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.


Lisa Emrich said...

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!!

the queen said...

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

TickledPink said...

@ Lisa, yeah, I probably should have slept on it before writing this post but I couldn't control myself.

I'm going to have to spend the rest of my life either begging for help from an assistance program and dealing with the constant stress of not knowing if I will be approved (been there, done that with Copaxone for years) or I can just give up and succumb to whatever ravages MS has in store for me sans medication.

I just really think it's a slap in the face to those of us who risked our lives for Novartis' profit to be told "thanks for your service, now hand over your cash."

I still entertain fantasies of being told I can have it free for life once they cut me loose.

I guess I should be thankful they invited me to continue the study for another year. There are others facing this dilemma within a matter of just a few months.

brian t said...

I expect that the real targets of this pricing are the health insurers and HMOs, and it will be subject to negotiation on volume purchase etc. You'd have to be a billionaire to think that's acceptable.

Since I've been on it for over three years now (the Phase III trial), at the correct dosage, that's a lot of money saved - though I know Novartis spent a lot of money on me in the process. It's not often that a company gets to market a drug that redefines treatment of a major condition, I can already hear them thinking "Oh ¥€$!"

TickledPink said...

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.

Thomas said...

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...

Lisa Emrich said...


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.


the queen said...

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.

Thomas said...

Thanks for the info queen! I've seen many of the stock market analysts quoted and agree it's best to see what the actual company says. The only info from the company I saw was that email referenced in this blog post link.

Novartis AG’s multiple sclerosis pill Gilenya will cost $4,000 a month in the U.S., according to a company spokesman.

Novartis has set a wholesale price at about $48,000 annually, Eric Althoff, a spokesman for the Basel, Switzerland- based company, said by e-mail. The company has programs to help patients with the cost of the drug, he said.

Stay tuned!

Thomas said...

Oops, forgot to add the contact info for the Novartis spokesperson that was quoted.

Eric Althoff
Novartis Global Media Relations
+41 61 324 7999 (direct)
+41 79 593 4202 (mobile)

Eileen said...

Here's some news that will toast y'all. I googled "buy fingolimod" and got several wholesale outlets that sell fingolimod for non-human research. 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.
I am of the opinion that 214 times markup (based on a $3,000 a month cost) is too steep. As much as I hate needles, I suggest we all boycott 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.
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. I say we show them and not buy it.
Yes, I use Copaxone and I have a $777.10 per month co-pay. I did use Betaseron and got drug-induced Lupus and had to change. Copaxone is a rip-off too. At least Betaseron uses the overies of Guniea pigs (Chinese) and that requires cost (and yuk!).
Yes, I'm posting everywhere but y'all do the same and spread the word. Let's show Gilenya that people with MS are not a bunch of gullible idiots!

Vaishali said...

The price of the medicine is definitely a shocker. Think of all those lesser mortals (like me) who don't live in the US and have no assistance programs to help them. My husband's co. pays our medical bills, but I don't think they'll be excited in footing this bill when they get to know the cost.

When I got to know about this medicine I was relieved that i won't have to take any injections. But the cost has really pulled me down. And yes i do agree with tickledpink that Novartis should be a little more sensitive to us MS patients. I know they are not here to do charity but they can still be a bit considerate. Agreed they have spent a lot on research and need to get their money back. But that will happen any way eventually as there of lots of MS patients around the world. What is the point of coming out with something that can't be used by peolpe who really need it. Or probably we can tell our bodies to ask MS to go slow on us - till the time Novartis has managed recovering its research money and decides to reduce the price or some other pharma co. gets another fingolimod!!!