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Julie  Stachowiak, Ph.D.

Gilenya Costs $48,000 per Year

By October 1, 2010

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I guess I'd call myself quietly disappointed and a little fatigued from this news. A Novartis AG company spokesperson has communicated to Bloomberg that their oral MS treatment, Gilenya (aka fingolimod), was going to be priced at $4,000 per month. (Read the Bloomberg article here: Novartis Gilenya MS Pill to Cost $48,000 a Year).

In my blog from a couple of days ago, Gilenya (aka Fingolimod): When and How Much?, I was not as wildly enthusiastic as I had expected to be at the imminent arrival to market of an oral MS drug. When I heard about the trials 2.5 years ago, I thought that the approval of an oral drug would be a banner day and that people with MS would fling their syringes down en masse and celebrate as one big community.

I'm not feeling it. Of course, I do understand that for some people, this might be the answer - I am thrilled that there is something coming along to fill this gap for those who cannot tolerate the CRABs or Tysabri, for whom they have failed, or who cannot bear to inject themselves. I truly hope Gilenya is your solution.

I also very much understand that it costs money to develop and make these drugs. I do. I want Novartis investors to be happy and I always expected that this pill would cost more than aspirin. However, this statement from the Bloomberg article just struck me as a little - I'm searching for the word here...okay, got it - ballsy: "Gilenya pricing is based on the value it will deliver patients, the scientific innovation it represents and our investment in studies to support the product," Althoff said.

I guess I'll leave it at that. You know, before I was diagnosed with MS, way back in the early 1990s, I was involved in HIV/AIDS prevention and activism, both in the US and internationally. Not being HIV-infected myself, I watched as the rage and frustration poured forth from people who needed drugs that were expensive and unavailable. Some of the prices did seem outrageous and on more than one occasion, I joined in and screamed, "Shame!" Maybe I had more energy back then. I'm not ready to start screaming, but I do feel a deep sadness for our community, especially those of you who were really waiting for this drug with excitement and hope.

Of course, Novartis has mentioned that there will be patient assistance programs available, and maybe they are hugely generous and wanting to get this drug to as many people as possible who could really benefit from it. That would be awesome. We'll see. What do you think? Let us know in the comment section below.

Comments
October 1, 2010 at 1:22 pm
(1) Bryan says:

That’ll be a tough pill to swallow.

February 12, 2011 at 5:11 pm
(2) John says:

Thank God for insurance, my wife starts this pill Monday., Feb 14. Cost $45.00 for 12 week supply.Bill was $11,353.31

March 11, 2011 at 1:33 pm
(3) Bruce Voigt says:

Burn and Cure — You can apply this science to any disease including MS. Once you Understand and use this product properly, you with MS will be “cured” in a very short time for a cost of under $200.00
bruce voigt burn and cure

October 1, 2010 at 2:14 pm
(4) Barbie says:

As one of those MS patients who’s been chomping at the bit for this pill to come out, the pricing announcement just killed my enthusiasm.

Gilenya does indeed surpass the CRABs in efficacy, and it’s needle free – but for $133 per pill, shouldn’t it have me turning cartwheels and doing handsprings within the first week?

I am personally using a CRAB at present. If I have to slog through financial support paperwork (and I would) trying to get a drug for free, I would go after Tysabri. It just might have me turning cartwheels and doing handsprings after the first infusion.

January 28, 2011 at 10:23 pm
(5) Pam says:

Being an MSer that HAS been on Tysabri for the past 15 months…and getting that for Free…based on assistance and my Health Insurance….my Dr. wanted me off of it. The risk of PML is greater after 12 infusions! He wanted me on Gilenya! WITH Novartis assistance and my Health Insurance…I am getting the Gilenya for $0 out of pocket. I start on Monday with my 1st dose and like so many have been waiting for this drug for over 2 years!!! I HATE needles!!! LOL! I was initially on Rebif…got tired of sticking myself 3x a week for 3 yrs…asked my neuro to switch to Tysabri…NOW I am excited to start on Gilenya!!!!! I am hoping I am doing “handsprings” after my first week! I could use some energy!!!

February 11, 2011 at 10:48 pm
(6) Kari says:

I to had been waiting for Gilenya. I started it almost a month ago. I hate needles and was happy to start this medicine. I had been on Avonex probably 8 years or more and am thankful for this medcine. Thank God for insurance. Hope its doing good for you too.

April 29, 2011 at 7:35 pm
(7) ladi says:

if you dont mind me asking what kind of assistancedid novartis provide and what type of insurance do you have that u were able to pay nothing out of pocket, as well how has the gilenya make u feel have u had any side effects from the medication.

October 1, 2010 at 3:49 pm
(8) ArtoriusRex says:

Wouldn’t pricing this new medication below the cost of currently available CRABs and Tsabri attract more users and possibly lead to larger profits than can be gained from their decision to vastly overcharge the few who can afford this new treatment?

Do we really think that our insurance companies are going to pay for this new drug? I doubt it. If the cost was on par with current treatments, I think it’d be more likely.

MS drug pricing across the board vastly outpaces inflation, so it comes as no surprise that Novartis is instituting new forms of rape on a captive audience.

I for one am extremely disappointed.

March 9, 2011 at 8:10 pm
(9) other people says:

amen brother!

October 1, 2010 at 4:03 pm
(10) Dick Thickrod says:

How do they think that people will be able to afford this???

How will a patient be able to convince their insurance company to pay for it if they are already on a CRAB drug (or Tysabri)?

October 1, 2010 at 4:32 pm
(11) Beverly says:

Novartis is trying to make the MS community pay the $420 million fine the got for paying doctors to prescribe their medicine.

October 2, 2010 at 12:22 am
(12) De says:

They can keep it.

October 2, 2010 at 3:42 pm
(13) Jan says:

I, for one, am devastated by the pricing news. For the past two years I’ve been taking this drug as part of a clinical study. I’ve had great results–for the past two years you wouldn’t even know I have MS. And now, they’re going to provide the drug to me for 90 days and then I get to fight it out with my insurance company. Sure, there’s the financial help possibility, but word is that will be available for one year. ONE YEAR. And then what? I know they have to make back their R&D costs, but do they have to make it all back in the first week, or what? Sickening, sickening greed. And I helped these creeps.

March 10, 2011 at 3:33 pm
(14) Ann says:

Right in there with you!!
2 yrs. in, and trying to get
Novartis Pt. Assistance to
assist…..so u are not
in the boat alone.

April 2, 2011 at 12:30 pm
(15) Warren says:

I have MS and could you please email me and tell me about your experience with gilenya
what kind of symptons it helped with
what about the side effects
things like that
thankyou if you could do this
Warren

April 25, 2011 at 7:11 pm
(16) Mary says:

There is a Gilenya users group on FB. It has participants that were study patients like me, and people coming on board sharing their experiences just starting on the drug. You can get a lot of info there from people first hand. I have been on the drug for 4 years in the Freedoms trial. Only small side effects in the beginning other than that it’s worked well for me. I had tried Avonex and Copaxone previously. Longest I was able to tolerate any drug previously was 15mos, so being able to stay on it has been great. I do not miss the needles at all. Best wishes! Mary

October 4, 2010 at 1:26 pm
(17) Robert says:

Im guessing that with other oral meds being developed, this is an attempt to extract maximum profits before competition drives the cost down. If I am forced to wait until that happens, as I cant afford $48K, then my 1st choice for treatment will not be a Novartis product.

