Wednesday, October 6, 2010

Gilenya, first MS oral drug, updated information

As soon as the FDA gave Gilenya the approval nod, speculation in the MS community has been 1) when will the drug be available for patients, 2) what will it cost, 3) how many patients will switch from their current therapy to try it?  We now know the answer to two of these questions.

Gilenya will be available for sale in the United States this week, according to a recent Bloomberg report.  It takes time for marketing materials to be approved (which is also done by the FDA) so we might not be seeing ads for Gilenya just yet.  But what better marketing is there with a new drug launch than to read a series of articles and blog posts regarding the new oral medication?  It is our word-of-mouth which will prove to be the most effective marketing, I believe, that Novartis can count on right now.

The biggest concern I have heard from other patients is WHAT IS THE COST?  A spokesman from Novartis informed a Bloomberg reporter that the wholesale price has been set at $4000 per month for the daily pill.  My initial response, and those of other bloggers I follow, was one of outrage and astonishment.  Why in the world would Novartis set a price considerably more expensive than the current self-injections?

Read this post in its entirety:

Gilenya (fingolimod), first MS oral drug, will be available in the US with financial help from Novartis


  1. My husband has MS, IMO all the treatments need to come down on their prices!

  2. I was outraged when I read the report about the cost. Positively shameful!

  3. Sadly, drug companies base their charges on the fact that it will not be a drug that will be in widespread use (like say Prozac or Darvocet). As such they are looking to recoup their investment as quickly as possible and as such they charge a huge premium for it.

    I am not defending the practice so don't get me wrong. I think all of the drugs are too expensive, simple as that. It is what it is.

  4. I expect Novartis has set that price to make lots of money.

    Novartis expects Gilenya to generate sales of $1 billion annually. Analysts expect Gilenya to generate peak annual sales of $3.5 billion(SCRIP World Pharmaceutical News)

  5. Ok, first I will admit that I no longer have what i consider to be relapsing-remitting MS. Having said that, I progressed from RRMS to SPMS while on Avonex, and then switched co Copaxone for another three years. I decided last month to stop. Just stop.

    Initially I was interested in an oral drug for MS, but not at this egregious price, and not one that further compromises my immune system. Geez, I already use a catheter. Can you imagine ehat might happen to me if I get a bladder infection? Or the flu? Or even the common cold? Sorry, it makes me shudder to think about it.

    I will not be contributing to the greed of Novartis on this one. I'll just take my chances. To hell with them.

  6. Gosh. I really should spend more time proofreading! Sorry about the typos.

  7. Thank you all for the comments. In health policy circles, there is this ongoing discussion that people (patients, consumers, whatever) aren't aware of the cost involved in health care....they just pay their copay and move on.

    Well, I believe that the response from MS patients on this news is proof that patients DO CARE what things cost. It matters. Perhaps our awareness and attitude need to spread to those for whom health care costs are not so, well, costly.

    The price affects us all whether directly or not. Ok, that's my little health policy rant.

    I do think, however, that I can very clearly see mathematically how the business folks derived their numbers and calculations. It's very clear. I just would have encouraged them to go another direction.

  8. Webster,

    I understand how the business of suppressing the immune system seems rather risky, and it is. However, I must say that I haven't felt quite this good since having my own immune system seriously altered after starting Rituxan on top of methotrexate.

    Somehow my typical September cold was much less severe this year. But that could be due to the high doses of vitamin D I threw at it in the hopes that might help. (Read that protocol somewhere.)

    Then again, there are a small number of patients on Rituxan who have died from PML (just like Tysabri). It's always in the back of my mind. I tell those around me - if I start to act very odd and much more strange than usual (neurologically), get me to the hospital asap.

    If I hadn't already changed medications last fall, the way my MS was going, I'd probably be one of the first ones to try Gilenya. However, since I've been a methotrexate user, maybe I wouldn't be a good candidate. Who knows....


  9. Lisa, my neuro said I'm not a candidate due to the methotrexate for RA. Besides what would I do without "shot night"? Lots less sympathy :(

  10. Nancy,
    I suspected that methotrexate would eliminate some of us from trying this medication. Just like we can't try Tysabri for the same increased infection risks. It's probably the same for users of cytoxan, immuran, etc.
    So in the meantime, you can still try to milk the shot night sympathy. You've got my sympathy. :)