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    Old 10-12-2010, 12:00 PM   #1
    Lisa_P
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    Is Gilenya available yet?

    I read it was approved, but is it being prescribed? Will Medicare Part D cover it? Anyone know?

     
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    Old 10-12-2010, 06:05 PM   #2
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    Re: Is Gilenya available yet?

    Hi Lisa.
    Yup, its out there. I know of one person on it, and no Medicare Part D will not cover it, in fact almost no insurances are covering it at this time. Its about $5000./ per month!

    In the state of NJ, only one Neuro is testing it and that is because he is invovled in the clinical trials, which are still going on in order to track results on the drug.....he is offering it to his patients at a co-pay of 300$ a month, but to date, only one person has decided to try it.
    My own Neuro isnt a proponent of this drug, and wont prescribe it until he sees at least 2-3 years of test results...they pushed this thru (fast tracked) it so quickly, that no one is sure of what to expect....Time will tell if this is actually a good thing or not.
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    Old 10-12-2010, 07:47 PM   #3
    anxiousme
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    Re: Is Gilenya available yet?

    Just a FYI- My MS specialist at UCSF doesn't recommend it. He is not prescribing it based on it causes liver problems and is not recommended for people with high blood pressure (that's me). His words..."it's a dirty drug" They are currently testing a cleaner version of this drug.

    Let us know if you decide to try it. I'm hoping it benefits some of us.

     
    Old 10-18-2010, 06:41 PM   #4
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    Re: Is Gilenya available yet?

    I started Gilenya today. It is covered by my insurance (and we are also in NJ), all I had to pay was a $10 copay. In NO way has Gilenya been fast tracked in a negative way - Tysabri completely changed the way drugs are approved by the FDA. I had a great experience today: fatigue, dizziness but hanging out for 7 hours in a doctor's office is not so bad when you have little ones!

    It does take a few weeks to get all the testing done: bloodwork, EKG and opthamologist and to get the insurance approval but I am very excited to be injection free after over 800.

    Last edited by rsmom; 10-18-2010 at 06:44 PM.

     
    Old 05-21-2011, 07:44 PM   #5
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    Re: Is Gilenya available yet?

    To: rsmom
    Could I ask what type of insurance you have? I will be starting the Gilenya this week but my insurance does not cover this medicine. Thanks for all your help!

     
    Old 05-21-2011, 08:06 PM   #6
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    Re: Is Gilenya available yet?

    rsmom let us know how it all goes I am very interested but my doctor sees it as like a second line of defence after the older known safer drugs have been exhausted

    Last edited by zadie; 05-21-2011 at 08:06 PM.

     
    Old 05-22-2011, 07:04 AM   #7
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    Re: Is Gilenya available yet?

    I have Horizon BCBS - NJ Direct (husband is a state employee). I have done very well on it - it's been over 6 months now and I can't imagine going to back to injections now.

    My neurologist at the MS Center I go to strongly believes in Gilenya - look what is going on with Cladribine. They keep sending it back for more research, obviously Gilenya met all the FDA's safety and efficacy standards. It's approved as a first line medication for MS - I'm not sure why an insurance company wouldn't cover it.

    krissy15 - if you'd like to speak more in depth about it, feel free.

    < edited >

    Last edited by hb-mod; 05-22-2011 at 07:05 AM. Reason: Please do not post, or request contact information, such as email address, phone or name.

     
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    Old 05-22-2011, 03:22 PM   #8
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    Re: Is Gilenya available yet?

    Hi RSmom, I just wondered- are you going to Centrastate? I was at a meeting Saturday with Dr Katz, who told me he has over 80 people on Gilenya and they are all doing well. We talked about the insurance issues- there are plenty of them, and the efficacy issues, he thinks they are promising too.

    CentraState is a MAJOR MS center here in NJ. I have gone there for some opinions and reviews; however Im on Rebif and dont mind being on it as it is working well for me! There are 3 new orals being released in late 2011 and early 2012....looking forward to hearing more about them!