October 4, 2010 at 3:31 pm
(18) Barry says:

My wife was diagnosed with MS about 14 years ago, just before I met her and ended up marrying her. She has been on Avonex for the last 12 years and I don’t believe she was on any treatment before that. Anyway, her Avonex shots started out at less than $10k per year from the local pharmacy and are now in the $35k per year range (I’m not sure of the actual cost because we now use the insurance company’s mail order pharmacy – Anthem). We too have been waiting for a pill form of effective therapy for her MS. We have total discust with Novartis and all of the other drug companies for their pricing of the help so many need.

October 4, 2010 at 4:12 pm
(19) Joyce says:

It’s going on five months now since I stopped taking the injectable MS therapy drug, Rebif, as my disability income and supplement for my fourteen year-old daughter just barely put me over the poverty level, causing me to no longer qualify for Medicaid in my state, Illinois. And, the Medicare Part D 25% co-pay for the Rebif $3,028 monthly price tag is out of the question, not to mention the ever hovering Medicare Part D donut hole. The disappointment I feel over the $4,000 monthly price of Gilenya borders on hopelessness. I get the feeling that whatever drug the researchers come up with, it will always be unattainable for most of the people that need it. Isn’t there some other way that the pharmacutical companies can recoup their research expenses than gouging the victims of this painful, unpredictable and debilitating desease?

April 8, 2011 at 11:06 pm
(20) Kenna says:

I am also on Rebif. Call MS Lifelines and they have a PT assistance program. 877-447-3243. My copay w/my MCR part D was huge.. I am on Social Security Disability and I qualified for assistance.. I have NO COPAY for my Rebif! Give it a try…

October 6, 2010 at 9:02 am
(21) Lisa says:

Please friends, don’t lose all hope at the outset. While I agree the cost is an outrage, the financial assistance offered by Novartis might very well be on the up-and-up. I am currently on Tysabri and the cost of that drug is in line with Gilenya. With Biogen’s co-pay assistance program, my cost is $10 per treatment, and I did not need to be destitute financially to qualify. If Novartis wants to remain competetive in the MS marketplace, one would hope they would follow suit, especially with other orals in the development pipeline.

October 6, 2010 at 11:34 am
(22) lilia says:

I hope Lisa’s words prove true. It is, nevertheless, a shameful price tag. When my young daughter was diagnosed, I began researching this disease. The more I delved into it, the more I began to see what I had been hearing for so many years, but refused to believe: that sickness is the burden of many and the profit of some…
As a race, except for a few exceptions, here and there, we, humans, have become a sorry lot.

By the way…I love this blog.

April 22, 2011 at 3:07 pm
(23) Dave says:

µy MS doctor has written a note to to my insurance.Just read the cost of Gilenia… 48,000 dollars. I know now why his office wont call me back. I have a co-worker that is on this medication, different doctor but SAME OFFICE. Had his doctor previously, and had not enough simptems of MS, my fresh out of college doctor means well,just little exsperience dealing with insurance. Sould I change back to original Doc in same office across the lobby

October 6, 2010 at 12:32 pm
(24) Sherri says:

I’ll stick with low dose naltrexone (LDN) and 4-AP. Both are compounded oral medications that won’t put me in bankruptcy. Plus, I’ve been able to remain exacerbation-free while on both of them. I’ve been on LDN for 18 months and 4-AP for 5 months.

October 2, 2011 at 9:14 pm
(25) Giigi says:

I ask my Dr about LDN and he wouldn”t even talk to me about it. He’s really pushin gilenya. I’m on Betaseron and it’s not workin. He says it’s only doing 80% of what it should.

October 6, 2010 at 12:40 pm
(26) Julie says:

Well, my shots cost $3025/month — of which I have (fortunately) only had to pay for one month. Starting last Friday I am now covered on my husband’s insurance and will only have to pay a co-pay of $25/month.

When you are talking over $3000/month for shots vs. $4000/month for orals, I don’t see that much difference in cost!

Just my thoughts….

October 6, 2010 at 12:47 pm
(27) Catherine says:

Unbelievable $$. I can appreciate the costs involved in R&D, therefore, built in their cost to be recouped for drug. Can’t this be done over time? Wasn’t this R&D also sponsored by others?
I’m sure prescription plans will not consider payment for Gilenya. Especially if you’re tolerating a CRAB at a much cheaper price. I’m sure if there you’re NOT tolerating any of the treatments currently available you have a better fight with insurance.
Joyce, please contact MSLifeLines financial assistance. I know for the first year they offer patients free drug with no financial questions asked. You and your daughter deserve to be protected.

October 6, 2010 at 12:53 pm
(28) Diana says:

Why don’t you get Liberated like me and then you don’t have to deal with all the BS drugs or is that CARBS?
LIBERATION FOR ALL!!!!!!!!!!!!

January 17, 2011 at 12:34 pm
(29) Tessa says:

You know, I was just thinking the same dang thing. For us fence sitters this may tip us over the edge. $48000 a year or $10,000 once?! Hmmmm. It’s got me thinking!

January 29, 2011 at 7:27 am
(30) mansoor says:

hi daer
i have ms
my contry is iran
i hope give gilenya in my country
i sad

November 8, 2011 at 3:56 pm
(31) sonja says:

I quit copaxone 5 yrs ago, alternative med ever since no regrets!!!NST treatments via chiro has given me mobility that was lost with no side effects. personal choice for everyone but the cost is crazy. drug co. get the orphan drug clause protecting high prices for 7-8 years . They always come up with something new & more costly. It is a shame.

October 6, 2010 at 12:57 pm
(32) Carole Stofira says:

Sheri, I”m with you…….sticking with LDN (low dose naltexone). I refused steroids & injections since my dx in May ’08 and I’m doing really well, as long as I listen to my body. I alleviated about 10 of the symptoms I had before LDN. As for Big Pharma……please don’t get me started!

October 6, 2010 at 1:42 pm
(33) Micheleann says:

Since being dx in Nov 95, I’ve been on Avonex, Rebif and Copaxone — none which worked for more than a year or so. For the past 10 months I have been on Tysabri, and have enjoyed wonderful results. The cost of this pill form is directly in lne with Tysabri. I’m one of the lucky ones that has outstanding insurance coverage thru my husband’s employer, Was surrprised to find out that going to the hospital once a month was covered 100% but the self-inject meds were not. Drug manufacturers and insurance companies need to adjust their thinking. Why pay 100% for one drug and not the others? More of us would be able to be on mediciation to slow our progession down!

Everyone who is saying that they are “offering financial assistance” needs to remember on simple fact, it is based on your household income — not necessarily medicial need.

October 6, 2010 at 2:11 pm
(34) Mary Beth says:

If we all boycotted the drug the price might be adjusted. Also, if Novat. priced the drug at a reasonable price they wouldn’t have to stick to those of us w/good insurance and need a patients assistance program!

October 6, 2010 at 2:54 pm
(35) wayne fenton says:

absolutely ridiculous , one year for the drugs costs the average person a years wages , if they are still lucky enough to be working , if you cant afford it too bad for you . Sure it costs money to develop just like it costs money to develop anything , why dont the companies quit using this excuse for robbing these patients , most of the money is going to marketing and other causes to promote their product and in the end who benefits certainly not the patient. Patients choice feed your family or take these drugs which are terribly inflate in price and probably have horrible side effects any way, by the way i have secondary progressive ms so there is no drug for me .

I am sure there is massive profits built in to the cost , the people who run these companies are no doubt the first ones to whine and complain about the cost of food ,gas home builders costs etc, and anything that they think is unfair but dont seem to mind gouging the people who cant afford their drugs , it,s pretty pathetic when they have to prey on the vulnerable only to get that extra ten or twenty dollars , lower the prices so people can afford them.

