out to you.
everyday I thank god I am in a country that has universal coverage. between my son's cancer and my MG I would be living in the streets by now

randy

Let the frustration begin.... Time sure does fly by when you have private insurance coverage! It ends in June 30, 2012. If I continue on Cobra on my own, it will be 545.00 per month. Hubby still hasn't been able to find a job and it would be very difficult for me to pay that premium with the SSDI check I get every month. I've been speaking with an agent with one of the Medicare Advantage Plans and all I can say is...... :thud::Bawling:
There is NO WAY that I can afford to pay 35% for each infusion. I have been able to stretch them out to every six weeks and was hoping to stretch them out even more but not sure when that will happen. I just need to step back, take a deep breath and say a prayer that God will work everything out for my good. My head hurts and I'm going to leave it alone until Monday.

I did see my Neurologist today for a regular follow up appointment and we also discussed my options. He's going to do all that he can on his part to help me as much as possible and his assistant is checking on some things for me. I receive my IVIG at home with a Home Health Nurse they are going to look into the option of me receiving it in his office and other things. I'm also going to call the numbers Juanitad listed next week and see what I can find out.

I have a feeling this is going to be an interesting journey...

I wish you all tjhe best in trying to find reasonable options. Insurance (all / any of it) looks for any out if there's a history of actually using your medical benefits. Totally stinks!

Please update as you can...I'm sure there are (or will be) others who can benefit from what you learn. So sorry this is happening to you.

Thanks sue :) I haven't been posting for a while but I do come on here often to read. I'll be sure to keep eveyone updated.... Whether Good or Bad

Shari, I'm told that the MDA (muscular distrophy association) classifies MG as one of the conditions under it's "umbrella", and that you can call MDA clinics to see if you can get any help that way. Haven't tried it myself, no need. Hope you get the help you need.

Thank you ody10!
I'll add them to the my "places to call" list for Monday. I hope you never have to place that call for yourself either.

God's Blessings,
Shari

Shari, All I can say is that this makes me so sad that money gets in the way of good health but glad that people here are so willing to help.

I hope you can work things out to get the care you need.

:hug:
Annie

Thank you Annie :hug:
I agree one million percent and have always felt that way even before my current situation. It was getting very frustrating talking to the Agent/Representative for Anthem because she couldn't understand that "Privigen" wasn't a drug that could be picked up at my local Pharmacy. I don't know how many times I had to keep telling her that it's a blood product which can't sit on the shelves of my local pharmacy like Cellcept and Mestinon. I finally gave up, thanked her and told her to have a nice weekend.

I've been on IVIG since 2005 and it really works for me. I dare not think of what could happen if I can no longer take it due to lack of money to pay for it on m part. That's not going to happen. I'll find the assistance I need to get my "go-go juice" from somewhere.

Shari, Have you looked into Hizentra? It's the subcutaneous version of IVIG. You'd have to not care about needles. ;) I don't know if it's less expensive or not. You can do it yourself at home, after training. You need to take the same basic precautions but have more flexibility. I've been told it's not as strong as the IV version but does the trick. Just a thought.

That was very "evolved" of you to send good wishes that woman's way. ;) It's amazing how little training medical para-professionals get before working.

It's really jarring to realize how dependent we can be on drugs. I sometimes think of what it would be like if they stopped making certain ones or ran out.

Hope you get it all worked out.

Annie

I used to give myself allergy shots with a tuberculin needle. :eek: NOT as bad as it sounds. REALLY!! They could probably even teach hubby to stick you. I think the Hizentra, being sub-cu, has the needle poked in "sideways" -- which really does NOT hurt much (I got tons of allergy tests this way).

Shari, I'm sure you've looked into Medicare Part D? In my state, Privigen IS covered. Once you went through the donut hole (which would be, say, after ONE infusion :D), you'd probably be "ok". Well, "ok" comparitively speaking. :(

The CVS Part D plan I found had someone paying 25% (Privigen is Tier 4) before the donut hole -- of course that is after a premium and a deductible. But, still might be more affordable than Cobra! I think that perhaps Medicare will cover the medical part of the infusion (??????), just not the drug itself?????? (Heard this somewhere -- you might want to give them a call to make sure!)

