Xyrem Price Increase

My wife has narcolepsy and has been on Xyrem for about 18 months. When we reordered prescription last week Express-Scripts advised there has been a 30% price increase. There was no explanation. The refilled prescription was going to cost $483 and the medication last 22 - 25 days. I think we are being ripped off and I intend to write Jazz Pharmaceuticals asking for an explanation of the increase. Failing a satisfactory answer will write our Senator and hope for a congressional investigation.

Any suggestions?

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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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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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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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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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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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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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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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This drug is doing wonders for my wife. So far, our insurance company has covered it. Is it possible to pick up a cheap version of this drug in a foreign country?

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I very much doubt it as it a heavily regulated drug. Homeland Security would surely have someone thrown in prison for a good long time for bringing it into the country.

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Today my month's supply of Xyrem arrived, and the price charged to my insurance company has increased once again to over $1900 per month. We must do something about this before our insurance companies decide to take action by not allowing Xyrem on their drug formularies.

I plan to do some research in the coming month and welcome any and all of you to do the same. Let us pool our internet sources to come up with suggestions we can present to the Narcolepsy Network and other advocacy groups so that they can take on Jazz Pharmaceuticals' price increases. Jazz has a monopoly on the sale and distribution of this drug.
Remember: Those of us who have insurance are the "lucky" narcoleptics. With medication, we can stay awake and work on a solution to make Xyrem available at a reasonable price to all persons suffering from narcolepsy. We must act now. We are not immune to being cut off from access to the drug should our insurance companies decide not to pay for it.

Very few people with narcolepsy can pay for this drug out of pocket. Physicians say they wish to prescribe it but many patients know they are "ineligible" due to no insurance and the high price. This must change. Please send me any information with your source on how Jazz acquired this drug and your price increases while on the medication. I will compile the info. and redistribute it to everyone. Let us look for a solution together.

Report post

Today my month's supply of Xyrem arrived, and the price charged to my insurance company has increased once again to over $1900 per month. We must do something about this before our insurance companies decide to take action by not allowing Xyrem on their drug formularies.

I plan to do some research in the coming month and welcome any and all of you to do the same. Let us pool our internet sources to come up with suggestions we can present to the Narcolepsy Network and other advocacy groups so that they can take on Jazz Pharmaceuticals' price increases. Jazz has a monopoly on the sale and distribution of this drug.
Remember: Those of us who have insurance are the "lucky" narcoleptics. With medication, we can stay awake and work on a solution to make Xyrem available at a reasonable price to all persons suffering from narcolepsy. We must act now. We are not immune to being cut off from access to the drug should our insurance companies decide not to pay for it.

Very few people with narcolepsy can pay for this drug out of pocket. Physicians say they wish to prescribe it but many patients know they are "ineligible" due to no insurance and the high price. This must change. Please send me any information with your source on how Jazz acquired this drug and your price increases while on the medication. I will compile the info. and redistribute it to everyone. Let us look for a solution together.

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With our insurance change two years ago, we have to pay the first 2500 deductible then continue with deductibles until we reach $4500.00. Well on one income, I had to give up my meds. I took only one dose of Xyrem a night until I ran out. It's been a few weeks and the most I sleep is 2 hours at a time. The Cataplexy attacks have started again. Now to find they raised the price, I'll never get it back. Life is back to the way it was before, no sleep at night, and fighting it in the day. Between the government (SS denials),the pharmacy and insurance... just sign me miserable and waiting to die.

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My wife has been on Xyrem for a couple of years. It works wonders for her. The price for the month in April was $1,657.20. Last month in May it went up to $1,921.08. When she started this medication in January 2008 it was $788.88. Several months ago I called Jazz and complained. They were very polite and listened to my complaint. I am now ready to complain again, but I don't think it will do any good to complain to Jazz. Does anyone have any suggestions as to the best place to complain?

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