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quinete

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Just got back from picking up my Rilutek and the cost has gone up again. Now $2,035 for one month supply of 60 tablets. So in the medicare gap my share of the price is $1,008. Is anyone incredulous about this increase. Last year it also increased from about $900 to $1,129 if I remember correctly. This is a very cheap drug when bought from a chemical supply company for about $54 for a month supply. So Sanofi-Aventis is pulling a very big stunt! They are criminals. To double the price to an annual cost of $24,000 for a drug of questionable efficacy! Even if most people are paying only about $4,500 just to get out of the Medicare Gap. :evil:

I'd love to hear the experience of others in this respect.

The Dr.
 

Nighthawk

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Hi,

I am now in my nearly second year on my ALS diagnosis and have never taken Rilutek. When I was first told about it, it just didn't sound very cost effective to me. I just can't see the benefit of paying $1000 a month for a 3 to 5 month extension of my life.
But, as some PALS say, it's a personal decision for each person.



NH
 

LNKa

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In the web page of European Medicines Agency I have found another medicine with active substance riluzole, named Riluzole Zentiva with date of authorisation 07/05/2012.
 

hn7609

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Wow.....that is a crazy price increase. I get a 3 month supply at a time so I'm not due to get any for another month or so. I would never pay that much for the stuff. I started on it after diagnosis but stopped after a few months because I didn't see any benefit from it. However my wife & ALS support group leader both urged me to get back on the program. I've been on it for a good while now and can see no benefit except that my wife doesn't nag me about it anymore.

If indeed the price has gone up that much I think that I would just stop taking it even though my insurance pays the lions share I hate to see them getting the shaft. They have been pretty good to me so far.
 

Nikki J

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I see the last patent / exclusivity expires in June maybe related to that somehow?
 

pearshoot

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when diagnosed neuro said, if va pays take it, if you have to pay over $200 don't checked on price $1200 no way would i take even if va paid thats highway robbery for questionable benifit
 

AngelaRenee

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My mother's insurance luckily covered the cost of Rilutek, but she said it made her throat swell... allergic maybe?
 

Nighthawk

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I see the last patent / exclusivity expires in June maybe related to that somehow?

That could explain the price increase we are seeing.

But, Gosh, Sanofi-Aventis (the manufacturer of Rilutek) got exclusive patent rights for this drug when it was approved by F.D.A. back in 1995! That is 18 years ago!
All these years, they have filled their pockets at the expense of the defenseless PALS (many of them passed away already), and this drug doesn't really have any long term benefits other than "prolonging life for 3-5 months" at the cost of $1,000 per month!

Greed to its finest!

Good thing it will be manufactured as generic drug which should lower the cost but, too late, Sanofi stockholders made millions out of abusing terminally ill people.


NH
 

jellis86

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Not defending the giant drug companies....we all know they make a lot of money. But why isn't there any of these drugs being manufactured overseas, are we the only country to make them?
The price of Nuedexta is about $600/month. Cough medicine and one more ingredient...about 20 bucks worth of chemicals per month.

However when drugs are manufactured for, (what they and others consider) rare diseases, the cost will naturally be higher. Right or wrong, the less of something that is sold the higher the cost. The awful truth is, ALS would have to be about as common as HIV before costs would come down.

I also know very well that retailers jack up the costs of certain drugs if you pay for them with insurance or Medicare. Many retailers actually have 2 prices, a cash price and an insurance price.
 

Nighthawk

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@Jellis86:

I don't know but, I think that these drug prices jack ups don't happen just because ALS is a..."rare disease".

Just look around and see how Cancer patients, AIDS patients, Diabetes patients, and some other people affected by..."common diseases" have to struggle to purchase their medications.
Prices skyrocketed and, I know it's not that hard to manufacture drugs. I've been there.
I worked...for many, many years in Quality Control, Quality Assurance, Compliance, and R&D Departments of several drug companies and I know the raw materials they purchase and the active ingredients that go to the mixing room are not that expensive.

In fact, I know one of those drug companies (not named here to avoid legal issues), that spent about $47 in average to manufacture a drug that they sold for about $300(!)
That's greed.

About manufacturing drugs overseas, that could be a solution, but the overseas laboratories chosen to manufacture a given drug MUST meet the American G.M.P (Good Manufacturing Practices per C.F.R. 21 that stands for Code of Federal Regulations) as well as G.L.P. (Good Laboratory Practices) and they have to go through thorough inspections by the F.D.A. and, not every facility out there meet those high standards.
Even here, in the U.S.A., there have been some drug manufacturing facilities that have got "Warning Letters" from F.D.A. (also known as "483") because they were not in compliance.

In the past (1990's), drug companies were manufacturing more than 60% of drugs in Puerto Rico (a USA Territory, but not US State) and they were getting tax exemption because they were creating jobs there but....they NEVER passed these savings along to the American costumer here in the States form each drug bottle they sold. You see? That's greed.

So, we are stuck with drugs being manufactured here at higher costs because they paid their employees very well as well as grant them very good benefits.


Regards,



NH
 
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Polar

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I took them for a while... Until my skin and eyes started taking on a yellow hue... Last time I re-filled was Dec. 2008.. I would have more faith in Hemp oil (If I were able to buy the Rick Simpson type formula)
 

peter57

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Wow, 2k a month.

guess we are lucky down under.

full price is app. 600 a month.

as it is listed as a drug for MND i pay 34 a month



cheers

Peter
 
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TerryG

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But, Gosh, Sanofi-Aventis (the manufacturer of Rilutek) got exclusive patent rights for this drug when it was approved by F.D.A. back in 1995! That is 18 years ago!NH

"Evergreening refers to a variety of legal and business strategies by which technology producers with patents over products that are about to expire retain royalties from them, by either taking out new patents (for example over associated delivery systems, or new pharmaceutical mixtures), or by buying out or frustrating competitors, for longer periods of time than would normally be permissible under the law. The evergreening process has caused some controversy in the pharmaceutical industry. In this context, evergreening may be used by manufacturers of a particular drug to restrict or prevent competition from manufacturers of generic equivalents to that drug" Wiki

During which time, drug companies can charge what they like.
 

Polar

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I get it for free... But I still wont take it..
 

quinete

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"Evergreening refers to a variety of legal and business strategies by which technology producers with patents over products that are about to expire retain royalties from them, by either taking out new patents (for example over associated delivery systems, or new pharmaceutical mixtures), or by buying out or frustrating competitors, for longer periods of time than would normally be permissible under the law. The evergreening process has caused some controversy in the pharmaceutical industry. In this context, evergreening may be used by manufacturers of a particular drug to restrict or prevent competition from manufacturers of generic equivalents to that drug" Wiki

During which time, drug companies can charge what they like.
I don't understand how the price increase affects the generic competition or the evergreening in this case. I have seen drug companies extending patents by claiming novel mixtures like for HRT, hormone replacement therapies derived from horse urine. But don't quite understand this move by the drug manufacturer to recover a cost so late in the game with patent expiring in June, 2013?
 
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