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Frustrated with Gilenya Support System

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    Frustrated with Gilenya Support System

    Maybe I'm the exception but is anyone else having problems with Novartis and Gilenya Support? The form was faxed to them weeks ago when I picked up the starter pack from doctor. Never received a call and I gave them extra time due to Thanksgiving. I finally gave up and called them. They said there was a problem with the form and it needed my signature. They were going to fedex the form to me.

    Two days later - no form. Went ahead and started Gilenya as scheduled. I had a 14 day supply so I thought surely we could get things straightened out in a two week period. Never received the fedex so I called them again. They then claimed there was a problem with the form that the doctor needed to check a certain box. OK, no problem I, fortunately, live close to doctor's office so I offered to go there and sign the form, the doctor would check the box, and refax it. Did that yesterday. Called Gilenya support this afternoon (never did receive a call from them!). NOW they are claiming the form is not dated. Are you kidding me!

    No date on the form means they won't talk to me and they won't initiate anything with my insurance company. I'm not stupid so I have already verified with my insurance company that they will cover Gilenya. The ironic thing is I have GREAT insurance. Novartis will not have to put very much money out on copays for my medication. Pure profit for them, you think they would go out of their way to make sure things go quickly with no problems.

    I certainly did not have this problem with Rebif and MS Lifelines. They were very supportive and made sure things went smoothly. I started Rebif just two weeks after being diagnosed. That included getting a nurse out to my home and everything. I guess I expected the same, or better, from Novartis.

    After talking to Novartis this afternoon it was late but I called my doctor's office and asked them to date the stupid (OK, I used a word other than stupid but I'm being nice here) form and refax it to Novartis. I was so frustrated when I got off the phone that I was ready to stop all meds! I've got one more week's supply of Gilenya.

    Just frustrated and maybe will feel better now that I've vented. Taking a deep breath and remembering tomorrow is another day. Will be on the phone with Novartis' Gilenya Support system first thing!

    On a brighter note I seem to be doing very well on Gilenya. Feel much better than I did on Rebif. But I'll feel even better when I get this straightened out with Novartis and a regular supply of Gilenya is on its way to me.

    #2
    Camcojo, I had a lot of trouble with them also, I finally called my State Representative for help and she got the ball rolling rather quickly. You might want to try the same thing. Good luck.

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      #3
      The only problem I have had is with them not returning phone calls. Other than that, when I contact them, everything has been fine. They sent me an additional 14 day supply of pills when my insurance company was taking longer than expected to get the drugs to me. I also knew the insurance company would pay for Gilenya prior to my stopping copaxone, but the hold up was the speciality mail order pharmacy I am required to use. Anyway, the pills arrived just a day late, so I now have an "extra" free two weeks supply. The nurse said they would actually provide up to two months worth of Gilenya free if necessary while waiting for the insurance to kick in.

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        #4
        Abby your post gave me hope and as it turns out Novartis made arrangements with my doctor to give me two more weeks of medication. I feel a little better about that but still concerned that the Gilenya Support Program won't have their act together anytime soon. The lady at the doctor's office also commented that several of their patients are having similar problems with the support program.

        Bubbadan I hope I don't have to go to the extreme of contacting politicians, but I guess in the end I'll do whatever it takes!

        I am most frustrated that the form was faxed to Novartis on 11/16/10 and they still have not initiated any contact with me. I've had to call them each time to follow up. I will say on a positive note that I haven't been placed on hold for extended periods of time and I speak with a real person each time. But on the negative side you can tell they are reading from a script and it is difficult to get specific questions answered.

        Hopefully in the end this will all be worth it. I still continue to do quite well on Gilenya. I feel NORMAL! I can't get over how much better I feel since stopping the Rebif. My fatigue is almost nonexistent. But it's cold outside and I think that helps with the fatigue issues.

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          #5
          I guess I lucked out. I had no issues with dealing with the nurse navigator at the support group. My own Rx plan (Medco) is only charging me a $40 copay for a 90 day supply. Will not cost Novartis a penny in my case. Next day shipping with Medco once they receive a verbal from me for a refill.

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            #6
            I also have lucked out apparently. My nurse navigator knows my name just from my voice when my call and has yet to fail to return a call within 3 - 4 hours. I'm just about to start my 5th week and haven't had any problems getting my extra starters (my insurance company insists on a pharmacy that charges $14 less... I mean really is my insurance company serious it's a $4000 a month medication and they're worried about $14.. I probably wouldn't care if the pharmacy wasn't dragging its feet).

            Sorry everyone's having such a hard time. Definitely like the idea about calling your state reps and senators. Glad its working for people.

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              #7
              Originally posted by bubbadan View Post
              Camcojo, I had a lot of trouble with them also, I finally called my State Representative for help and she got the ball rolling rather quickly. You might want to try the same thing. Good luck.
              Boy were you lucky I called my State Rep he got voted out of office and his assistant told me they could not help me anyway.

              Hugh

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                #8
                I kind of got annoyed with them today too. I am already on Gilenya, 3 doses now and I called with a question. However because I see a military neuro and he isn't allowed to stock their starter packs in the office he just had me go to Walgreens and get some. No big deal, on the flip side because of this he did not have to do their paperwork and I guess I am not enrolled in their support system. UGH!

                I understand why they don't want to talk to me and they just told me to call my neuro which I did but really, come on? It is called a support system isn't it LOL! Just glad I have a good neuro that is on top of things for me. He is filling out their paperwork so they can talk to me now. UGH! LOL!

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

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