October 6, 2010 at 2:57 pm
(36) Spaz Attack says:

Speaking of the high cost of drugs…did you hear Medicaid will no longer pay for pharmacy starting Jan 1? Or co-pays for those on Medicare? This is huge! How can Medicaid consider pharmacy an optional service?? I got this news off http://www.dshs.wa.gov/mediareleases/2010/pr10088.shtml. If Medicaid isn’t paying for pharmacy there’s going to be so many nutcases like myself going off anti-depressants! Of course we won’t be able to afford MS drugs. Cutting dental and hospice, too!

What do you think of this?

October 6, 2010 at 4:01 pm
(37) Joe says:

haha Novartis are a bunch of morons. Who is going to pay more than avonex to take a pill that might be more effective but doesn’t have a true track record. Who’s going to convince their insurance companies to pay for this? What idiots, they just gave away the market for oral medications for MS, so Merck if you’re listening this market is all yours if you want it, all you have to do is corretly price Cladribine which is better than Gilenya correctly come December.

October 6, 2010 at 4:05 pm
(38) Ticia says:

Disgusted, outraged, disappointed are a few words that can describe my feelings.
I’ve read the above comments and
a. agree that in comparison to Tysabri it is not a giant jump *HOWEVER Tysabri costs so much due to the infusion process. They need to pay the administers and pay for all of the tools, equipment, needles…etc. Now, this is a pill we are talking about!!! How can it cost so much money. (NO I’m not going to pay for their mistakes and fiscal irresponsibility)
b.We should boycott them or at least write to someone in charge. I always believe there is strength in numbers.
c. I agree that this is a rape of the captive audience. How can Novartis have the audacity to demand that price from us?
Finally, it was my plain from the start that I was not going to switch off of my current therapy, Tysabri, until this new drug was tried and true by the masses of this country. Due to this issue I do not see that coming quickly or even in the next 5 years. The “honeymoon period” with its trills, excitement and hope is officially over with Gilenya.

October 6, 2010 at 4:14 pm
(39) Neil says:

Novartis mgmt. can take the pill, suppositorily.

October 6, 2010 at 4:14 pm
(40) Carrie says:

Oh Lord, I try so hard to be upbeat and positive, but there are times when I just want to curl up into a ball and put my head under a blanket. Well, if I could curl up and later uncurl, that is.

Jan, it’s absolutely awful that you participated in clinical trials for this new oral medicine, and yet you are not given the drug FREE for LIFE! Shame on Novartis.

As for the news about all the cuts in Medicaid and Medicare…it makes me sick. The state doesn’t have enough money to help the most needy. And as a final insult, they are cutting hospice, the time in peoples’ lives they need it the most.

October 6, 2010 at 4:57 pm
(41) Carrie says:

I try so hard to stay upbeat and positive, but there are times when I just want to curl into a ball.

Jan, you participated in a clinical trial for this new oral medicine? Novartis should give it to you FREE for as long as you want it!

“Gilenya pricing is based on the value it will deliver patients”? Riiiight, sure it is. More like the value it will deliver to their wallets! Of course they need to make a profit, but let’s be reasonable! Pricing based on “the scientific innovation it represents”? Thank heaven Dr. Jonas Salk didn’t consider pricing scientific innovation when he developed a vaccine that helped conquer polio! Their “investment in studies to support the product”? The studies that people with MS participated in and can now get the drug free for only 3 months?

I am mad as hell and don’t WANT to take it anymore. But I have to stick myself three times a week, plus B-12 injections, eight other RX medicines and enough vitamins and calcium to sink a ship if I want to have any chance of not meeting the ground up close and personal every chance I get. Thank the Lord I have insurance. I would like a chance to try this new oral medication, but I prefer to feed and clothe my family. And sometimes you just have to take a stand.

Okay, breathe deeply. Go carefully, my friends.

October 6, 2010 at 6:02 pm
(42) Susan says:

I was told by a drug rep at a seminar I attended that the money for ms drugs is used for research for all drugs. It is not set aside for MS drug research. So we are paying for everyone not just ourselves. I guess they can get away with it. That’s a big reason why I am not on anything. I don’t qualify for assistance and the deductible and co-pay alone are ridiculous.

October 6, 2010 at 8:18 pm
(43) Pamela says:

Here we go again….drug companies win and we lose.

October 6, 2010 at 8:39 pm
(44) Grandma Mary says:

I appreciate all of your comments. I was diagnosed in 2000 and have been on Avonex with Migraines every shot (387). I am now secondary-progressive and have exshausted the Novantrone treatment of 3 years, done 3 research programs, started Tysabri but was told my body can’t tolerate the drug so I am now without any medication except for prescription drugs for pain and spasticity.

I was put on long term disability from my corporation due to inability to multi-task, and now receive Social Security Disability. Was dropped by Aetna last month because
I was put on SSD. I was told I would have to use Medicare as my primary and pay for another “lesser” insurance policy as secondary. The max for prescriptions is 5K a yr and I have already used 4K this yr.

What do they think we are suppose to do? Grit our teeth
and bear it! What kind of world are we living in?

My best to each of you.

October 6, 2010 at 8:50 pm
(45) kOV says:

Yes it cost alot of money to bring a drug to market. I will give Big Pharma that. BUT to have the little pixie reps running around in their new company cars and buying food for offices AND paying “so called MS experts” to speak about the product to other doctors is OUT OF LINE! These rep people make Over $100,000 per year plus company car. I want my Neuro. to be intelligent enough to know the drug. Not to be influenced by the money, pixies or a dinner. This is one reason our drugs cost so much!

October 6, 2010 at 9:12 pm
(46) cooper says:

Big Pharma preaches, (are you ready for this?)

Patient health FIRST! HA! HA! Hope you got a good laugh from this one!

October 6, 2010 at 11:09 pm
(47) Christine says:

I was recently diagnosed with MS and need to be injected every other night! My husband is the one we decided would be the best to shoot me in the stomach, butt or stomach ont he other side! Can’t say it’s pleasant but the oral pill would be better for all of us with MS! This is something I wouldn’t wish on my worst enemy! I know it’s now my lifelong disease and I know I wont’ let the disease stop the progression of my life, if I have anything to do with it! I did stop work on my second MS of education, I can take some time off and go back, god willing of course! That’s all I can say at this time, need to go to bed, get some sleep!
Goodnight my new friends!

October 6, 2010 at 11:40 pm
(48) Anindita says:

I am an MS sufferer since 2006. I had a relapse last month (Sept.2010). Went thru IV steroids for 3 days and oral for 7 days. My left leg that had gone numb is slightly better and my right eye that had gone blurry is fine. I am Indian staying in India. I am seriously thinking of Ayurvedic or homeopathic or Unani treatment. I have to find a good practitioner first. Allopathy can’t cure or slow down MS. It only supresses the symptoms which gives temporaray relief…. just a patch up job. And I dont even want to talk about the side-effects.
All the best to the MS community.

October 6, 2010 at 11:50 pm
(49) Anindita says:

http://www.nomorems.com

Please check out the above URL. An American lady claims to have defeated MS.
It might be of use to us the MS community.

October 7, 2010 at 4:14 am
(50) Karen says:

Shame……………..for all those…ppl…………if LDN works for u……use it! and also the liberation treatment….i have done both!