There's a video here: http://www.hizentra.com/consumer/abo...ion-video.aspx that shows how patients administer Hizentra to themselves.

I asked my neuro about it, and as I expected he told me he has no experience with it. We MGers have this disadvantage: our disease is neurological, but some of the treatments are more typically prescribed by a rheumatologist or other specialist.

Abby

Going to Infusion center is cheaper than having a nurse come to your home. I always go to the Infusion center for my treatments.
Mike

You guys are great :grouphug:

My previous nurse told me about the self administered version of the IVIG but to be honest I just don't know about doing that myself. Something about doing that just gets me squemmish. I've been receiving IVIG for over 7 years and I still turn my head away when she sticks me :o

I am just so confused with everything... Get Part A and B with Part D, Get Part A, Part B with Part D and get a supplemental or get Medicare Advantage with includes Part A, Part B and Part C without Part D and no supplemental, Scrounge around for all loose change in the couches, cushions, cracks and crevices in the entire house to pay for Cobra coverage or stand out on the corner with my sign begging for donations and oh don't forget about the loophole, donut, copays, deductibles,coinsurance... yadda yadda yadda. Did I mention the fact that all these things cost as much if not more than my SSDI check is every month?

Does it really have to be this difficult? And soooo confusing????

I know in my heart and soul that everything will work out for me. God has blessed me so much over the last 17 years in dealing with MG and everything that has come with it. I know that he will not leave me now. I just have to take it one step at a time, listen to his guidance and advice from others and figure out what option is best for me both medically and financially.

I'm going to wait to hear from my doctors office to see what they find out and then I'll start making my calls.

Too bad I don't live in Sweden where healthcare is free :p

Thanks for letting me vent!

Medicare advantage plans are NOT for us. They are for people with less medical problems because the premiums are so much cheaper.

Are you eligible for Medicare Part A? If you are thats wonderful and your monthly premium should be just over a $100.00 a month. Than you can purchase a Part B supplement for about $160.00 a month.

Part A pays 80% of your infusion cost.
Part B pays the other 20%.
You Pay nothing.

Part D is prescription coverage. If Medco is available in your area that is the best prescription coverage you can get. It costs $69.00 a month but I pay only$12.00 each for a 3 month supply of Mestinon, Cellcept and Prednisone.
$36.00 total for all 3 for three months. Mail order.

So $296.00 a month covers my infusions and all my MG medications.

Tony

I'm sorry. $365.00 a month total.

Hi Scrubbs,
I already have Medicare part A and part B (Hospital coverage and Physician Coverage). I've had that since I was approved three years ago but I didn't get the Part D prescription coverage because I was using my husbands private insurance as primary for everything including my Infusions which had already been fully covered under my hubby's private insurance.

My Part A and Part B is less than $160 though so do I need to purchase a supplemental coverage with part B? If not then are you saying all I need to get is Part D prescription coverage??

That's where the confusion lies with me. Is the drug "Privigen" (my immunoglobulin) covered under prescription coverage Part D or Part A and B? I just don't know who I can talk to that will be able to answer all my questions and explain this to me.

I may be making this more confusing than it needs to be. I just need to find out what I can do to have all of my infusion costs paid for since that is the most expensive.

Whew!!!

I just read this post again and think I understand what you are saying a little more. Please correct me if I'm wrong.... I already have Part A and Part B. Since I have both of these, I should look into getting a Part B Supplemental AND Part D Prescription Coverage. I need to read more about the part B Supplemental to understand it more clearly. I'm just confused about Part A paying 80% of the infusion cost because the majority of the infusion cost is from the drug itself and Part A doesn't cover medication. :confused:

Shari, read this:

http://www.fffenterprises.com/Blogs/...-Globulin.aspx

I'll keep on looking to see if I can find an official Medicare site.

Read this, too. (Scroll down to the part about MG -- it says page 11 on the bottom right hand side -- but, NOTE that the published date on this is 2007 -- and rules may have changed.)

http://www.bioalliance.org/Downloads...alCoverage.pdf

Did a search on Medicare's "official" site -- NOTHING at all. :confused: They must think it is over our heads. :D

BUT, your doc's insurance people will probably know -- the coding and all.

