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    #1

    Biogen

    I've been receiving Ty free of cost for 3 years. Last week I got a letter from Biogen that they were discontinuing shipments. They also sent forms to fill out with ridiculous deadlines for " assistance".

    The catch is that I have Medicare. They want that government money. My neuro said, " ovffer the 80% that Medicare pays and walk away."

    I did that and they said they can't accept Medicare. They must charge a copayment. So I told them Free Drug Program or I'm stopping Ty. Stopping is scary but the stress of being stuck with a $1000 copayment is not worth it.

    Does anyone know how much Medicare pays. They usually reduce the cost.
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    #2
    I am waiting to see what others are saying. I know many here are on Medicare. It seems that they don't pay or have low copays. Guess it depends on what other insurance you get.

    I also get the assistance from Biogen. Took me forever to get my insurance to do the paperwork. They charged me $981 a month and then the last month before the assistance went though they billed me for over $2000! What could I do. I paid it. If Biogen stops their assistance program, not sure what I would do. I pay just $10 a month. You said "free", does that mean you don't pay even the $10? I am responsible for the first $6000 of bills each year then go to co pays.

    Please keep us posted on what happens. I think the new health care laws will make things worse not better.

    Comment

      #3
      Originally posted by palmtree View Post
      I've been receiving Ty free of cost for 3 years. Last week I got a letter from Biogen that they were discontinuing shipments. They also sent forms to fill out with ridiculous deadlines for " assistance".

      The catch is that I have Medicare. They want that government money. My neuro said, " ovffer the 80% that Medicare pays and walk away."

      I did that and they said they can't accept Medicare. They must charge a copayment. So I told them Free Drug Program or I'm stopping Ty. Stopping is scary but the stress of being stuck with a $1000 copayment is not worth it.

      Does anyone know how much Medicare pays. They usually reduce the cost.
      After receiving 3 years of a very expensive medication for free it seems kind of ungrateful to give Biogen a thumbs down sign and call the deadline for assistance forms ridiculous.
      He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
      Anonymous

      Comment

        #4
        Originally posted by Jules A View Post
        After receiving 3 years of a very expensive medication for free it seems kind of ungrateful to give Biogen a thumbs down sign and call the deadline for assistance forms ridiculous.
        I agree. My guiding ideas are: There ain't no such thing as a free lunch. Never look a gift horse in the mouth. Gratitude is the key to happiness.

        Comment

          #5
          Tysabri is an expensive medicine for patients but if the Biogen cost is unknown how do we know it is an expensive med for them to provide? Seems kind of presumptuous to give palmtree a thumbs down when we don’t know her circumstances.

          I don’t know what a year’s supply of Tysabri costs Biogen to produce but it may fall far below “very expensive”. For example, Biogen’s tecfidera is dimethyl fumarate plus binders necessary to form a pill. Dose at 480 mg per day is less than 200grams per year. Pharmaceutical grade dimethyl fumarate can be purchased for $52 per 100 grams. So the medicine in tecfidera costs about $100 per year. Tecfidera is priced at $54,000 per year. Expensive for patients, not for Biogen.

          Jules, I appreciate the quote in your post about the faithfulness of dogs, it is so true. Companies like Biogen could take a lesson in faithfulness. They are jerking the rug from under palmtree. Treatment decisions suddenly snatched from palmtree’s control is upsetting, I’m sure; it would be to you and everyone else, too.

          We all hope things work out for you, palmtree. Please keep us posted. I’m sure someone on Medicare can respond to your question. Best to ya.

          Comment

            #6
            I appreciate your comments. I HAVE been very grateful to get the treatment free of cost. It was the manipulative way they promised me 2 more years and then cut me off that was so upsetting. Im still negotiating with them. But I have let it go.

            Whatever happens happens. I'll find an other MS drug.

            LL60, your experience was very telling. My gut feelings were right. I would be left paying $2000 bills. It would leave me homeless.

            Now it's wait and see.

            Comment

              #7
              Palmtree,

              I am on the $10 copay assistance program. However, I am still responsible for the infusion costs and blood tests. This can run up to $800. I am lucky to have insurance, but am still responsible for $7,000 a year.

