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How much is MS treatment costing you per month?
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How much is MS treatment costing you per month?

I cannot believe how much medications for treatment of MS cost!  I will be starting Copaxone and the cost will be $510 a month with HealthNet insurance (OUCH!).  It seems that HealthNet is not very prescription friendly because I have to pay a 30% co-payment.  My wife has Kaiser insurance and she is going to find out how much it cost from Kaiser.

How do people with MS afford their treatment?  This is just so costly.
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46 Comments Post a Comment
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Avatar_f_tn
I expect to begin meds next week and have the same concerns.  I'm curious how many medicatons people take for MS related symptoms and how these costs figure in.

Sherry
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147426_tn?1317269232
Because I am on Social Security Disability I am on Medicare.  My out-of-pocket cost for my Avonex is about $4500 a year.  But on top of that I have the Provigil and the Clonazapam which adds another $500 a year.

Quix
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294596_tn?1193453025
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294596_tn?1193453025
Being in the know as far as health care is concerned, what would you say to those of us who have not been diagnosed yet as far as insurance related issues are concerned.  I know it must be harder getting health and life insurance once you get a DX like MS.  I currently work for Kaiser and have Kaiser insurance and have no clue about the RX coverage for more intricate meds. like Avonex.  Once the diagnosis is made, everything I know will be affected.  I am also reluctant because I am an ER nurse at the present and what would my co-workers think.  I have to be at the top of my game all the time.  Can't stop CPR because of numbness...etc. you get the picture.  Not that they would have to know but seems it would be living a lie not to let my co-workers know.  A lot goes into this whole seeking a diagnosis stuff.  So much will be affected if I get a diagnosis.  I am fortunate enough to not have any physical symptoms other that the paresthesias, I mean no paralysis as of yet except the whole waking thing I mentioned.  BTW, what is that about, does that happen with MS?  

  
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Avatar_n_tn
I have 2 insurance companies,my hubby and I are seperated and still carries insurance which helps but it only covers 20% of my rebif and I have state insurance which picks up the rest.Plus my 6 other meds.If I had to pay out of the pocket,I wouldn't be on any meds as I couldn't afford them.My meds a month would be about $3,200.00.
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309199_tn?1237504252
i am on rebiff interon injections 3 times a week . it costs 1000 euro a month . that,s before consultant fees . but due to the fact i have ms i get all mediction (medication) free . i don,t understand why u have to pay for this because its a life long illness ...?
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Avatar_n_tn
My wife is putting me on her Kaiser insurance and it will cost me $20 a month for Copaxone plus $140 a month for insurance coverage.  Much better than $510 per month for Copaxone.  
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266400_tn?1193638081
before I got on Soc Sec Diability and now on medicare,  I called Avonex company and most companies have chairities.. I KNOW I KNOW>. who wants charity.. but I'm telling ya from experience...  they have charities for people like you and I for a reason...
You may have to pay a small portion, if any... try it and see what happens.
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Avatar_n_tn
I have Blue Cross Blue Shield and get my Copaxone from Curascripts, which costs $1,600.00 per month and I pay $25.00 - out of my pocket.

Wonder how these places sleep at night with what they charge for this drug.  I was diagnosed in July 2006 after a severe relapse.

Hope everyone is doing better.
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372680_tn?1228165210
I have BlueCross BlueShield Federal and generic prescriptions are $10 while brand name are $30.

If you're being charged by the -prescription- maybe ask 1-for samples 2-if they can prescribe larger doses at a time, to help reduce refills and reduce costs.

On the upside, you can probably get a tax deduction for the costs!!!  Just keep track of all your medical expenses, preferably in an itemized list.  I'm incredibly dorky when it comes down to deductions.  :/
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364356_tn?1199872236
Evan though I had prior coverage my new insurance got around the pre-existing issue and I have a 280 day waiting period.  Not sure how that is legal but any way.
Right now all my MS issues are out of pocket except for my scripts with the exception of the Betaseron, ouch!
I read an article about people going over seas for health care.  They listed the cost of different operations in other countries comparative to the USA.  It was a HUGE difference.  What would cost 50,000 would vary form 1,000 or a bit more over seas.
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Avatar_f_tn
Hello everyone!!!