October 7, 2010 at 10:21 am
(51) Dona Purdy says:

So who is surprsied? My COPAXONE medicine that I inject every night costs $3,214 A MONTH. That is $38,568 a year. And thanks to the new wonderful health care., our premiums have not only have gone up, co-pay for Copaxone went from $25 a month to $100. There will be a time I won’t be able to afford it. So far, my other MS medicine I take orraly 3 times a day has stayed the same–I don’t know the yearly cost, but at least the co-pay “only” went from $25 to $50.

October 8, 2010 at 6:34 am
(52) Prabir Paul says:

No chance to prevent MS due to high cost & also how long it will be available in India, so what i have to do?

October 8, 2010 at 9:02 am
(53) NOWITMOM says:

I have spent my entire life watching MS slowly chip away my dad’s body & spirit so when I was DX in 1994 I was young and scared beyond belief. The first 7 years there were no DMDs and then there were and I had a lot of hope. I have used all the CRAB drugs and discovered I am medication resistent i.e. they don’t work for me and Tysabri is not an option for me. I have been untreated for 9 years and wheelchair reliant for 8 of those years. As I moved from RR to SP I also became paraplegic. Docs use RR meds for SPers so I’ve been waiting for this drug for years. I didn’t expect for the heavens to open and hears angels sing, I was just hoping for some relief. For the 1st time in 9 years I had some hope. I knew it would be expensive but astronomical? People with disabling conditions already have to pay more than double what average Americans pay for health care. Besides RX & OTC meds IF we can even find insurance it is more, I don’t know about you but I have 5 specialists for MS & its companion conditions, physical therapy, home modifications, auto modifications, a companion dog (about $6000 – $9000), equipment and the list goes on and on. I really wanted to believe they wanted to help us. There will never be a cure while they are making so much money off of us. I can’t afford it & I don’t know any MSers that can. Suffice it to say, Novartis took away hope from a lot of us. Shame, shame on them.

October 9, 2010 at 2:46 pm
(54) 40-something mom says:

I was just diagnosed with MS yesterday… hard day, but like the rest of you, probably knew it was coming for 10 years before I let myself hear it. In any case, testing for Tysabri next week. Doc told me about the new meds I could get for $40k+ per year. I laughed. The thing is, I am lucky enough to be able to afford it if I really wanted to take take (person died, left money, would rather have the live person) but seriously… that’s ludicris. Shouldn’t even be legal. Any insight on what really works is appreciated. I am open to anything except doing nothing. Reading about that liberation treatment scares the crap out of me. Thank you.

March 8, 2011 at 7:01 pm
(55) LDNer says:

You must be overwelmed and very confused..before you get on one of those nasty CRAB meds or tysabri..please check out low dose naltrexone..it’s safer than aspirin and won’t rot your liver…I have been on it for 2 years and all progression stopped immediately. As for the Liberation? I have had that also, and it’s safer and easier than a dental appt…don’t be taken in by the media…I don’t regret either moves one bit. I wish you the very best.

October 11, 2010 at 9:34 am
(56) wendell says:

THATS TO MUCH MONEY, I cant afford it. I have a family thats happy. I will go as far as MS will let me go and to see my family happy makes me happy. I hurt and I been on Rebiff for 3 years now but I just suck it up and drive on, I feel like they have the answer to MS but their is alot of money being made and its all about what company makes the most money with the BS medications

October 13, 2010 at 1:26 pm
(57) Peter says:

A disgrace! Along time sufferer who just can’t afford it.

October 15, 2010 at 8:52 pm
(58) J says:

Shocked and dismayed about the price. I only hope that eventually the orals in the pieline will create enough competition to drive down the price – and hopefully the price of the injectables will also fall since most people, given the choice would prefer a pill.

40-SOMETHING MOM: Try everything! Take vitamin D, calcium, and magnesium and get out in the sun every chance you get – but steer clear of heat and anything that exhausts you. Of course, get on some MS therapy right away.

October 16, 2010 at 12:48 pm
(59) Chris says:

I agree it looks like a hefty price tag but considering that the typical available alternatives (i.e. Avonex) cost anywhere between 30-40k per year wholesale puts it somewhat in perspective. So the real question will be if the insurance companies are willing to fork over the premium and put it on their plans. If not Novartis will have lower the costs or they just won’t sell. Competition from Merck later on should help as well.

Novartis on their side seems to be willing to help with out-of-pocket expenses according to this
blog at http://pharmagossip.blogspot.com/2010/10/more-on-gilenya-pricing-in-us.html.

“Novartis AG will pay out-of-pocket costs for non-Medicare patients who use the company’s multiple sclerosis pill Gilenya when the drug, to be priced at $4,000 a month, goes on sale in the U.S. this week.”

“The Swiss drugmaker will pay as much as $800 monthly in co- payments for Gilenya, the first oral medicine for the condition, the company said in an e-mail. Novartis will also help patients navigate testing and monitoring recommended by U.S. regulators who approved Gilyena on Sept. 22, paying as much as $600 per patient for that expense.”

October 21, 2010 at 10:38 am
(60) Jen says:

I understand that it’s pricy. I think people in general would be shocked at the real price tag for many different drugs that are already available. While this is on the higher end, some brand name prescription products run right there with it. It’ll be the same as any other drug where you have to jump through insurance hoops to get it, but for those who qualify it should be covered. Just like any other brand name drug (eg Avonex), the real cost would floor you. For those with insurance, it should be doable if it’s an appropriate therapy. For those without, hopefully the patient assisstance program will help.

October 21, 2010 at 3:29 pm
(61) Christian says:

My first thought is that Novartis can go F*** itself. Even if they pay the out of pocket expenses, the insurance companies (and gov) will increase premiums (taxes) to cover their share. We pay for it one way or the other.

October 22, 2010 at 9:53 am
(62) Sandra says:

I’m with you on the LDN and angioplasty.. this is bullsh!t once again, big bucks for bigpharma and more false hopes for us. Get proactive, get on LDN!

November 11, 2010 at 7:31 am
(63) Jean says:

My insurance company would most likely say no to this cost since I am currently on a less expensive alternative. Maybe Novartis will wake up and see this in the near future and lower the cost.

December 1, 2010 at 12:35 pm
(64) Susanne says:

I was excited until I heard the cost. I spoke with my insurance carrier and they are reviewing Gilenya and not
expecting a response until February. I just might start liking my needle better.

December 1, 2010 at 2:22 pm
(65) karin hunt says:

Well what can I say? Firstly I thought with all of the worlds ecomomies is such a state I truely didnt think they would try get the money back from those who have a need such as M.S. After taking Rebif, Tysabri and Alemtusemb (which is still an experimental drug) and so after taking this drug for the last 2 years can never take it again as they are a life time amount. So who has any idea of what I should be taking now since this lovely little pill which we were all hyped up about is out of our reach well that is unless we are the rich and famous.

December 1, 2010 at 7:00 pm
(66) Scott says:

Hello people all of the MS drugs are expensive and around the same price, my insurance co is billed over 6700.00 per month for my Ty infusion, copax was costing them about 3500.00 per month. I have news all drugs are expensive while undergoing chemo and radiation last year they gave me an anti nuasea med that cost 285.00 per pill. Want to reduce the prices ? put a limit on the $ amount that people can sue for and get rid of the ambulance chaser lawyers that will cut the cost very quickly.
Does it cost ford 40,000 to make a car heck no but they have the same type of expenses as the drug co do only less $, but because it is big, and gets you around you don’t question thier price!!

