Michigan can't get approved for Gylenya. Any help / contacts.

**vender** · 08-24-2016, 03:41 PM

My neuro and neuro opthamologist want me on Gylenya. They have been trying for two months. I have great insurance or so I thought. They keep denying me. The doctor is doing a "peer to peer". Can I do something? I am on NO meds and just want to get started on something! Can I contact someone in Michigan? Do I need to get an attorney? It's bad enough I have MS now I have to fight just to get medication! This country is unreal!

Also nobody can figure out why the insurance is not approving me. It is a mystery. Not to name names but I have the same doctors as my insurance. So I guess the insurance company does not trust their own doctors? huh?

I can't get assistance as my wife makes (gross wages) too much. But they don't look at the fact that we lost my income. Gylenya is trying to help by calling me and telling me "I have been approved" awesome! Only to call and leave me a message a week later saying "their was a misunderstanding and I wasn't approved". That implies that I somehow had something to do with you calling me and telling me I was approved. THANKS GYLENYA!

This is what I need right now. cant work, MS, No meds, and stress! awesome.

Any contacts would be great. I have nothing else to do.
Thanks for your help.

**vender** · 08-26-2016, 03:05 PM

If I can't get approved for Gilenya can anyone recommend my first MS med. I am sick of feeling like this. I can't believe I am writing this but I see my neuro on the 31st and I guess we can talk yet again about meds. But we have had the talk and she really wanted me on Gilenya and she is "fighting" for me but I am giving up. So whats the cheaper med that would be good. I dont care anymore, I've talked enough.

**Kimba22** · 08-26-2016, 10:13 PM

Hi vendor,

Sorry to hear you are having trouble getting approval for Gilenya. Gilenya is considered a "second line" treatment by some insurance companies (including mine), meaning you have to try and fail other ones first.

Your neuroIogist is the one who will need to fight for you by writing an appeal. Sometimes, that works. Should always try.

In the meantime, call your insurance company to find out which Disease Modifying Drugs they will approve for you so you can start narrowing down your list before your appointment next week. Sometimes, you can find this info online. Google name of your insurance company and criteria for disease modifying MS therapies (or the name of the DMD.) This usually includes the "CRAB" drugs (Copaxone, Rebif, Avonex, Betaseron). I started on Avonex (only Betaseron, Copaxone, and Avonex were available at that time). Not saying it was any better than the other choices I had, but was my preference over the others because it was a once a week injection. But it is an interferon, and with that, alo had some flu like symptoms until my body adjusted to it.

Tysabri might a good choice if that one happens to be available.to you. It has the highest rate of efficacy.

Best of luck, and please keep us updated.

**vender** · 08-31-2016, 03:42 PM

OK so I just got a call that I have been denied twice. I have TWO neuros that want me on this stuff, I think because of the BINO. So Gilenya called and explained they have raised the amount one can make (gross) a year and qualify for the assistance program. Wow I have private insurance but have to have Gilenya pay for my drugs. This is unbelievable! So more waiting.... So I am waiting for more forms to fill out and then some more waiting... Then I can wait some more.. And Americans complain about other countries health systems? Really! Get MS and then talk to me!

**vender** · 09-16-2016, 12:37 AM

I finally gave up on my doctors and others to get approval. I did some digging and found the name and phone number of the actual person denying me approval. She was super nice and incredibly helpful (no sacarms). We spoke for ten minutes. She told me what to have the doctor put in the letter and fax it over. Bam. APPROVED!!! WoooHOOOOO!!

My doctor, nurse, rep... No one could give me any information. Don't give up. You can find what you need and get it done yourself. Maybe I was lucky. I still can't believe it.

**Kimba22** · 09-16-2016, 03:49 AM

Originally Posted by vender

I finally gave up on my doctors and others to get approval. I did some digging and found the name and phone number of the actual person denying me approval. She was super nice and incredibly helpful (no sacarms). We spoke for ten minutes. She told me what to have the doctor put in the letter and fax it over. Bam. APPROVED!!! WoooHOOOOO!!

My doctor, nurse, rep... No one could give me any information. Don't give up. You can find what you need and get it done yourself. Maybe I was lucky. I still can't believe it.

Great news!

Glad to hear you didn't give up and found out what the doctor had to put in his/ her letter so you would be approved!

**vender** · 09-17-2016, 10:38 PM

Okay so this will be my first med / treatment for MS. I am just wondering what to expect? everyone's different. i know. Are my leg pains going to end? Is my BINO going to end? Is it just going to stop anything new? This MS is very new to me and very hard for me to understand. I still dont think I have it even though I have the meds and two neuros telling me (denial). I dont understand the whole relapse thing when I am always having issues. Relapse? Huh. Worsening of symptoms is what I hear. Okay. Instead of pain in my legs I won't be able to walk? that type of thing? And Gilenya will help with this "stuff".
Thanks all
And do you like Gilenya?

**vender** · 09-24-2016, 04:46 PM

Okay so I have PRMS. Is anyone taking Gilenya with PRMS with good results? I understand a lot more now, I spent an hour asking her questions until I understood. I start Monday!! Finally.

I talked to the Doc and she said that she had said and wrote the same things that I was told to have her write. She (my neuro) was not happy with the insurance rep. I think you (the patient) needs to talk personally to the person denying you. They need to hear the patient. That or I just got VERY lucky to get Gilenya as my first med. All I can say is just be VERY nice to them as they have the power to approve or deny you. Crazy. It was hard for me to find out the actual person denying me but was worth it. My "patient rep" from Novartis was NO help at all. Other than lying to me and sending me on the wrong path. Worthless they are. They sure do like to call you a lot.

IT'S UP TO YOU! SORRY BUT YOU HAVE TO DO THIS!

Find that person. Kiss their behind. Do what they say and GET your meds. Just my opinion.

If I can help you in any way please contact me. I feel sorry for the people who have to fail for years before they can even try Gilenya. Total crap. I just hope I'm not expecting too much from Gilenya.

Thread: Michigan can't get approved for Gylenya. Any help / contacts.

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