I have been on Avonex for the past 3 years and my biggest copayment was $12.00 a month, now it is $8.00.  I have Blue Cross and Blue Shield from the Federal Government, my employer.  If I had to pay all my medications out of my pocket I would not be able to afford it because it would be around $4,000 a month.

I remember when my good neuro first prescribed Avonex.  She faxed it to Biogen, the pharmaceutical that developed it, and in less than 3 hours, its representative was teaching me  how to self inject and also everything that I should know about the medication.  On that same day, a caseworker called me to explained the side effects, how to handle any issues that may arise through the course of the treatment, their customer service which is excellent.  I was called again my a Biogen representative, by the way because I am in Puerto Rico they thought that I may need a translator and they had one in each call, a representative from my insurance company and myself to discuss what would my insurance cover, what my copayment would be and if there was a max amount in the year, because they needed to provide me with medication no matter the cost.

The Avonex lady could not believe that my copayment was so low, but she told me that if my circumstances change to let them know immediately because they have sponsors who would help me out with funds to cover my medication.

My reccomentation is to call the manufacturer and ask if they have sponsorship programs or at least explain your predicament to them, they may the solution to your problems.

Keep in touch!!!!!

Zulma
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Avatar_n_tn
There are organization and foundations willing to help.  Do some research and you will conclude that there is help out there.  I know of a foundation in which you could earn up to $80,000.00 a year and still get free prescriptions.  Check it out.  It is freemedicationfoundation.com.
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429700_tn?1308011423
I'm on Copaxone.  I just got a call about a week ago, saying that I am eligible for a program that would pay my co-pay.  However, my pharmacy (Medco) isn't a participant.

It's worth a shot to call Shared Solutions to see if you would be eligible for this program.

Deb
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627818_tn?1271780626
I'm on Avonex and have been for six years. My husband's insurance covers it except for a $15 co-pay. I also get mine thru CuraScript. Funny story - when I first started, I picked it up at the local Walgreens. The first time it went smoothly and the next time, the pharmacist assistant called me over and whispered to me - It's $1,300! Is that really what you pay? I replied that no, it was usually 15. I thought he was going to faint! He thought I meant $1,500! So, after a call to the insurance company, it was all straightened out, but the look on his face was priceless!!
Doesn't the NMSS also help with payments?
I just looked at my invoice from CuraScript - they bill insurance $2,052.13!!!
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620048_tn?1358021835
I also have Medco for my prescriptions, mine is thru IBM and i think they are all different depending on who you get it thru.  Anyway, my prescription insurance runs out in June now so i have no coverage from June to Jan now. But in May i turn 65 and go on medicare and hope that will change things for me.

I have always womdered what other people do to pay for meds.  My most expensive is provigil now ,, but that is even too high for me.  This is a good topic for all of us i am sure.

hugs,meg

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382218_tn?1341185087
My Copaxone is $1400/month.

Alberta has a provincial MS drug coverage program.  Eligibility is based on a dx of RRMS, referral by a MS specialist, and enrollment in a non-group Blue Cross plan.  It is not needs/incomed-based.

I pay about $30/month for the the non-group Blue Cross coverage.  

Under the MS drug program, the co-pay for Copaxone would normally $30, but since I am also enrolled in a Blue Cross group plan at work, the plans are linked and I pay zero co-pay for Copaxone and all my other meds.

All Canadian provinces have a similar MS drug coverage program, so no one with a RRMS diagnosis in this country ever has to go without DMD's due to their financial situation.  
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ps: for low-income Albertans who do not have additional coverage to cancel out the co-pay, the co-pay can be waived if they can demonstrate that they cannot afford it.
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338416_tn?1260996698
right now I pay $65 for Copaxone, and $66 for Aricept.  I'm going to have to switch to a more comprehensive health plan, because the plan I'm on right now has pretty high co-pays and too much deductible.
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Avatar_f_tn
We are really lucky in australia with our Medicare system. My Rebif costs around $1,000 a month but the government pays for most of this and i only pay $30 a month. Thank god coz i wouldnt be able to afford to be on it otherwise. I have private health insurance too but  the medication is not covered on that.
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294425_tn?1288531995
I have BCBS insurance thru my husband.  When I was on Rebif, it cost me $40 a month, although the cost billed to my insurance was about $2100 a month.  My Tysabri is also costing me $40 a month, because they are putting it under prescription fees vs medical treatment fees.  I then also pay $7 a month so far, as my copayment for the infusion itself.  Altogether, I shell out around $240 a month, just in copays for medications - which is after my deductible has been met, as well as my out of pocket cap for the year.  