              However, this program specifically excludes anyone on Medicare or Medicaid. My acceptance letter states that "Biogen Idec reserves the right to modify or discontinue the program at any time.". It also states that "your participation in this program does not mean that you will be entitled to receive program assistance indefinitely."

              I have been on other ms drug co-pay programs and remember the same disclaimers. It is nerve wracking to think the programs can be modified or discontinued at any time.

              Without insurance and the co-pay assistance program, there's no way I could afford $12,500 a month for Ty. I think it's sad they won't accept Medicare. So many of us are on disability. I agree with LL60 that the new health care laws will just make things worse.

              Best wishes and I hope something comes through for you.
              Kimba

              “When you change the way you look at things, the things you look at change.” ― Max Planck

              Comment

                #8
                The irony is that Biogen would accept the 80% that Medicare pays. (I still don't know what that is, I'd like to know). It is a government law that requires a co payment. Weird huh?

                Comment

                  #9
                  On page 36 of the Time March 4 article, "The Trouble with Hospitals" (I highly recommend EVERYONE read this article) Biogen is discussed. Biogen's cost of sales (producing and shipping its products) is 10% of what they sell them for. In my case, the three infusion centers in Missoula, MT, pay $4000 for Tysabri, so it costs Biogen $400. My infusion center receives a profit of $400 over their cost, while a local hospital bills over $17,000. A bit much, I'd say....

                  Comment

                    #10
                    I was told they are charging $5000 a month just for that little bag to be infused.







                    Let's not turn this helpful thread into a discussion between members who disagree. No one will win such a discussion. MSWorld guidelines state: "1. INTERNET ETIQUETTE: Show respect for others at all times.

                    Comment

                      #11
                      My take on biogen

                      Biogen has been producing successful MS medications for years with quite a few new ones in the pipeline.

                      Once Tecfidera came out and stocks went up I new Tysabri may be on the chopping block. It is a very effective drug but the PML probably has the new stock holders worried and probably saw giving it away with no co-pay bad for business.

                      So what could happen is maybe a phase out of Tysabri or for the rich who can afford the co-pays leaning biogen users toward Tecfidera or competitor Novartis-Gilenya.

                      Biogen has 4 new meds in trials so allocating resources towards them is expensive so I'm not surprised they are hitting people on Tysabri and most likely soon Tecfidera.

                      Biogen stock opening at: $229.51

                      This is why we have to come together and be the change we want to see. If we stay with a certain drug just because it seems to be working what is encouraging other companies to develop new better drugs?

                      I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

                      Bill Hicks

                      Comment

                        #12
                        I have Medicare and a 2ndary-cost is covered
                        So if you get a 2ndary you would not be out of pocket.
                        I am pretty sure Medicare pays around $2,800.
                        Linda

                        Comment

                          #13
                          Thank you, Linda. That is exactly what I was trying to find out.

                          Durgaster, you see the whole picture. I have been thinking the same thing too. Tecfidera comes out, the stock goes up, Accredo stops distributing Tysabri and suddenly the chopping block.

                          Moderators, I still reserve the right to defend myself when I am harshly criticized. Why weren't those nasty comments deleted?

                          Comment

                            #14
                            I have been on TY 2yrs now and receive financial assistance for all my out of pocket cost for the drug.

                            My source of co-pay funding is a chartiable organization as far as I know. If what I've been led to believe about the chartiable organization covering my co-pay is true, Biogen is not contributing to my 20% co-pay. There may be some discount or other alt pricing extended to the charitable org, but Biogen is getting something or they would not be extending co pay assistence through charitable organizations.

                            Comment

                              #15
                              MSW 1963, I'm glad the assistance program is working for you. Biogen is probably getting the full amount allowed by your insurance. That would be what the insurance pays plus the co payment your assistance program pays.

                              What started this was that my neuro said, "don't let them get a penny out of you. They will try to get whatever they can get away with."

                              I may end up trying the assistance fund, but right now I'm waiting to hear what happens. Government money is not free. Everyone pays.

                              Right now I don't have a lot of negotiating power. I've decided to wait and try Lemtrada. It's supposed to come out next year.

                              I think that clinical trials should be paid by the assistance funds and the medication could be affordable for patients.

                              Comment

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