December 1, 2010 at 10:26 pm
(67) Sybil says:

I’ve had MS for 16 yrs and have been in the drug study over the past 2 yrs and LOVE LOVE this drug.My side effects are very minimal… and I feel almost normal. I was told that the drug company will be working with my insurance to make sure I will be able to continue. I will know in about 3 months.

December 2, 2010 at 8:09 am
(68) scott says:

If you want to see what is involved with studies and drug trials might I suggest a very good book on the subject, it is titled “Curing MS” by Dr Wiener. the book will give you a very good insight into what is involved along with the time it takes and all of the stduies that do not have the outcome desired along with a lot of interesting details regarding MS. The Dr is a Nuero / research dr with about 30 years of experience in the field. I do not work for a drug co but get a little upset with people complaining about the price of a drug that can totally change thier life. Who would complain about the price of a drug that could cure MS? What would you be willing to pay for that?? Do you complain about the price of Lobster? the fishermen do not have any thing invested in raising it but they charge a pretty good price for just catching it.

April 13, 2011 at 2:54 pm
(69) Ted says:

Totally change their lives less than 50% of the time?? Or totally change their life unitl the MS decides to do something different…

Like so much else about MS ultimately the answer is going to be we do not know. I have been on Avonex/Copazone for the last 12 years and god willing will be able to go off the drugs in about 3-4 more years everything being equal. I looking at the numbers for me as an example:

$48,000 per year * 10% of the 2.5 million MS patients equals 12,000,000,000. That’s $12 Billion. If they get only 5% of the market that’s still $6 billion in the first year FROM ONE DRUG!

Want more of the market? Price something far below your competition. If numbers can be trusted there are about 2.5 million MS patients worldwide. If you were to offer the pill for $1,000 a month (about 30% of the costs for ohter treatment) you would only need to get 500,000 patients to take your drug.

Want to bet how many folks would switch if you cut their expenses by 60%? What about 80%? Given the fact that I have injected myself for so many years, my only hope is that this will make the injectables less expensive.

December 4, 2010 at 12:43 am
(70) JP Longball says:

I know first-hand how much more difficult and expensive it is to manufacture injectable MS drugs (CRABs and Tysabri), because my job is to make Tysabri. We grow mouse cells that have been genetically engineered to make Tysabri. The cells are grown and fed and taken care of constantly for 2 months, and it takes about 8 million cells to make a single dose.

Gilenya is a simple small molecule which is no more difficult to manufacture than aspirin or ibuprofen. Novartis can easily make many batches per day. At these prices, meth labs should start making Gilenya instead!

In 2014 the patent will expire. Hopefully at that point you will be able to get a bottle of generic stuff for $5 at Walmart.

December 23, 2010 at 9:17 am
(71) Bretzke says:

Everyone is aware that two folks died taking this drug during trials?

January 6, 2011 at 3:00 pm
(72) Juliea says:

$48,000 a year? I can’t ask my insurance company to pay that much. My premium is only $600 a month. Even if they did it for a little while they’d obviously have to drop me before long. I’m still working but barely making enough to cover my living expenses and pay my insurance as it is.

This is especially disappointing in that my recent MRIs confirmed a bunch of new lesions, and I was hoping to get something to slow this crap down. :(

January 6, 2011 at 10:37 pm
(73) Cyndie says:

Well,, I got on this sight in hopes to read about others that are now the new MS pill Gilenya, was very shocked to read all the bad comments,,,,,,,,,,,,,,,,,,.So allow me to share, I have been on this pill now for 4 weeks had all three test done to be sure I was able to take this new drug. Well I passed and no more shots of Avonex and I applied for assistance and have received the treatment free for a year.
Then each year you re-apply..just as the other assisted programs. THEY ARE VERY HELPFUL, their program rep’s are very kind and work with you to help with your needs.
SO ALL THE BAD NEWS POSTED IS NOT ALWAYS TRUE CALL YOUR DOCTOR OR CALL THEIR 800 NUMBER AS I DID TO SEE WHAT HELP IS OUT THERE BEFORE MAKING MY DECISSION.

March 14, 2011 at 9:47 am
(74) Judy says:

Hi Cyndie, I just wanted to let you know that I am also on this drug. Actually, I have been on this drug for seven years. I am part of the clinical trial that started seven years ago. I have not had a relapse since taking this drug. I feel this drug is very promising. I was well taken care of on this study by novartis. They are still looking after me, my drug is free to me until I do have coverage, I am happy I chose this study seven years ago….Novartis Rocks,,lol

January 10, 2011 at 10:03 am
(75) Foster says:

Copaxone cost $3,200 a month – and that is a daily injection.

January 14, 2011 at 9:55 pm
(76) JG2Springer says:

Novartis is picking up my copay of 33.33 and it isn’t based on my income. I was in the drug study. I know 48k is a lot but when I spoke. With the assistance Rep. She said they would help would help everyone they could. The drug works I’m proof would pay the 4k for it if I had to

January 16, 2011 at 2:23 pm
(77) Patricia says:

hello I am from Slovakia.My mum has MS…Is Fingolimod good? In Slovakia has to come the medicine in October 2011. :/….Is it too expensive?How many € it cost??

January 21, 2011 at 4:20 pm
(78) cherie says:

Im glad it’s here, I served our country so i have no copays if i go through the mail, who gives a darn what it cost’s, quit wining about what the pharma places get paid for it, you want help or not, better go work for a pharma company .

January 31, 2011 at 2:25 pm
(79) Valencia says:

That is vey cold! My son is 100% VA covered. He has PPMS and has been on Tysabri for a year. He will have deep brain stimulator surgery in March.

Had it not been for the VA, I don’t know what we would do. But I also feel for individuals who do not have this benefit. The economy is not an excuse for people who cannot afford this new drug coming onto the market because the cost of pharmaceuticals has always be astronomical. If my son were not covered, he could NOT get out and work for a pharmaceutical company like you so coldly stated and I am sure that should your MS start to reak havoc on your body, you could not work either nor go out and have fun with your friends and family.

We all give a darn how much the medicine cost! No one should have to sell their first born to take a necessary medication.

Valencia
Bothell, WA

January 21, 2011 at 9:58 pm
(80) J Renner says:

From what I have found with our Copaxone and a $1800+ co-pay, there is no assitance for people that have an income and limited health insurance. Only when you have lost your job or have very little income can you get assistance. So I wonder if this too, will be the same dilemma for some MS patients.

January 22, 2011 at 12:15 pm
(81) Anastasia Parkes says:

I wonder how many of you have heard of Low Dose Naltrexone which has pretty much the same benefits as this hailed new drug Gilenya with even fewer side effects? It is available privately for a fraction of the staggering numbers quoted for the Gilenya. I obtain it in the UK for Ł15 per month in liquid form and my already mild symptoms of primary progressive MS have pretty much halted in the two years since taking it. We cannot get trials approved here, and are campaigning for this so it gets to the NHS (it’s already used in the mainstream in much higher doses to treat opiate addiction) so while we’re all waiting for trials, reasonable prices etc, get on to the website and help yourself to this amazing, little-known, under-estimated drug…

January 24, 2011 at 4:57 pm
(82) Lesia says:

I agree with Jan. I too was on the Gilenya study for 2 years to only find out just recently that I can no longer get the medication at no-charge. Who can afford $4000 per month? I’m waiting on Novartis to see if I can get any assistance. I will be very disappointed to find out that after all the doctor visits and time that I spent to help them with this trial that I don’t qualify for any assistance. I would have thought that the least they could do was to provide all study patients with a couple of years medication at no-charge….wrong.