I am very concerned right now, because in January they will start negotiations for my husbands insurance - they run on 3 year contracts where he works.  If they go from a 3 tier prescription plan to a 4 tier, I would have to pay a percentage of the Tysabri instead of a flat copay - and I would no longer be able to take it, even if it is helping.  There's no way we could afford a percentage of that cost, as well as the percentage of some of the other costly meds I am on.  

It stinks that we not only have to deal with MS, but always be concerned with the intricacies of our insurance policies.  Never before in my life have I paid attention to how much of my lifetime cap I have already used.... :)

Rita
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Avatar_f_tn

I take Tysabri and the medication alone is $6,000 per month +blood work $150.00 + administration fee of giving me the medication $650.00 + the visit with the Oncologist every month $200.00. My insurance pays everything except my $35.00 co-pay. In 2009, my insurance company is raising our co-insurance from 10% to 20%.

My neurologist is opening an infusion site at within the next two months, so until then I have to get my infusions at AR Oncology Associates.

I have tried several of the CRAB medications and they are all expensive, but insurance seems to pay most all of the cost....or in my experience it has paid everything except the co-pays.

Have you been advised by your doctor to try a specific medicine? If so, which one are you looking at starting?

Good Luck

Lori
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Avatar_f_tn
I's sorry I just re-read where you will be starting Copaxon. Call the company they have program for people who can NOT afford the medication. There is a list posted on the health forum with three pages of resources for help with medications/medical equipment. etc. They are listed under Resources I,II,III. Also Montel Williams had a medication program...if I'm wrong some please correct me.

Lori
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664710_tn?1226933196
Hi all.

I figured I would add to the conversation.  I have United Health Care and I am on betaseron injections every other day, Gabapentin and Citalopram.  So far my insurance has been pretty good about it. Otherwise the injections alone would cost a little less than 2000.00 a month.  My out of pocket for just the medication in 44.00 due to the fact that I just changed pharmacy's.  Add in co-pays and it's a whole other ball of wax.

Be good everyone!
Christina
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Avatar_n_tn
Hi:  I found out this week that I have a high probability to develop MS and I have to start using medicine once a week, I don't have insurance right now and I have ITIN number.  Do you know if those programs that you talk about it can help me?  The doctor told me that my medicine will be around $1000 a month, I can not affor it but I know I have to use the medicine to avoid other attacak.  Is anyway can help me?

Thanks

Monserrat
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667078_tn?1316004535
I pay $500 a month for  a group plan insurance for myself and another $500 a month for copays. I will not be able to refill my Copaxone because I am now diagnosed with PPMS and Copaxone is not FDA approved for PPMS so I would have to pay the full amount. My Copaxone copay doubles every July so it would be up to $200. Our income has been cut in half and a third of it goes to my medical. I thank goodness I chose not to have children.

Alex
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1196859_tn?1266138538
A lot of the prescription companies have financial assistance plans that can help.  Rebif had one to lower your copay or give you the drug free for a year.  I know that Copaxone has a form of financial assistance that you can apply for.  I'm applying now to see if it'll help (no income or medical insurance here, yay).

If that doesn't help, I'd talk to the doctor or his/her office to see if they know of any programs or call the MS Society.  There are tons of programs out there.  

National MS Society website
http://www.nationalmssociety.org/index.aspx
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739070_tn?1338607002
My Copaxone is $2700/month until I meet the out of pocket max for the year. My other meds I haven't calculated a total but are approximately 200+/month. Once I met the the max out of pocket, it's a free ride to the end of the year.

We have a Health Savings Account and after the first year on it we saved enough to have a rollover for each year but the January and February are always a financial struggle, especially since our income has been cut almost in half.

Ren
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338416_tn?1260996698
>  The doctor told me that my medicine will be around $1000 a month, I can not affor it but I know I have to use the medicine to avoid other attacak.  Is anyway can help me?

Keep in mind that a DMD will not prevent future attacks.  What it does is help to prevent attacks, usually by 30%.  It also helps prevent brain atrophy from neuron/axon loss.