Thanks for the info jana :) I should be receiving the publication from SS with info about the Supplemental Insurance Policies within the next couple of weeks. I'm also waiting to hear back from my Neuro's office with information they have found out.

Just going to take a deep breath to calm myself and ask for a lot of guidance from God to help me figure all this out.

As always, I welcome thoughts and advice from anyone who is in the same situation as I am or from anyone who just wants to give me their two cents:)

Thanks everyone :grouphug:

Immunoglobulin infusions are covered 100% through Medicare Part A and Part B. 80/20. It is considered a medical procedure.

Privigen, the injectible IG, is considered a drug and is covered under Part D.
I pay nothing for my infusions. If I were taking Privigen, my co-pay would be 26% of the drug cost with the Part D plan I chose.

Go to http://www.medicare.gov

Under find plans. Click on Compare drug and health plans.

Enter your zip code. Then click on Find Plans.

Click the circle Original Medicare an then click the circle below.I don't get any extra help. Ignore the boxes that pop up. Then click on Continue to Plan Results.

Start entering the drugs you are taking. when you type in Privigen, It will be the first to show up. Click on ad drug. A pop up will show up. Fill out the info asked for then click on Add Drug and Dosage.

It will bring you to another screen that will show your input for Privigen.

You can start putting in your other drugs and they will be added to your list.

That screen will also have information on the top right you should write down.
Drug list ID and password date.

After you enter all your drugs, click on my drug list is complete.

On the next screen click on a pharmacy, then click on Continue to plan results.

Click the first box. Prescription Drug Plans (with Original Medicare) and the continue to plan results.

That will take you to all the insurance companies and show you what your premiums would be under the plans they offer and what your annual drug cost will be.

They come up in the order that will be the cheapest for you.

It will show you $25.80 monthly premium, Annual Drug Deductible: $320 and your annual co-pay. About $4200.00. to $4500. a year. Ouch.

My advice, try to talk to your Dr. and have him get you on the infusions.

Even though there is not much differance between the list of providers for Privigen, There could be a big saving for other drugs you may be taking.

Like I said before, my Cellcept, Mestinon and Prednisone cost me $36.00 for a 3 month supply of all three and my premium is $69.00 a month.

1-800-MEDICARE. A Rep from Medicare will take you through the entire procces above once you go to:
www.medicare.gov

Tony

For anyone else on Medicare Part D, I just want to add that going through this proccess can save you money.

I chose a plan for this year with a $69.00 monthly premium. Last year with another provider, my premium was only $39.00 but the the cost of my drugs went down so much because I am saving a Lot of money on my co-pays.

Tony

Thanks for all your help Tony. I'm going to follow your instructions and go to the link you provided as soon as I can print your instructions.

I just have a couple more things to ask you...

1. I've always had my IG infused with an infusion pump, even now with Privigen so I'm not sure why Privigen is coming up as an injectible drug :confused:

What's the name of your IG Brand? I used Octogam for many years until it was recalled and my doctor switched me to another brand which I had a bad reaction to (I think GammaGaurd) He then switched me over to Privigen which is infused.

I've never tried the injectible IG (I think it's called subcataneous or something like that)

2. Secondly, why in the world don't these agents for insurance companies understand that IVIG is a medical procedure?!?!?!?! I kept telling the lady from Anthem what it was and she kept treating it like it was something that I do everyday such as swallowing a pill! Of course you don't have that answer.... I just wanted to vent!
But I guess she was reading what the computer told her about Privigen when she said that I would have to pay 33% for Privigen each time I received the infusion which is VERY EXPENSIVE and that's why I went into Panic Mode

3. Sounds like if I get the right supplemental insurance along with the right prescription drug plan along with the "correct" IG brand then my infusion costs (including the drug) will be fully covered and I won't have to pay that "out of this world" co pay for the drug right?

4. Are you going to a hospital or infusion center for your infusions or are you being infused at home by a home health care agency?

Thanks SO much for your help. I REALLY appreciate it! :hug: