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    About the Gilenya pricing scam
    eileenkq posted:
    Last week I googled "buy fingolimod" and got several wholesale outlets that sell fingolimod for non-human research (so more applications can be found). At one company it costs $42.00 for 50mg. The Gilenya website says that the pills would be 0.05mg each day. That's about 15mg a month. Simple math shows that we could all get fingolimod for about $14 a month if we were allowed to buy it that way. Based on their projected price of $4,000 a month, that's a 285 times markup!
    It is also my opinion that the $4,000 a month was figured by adding a thousand to the average $3,000 a month of the other therapies. They figure that no needles are worth $1,000 a month. The company line is that there is assistance available. Sure there is — if your family income is less than $30,000. Another company line is that insurance will cover most of the cost. With 40% of Americans not insured, I wonder how many people with MS aren't able to afford any therapy at all. I have a co-pay with my insurance of 25%.
    As much as I hate needles and as good as the product predicts to be, I suggest we all boycott Novartis' Gilenya until they lower their price to at least $1,000 a month. That's still exorbitant but they do have the clinical trials to pay for - an estimated $25 million from what I've heard. There's also the research money they paid out in advance to recoup.
    In case you're wondering, I use Copaxone and I have a $777.10 a month co-pay (25% of their "negotiated"cost). I did use Betaseron and got drug-induced Lupus and had to change. At least Betaseron uses the overies of Guniea pigs (in China) and that requires mfg. cost (and yuk!). I can almost see the large manufacturing cost for Betaseron but it looks like all of the other therapies base their price on Betaseron's high price. I was infuriated with Copaxone 's price (soon to go generic) and really hoped that the new oral medication would be cheaper. When I found out the price I nearly stroked out. A cure that took maybe 12 months of treatment would be worth that, maybe, but the drug companies are really taking advantage of the fact that there is no cure and they've got us over a barrel. The new medication is based on a Chinese herbal remedy.
    Yes, I'm posting everywhere but y'all do the same and spread the word. Let's show Novartis' Gilenya that people with MS are tougher than they think!
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    lifeisshort1225 responded:
    I agree with the totally. I am on Avonex currently. Gilenya is outrageous in price. Most people with MS will not be able to afford it.
    AndiJx responded:
    Thank you God that I live in Cleveland and the Cleveland Clinic will pay for drugs that patients cannot afford. Not all big drug companies are bad, Biogen gave me Avonex and then Tysabri for free. I do agree with you about Novartis, they are Satan. These are the same people that own the company that makes Round Up "026 the weed killer.
    An_204688 responded:
    Have you asked your Dr. to fill out the form to see what it would cost you? It could be less expensive for you than the $777.10 you pay for Copaxone.

    A family friend in CA was able to get it for free. He does have insurance but i'm not sure which one.

    Hope that helps
    KrisWyman190 responded:
    I have Relapsing Remitting MS and was diagnosed about 7-8 yrs ago. My first MRI scared the livin $* # out of me but since then, I'm a pro !!! I began tx with Rebif because I told my Neuro. that there is NO WAY I will use the other tx's due to the fear of needles (big-long) ones so I opted for Rebif, smaller needle, then my Neuro. retired and I was assigned a new Neuro and he changed my tx to Tysabri once monthly but as of Jan. 2011 I've been on it for 21-22 months and the chances of developing PML < BAD stuff are higher so after a 2 month " flush " I will be starting Gilenya... According to my husbands insurance, after I pay my deductible of 3300.00 it will be covered 100% so, how do I come up with that $ ?? I don't even know where / when I'll start it ? I know I have an MRI scheduled for 4/2 but then what ?? Yikes... I just want someone to find a cure for this MS crap !
    opticlady responded:
    Our country is broke! The Gilenya is covered by a subcontractor of the government insurance that I have through my husband. He retired from the Army after 20 years of tolerating tough living conditions and many separations over the years to obtain what we were told would be free medical care for me and of course himself. I pay for the Medicare A&B and then have to pay for tricare. My insurance pays well. I would pay $9.00 for a one month supply of Gilenya but the tricare would pick up $4100.00 . I am a patriot and refuse the medication after finding out about how much our government would pay. Especially after finding out that Gilenya stores in the lymph nodes and has titanium dioxide and magnesium stearate. MS is associated with the ingestion of heavy metals so why would these ingredients be added? I asked the pharmacist at Novartis this question and was told that it helps the fingolomoid to hold together in a pill form. I say its bunk. I will be seeking a natural way of dealing with the disease including refusal of all forms of chemical sweeteners and all foods containing gluten. I agree. Boycott Gilenya. They are giving kickbacks to doctors that prescribe this medication.
    Cacm96 replied to opticlady's response:
    I agree these meds are way overpriced, you would think they would eventually come down in price after some years on the market, if these companies are able to give "financial" help to some people, why not lower the price for all!
    I think I have a unique view of all this, I too have MS and I have been working in a Neurologist office for 23 years,so I see both sides and Opticlady, I can tell you that the Doctors DO NOT get any sort of "kickbacks" for prescribing medication. Drug companies are not even allowed to give any "gifts" such as pens, note pads etc... that we would get in the past, The drug companies do "sponser" a lot of patient education events that have experts in the field give a speach and Q&A sessions, these are no charge to patients! Not to sound like I totally support these companies but it all needs to be brought into prespective. The government also limits how these companies can assist patients that are on government run insurance, which is wrong, obviously if they are on Medicare or Medicaid they may need financial assistance, It is all a mess!!! Although you may not agree with me or not, the most important thing is that you take one of the medications indicated for MS, just because you may not be having "symptoms" right now, doesn't meen your MS is not continuing to cause damage, you won't know until you have an exacerbation and then it may of already caused irreversable damage,
    Dwise1 replied to lifeisshort1225's response:
    Gilenya offers co-pay assistance as well as Patient Asstiance Programs. Google their Go Gilenya Program for the best and accurate info.

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