I think a $1000-a-month payment would be more debilitating than an attack!  I haven't been taking my medication, and mine is only $75 per month.  (Which I can't afford.)
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667078_tn?1316004535
Anyone who applies for needs based assistance with Shared Solutions realize it takes weeks sometimes months for approval. They do not reimburse for prescriptions all ready filled even by one day. So get your paper work in ASAP.

I personally feel the cost of a DMD is cheaper than an ER visit, a hospitalization or steroid infusions, or a wheel chair.

I am sad DMDs do not work for me.

Pharmaceuticals actually cut down on hospitalizations and Doctors visits. I have Asthma and the drugs are expensive but just tonight my Nebulizer kept me out of the ER.
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Avatar_f_tn
My husband is Active Duty Army. Tricare covers most of my Copaxone ($2700 per month). I pay $9 a month for Copaxone and $3 for Gabapentin. The most I am supposed to ever pay for prescriptions is $27.

Fair trade for having him away from his family for a year at a time...
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Avatar_f_tn
My neuro strongly suggested I start meds, but there is no way I could afford it. I have insurance and it would still cost me over $500/month. Hope is free - so that's what I'm taking currently. :)
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1142155_tn?1261770432
I'm in the same boat you're in.  I have no insurance and can't get insurance unless my husband obtains a new job that will allow me to be covered under his insurance.  I'm not counting on it.  Two different neuros have told me prices on the various DMDs:  Copaxone usually around $1300/month and the others can run up to $3000/month.  I learned a long time ago that all pharmacies are not the same and that some are quite a lot cheaper than others.  It pays to call around and compare prices for medications purchased.  Walmart is assumed to be the cheapest, but my drugstore beats their price on most of my meds by 300%.  Many of my meds are also heart-related prescriptions, so it's not uncommon for mine to cost $400 a month out-of-pocket.  If the Rebif or Copaxone that my neuro wants me on can't provide it to me for free or very close to free, I'll be living without it, and experiencing relapses, no doubt.  But I am reminding myself that even on the DMDs, I might be experiencing relapses.  They are not reliable for everyone.  On the flip side, the manufacturers of all the interferons are still compiling their research on effectiveness of their drugs.  To some extent, these are still experimental, which makes the drug manufacturer more willing to work arrangements with patients who cannot afford the medication.  It's a treacherous road, any direction we limp off to.  
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Avatar_f_tn
Hi

I hve been lurking for some time, you have a very active and helpful forum!

Well, the medication I chose to be on is LDN (Low Dose Naltrexone) which costs me £15/month. There are few options for PRMS, the most shocking offering being chemotherapy *shudder*

LDN is available in the US from $15-$38 per month, some providers accept insurance and some charge postage.

I am also on as needed antibiotics for urinary issues which costs much less than £100/year.

Supplements and following a healthy diet is my biggest expense.

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Avatar_m_tn
Your LUCKY to be working for the system !!! We DON'T !!!  I have been giving  my own Avonex injection for 12 years now that Iam on good ole not understanding all their doughnt holes I have to waste the doctors time and mine adding co-pay each week to have my injection.   Waste of money if you ask me ? I just hope I don't have to stop my injection because of the ugly goverment policy. of course you won't as long as you work for the Great System !!! Good Luck
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Avatar_f_tn
I HAVE BEEN ON REBIFF FOR OVER 10 YRS NOW THE ODSP DONT WANNA COVER THE MEDICATION, THEY TOOK IT AWAY FROM ME AND I CANT AFFORD TO PAY FOR IT.WHAT MIGHT HAPPEN TO MY MS WITHOUT THE ONLY HOPE I HAD FOR NOT ENDING UP IN WHEELCHAIR?IM REALLY SCARED.MY MS IS PREATTY BAD
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Avatar_f_tn
I just got back from an appointment with a lady that is supposed to help me pick the best medicare insurance plan. Copaxone kept coming up costing over $120,000.00 a month, I thought it was a misprint, it had to be. So I made the appointment,  when I went to this appointment she verified that the cost has doubled like 4 times in the past 6 years. And yes with my 4 autoimmune disorders my medications are over 1 million a year! Am I wrong or are they just covering the cost up, I couldn't find the retail price anywhere (just what peoples co-pays are,) I can't help but wonder if this is how the government gets everyone depending on it.I don't qualify for extra help after the 1st of Jan., I'm scared. My family is just scraping by so Copaxone is going to have to take a back seat even though it's working very well.
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Avatar_f_tn
Through Shared Solutions I am able to get my Copaxone for $35.00 per month. They pick up what my insurance doesn't cover.
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1847422_tn?1332870656
when i was about to start the rebif.. they said it cost $46,000 per year!!!!!!

