Is Gilenya worth $150 co-pay per month?

[Sarahsmom46]

I just got the letter from Novartis about my share-of-cost for the oral drug Gilenya. I was astonished to see that they expect me to pay $150 per month.  This amount is probably a result of what they negotiated with the insurance company, but I have good insurance and can't believe this is the best they can come up with.  My neuro has a good reason for putting me on this drug versus going on the interferons and I'd hate to think I can't go on this because of cost.

Money is very tight right now.  I have to move to a more expensive apartment because of accessibility issues and that is taking up a chunk of my paycheck.  There's no way I can afford this drug.  I will talk to the drug rep tomorrow to see what can be done to bring the cost down.  If not, then I will have to go back to my neuro and look at other options.  

I can really use your guys' feedback.  Who else is on the drug and are you paying a high co-pay too?  How should I handle this?

Julie

[Lulu54]

Oh my, that is a staggering sum of money.  A few people here, including Quix, have had success with NORD in getting help with the drug cost.  I hope they can come up with some aid for you and your husband - that dollar amount is obscene.

Don't give up on finding help with this financial load - there has to be something out there for you.
best, Lulu

[MSx2]

I was amazed to see your post, as well as those of others. $150/month sounds like a dream to us at this point. My husband is on Medicare and just got approved by his MedicareComplete provider to take Gilenya...provided we pay the co-pay, which they said would be (drum roll...) $1450 a month. Initially, we've been told that Novartis cannot provide assistance to Medicare recipients, and the Medicare plan has no cap on out of pocket expenses, so we are contemplating about 18k/year just for this drug. I will try to follow the suggestions of some of the people in this stream. Suggestions/information welcome.
BTW, our son also has MS. He's on Campath.

[Sparkysarah]

In answer to your question...cholesterol going up may just be one of those things (peri-menopausal, genetic etc) However several people on my trial have also experienced raised cholesterol which is why it is easy to draw conclusions...but they may be wrong!!! I am keeping an open mind and am not unduly worried and will be intereted to see what happens to my blood test results done this week as Ihave worked hard to try and be healthy. however I understand that cholesterol is only part diet/fitness related so will wait and see.

Anyhow don't forget that the drug I am on is different to Gilenya although I understand only marginally. Another friend on the extension trial felt tired for first two weeks of taking it but is fine now. Let us know how you get on. it is boring waiting for the 6 hours and i shall be going through this next month for 3 weeks in a row.

Much love

Sarah xxx

[johhanna]

Has anyone received a bill yet from their neurologist 1st dose visit?  I did the 6 hour stay and just received a bill for $1200.00 because my deductible had not been met!!!!  And I was excited the drug will be free but this was not discussed :(

[Sarahsmom46]

I am moving this weekend, G-d willing it goes smoothly.  

I am glad it will be a 3-day weekend as there is no way I can do all this and try to go back to work too.  I wish Al were here to help out, but he isn't and I'm sure I'll be fine.  

It will be a good place so excited to finally not have to depend on anyone to help me with stuff.  Adam will be relieved too - takes a big burden off his shoulders.  We are both hopeful that the new medication will keep things in check too.

If you get a chance, give me a quick call and let me know how you are doing. Love to you and the kids.  

Julie

[opie74]

I did not notice any breathing problems.  I had a little sluggish feeling for about 2 weeks; but I am sure that is from the slow heart rate.  At the two month mark, everything is back to normal.  I am in the danger zone postpartum and still nothing going on.  

Take something to read with you for the first dose.  6 hours is a long time to sit and sit and sit!  Let me know how it goes.

[michelleric]

Hi Julie,

Lots going on with you.  Haven't checked the forum lately, and now to see an upcoming move for you, and new meds. lots happening with change in your life right now. When is the move scheduled? Going to be tough but sounds like well worth it, "if" another relapse ever happens. Hopefully you have had your share, so you deserve a break!

Thinking of you and sending strength on all the upcoming changes for you...

(((Hugs))),
Michelle

[Sarahsmom46]

Thanks Kathy.  How the heck are you doing? It is awesone to see you drop in.

I've thought about quite often and wondered how the avonex is working for you.  I honestly thought that my doctor was going to suggest avonex, but he surprised me with the gilenya.  Is your walking/balance/vertigo better?  It been more than a year on the avonex right?

