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HOW DID YOU GET GILENYA?

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    HOW DID YOU GET GILENYA?

    Hi,

    I am not on Medicaid or Medicare nor do I get SSI. I am still employed and have Insurance that as of yet does not have Gilenya available and I am told they have no idea when it will be available for sale.

    So I have read that people on this site did get Gilenya. Since it costs and outrageous $4000.00 a month and that the Drug company is offering a $600.00 to $800.00 copay assistance.

    I realized my Neuro Doc. has to fill out the necessary paperwork to get assistance from Novartis if I can get any. Problem is I will be the first patient of his that will try the medication.

    Is there anyone who has commerical insurance and is getting the drug through their insurance comapany?

    Is anyone getting the drug from Novartis for free or at a significantly reduced rate who have commerical insurance and still are employed?

    Thanks for the help!

    Hugh

    #2
    Hugh,

    I have Anthem BCBS PPO. Gilenya is still not on their formulary list, however they are willing to provide it at the tier four price. (For me that means a co-pay of 25% so yes $1,000 every 28 days).

    http://www.gilenya.com/assets/gilenya_srf.pdf
    This is the link to the paperwork which my neuro had me fill out partially and which she filled out the remainder of. It's important for you to have your neuro check all the goodies (particularly the starter kit under which you get up to 56 days of Gilenya while you wait for your insurance to get things straightened out). In fact you may want to call Novartis at 1-877-408-4974 to check and see if they an investigate your coverage early to see if anyone else was able to get coverage from your insurance provider.

    The story with financial assistance from Novartis is as follows. They will cover up to $800 of your co-pay through 2011. After that you'll be on your own. There's no strings. If you have a $1,000 co-pay, you'll only pay $200 (they'll directly make payments to your pharmacy so you don't have to worry). If you have a $400 co-pay, then you won't pay anything. Everyone gets up to $800 regardless of income, etc.

    If you do not have insurance and your income is at 500% of poverty level, then you get the drug for free. Still definitely not worth giving up your health insurance for though.

    Hope that helps some. Don't hesitate to holler if you have other questions.

    Comment


      #3
      Originally posted by Just a small town girl View Post
      Hugh,

      I have Anthem BCBS PPO. Gilenya is still not on their formulary list, however they are willing to provide it at the tier four price. (For me that means a co-pay of 25% so yes $1,000 every 28 days).

      http://www.gilenya.com/assets/gilenya_srf.pdf
      This is the link to the paperwork which my neuro had me fill out partially and which she filled out the remainder of. It's important for you to have your neuro check all the goodies (particularly the starter kit under which you get up to 56 days of Gilenya while you wait for your insurance to get things straightened out). In fact you may want to call Novartis at 1-877-408-4974 to check and see if they an investigate your coverage early to see if anyone else was able to get coverage from your insurance provider.

      The story with financial assistance from Novartis is as follows. They will cover up to $800 of your co-pay through 2011. After that you'll be on your own. There's no strings. If you have a $1,000 co-pay, you'll only pay $200 (they'll directly make payments to your pharmacy so you don't have to worry). If you have a $400 co-pay, then you won't pay anything. Everyone gets up to $800 regardless of income, etc.

      If you do not have insurance and your income is at 500% of poverty level, then you get the drug for free. Still definitely not worth giving up your health insurance for though.

      Hope that helps some. Don't hesitate to holler if you have other questions.
      Well that is exactly what I was looking for and thanks you so much. We have BCBS PPO under the Michigan State retiree program and the company they hired to mangage our medications does that have the drug, so.....I am not sure what I am going to do. I meet with my Neuro Doc. Dec 29th and I am sure we will figure somthing out.

      Did you have a drop in heart rate on the first dose? Have you had any side effects?

      Again Thanks,

      Hugh

      Comment


        #4
        I had absolutely no drop in heart rate. I have had an increase in my liver enzyme levels. Apparently this is not uncommon during the first 6 weeks. My neuro is keeping on top of it with blood work every 2 weeks. Aside from that no side effects at all.

        I really hope that things work out for you. Insurance companies just plain suck sometimes. Keep us posted!

        Comment


          #5
          I have Tricare (military) and I just got my first pack for a $9.00 copay.

          It might just take time for the insurance companies to get it on their list of drugs.

          CrazyCatLady
          MS Does Not Define Me.....My Love of Tea Does! LOL!

          Comment


            #6
            Originally posted by Just a small town girl View Post
            I had absolutely no drop in heart rate. I have had an increase in my liver enzyme levels. Apparently this is not uncommon during the first 6 weeks. My neuro is keeping on top of it with blood work every 2 weeks. Aside from that no side effects at all.

            I really hope that things work out for you. Insurance companies just plain suck sometimes. Keep us posted!

            Thanks again and as far as Insurance companys go they are very difficult to deal with. I now have to file a grevience letter to the company that manages the State retirees meds and then my my wife has to send a complaint letter to the Office of Retirement Services for the State of Mich. so that they can investigate why the Med. company does not have Gelinya available.

            What a hassle

            Comment


              #7
              Originally posted by CrazyCatLady View Post
              I have Tricare (military) and I just got my first pack for a $9.00 copay.

              It might just take time for the insurance companies to get it on their list of drugs.
              $9.00 that's great I am a Disabled Viet Nam Vet and was thinking about going throught the VA but I heard they only give generic drugs and I would have to give up my family Doc. and get one with them.

              Thanks,

              Hugh

              Comment


                #8
                Originally posted by psychedout View Post
                $9.00 that's great I am a Disabled Viet Nam Vet and was thinking about going throught the VA but I heard they only give generic drugs and I would have to give up my family Doc. and get one with them.

                Thanks,

                Hugh
                Check with express scripts (I believe that they work with the VA.) I just found out that my Tricare with Express Scripts, if the neuro writes for a 3 month supply (28 pills in a pack is considered a month) that I have a ......"cough"...... $3.00 copay.

                I know a lot of people say being in the military is a raw deal but this is one time that it is working out well for us. All those birthdays and holidays apart maybe were for something.

                Also check about the generic drug part. I thought that if there was not a generic out the VA gave the brand name is another similar drug wasn't available. Double check me of course. Since MS the mind isnt as sharp as it used to be LOL!

                CrazyCatLady
                MS Does Not Define Me.....My Love of Tea Does! LOL!

                Comment


                  #9
                  Originally posted by CrazyCatLady View Post
                  Check with express scripts (I believe that they work with the VA.) I just found out that my Tricare with Express Scripts, if the neuro writes for a 3 month supply (28 pills in a pack is considered a month) that I have a ......"cough"...... $3.00 copay.

                  I know a lot of people say being in the military is a raw deal but this is one time that it is working out well for us. All those birthdays and holidays apart maybe were for something.

                  Also check about the generic drug part. I thought that if there was not a generic out the VA gave the brand name is another similar drug wasn't available. Double check me of course. Since MS the mind isnt as sharp as it used to be LOL!
                  Thanks again for the info. I am not sure what I am going to do there are only so many hours in the day and I am a self employed Psychotherapist, so I have to work to make a living and am trying to fit in the with blood work, MRI's, and Doctor appointments as I can. The VA sent me the PW to get enrolled with them but as I mentioned I will have to give up the Doctors I am seeing.

                  The VA has a rating system and if your do not fit into one of there catagories that requires help right away I have to wait so I have to weigh things out.

                  Hugh

                  Comment

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