$318 per injection!!!!! im like uhh... isnt CRACK cheaper than this???

my insurance was only going to pay 50%.. so thats still $1900 / month..

luckily my *** is so broke and disabled, that the company got me signed up for an assistance program.. first 3 months are FREE then only $50 a month after that!! i was SOOOOOO happy to hear that.. otherwise.. no way id be able to take it!!!
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Avatar_f_tn
This is great to hear! I was just diagnosed and I was worried about the cost even with Tricare. Have you done Tysabri?
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3986919_tn?1352129583

I am also getting my Copaxane through Shared Solutions I am able to get Copaxone for $35.00 per month. They pay what my insurance doesn't cover.(With BCBS my actual co-pay for Copaxone is $200 a month). If I have no insurance Shared Solutions said my cost is ZERO!

Laurie  
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Avatar_m_tn
I was also curious about the price, I am ensured by mapfre but they don't cover it, thankfully there's the public side where most medicine here in Costa Rica is free, so I don't have to pay anything.  But still I wanted to know how this works on countries where medicine isn't free since little by little they are trying to bring more private practice here.
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572651_tn?1333939396
hi and welcome.  You may not realize but you have added your question to an old conversation and you are in for some real sticker price when I tell you today's costs-

Treatment for MS in the US with any of the approved drugs now costs anywhere from $45,000- $65,000 a year.  Of course none of us as individuals pay that amount but that is the retail price.  

I hope we see you come around and share more about MS and what treatment is like in CR.

be well, Laura
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Avatar_m_tn
Thank very much Laura, it sure is way more than I expected.  I really hope our we don't get "privatized".  Anyway, neurology here is good and free, though they wait times are a killer.  When I first was DX 3 years ago, I had to pay $60 copay (out of $600) for a MRI, since at that time the machines at my hospital were broken, Now there's a fully equipped MRI clinic still the line for a exam could take a couple of months.

Anyway when I first started to have symptoms I was attended privately but I was quickly switch to the government's healthcare system since my insurance didn't cover that and I really couldn't pay for it.  it's an ok service just don't expect it to be the most glamorous.  I've been taking avonex all these time and so far no noticeable disability which I hope continues for a long time.  There's a group for people with MS if you become a member you'll be able to participate from all their activies, which are pretty much lunch or dinner parties sponsored by the farmaceutic as well as, if you ever have a relapse you go to emergency and take directly to a Neuro for a validation on how to proceed.

I believe there's an effort being made by the Neurologists here to understand more of the illness.  But there's still a lot to be done, I have around 3 or 4 doctors who see everyone twice a year on program appointments or when relapse.  As for the Meds I don't even have to go personally, any relative can go and request the meds for you.  There are around 400-450 people (mostly women) that suffer from MS here in CR, not that many people, which is why it still is a pretty unknown illness here.

Very few laws for disability at work.  My bosses as well as my workmates do know about it, but we hardly ever talk about it but overall pretty good about the situation.  I do get my shot every monday, so if I don't feel so good they allow to work from home.

That's pretty much my situation here. Anyway thanks for your quick answer take care Laura.

Jorge.
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572651_tn?1333939396
Jorge,

that was very interesting.  We know the further north we get the higher the rate of MS.  The number of people in CR with MS surprises me.  But I guess that makes sense since there are the special MS treatment centers that people in the  US travel to for stem cell transplants and other treatments.

Avonex is a very good drug and I am glad you are getting treatment.  Here in the US we now have 10 drug choices and more on the way.  

The costs are crazy and I will start a new question about that and maybe we can get a better idea of what everyone is paying these days.....  

Good luck and stay in touch,
Laura
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Avatar_f_tn
you are on SSDI an get medicare and still pay out of pocket over 5000.00? How can that be? I get medicaid and will be getting medicare with that in June that is like full coverage. I cannot imagine paying 5000.00 out of pocket for meds. I would not have a place to live. My yearly income is 12,000.00 dollars. Something seems not right with that picture, But I also dont' have all your facts either. I am not married and I am single with only SSDI income too.  
disillusioned2014
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