January 31, 2011 at 12:13 pm
(83) Reality says:

Just an FYI for all those are outraged…
The average cost of producing a drug and getting it approved is about one billion dollars. That’s billion with a “b”.
It takes a decade or more of development to get it there. In the meantime, Novartis (and other companies) is trying to make other drugs for other indications that all cost about the same and take about the same time. Most of those will fail because it is hard to make drugs that work.
When Novartis loses exclusivity to the drug, probably in 2014 or 2015, generic companies will make it very cheap and Novartis will no longer have the ability to recoup the costs of making Gilenya. If they can’t charge a high price for it in those ~5 years, they would never have made it in the first place, and the same is true for basically any other drug.
Be outraged if you want, but that’s how it works.

January 31, 2011 at 2:19 pm
(84) Valencia says:

I think the cost is a crying shame! I will never understand how doctors can adhere to a creed and take money from the needy at the same time. I do believe that if the medical community stood up to the pharmaceutical companies robbery, patients would benefit.
My son has PPMS and has been on Tysabri for a year. His doctor is talking of putting him on Gilenia. I will be happy to see this change take place. Tysabri is a drug I never wanted him to go on, but as his health declined, he needed something to help him level off and Tysabri has done that. My son has had no problems tolerating this drug, but it can only be administered for two years then the patient has to be put on another medication. My son is a Veteran and is 100%, so I cannot bitch about the cost of this new medication because the VA will buy it for my son. But if we were not in the VA loop, I don’t know what would become of us. However, one should not have to serve to be served and cared for properly!

February 16, 2011 at 4:09 pm
(85) LPH says:

Hey, “Reality” you’re full of crap. The obscene profits made by the drug companies contradict your assertions. I love how they, and apparently you too, bitch and moan about how “expensive” it is to develop new drugs. They have to fit that in while yachting in the Mediterranean, eating caviar and drinking champagne. Please, save you misinformation for the media, not the people suffering with MS.

I hope eventually every person and every government will realize that no person or company should be allowed to make such obscene profits off the suffering of sick people. If all drug companies, in every country, were required to be non-profit and off stock exchanges, and if necessary subsidized by the government, the price of all medications would be affordable for everyone. Medical research scientists would still be well paid for their very important work, but no one would be or should be allowed to get rich off of sick people.

February 22, 2011 at 10:03 am
(86) Issy says:

I was excited to learn that finally a pill was introduced for MS instead of that dreaded needle. Now I’m disappointed at the cost. These manufacturers are milking us dry. Bad enough that we have this disease and making it hard for us to achieve treatment is uncalled for. Shame on them. I believe there is a cure already out there for MS. Unfortunately you have these greedy people who prefer not to share the cure with the world. Could you imagine all those people out of work. Those scientists, lab techs, pharmasuetical companies, foundations, ect!

March 2, 2011 at 5:27 pm
(87) Azita says:

Guys, I am a little confused here. I am on Copaxone and like it very much. I keep having the post injection reactin almost once every 2 months but I still like it. Anyways Copaxone is 3400$ for 30 syringes. So 4000 for the pill is not that bad to start. Am I missing something? I have insurance ofcourse so I don’t pay for 100% of my copaxone otherwise I am not sure I could afford it

March 3, 2011 at 1:21 pm
(88) Tumbleweed says:

Just got off the phone with the cust service rep welcoming me to Gilenya. When she got to the part about costs. She heard”crickets” how do you respond to a drug annual costs that exceeds your annual income with insurance?After I regained my composure, she told me they do have a financial assistance program and she would send me the paperwork.
I did ask her to post pone the trial until after I get a decision on how much assistance I would receive.
I have had M.S. for 18 years and I have been on numerous protocols. I am disappointed, pissed off, and fightings mad!
Why take you through the screening process, when you have a drug cost that is so incredibly high.
This situation is going call for prayer and intervention from a higher power, because man has failed in a incredible way.
Be Blessed.

March 4, 2011 at 5:23 pm
(89) Kathleen says:

Cyndie is correct! Please do not bad-mouth Novartis, as they are bending over backwards with their financial assistance program. I will receive Gilenya FREE for the first year, and then I will reapply for additional support, after the first year. God Bless Novartis for developing this drug and for being wise enough to realize that people need financial assistance!

March 8, 2011 at 11:34 am
(90) Shaunda says:

I too am about to start taking Gilenya. I qualified for the Pharmacy Co-Pay Program. My medication for the first year will be free and then I will have to re apply next year. I thank Novartis for offering this program. I have insurance but I would have been paying $70 a month in my copy (double that of Copaxone. I gladly will take the $840 a year savings and no more needle. I am hopeful.

March 10, 2011 at 9:37 pm
(91) Taps says:

Let’s see – I paid 5G’s to Dr. Petrov and gang in Bulgaria for angio (aka Liberation) and I’m feeling benefits from it every day… I feel it, my family SEES it.

I hope the MS drug companies tank huge. I wish all doctor/executives in the health care industy the worst health ever with the most suffering imaginable…

March 11, 2011 at 6:21 pm
(92) WAYNE FENTON says:

It,s disgusting , the price,s they are charging is pretty much the same as robbery all they need is a mask and gun , what are the people who have no insurance to do, also the people who just have no means to pay ,ms doesent exactly give you the oppurtunity to get the high paying jobs .

Unless you are independently wealthy how on earth are you able to afford it , is it fair to the have nots watch the haves get relief , i think not .

I have MS unfortunitely there is no treatment for Secondary Progressive MS but that doesnt make me angry for the people who do have a chance to get relief and no way should they be held ransom because of pure greed on the big pharma,s part .

Even if i was eligable to take the treatrment there is no way i would be able to afford it , thanks to ms i cannot work , have no insurance , and why the hell should the government pay these ridiculous fee,s which would end up being taken from the taxpayers anyway .

As people they deserve the right to spend quality time with their family,s and life in general with out going bankrupt while the drug companys and their salesmen and women live a financially trouble free existence at the expense of the sick and disabled.

March 18, 2011 at 12:18 pm
(93) Brandie says:

The drug is not as outrageous as it seems. Everyone that I know of that has applied for assistance from Novartis has received assistance. Most medical insurance companies are covering the drug, and the copay initially was going to be higher than the injectibles (at $250/3 month supply). The copay recently went down to $160/3 month supply, which is $20 less than I was paying for Betaseron three years ago!

I am in the final phase of a clinical trial for Gilenya, and have been taking it for 2.5 years. I haven’t had a relapse in just over two years. I can’t say the same for when I was taking Betaseron. Check with your insurance coverage, get assistance from Novartis. Do anything you can if you want to take this drug. It has been a miracle for me.

March 22, 2011 at 6:48 pm
(94) lesa says:

it’s awesome they have finally developed an oral therapy for MS. unfortunately there’s the price. when my doctor gave me information on this, i was overwhelmed. why does it cost so much and yes, will my insurance cover this or even part of it? i’m looking forward to trying this pill but will i be able to afford it….um?

March 29, 2011 at 12:14 pm
(95) David says:

I admit I have not read every comment here but there is one thing that I have not seen anybody mention. When people talk about how much it costs to develop a drug they do not mention that people all over the world donate billions of dollars to various MS charities who then in turn give grants to various researchers. These researchers are responsible for many advances that the drug companies are able to take advantage of at no cost. Also, Gilenya (according to my doctor) is not a completely new drug. A variant of it has been in use at much higher doses for treating cancer. So I question that it really did cost Norvatis that much to develop it. I concede that they did a lot of testing but development? I don’t think so. My doc also stated that the cost to devlop a drug has little to do with how much a drug company charges for it, mostly they charge as much as they think they can get away with. So when Novartis uses the excuse that it cost them so much money to develop Gilenya is why it costs so much, I have a very hard time believing them. I have been using Avonex for over 9 years now with pretty good success. I am just tired of getting the flu-like side effects once a week, every week. So I am probably going to give Gilenya a try, although it will be begrudgingly.

