Has anyone been turned down for Gilenya?

[arjay]

I was diagnosed with MS a few years ago and was on Avonex for a couple of years. However, I never quit having side effects (flu-like symptoms for about 24 hours after each injection). Moreover, I wasn't getting any results. My MRI's were repeated a few months ago and showed a good bit of disease progression, and my doctor said the changes were of a type that indicated they would most likely get worse.

So in December he recommended that I try Gilenya, and I have been trying to get my insurance to approve it since then. I just got a letter yesterday denying approval for the medication.

Has anyone else run into this? I guess I'm going to appeal, but I don't know what I should say. I've been without treatment for months now and based on the recent MRI's and what my neurologist said about the findings, I am worried.

I've got (I thought) a pretty good policy that is supposed to cover most things. I don't know why they've shot me down on this.

Any insights or experiences would be much appreciated!

[jazzymom43]

I was also denyed by my insurance. I am second-guessing myself about where to go from here. I guess I'll give copaxone a try. Good luck!

[Just a small town girl]

I just got a letter yesterday denying approval for the medication.

Has anyone else run into this? I guess I'm going to appeal, but I don't know what I should say.

I've got (I thought) a pretty good policy that is supposed to cover most things. I don't know why they've shot me down on this.

I had my insurance company initially shoot down my prescription because Novartis wanted a pharmacy that charged $14 a month more for the drug. It was absurd. The insurance company and I hashed things out and I've been on for 5 months now without a problem.

I'd try calling your insurance company to see why they turned you down. Generally speaking they'll give you some kind of a reason and you can see if they'll work it out from there or what you need to do.

Best of luck and keep us posted on how things go.

[Stellas Mom]

Arjay this has happened to several but when their doctor appealed it was approved. Don't give up, and good luck

[arjay]

Thanks, everyone! We're working on an appeal. I'll let you know how it goes.

[Myoak]

Gilenya cost

Can anyone tell me how much Gilenya costs w/o any insurance consideration?
Also, how much does an insurance company have to pay for Gilenya?

Thank you for any clarity you may provide!

[Just a small town girl]

My specialty pharmacy charges $3,823.50 for a 28 day supply.

Some insurance companies won't cover it. Others will cover it at varying levels.

My PPO looks at it as a Tier IV drug so my co-pay is 25% capped at $2,500 a year. That effectively means that any MS drug will cost me $2,500 a year.

If you've got insurance you can call and ask them to run a mock-up through to see how it'll come about. Be persistent though. I had to go through about 5 people before I finally got someone who figured it all out.

[Just a small town girl]

Can anyone tell me how much Gilenya costs w/o any insurance consideration?
Also, how much does an insurance company have to pay for Gilenya?

Thank you for any clarity you may provide!

Also forgot to mention that if you don't have insurance and make less than 500% of the poverty level, Novartis will give you the drug for free.

[Bandito]

My insurance company (Aetna) turned me down several times. Each time we appealed they would say that they needed some more testing done before they would approve. This has been going on since October of last year. Finally, last week, they approved Gilenya. I'm currently on patient assistance until March of next year but, even when I have to start paying, it will only cost me $150 for a 90 day supply.

[arjay]

My insurance company (Aetna) turned me down several times. Each time we appealed they would say that they needed some more testing done before they would approve.

I'm REALLY upset with my insurance company. As I mentioned above, I was on Avonex for two years and was not getting any results. My MRIs showed significant progression, and the side effects never let up either.

My insurance company first contended that Gilenya was "Not medically necessary." That's directly contrary to my physician's opinion.

So we filed an appeal and supported it with all sorts of documentation and an additional physician opinion. They turned me down again, this time insisting that I first undergo a course of therapy with Copaxone and prove that it doesn't work either.

This is ridiculous. In the meantime, of course, I'm getting no treatment, and my doctor says that based on the nature of my most recent MRI findings I am almost surely sustaining significant silent damage.

[Tom Lewandowski]

I think it's pretty standard that most insurance companies are going to deny coverage for Gilenya simply because of its cost. I was just turned down and have an appeal scheduled, which my doctor is also attending.

I was told Gilenya will cost $48,000.00/year. My Rebif is under $20,000.00/year. Insurance companies are very good at 'doing the math.' There are a variety of interferons available, but I (and my doctor) don't think switching from one interferon to another will do much to lesson my side effects. (Maybe psychologically, it will though. lol )

I've had MS for 28 years and have only bothered with meds for the past two years. I could have soaked my insurance company a while back, but didn't ... mostly because I was afraid of the side effects of taking these drugs. But now that I want the meds, I have to fight with my insurance company for coverage. (Guess I should be thankful I don't have cancer!)

[Myoak]

Thank you Just a small town girl for taking the time to post a clear answer and excellent advice to my Gilenya question. I should have responded before now but just now realized my omission. Duh. Thanks Again!

Tom, I hope your insurance comes through, maybe you should mention that you could choose Tysabri, then they would face both the drug and the infusion costs!

[laura g]

Try looking under medications on the message boards. There is a list of places you may go to try and get help with paying for it. Nord has helped me in the past. Just a thought. Good luck !

[amandarianne28]

IHS and Gilenya

I go to an IHS hospital that carries all the MS meds on formulary EXCEPT for Gilenya. However, I have PPMS and was happily accepted on Tysabri 12 months ago and am going for my Stratify II study tests tomorrow and depending on the result of that I will be taken off the Ty in the next few months or by next May and put on Gilenya by means of medically necessary.

The progession of my MS and what the MRI's have shown for me is I have gained over 20 cerebral/spinal lesions in 7 years. 5 of those years I was on Betaseron and for 6 months I was on Copaxone. This last year on Tysabri I have gained only 2, proving to the "Powers that be" at the Hospital that I need some form of DMD to slow the progression significantly as Im only 29.

While Im sure that its very different showing medical necessity to Insurance than a Hospital Board, the relevant facts remain the same. Have your Neuro show medical relevance to the meds you are being told to try vs what you have tried vs Gilenya. I had no help off the Beta/Copax I used and significant injection site issues so all injectables are ruled out. The Ty is IV like the steroids so thats an acceptable exception. If it is dangerous to use for me and the others were ruled out Gilenya becomes my option. If you are able to draw it all together that way maybe it will help hasten their decisions.

I really wish you all the best and will look for updates.

[arjay]

My appeal has been turned down twice, despite my own doctor weighing in heavily, and a second opinion submitted. It's most disappointing. Why am I paying these people a gigantic monthly premium when they won't cover what I need?