Rilutek cost

[Nighthawk]

@Quinete:

They (drug companies) know what they are doing. They do not do this naively. It's all premeditated.
They know the average ALS patient (PALS) lifetime is very short and they also know that some PALS would cling onto something to extend their lives by 2, 3, 4, 5 or whatever number of months they are told this drug would do so.

They are trying to squeeze the last penny out of the PALS pockets even if this implies to raise the drug cost when the patent is about to expire. That's the sad truth.


NH

 

[Gunnerhappy]

I have been on Rilutek for about 6 months and see no benefit. Saying a med extends someone's life a few months makes no sense to me. How would a study ever prove that in the first place ?!?

 

[Polar]

I've never been a person to over react.. When I was diagnosed I just accepted it.. What else can you do?.. For me buy into a (in my mind unproven) drug that MAY add month to your life while putting known heavy stress on your liver just doesn't make sense.. The thing that gets me going is my insurance company that insists on me filling out update sheets to see if my condition has improved or been cured. I keep telling them.. If there is an improvement/cure you will be reading about it on the front page of almost every newspaper.. Keep smiling folks.. And hope they solve the mystery of this evil affliction and find a way to stop and reverse it during our lifetime.

 

[Sunnyflmom]

I think my parents pay about $500 per month which medicare covers until the donut hole arrives. Now that my mom is getting to be later stage I was recently wondering if my mom should continue with it. While I'm typically a realist, the thought of discussing it with my mom seems like a sleazy idea. If she wants to take a medication that may make her feel like it's helping or extending her life, what kind of a daughter would I be to suggest she and dad save a few bucks by discontinuing. It's really not just the money though, it's also one more thing that dad has on his list to be sure to get a script for every 30 days and then go to the pharmacy to get filled and then remember to administer it to her daily on an empty stomach. It it's all for nothing at this point, I'm thinking it might be something that can be eliminated from the whole regimen of other daily treatments, etc.

 

[jakesan]

Greetings,

I am concerned also about the price of Rilutek, but for an entirely different reason. I am afraid to stop taking it. I was in the drug trial in Houston in 1993, after being diagnosed the first week of June 1991. I can no longer afford the cost, and need some advice. The benefits MAY be minimal, but I have been dancing with Lou for 24 years.

Doug

 

[Will]

Does everyone know that Rilutek is no longer owned by Sanofi? Clovis Pharmaceutical bought the rights to Rilutek last month. I would be interested in the price of the new drug. Has anyone received the Clovis Rilutek? Is it still expensive?

 

[Polar]

Covis Pharma to Acquire US Rights from Sanofi for Nilandron®, Plaquenil®, Rilutek®,... -- ZUG, Switzerland, April 4, 2013 /PRNewswire/ --

 

[JAGODA]

Hello everybody.I am from Poland and since one month my mammy is diagnosed wit ALS.I cant believe that in your country RILUTEK is so expensive.In Poland it cost about 80-90$.Tell me please what do You take except Rilutek.?
Thank You.

 

[quinete]

After several weeks hiatus, I researched the Covis purchase of the Rights to distribute Sanofi's drug Rilutek. And I found an interesting article about this transaction that I wanted to share. Below I have attached the URL (since I can find a way to attach the PDF here) to a recent ALS Newsletter from OH which I found very informative. See page #5 for the article.

http://webcsoh.alsa.org/site/DocServer/June_2013_ALS_Connection.pdf?docID=103121

Comments? It references the price increase by Covis that I described in my first post. I still think there should be more outrage than I see here!

The Dr.

 

[jpsteeler99]

I get it for free but I refuse to take it and line the pockets of the greedy.

 

[Gunnerhappy]

:-(The cost - benefit ratio just doesn't make sense to me.

 

[Nighthawk]

:-(The cost - benefit ratio just doesn't make sense to me.

My exact thoughts.


NH

 

[sadiemae]

I remember reading somewhere that after being on it 18 months, it is no longer as effective. Can't find where I read that. Anyone?
Also read that it is more effective for those with familial, SOD1. We are lucky to still get it from VA, so will continue. I have also recieved it from CALS whose PALS have died, and pass it on to a friend who can not afford it all the time She is SOD1, and convinced it helps her.

 

[Polar]

Nice to see they made $64,000,000.00 in 2012 on a drug that in my mind has not been PROVEN to do anything for ALS..

Aceto to launch generic for ALS treatment | Drug Topics

 

[Tx Daddy's Girl]

@Quinete:

They (drug companies) know what they are doing. They do not do this naively. It's all premeditated.
They know the average ALS patient (PALS) lifetime is very short and they also know that some PALS would cling onto something to extend their lives by 2, 3, 4, 5 or whatever number of months they are told this drug would do so.

They are trying to squeeze the last penny out of the PALS pockets even if this implies to raise the drug cost when the patent is about to expire. That's the sad truth.


NH

This! It's no different than funeral homes charging $20k for a funeral - they prey on the emotionally fragile. My MS meds cost me $1100/mo - I used to take a shot everyday and now I take a pill. When I found out the price I saw an article from the Novartis CEO stating pts will pay more because it's a pill. Hello, you aren't packing needles and syringes and sharps containers each month so you know it's less to manufacture. The drug companies and FDA are criminals.