April 4, 2011 at 5:10 pm
(96) Lynda says:

I am absolutely outraged at the high cost of all MS medications. I’m lucky to have insurance and I’m able to be on medication, but what about those who can’t afford insurance. The drug companies greed has priced some MS sufferers away from taking effective medication. Shame on them!!!!

April 20, 2011 at 7:05 pm
(97) Bill R. says:

I have now been on Low Dose Naltrexone for over six years, and it has done WAY more for me than ANY of the other drugs. At one time, I was a tireless worker in an effort to get trials of LDN for MS going so more people could have the opportunity to try it. Now, I pray that those trials are NEVER done. I know it is safe (Over 10,000 patients take it daily, and NONE have had any serious side effects.), and approval would jack the price up to an obscene level.
Any neurologist (Or GP for that matter) can prescribe it, and if he/she has done their homework, they KNOW that it is perfectly safe to prescribe it. $30.00 a month, and it literally changed my life for the good….. :-)

May 8, 2011 at 10:02 pm
(98) theresa says:

I have been on Rebif for 3 years now. It does not bother me not give myself a shot, however, this pill does seem like a wonder drug for MS. My concern’s are with the side affects – has anyone taken this pill? Are the side affects any worse than the other avialable MS treatments? I want to make an informed decsion so I am looking for as much feedback as possiable before I make my mind on Gilenya. Thank you for your feedback.

May 9, 2011 at 12:25 pm
(99) sandy says:

i am new to this blog. i have been very active on the bioness blog that julie has for the past 2+ yrs. i have had MS for 20yrs. been on betaseron 15yrs (2737 shots!) i will start gilenya on thur of this week. i am very excited however a little scared too. i welcome anyones experiences w/ gilenys. probs? side effects? has it improved any of your previous MS probs? energy level? i look forward to anyones comments. there are so many complaining about the cost of the drug…i just want to know about everyones first hand experiences w/ the drug. thank you!

May 15, 2011 at 6:28 pm
(100) Lori says:

Just did my required EKG…and am off my Rebif for one month…waiting to start Gilenya. My mail parmacy (through Blue Cross) told me that Novartis is covering the copay until January first. there was a requirement for me to have been on two different treatments…so I was on Copaxone for one year and Rebif for one year…check, check…pills please! I am done poking myself! ;)

June 2, 2011 at 7:40 pm
(101) Polly says:

Let’s see – I made $46,000 last year. My paltry insurance (all I can afford – I work part time so no insurance through my work) has an annual $1000 prescription cap. If I bought nothing else all year (mortgage, food, gas, etc.) I would still be $1000 short. Nope, no Gilenya for me!

June 4, 2011 at 10:31 pm
(102) Sandy says:

polly,
contact “novartis” the maker of gilenya. they have a pt assistance program you may be interested in. i have been on gilenya 24 days…it is a wonderful drug…try to get some!

June 17, 2011 at 3:11 am
(103) Darsh says:

I think it’s important to understand that for every successful drug, 10 drugs in development don’t make it. It costs money – the clinical trials, the drug development process, the science! And so yes the drugs cost a lot of money – but it is not the cost of that one drug – it’s the cost of the 10 other drugs that they were trying to develop which failed at some point. It is up to governments to make sure that these drugs are subsidised so that those who need it can access it.

August 19, 2011 at 8:24 pm
(104) Hazard says:

Up to the government? not if the republicans have any say in it, remember — less government, and privatized health care? and sorry, but R&D money is there to cover all of those other drugs. That money comes from government grants and subsidies from distribution firms who see a big $$$ on these medications. It’s one thing if pharma companies were not raking in huge profits and using their money to innovate, but that’s not the case and saying it is, is a lie. Trying to claim that big pharma is simply covering their costs is naive at best and foolish at worst.

July 19, 2011 at 1:27 pm
(105) Jean says:

I started Gilenya just over a week ago, and so far I have NO COMPLAINTS. (But, time will tell…) Also the patient assistance that I am receiving was all handled by my Neuro’s office. Currently Novartis is covering my co-pay for the medication. And I have been very impressed with the help, assistance, and inofrmation that the Novartis people have given. They even called me at home because I had to hang up while at work-BEFORE the pharmicist was able to take my call. I suppose for the price of $48K per year they not only can but should give excellent patient support. I was on Avonex for over 12 years, and had gotten to the point I could hardly tolerate the shot any more. So, for me the pill is a blesssing. I hope others who choose Gilenya have a positive an experience as I have had thus far.

September 7, 2011 at 6:27 pm
(106) Barb says:

I have been on Avonex for 9yrs. I had to stop because I started to all of a sudden develop a rash on my neck. I am really wanting to try Gilenya but I hope I can tolerate it, can anyone let me know how they are doing on Gilenya, good & bad .

August 19, 2011 at 8:19 pm
(107) Hazard says:

Sadly, this doesn’t surprise me. Drug companies are essentially vultures, they know that their profits come entirely from the sick and dying, and they do everything they can to maximize their profits on them. They don’t care about human health and suffering any more than the oil dealers care that you’re paying $4+ for a gallon of gas. People are numbers to them, and the only difference between most drug companies and any other parasitic corporate entity is what they peddle.

Welcome to America – land of the free, home of the opportunistic corporate plague that’s willing to destroy everyone’s lives to make a dollar.

October 18, 2011 at 5:11 pm
(108) Faye says:

I am now on Gilenya and the cost is a little higher than Rebif. Rebif = aprox. $3,000.00 per month. Gilenya = aprox. $4,000.00 per month.

October 30, 2011 at 11:01 pm
(109) Mayalisa says:

Keep in mind that Novartis only covers up to $800 per month towards your copay if you only haver commercial insurance. You can not have any Government insurance like Medicaid or Medicare even as secondary insurance. Also, your insurance must allow one of the “in-network” pharmacies to fill Gilenya in for you to qualify for this assistance. If you have commercial insurance and they prefer a pharmacy that is not contracted by novartis, you can’t get copay assistance.

For example, if you have Aetna insurance, most likely Aetna will only allow you to fill Gilenya at Aetna specialty pharmacy. However Aetna Pharmacy is “out-of-network” so you probably won’t get copay assistance. Another example is you have Caremark pharmacy insurance. Caremark allows you to get Gilenya filled at Caremark pharmacy. Caremark is considered “in-network” so you probably will get copay assistance from Novartis. I learned this by my personal experiance. You will need to contact Novartis program for details.

