Xyrem Price Increase

• By nursefriendly
• Posted January 27, 2009 at 1:03 pm
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No suggestions, but it's amazing they charge so much for xyrem, but China can import candy that breaks down to the active ingredient to xyrem. It's a total rip off because you can't function without it.

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• By duvell
• Posted June 15, 2009 at 3:37 pm
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They did it again! Jazz raised the price of 360 ml (2 bottles) by $250 and now the shipment I just received they raised the price $300.

I was paying $676 a month in March 2007 before Jazz agreed to pay $20M in fines and damages for illegally promoting Xyrem for off label uses.

It would seem they are abusing their government created monopoly to price gouge and pass along the fines to its customers.

By the way, GHB was used for narcolepsy back when it was still available over the counter. Neither Jazz or predecessor Orphan developed GHB or discovered its implications for narcolepsy. It was the FDA that approached Orphan, after GHB was made a schedule 1 drug but with the provision to be schedule III if brought to market by a pharmaceutical company. The FDA provided financial incentives to Orphan to encourage them to take the drug through the trials and approval process.

I suggest you write to the Justice Department who investigated Jazz for promoting Xyrem for off label uses illegally. I also suggest you write to your senetors and representatives asking them to end the monopoly given to Jazz and allow other manufacturers to sell a generic version. Jazz does hold some pattents on Xyrem but they are all related to adding preservatives to increase shelf life.

Sorry to get off on a rant but this really does wonders for my narcolepsy and I am at the point I can no longer afford it.

I am seriously tempted to hire a chemist or chemical engineer to find a reasonable synthesis process that I could make myself. It probably would not cost any more than what I pay Jazz and I think I would take my chances with a jury should I ever have to explain my illegal activity.

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• By Burg400
• Posted June 15, 2009 at 4:07 pm
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Duvell,

Thanks for the background on the development and marketing of GHB.

I am going to take your advice and start investigating. I'll keep you informed on my progress.

Because of the price increase my wife has reverted back to provigal.

Burg400

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• By zenfulliving
• Posted August 19, 2009 at 1:45 pm
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Does anyone have health insurance that covers Xyrem. My health insurance negotiated a price and now I'm paying a co-pay of $50.00 each month, but the cost for the drug is $1,900 per month.

I'm currently on a medication break from Xyrem due to the side effects, but will begin treatment at the end of September.

I hope my insurance company will continue to pay for Xyrem after such a large increase.

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• By Macushla
• Posted October 26, 2009 at 12:56 pm
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My son just ordered a refill. There has been another price increase October 1st. Jazz called to say they were holding shipment until they got confirmation that we would pay the increase. It's like dealing with a drug dealer. The price has gone from $1781.00 to $2485.00. We do have health insurance and after a $5000 yearly deductible we 'only' have to pay $487 per month. He will come off our health insurance in 2 years when he turns 23. He is obviously uninsurable and it is doubtful that will be able to hold down a full time job with benefits.

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• By duvell
• Posted November 15, 2009 at 11:08 am
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I did not notice this until my November shipment but it was likely there for October as well!

We are being held hostage by the greed of Jazz! They have raised the price I and my insurance company 92% in 10 months!

I urge everybody to write to Narcolepsy Network and urge them to take up this cause. They seem to be the largest and most credible advocacy group for narcolepsy.

I am outraged and frustrated because I can find no avenues of help to fix this problem. If any of you share this outrage please become vocal about it and write to your representatives, to the FDA, and to narcolepsy advocacy groups. Maybe it is the FTA that should be contacted for the blatant abuse of the monopoly that was handed to them!

Sorry for the rant but please help and become vocal!

duvell

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• By 32narc
• Posted November 16, 2009 at 5:54 pm
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I RECENTLY STARTED XYREM AND MY HEALTH INSURANCE COVERS IT COMPLETEY. I AM CURIOUS TO KNOW SOME COMMON SIDE EFFECTS OF THIS IN OTHERS.

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