Anyone have any ideas to help me pay for med

I am on Gilenya for my MS. My husband has retired and now I am going on Medicare. The co-pay for this drug is $2000.00. I cannot afford that! The drug maker does not help those on medicare, only regular insurance. This is stupid. I looked into other co-pay assistance programs and we make too much money.. Other drugs for MS are about the same.

What do you others on Medicare do to afford your meds?

I guess I'm going to have to stop taking it.

30 Replies

  • Kath55, I am so sorry that this is happening to you. Do you have to pay it once a year, a month, or per prescription, it's appalling. You work all of your life then be treated like that when you retire. The government should give free prescriptions to retirees. Sorry I will get off my soap box now. With living in the uk, and now retired I get my prescriptions free, but my doctor tells me how much I am costing the NHS but all I say is that I have paid into it for 40 years so I am not worried. I hope and pray someone on here can help you. Have you tried ringing the MSAA, and ask their advice. Let us know how you get on, blessings Jimeka

  • The co-pay is once aa month. No one so far wants to help medicare people. WE are the ones that need the help. My private ins. paid the whole thing. Got spoiled. I'm going to call MSAA Monday and see what they could do Also going to call my MD and see what others do.

  • You are so right, this is across the US.Alot of docs wont even take you because they get little on the dollar.Drug companies are such an issue.I have dealtht he system because over night my med not on their list and withdrawal I cannot tell you is everyday even on a medicine for bloodpressure. its something you take every day it becomes a part of you.Why I have chosen not to get help but suffering because of that.Lower prices we just may hurt less and be more productive....Once in awhile a coupon AT the pharmacy will give you a break one time....sometimes wishes and pls share when you get answers.Thank YOU!

  • Kath55 see if either NMSS or MSSA can direct you to resources for drug assistance. Does your neurologist have any suggestions?

  • Call the manufacturer, most of them offer co-pay assistance. You'll probably get it free.

  • Go to the website for the drug. They have a drug assistance program. They also state that you should have a $0 copay. Sometimes this doesn't apply to Medicare patients (lucky us) but they can assist you in securing the medication with a small out of pocket copay. I get financial assistance from Biogen for my Avonex. Give the company a call.

  • Looked it up. Does NOT cover Medicare. Go figure. We work all these years and you have to fight to get coverage.

  • Call them they don't put all their information to help people online. You just might be surprised. Worth the call.

  • Called Novartis. Within 3 days, I got a call and from Good Days. They qualified me. I pay $20. That is a lot better than $2000.00.

  • I'm so glad to hear this!!! Always call and ask. Nothing ventured nothing gained

  • yahhhhh!

  • I also get assistance for my Copaxone. I am on Medicare and I receive the Extra help from my state that applied for when it was first available.

  • For the first few months of the year I pay a small fee with the Extra help and now I have met my deductible and my meds are free. I have been receiving the extra help since it became available. I'm sorry that others are having so much trouble paying for your medications. I'm kind of afraid to try and switch to a different medication now.

  • I am having this same issue being on Medicare. The drug companies r not allowed to help people on Medicare as it would make it look as tho they r "bribing" us to use their medication.

    I am hoping this is something they can fix with new overhaul Trump is planning for health insurance.

    I have stopped taking my meds as well. Even if u get help with the copay - it throws you into medicares "Donut Hole" and none of ur medication is covered until u spend $3 or $4 grand

    Its ridiculous!

  • I am so sorry....

  • Check with you local MS society or go online and check the company's web site. There are grants available to pay for meds. Good luck.

  • Kath55 i guess financial aid is based on income. We are on SS and a pension, about $40k and we qualified for my full copay for Aubagio when I was on it and now on Cspaxpne financial aid for that all also. Copay is 4K a month, both of us on Medicare, doctors office found financial aid me. We about $4k a year above poverty level.

  • Kath55 , check out . They're a sort of clearinghouse for copay assistance programs. PANfoundation is another copay assistance organization that I've dealt with. Good luck getting some help.


  • Thank you ,I will try them.

  • Hello Kath55,

    If you haven't already, please feel free to call our toll-free helpline at (800) 532-7667, ext. 154. One of our Client Service Specialists will be able to assist you in finding resources in your area. You can also email them directly at

    Best of luck!

    Emily, from MSAA

  • Thanks Emily , this has been so hard. I will call.

  • Thank you Emily!

  • I'm sorry. Try contacting MSF, they are a wonderful group and might be able to help you with your meds. It's worth a try. I'm so sorry for this.

  • Shelly36 how are things going for you and your daughters! Praying air has settled down blessings Jimeka 🦋

  • It's okay. Day to day. I went to counselling and it helped. My brother and son are keeping a lookout for me. I'm grateful for what I have

  • Hi Kath55 , EmilyM375 gave you the MSAA number and here are some other numbers that might be able to help.

    NMSA 800 344-4567

    MSF 888 673-6287

    I wish you luck!! And please let us know how it goes!


  • Thanks Jes, will try these.

  • Thank you!

  • jackiesj if you are still looking for help let me know ok? And I can see what I can do.😊 I have been taking a steroid sabbatical. But should be back more now.😊

    Jes 🌠

  • Found a program where I only pay $20. Lots better than $2000.oo LOL !!

    Thanks for checking up on me!

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