November 8, 2011 at 4:10 pm
(110) sonja says:

I stopped copaxone 5 yrs ago with no regrets, alternative medicine has helped me without side effects. NST treatments has given me mobility back without pain!!! My dr suggested Gilenya today at dr apt NO THANK YOU the price is crazy, they operate on fear to get a person to take their RX,S….. good luck to all of you

December 31, 2011 at 1:51 am
(111) Pankaj narang says:

Just wanna knw its availability in d india n its cost in India…

December 31, 2011 at 1:59 am
(112) Pankaj narang says:

Doctor has prescribed gilenya for my wife …hw r the result s…

January 6, 2012 at 9:40 am
(113) Vicki says:

I am looking forword to trying Gilenya, yes it my cost a lot, but after I saw the first bill for rebif 3 years ago the prices doesn’t bother me. I am supposed to live strees free and theye is not reason I should let this stress me. I have tried Rebif and Tysabri. The Rebif only worked for 2 years, then lost it’s effect. Tysabri lasted 11 months and lost effect. I am just hoping this pill will assist me in having a pain free and walking life with the people that mean the most to me. If it is going to cost this much so be it, it is only going to stress me if I get all bent out of shape. The developers will still go about their day as usual. We should be Thanking them for at least discovering the drug. It is not their fault or anyone elses fault for us having MS. At least they are trying to make our lives comfortable living with MS.
Just my thoughts.
I wish the best for everyone,
Vicki

February 7, 2012 at 5:20 pm
(114) Disgusted says:

i cant believe it, I have tried copaxone, it did nothing , na da. and interferon beta one. It just got me sick to my stomach. I am trying to get approved for Gilenya. These pharmacuetical cos r really sticking it to us poor people. WHAT A SHAME. GOD BLESS US ALL!!!!!!

February 28, 2012 at 2:56 pm
(115) Roxanne Ronk says:

I started Copaxone in 1997. Cost – $990 per month. That same drug is now $4,100 per month. I had a $600 increase in one month. At $49,000 per year, no one will convince me the research for this drug has not been paid for dozens of times.

The majority of these drugs cost approximately in the same. A coincidence? A little known secret: they all charge “what the market will bear” (Wall Street Journal). In other words as long as we (and insurers) are willing to pay these sky high costs pharmecutical companies will continue to fleece us.

Know how to have the costs reduced almost over night? Boycott them. I administer a health plan and I can tell you there have seen dozens of drugs drop their costs dramatically as soon as another “look alike” drug came along at a lower cost.

I, too, am grateful for my insurance through my smalll employer and I feel a measure of guilt that I personally am responsibile for our drug costs to spike.

When I have called TEVA Industries to complain, I am told my costs go toward developing new drugs. If 1,000 people are taking Copaxone (and I assuming many more than 1,000 are), TEVA is raking in over 49 MILLION a year on ONE drug.

In my opinion, they are crooks in white shirts.

March 20, 2012 at 11:13 pm
(116) Melani says:

I have been on Gilenya for over 6 months. I used to be on Avonex for 3 yrs. The pill is better but I feel like I’m getting worse. I was told today about LDN and want to try it as I have heard such wonderful things about it.
My Question is:
Should you not take LDN “along” with Gilenya??
Thanks!

April 15, 2012 at 3:42 pm
(117) AZSteve says:

Seriously everyone, do you think this was developed out of the goodness of their hearts? It’s a dollar thing pure and simple.

April 15, 2012 at 3:53 pm
(118) AZSteve says:

I tried LDN for close to 1.5 yrs and quit since it deiden’t seem to do anything. I’ve read that it helps which is why I started it but…

May 15, 2012 at 2:53 am
(119) VERY FORTUNATE says:

I’m excited about this new drug. I started with injections like many others and did not like them, like many others. One to two weeks before my wedding, my Dr told me to stop taking Betaseron due to my levels were not stabilizing. I was so happy to not have to inject anymore. So we discussed this Gilenya drug. I was finally approved through my insurance to start this drug. I knew it would be expensive but OMG! Thank goodness for my insurance. I’m having to pay little each month for this. But I have to wonder about those that don’t have insurance and can’t afford this on their . I’m blessed to be able to still work and have my insurance to pay for this drug, otherwise I could not.

October 23, 2012 at 9:27 am
(120) Rachel says:

My husband was on Rebif for several years and we only paid approximately $50 per month, after the MSLifelines support and insurance. The side effects proved to be too bad on that medication for him and the injections were more than he could handle. A little over a year ago he was entered into the study for Gilenya. He was very happy with the results. Not only was he no longer injecting himself, but his balance improved, headaches and body ache side effects were greatly improved. The study ended and we now go through Novartis for assistance and after our insurance company, we still have to pay $350 per month just for this pill. For those of you with MS, you know that this is not the only medication that he requires. He has to take anti-depressants and anti-anxiety medication (which battles the familiar side-effects of MS medication), along with restless leg syndrome medication (also a side effect), etc. We just can’t afford to continue with these medical costs. He and I both work and won’t qualify for any type of subsidy under the upcoming Obama healthcare plan. We need relief!!!!!

December 31, 2012 at 11:58 am
(121) Very depressing says:

I completely understand the millions in R&D that need to be spent on these new medications but $131.50 per pill per day is a licence to steal if ever there was one. There is something seriously wrong with the world today when companies can become obscenely wealthy off the backs of chronically ill people.
FYI – I’ve been on Copaxone for 6 years (just as expensive) and will stay on it. Novartis can drop dead. Thank you.

February 26, 2013 at 1:11 am
(122) Cartrell says:

Amazing the drugs they come out with only to find out you can’t afford them either.You either have a 33% co pay or patient asst program you have to qualify for ,otherwise .W ell you know the rest thank GOD i found out about extra help in my state (TX) or i’d be ____ out of anything. I”ve tried Avonex,betaseron,and Copaxone and went from 1a wk to everyother day to everyday and the pin cushion has no room left so the info that this med is going to cost $4,000 a monnth is sad news.My Insurance company summary for 2012 spent $49066.80 on my meds for the year.And with Federal cut who knows this year what’s going to happen.Guest we have to wait and see good luck allI’m in the same boat.

March 27, 2013 at 4:31 pm
(123) barb says:

Meds cost alot ,I am on rebif It costs $ 5004.75 for a one month supply12 shots .so they all cost too much.
I want to try this sick of the needles .
My sister is on it and doing great!!

May 2, 2013 at 3:19 am
(124) http://alice3d.org/mediawiki/index.php/Gebruiker:LinwoodDo says:

Why viewers still make use of to read news papers
when in this technological globe everything is existing on net?

May 29, 2013 at 2:05 pm
(125) Robert says:

Gilenya has one side affect that is the hardest to combat, and that is it makes you tired. add that to the exhaustion from MS, and you will be drinking lots of coffee or other stimulants. but no more needles is fine with me. I was diagnosed with MS in 1995, and have tried all the “needle” medicines at different times since then. you can keep your needles. lowered heartbeat, and tiredness i can put up with. i love coffee anyway. and taking a “statin” drug also is supposed to help too. look into them along with other MS drugs. they are supposed to lower the side affects too.

August 5, 2013 at 9:39 pm
(126) Lea says:

I am newly diagnosed, but certainly not new. I am 55 years old,and never knew anything about this disease called MS. However, 4 weeks ago, I started on Gilenya, and have not noticed any differences. Maybe that’s a good thing. The tthing is that so far I have not hadto pay anything for it as it was given to me by my Doctor from their samples. That has about run its course, and while my insurance has agreed to cover it, at nearly $5,000 a month, I can only imagine what my co-pay will be!

And, will I be able to pay for it, or will I have to go off this med?
I’m scared and infuriated! How in this world can ANY company expect people to pay so much money to stay well, or even alive. And it isn’t just MS medicines.

Could someone please knock some decency into these pharm. companies?

January 31, 2014 at 1:28 pm
(127) Glenn says:

Someone needs to pay for those multi-million dollar CEO paychecks and shareholder returns. Don’t get me wrong I understand how the system works, but there is a major problem with the capitalist system when people are marking a fortune on the backs of chronically ill people.

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