Gilenya - It's a real process

[HLM71]

Well, so far it's been a three month process and I have yet to see the drug. My nurse navigator is very nice, yet like others are reporting you really have to follow up on them and make repeated calls to get things accomplished. They tell you they are going to coordinate things for you, they tell you they are going to fax forms, make phone calls, etc. Unless you stay on top of them, it may not happen. I've had to make calls that shouldn't be. Calls to my health plan, calls to Novartis, calls to the specialty pharmacy.

I will caution everyone to get the scripts for all the medical tests that need to be done from their neuro, then make all your own appointments. If you don't the nurse navigator will and those appointments may not be at a convenient time or location for you.

Novartis will also tell you that your first dose will not be monitored by your neuro...be sure to question this because my neuro will monitor me and they told me the opposite and wanted to send me off site to some walk in facility where they have no medical records on me.

When the Rx finally does get to the specialty pharmacy for fulfillment, be sure they have on record that you are covered by the Gilenya Support Program. If you haven't enrolled in this, call your nurse navigator away - before the Rx is filled. The nurse navigator is responsible for communicating with your pharmacy to notify them of this.

Not sure if everyone knows this or not...the nurse navigators tell me that the support program will only offer copay assistance through Dec of 2011! They don't seem to know what will happen after that. All of the out of pocket outpatient testing that you will need done prior to taking Gilenya is also to be covered by the program, but only if it is more than $125 and up to $600. Save your EOB's!

I am hoping to see Gilenya arrive this week.

[Just a small town girl]

It sounds like our experiences are really varying depending upon the assigned nurse navigator. My nurse navigator stayed on top of things for me. Whenever I had to call her she knew who I was by voice and first name.

It took the full 8 weeks of free drugs for my insurance company and specialty pharmacy to get their stuff together, but I'm attributing that more to the fact that I'm recently diagnosed and had never been on a DMD before than anything else.

[CrazyCatLady]

I am so sorry you are having so much trouble!

I am one of those that uses my military doc and neuro (hub is in the Navy, or was, he just retired.)

When I decided to start Gilenya my neuro did it all for me. I never even talked to a nurse at Gilenya, my neuro took care of it all. I just had to show up for my appts which I did schedule to make them at a good time for me. As far as the meds, they just showed up at my door from the mail order pharmacy.

I have heard of others having trouble with Gilenya's services. I think they are just so busy because this is a new drug and so many are trying to get on it asap. I think a year from now they will be better, but that doesn't help you now.

[laurasari]

my drs nurse said i had to have all the tests done before she sends in my request. She gave me all the scripts. Just had eye dr check so just had to have a letter sent. I have an appointment with my cardio this month so will give him script for ekg cause cant be more than 6 months old and he did mine Sept. Have a whole list of blood work to be done end of April to start gilenya in may. The nurse says it takes 1 week to get the approval. Another nurse in the office came to help her because she has done it and i asked her she said it took 1 week.
Good luck
laurie f

[HLM71]

Update - My specialty pharmacy called to let me know they are ready to fill the drug order and to get my copay! I told them I was on the Gilenya Support Program and would have a zero copay through 12/2011. I further told them my nurse navigator was to have faxed over the verification of my zero copay assistance already. The specialty pharmacy tells me they have no verification at all from Gilenya and I would need to call them again. So, I tried to call again today only to find out that my nurse navigator took the day off and no one else could help me! Wow, that was not the proper response to give a patient who is waiting on a prescription drug.

It is awesome for all of you who have connected with a high performing and reactive nurse navigator. I think that part is half the battle. The whole idea is for them to "navigate" you through the process and not for you to chase after them to make sure they are doing as expected.

[robobird]

Gilenya and trying to get it

It does seem to be quite a process to get on this medication. I first made the decision with my neuro to take it. My Dr. office sent in my paperwork and made me appts for the bloodwork to make sure I was immune to chicken pox, my EKG and my Optomologist to make sure I had no heart problems or pressure behind my eyes. After that I got a letter from Novartis saying I was in the system and would hear from them soon. About a month later I had not heard anything so I called and was introduced to my nurse navigator who did whatever it is she does, lol.

She sent my stuff along in the system and a week later the pharmacy called to tell me I was approved. I called her back after a few days of waiting and she said she would check on things and when she did, she called me back and said I was approved and the co-pay was $1500 and how would I like to pay for that, lol! I am Medicare only and it's a new drug, go figure. I told her I needed patient assistance and I thought that is what we were doing. She said, "nope, that's a different department". Okey dokey then, she said she would send my stuff over there and I would get paperwork in a few days.

10 days later I got the paperwork which I am filling out.. you know your entire financial life and next of kin to send a bill to if I die...(just kidding). It's pretty detailed though and I have a difficult time concentrating and figuring out all the bills and what my annual medical costs are. Anyway, she said that after it's received the wait is 12-24 hours. The income is reasonable too, its based on 3 x poverty level which I definately qualify for.

Good luck to all working on getting the med. I am sure they will get the system down soon, it's just all pretty new. I for one can't wait to try it.

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[shalimar]

Will be off Tysabri for 6 months on 3/29 and waiting to start Gilenya. So far I have gotten my EKG, eye exam, blood tests and today went to my neuro's office to fill out the 1 page Novartis paperwork, which he will send in today. (tests must be done prior to him sending in this sheet) They tell me that it usually takes no longer than 2 weeks and that no nurse navigator gets involved in this. We shall see.