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HORRIBLE service with Novartis personnel

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    HORRIBLE service with Novartis personnel

    When I started this process I received a phone call from a nurse affiliated with Gilenya Fingolimod, as they present themselves. She began to rattle off a litany of things things that I could expect and told me I didn't need to worry about writing anything down I would receive a packet a packet in the mail. She proceeded to tell me who my Navigator would be and she would be contacting me shortly.

    Well as promised the Navigator contacted me and started telling what to expect with the process as far as my choices of where I could go to have my tests done. Right off the bat it was contradictory to what the nurse had told me. So the nurse called me back and cleared everything up.
    I went to the facility that Novartis pays for the tests to be done. My eye doctor was scheduled for this coming Monday which I had to pay for.

    On Wednesday I called my Navigator to see if my insurance had approved my claim for Gilenya. She told me it had been denied and she was going to call my Neuro's office on Thursday to see if they were going to appeal the denial. I specifically told her she HAD to call BEFORE 12:00 CDT or she would miss them. I called her back Thursday and spoke with another gentleman at 1:30 EDT and he said she was at lunch but she had a note to call when she got back from lunch. I told him to tell her don't bother to call they are gone for the day. He said he would make sure she called Friday before Noon CDT. Well I called today to follow up at 3:30 EDT and she still had not called. The lady I spoke said I could call my doctor I told her knew that but she said she was going to do that and I expected her to do what she said she was going to do.

    I told her may reconsider even taking Gilenya. That took her by surprise. Of course she asked why so I told her what all had taken place from the first day. I asked her what is going to happen if I have a problem with drug and I have to call am I going to get this kind of service? Because if I am I'm not interested. We ended the conversation with telling her to tell my Navigator not to worry about calling my Neuro I'll call them first thing Monday morning.

    I'm sorry for the long post but needless to say I was not a happy camper. I expect people to do what they tell me they are going to do. And follow the instructions I gave them. All she had to do was that and everything would have been fine.

    Has anyone else experienced these kind of issues? I have about had my fill. If you read the whole post thank you.
    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

    It's hard to beat a person that never gives up.
    Babe Ruth

    #2
    Sorry, I've had nothing but good experiences with Novartis and the Gilenya Go Program

    I've had a lot happen with me and I won't go into it, but anytime I have had to deal with a Navigator or Gilenya personnel, I've had a good experience. I've even had them call me back to check up on me and follow up from the last conversation I'd had that they had on record. It wasn't always the same nurse navigator calling back either, but they always knew what was going on.

    I'm sorry you're had a bad time with it. I hope it works out well for you. Don't turn your back on a drug that could be good for you because you got tangled up in some red tape. That's what scissors are for! Keep trying, and I usually follow up with them before they can even get to me. I stay on top of it even when I'm told it'll be taken care of. If that's so, then they shouldn't mind a polite phone call to check up on the status of my issue.

    You had a bad experience with them, but don't judge the whole Gilenya process by that. Take control and don't just wait for them to do it, or follow up after the fact/time when they say the would or already should have. Follow up before, stay a step ahead and keep them on point. Some people don't understand all the hoops we have to jump through to get things taken care of. Even with that said, jump through them, have all your i's dotted and t's crossed before they even get to you. Get names of people you've spoken to, times, and what was discussed.

    You seem to know the importance of time. Make sure they share the same understanding of it's importance. If they said they'd do it at 8:30, call them at 8 saying you're just following up to make sure everything is still on schedule. Kill 'em with kindness and you'll be surprised what you get back. Call 'em again at 8:45 and say you're following up on it again. Have your Neuro or their nurse jump through the hoops too; they know what it can be like from both sides.

    I hate being in the wings, I'd rather be wearing them and flying and watching from up above making sure that things are going correctly and have a fall back plan if I see that things have gone off path a bit. You sound like you're keeping up; sometimes all you can do is keep on, keeping on. Get everyone you can to help, Novartis, Gilenya Go, Navigators (doesn't even have to be yours), your neuro, the specialty pharm that you'll be getting the meds from, your regular PCP, your regular pharm; basically anyone and everyone that is involved in even the slightest way, get them on your team!

    Good luck and I hope it works out for you. There is more than one way to get through red tape and one of them is that's to be sure you're the one that's holding it and in control. It's tough but worth it in the end. Don't pass up on a drug because someone didn't do their job, do yours and that's keep them all on point, before, during, and after your issues have been resolved. Then come here and let us know, you'll always find cheerleaders here! We've been there too. It's frustrating but remember, stress and anxiety are not our friends. It's not worth it. Take control of your MS, and don't let it find ways to try to take control of you. MS is a shady character when it wants to be
    RIP Jenna's Beloved Momma
    Best MS Support System Ever
    7/42 - 12/12

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      #3
      Hi Way,

      I agree with Jenna. Don't give up and just stay on top of everything on your side. It's unfortunate, but none of these issues are new to me.

      I was on Gilenya when it first came out, and remember I had some issues with them (more than once) back then. I would hope, in general, they've gotten much better (otherwise, who would want to recommend or take their medication). There were even a few times I didn't get my medication before I ran out. The nurse at my MS Specialist's office would then get on them, too, and then the office have to send me some of their sample quantities.

      But, they are not the only ones I've had issues with before. And I've even had problems with people in the medical profession following through with things. That's one of the reasons I had to off Gilenya ... turned out my bloodwork wasn't being sent to my MS Specialist, and I ended up with life threatening infection.

      It's not what any of us need, but we have to do what we can to stay on top of these people. Just like the rest of the world, there's always someone who just doesn't do their job. Get names of those you've talked to and times, and if you need to call back, politely tell them Joe Shmoe told you such and such. Each time you speak to them, you there should be a record in their computer system. They'll know if something wasn't followed up on.

      I hope you have better experiences in the future, and keep your neurologist in the loop about any issues you may have in the future.

      Best of luck ,
      Kimba

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

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