Julie

[Fluffysmom]

Julie,

Best of luck with the Gilenya, and may your move go smoothly.

Hugs,

Kathy

[Sarahsmom46]

2011 is going to be a great year for sure.  

Sara - I will take my first dose on March 4th.  I was wondering if you have noticed any brething issues since you started it (if you are on the drug and I bet you probably are)? The breathing issues is the only thing I am a bit cautious about.  The cholesterol is a surprise.  DId they hvae an explanation about why your cholesterol has gone up that could be related to the drug? I have my fingers crossed too that all will go perfectly and without any hitches.  

Lu - I hope that others will not be thrown off by a letter they may receive.  It was confusing to me and I mentioned that to the nurse navigator.  Sounds like they get a lot of calls like the one they got from me.

So, this is hoping that my move and new med will put me in a good place and NOT in another relapse for a long, long time.  

Have a good night you all.

Julie

[Lulu54]

Wonderful news.  I hope this message reaches everyone who takes the initial information at face value and feels therapy is out of their financial reach.  It often takes more than one phone call to connect with the right person who can unlock the secrets to service.

Good luck with hyour move and this change of drugs - 2011  is going to be a great year for you.

hugs, L

[Sparkysarah]

That is great news! As you know I am on a drug trial for a similar drug ACT 128800 in UK and at present doing well and I am sure I am on the drug escept my cholesterol has risen. If not the placebo effect truly works. I am feeling better than I have done for a year so fingers crossed as next month I go into the extended 2 year trial.

As a matter of fact I read somewhere that in Uk if Gilenya is licensed by NICE it will be a second line treatment so not so readily accesible.

Good luck and let us know how you get on

love Sarah x

[Sarahsmom46]

Thanks you guys.  

Great news.  I called the number this morning and found out exactly what you said Ann, there is no copay - Its Free!  I was hopeful they would bringthe copay down ideally to below $50, but then the nurse told me that I was approved for the copay assistnace and that it would be FREE.  

They said this free copay arrangement is good till December 2011.  I am relieved.

Oh and the $125 or 150 I was seeing in the letter was for any medical expenses I had encurred getting the medical screenings, i.e., eye exam, blood tests, ekg, etc. If it goes over $125 then patients will be reimbursed that amount.  

So, looks we are a go.  

Thanks for all your help you guys.

Julie

[opie74]

I have the co-pay assistance.  It makes mine free.  My normal co-pay would be 10%.  That is less thanthe $800/month that Novartis pays. They pick it ip.  I called the number above and spoke to them..  I reminded then, nicely, that if my insurance was going to pay 3k/month to someone, they should earn my business.  It worked.  

[jensequitur]

Yay, Google!

I found this (shhhh...) on another website

>  The Gilenya Assistance number is- 877-408-4974.....

>  One you and your neuro have decided that Gilenya (fingolimod) is 'right for you', your doctor fills out a service request form (available for download on Gilenya's website) and they fax it in. This form serves as a perscription essentialy, but includes all of your insurance information, which allows Gilenya to contact your insurance carriers to determine the cost they will cover. Just like it has been reported in other posts.... the Gilenya assistance will pay for up to $800 a month for the medication (for those that qualify.... which should be most people). I know I was very anxious to find out what my insurance plan was going to charge, because I had fears that even with the $800 mth assistance I would still be left with a hefty copayment. Gilenya has been categorized as a "first line" therapy, so I think that this may help to keep the initial cost to patient's down a bit. Again best of luck to anyone else out there looking to start this medication...... I think that it has kept me stable and productive the last 2 yrs and wanted to share my positive experience with the financial aspect of this newly approved medication.

If you need more, there's more info on this thread:

http://www.msworld.org/forum/showthread.php?t=106699

[Lulu54]

Even though it is more expensiv e, I am surprised that with your good insurance your copay would fluctuate like this.  I don't know who else is on Gilenya here.......  try Bob's suggestion with the company.   -L

[HVAC]

Gileyna is way more expensive than the DMDs.

Alex

[COBOB]

I'd take another run at Norvartis and see what you can negotiate.  I know they threw a price out, but you may have to tell them that may be forced to go with "x" because of the cost issue.  You might be surprised what they will do to displace a competitor in the marketplace.

Bob