Thursday, September 30, 2010

Gilenya to cost $48000 per year!!

Holy CRAP!

What I want to know, oh You Who Run Novartis Yet Do Not Yourself Suffer From MS, is how you people can sleep at night.

Give us a pill which will change our life -- mind you NOT CURE MS so we can be done with it, but merely give us hope and ease our suffering in such a way as to make us Fingolimod junkies for life -- and then try to make us pay $4000 a MONTH for it?? I KNEW when I saw those souped up pill container prototypes in that survey I was asked to take that you would be pulling this. Didn't I say just that?

This really ticks me off. It's the height of greed. I realize the trials were huge and cost tons of money, but production is going to be cheap. There are no syringes to supply, no medication to keep refrigerated. You know as well as I do that you will recover your testing costs within probably the first year on the market. This is just OBSCENE! I can't even begin to put into words how disappointed I am.

Do you think people with MS are just all rich or something? How dare you take advantage of our condition that way. To bring a pill to market -- sure, so you can profit, I get the goal -- but to make it so astronomically priced as to only be a cruel tease for those of us who can't afford it.

It was mentioned in the article that there are assistance programs for those who can't afford it. Well here's a novel idea you can do a clinical trial about... see how much further your drug goes to help people when you price it affordably to start with.


  1. It's a very good thing that I didn't have my computer today nor online access. Otherwise I might have blogged something without thinking first. As it is I am planning to write about Gilenya for HealthCentral next week. At least, I can include this updated information.

    Good thing I'll be able to sleep on it and write with a fresh brain at another time. But holy shitz!!

  2. But wait - they said Copaxone cost 2.8k - 3 something a month, and it doesn't. That's double or triple.

  3. Hi Brian,

    If I try not to be so emotionally involved in this, I can see that the true targets are insurance companies and HMOs but for those of us who are uninsured or under insured it's a distressing thing and the target is ME.

    Maybe if we can all hold out and not get too crippled up in the meantime, some day there will be a generic.

    It's like driving a kid all the way to Disneyland with the promise of a good time and then getting to the gates and telling him if he can't pay his way you're sorry but he's out of luck.

  4. I guess, as usual, time to hunker down into "wait and see" mode. Just a thought...if insurance doesn't cover Gilenya or the cost is way too high, Novartis can't sell the drug. I don't think Novartis is in the business to NOT make money. ;-)

    Stay tuned...

  5. Jeri,

    I tweeted out in shock last night and started a dialogue with @bradatpharma who works at Novartis. He's a good guy whom I met in May.

    He offered the idea of collecting Patient Assistance Program Best Practices on twitter, using hashtag #papbp. Great idea!!

    Please chime in with your thoughts and experiences and help to spread the request for input.


  6. I read a little more on this today, and the person giving the info has no relationship with Novartis, he's just a stock market analyst commenting on stock. He says Novartis could charge as much as $40,000. Well, they could. Doesn't mean they will. I called the Gilena line and the woman there said two things: 1)she couldn't give me the exact price and 2) she suggested Novartis has a very generous assistance program if I couldn't afford it. I started to laugh and asked,"Do you know of anyone who could afford to pay over $100 PER PILL?" and she laughed. I was encouraged after I spoke with her.


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