    Continued success to you!
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    Old 05-22-2011, 06:05 PM   #9
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    Re: Is Gilenya available yet?

    Thanks Rsmom! I looked the insurance up and it looks like it's only in NJ - I'm from Chicago, IL. There has got to be some other way to get help paying for Gilenya. I have Humana and they don't cover this unless you've tried Rebif and can't handle it. I hope that my neurologist can help in some way so I can get assistance. The company is willing to help in paying $800 a month, but that leaves me with $3,200 a month. I've had 2 relapses within a month span so I'm really scared if I don't get some type of treatment soon. Thanks for all your help!

     
    Old 05-22-2011, 06:33 PM   #10
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    Re: Is Gilenya available yet?

    Chrissy, HORIZON blue cross blue shield is specific to NJ: however Blue Cross/ Blue Shield is a national health insurance with coverage in every state, they just call it something different with each insured state. You need to look into a different insuarnce company and see if one will allow you to change. Maybe your employer offers different choices? Unfortunately, once you are dx with MS, they arent obligated to take you...preexisting condition clause.

    Your doctor should be able to write to Humana and try to get you appealed for your copay....if you honestly CANNOT take Rebif, and its proven that you are unable to- he shouldnt have any difficulty. They arent going to approve it "simple because its an oral alternative", but will have to, if your doctor says you have no other recourse! Fight for your rights!!
    Good luck!
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    Old 05-23-2011, 09:35 AM   #11
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    Re: Is Gilenya available yet?

    I have been on Gilenya since the day after it was approved. My neuro was
    involved in the clinical trial with about 30 patients in it and he is a MS specialist. He would have rather I stayed on my Betaseron because I was doing well with no relapses but wasn't very consistent with the shots. He said he would let me try the Gilenya but at the first sign of a relapse it would be back to the Betaseron. He watches me very closely and so far so good. I love not taking shots and luckily my insurance pays all but $56.00 every 3 months.

    Alabama Fan

     
    Old 05-23-2011, 08:31 PM   #12
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    Re: Is Gilenya available yet?

    AlabamaFan - Thank you for your input! I'm waiting to hear from my neurologist hopefully by tomorrow to see if he got anywhere with my insurance company and they could possibly cover Gilenya. Do you mind if I ask what insurance you have? I applied for Medicaid today so maybe they can help, but I need to get some type of medication for this ASAP. I don't want to have another relapse.

     
    Old 05-24-2011, 08:32 AM   #13
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    Re: Is Gilenya available yet?

    Hey Krissy--My husband has BCBS insurance. He is a government employee and the insurance is pretty good for medications. I have to get it mail ordered from a speciality pharmacy.The Gilenya makers also had financial help available to pay my co-pay but I didn't take advantage of it because my copay was so low. They were very helpful in trying to get financial help if I needed it They checked into what my insurance would pay and was willing to help financially. Now that was when it first came out and I don't know what they do now.

    I wish you luck in getting help paying for it. It is way too expensive but my experiences with Gilenya as been very good so far. I love not taking shots and am willing to take my chances with the side effects. My MS was caught very early and I don't have much disability or symptoms most of the time. I mostly have the fatique and brain fog and the occasional tingling in my arm and leg. I don't know how Gilenya would work for someone who has severe symptoms.

    Let me know what you hear from your insurance and doctor.

    Alabama Fan

     
    Old 05-24-2011, 06:02 PM   #14
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    Re: Is Gilenya available yet?

    Hi AlabamaFan!
    I have Humana and I just found out today that my neurologist was not able to get Gilenya approved for me. So I started applying to all these different financial assistance programs today because I heard even public aid will help pay for this! Humana is the only insurance that does not cover this drug. I can't imagine going on the injections, but I need to get better soon. Thanks so much for letting me know what insurance you use. I had BCBS before I got diagnosed and then my company switched to Humana - go figure!
    I'll keep you posted with how everything goes because I will somehow get those Gilenya pills one way or another!

     
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