Xyrem – potent and valued despite stigma

Sep. 8 2010

Forbes Readers On Jazz And Dendreon


I was grateful and touched by the comments readers shared on my story about an expert panel’s rejection of Jazz Pharmaceuticals’ Xyrem for fibromyalgia and my defense of that drug’s continued use as a treatment for narcolepsy.

Erica1234 worried that the rejection could make it uneconomical for Jazz to keep selling Xyrem for narcolepsy at the current price. That’s unlikely. It’s still a substantial product, and the fibromyalgia vote seems more of a setback than a final word.

What really struck home is how much patients value this medicine, never mind the controversy over black-market abuse by bodybuilders, drug abusers, or rapists who use a similar chemical to knock out their victims.

Reader Wheatlessinseattle made the point that Xyrem is so expensive that it wouldn’t make sense for people who want to abuse it to get the medical version. Abusers have been making the substance, known as GHB, since long before Xyrem was ever approved by the Food and Drug Administration.

Sharondsmith, the past president of the Narcolepsy Network, Inc., wrote:

“Before narcolepsy I was an 80’s yuppie with bright prospects. At age 30, the debilitating symptoms of narcolepsy with cataplexy ended my career and, despite the treatments of the day, turned ”˜quality of life’ into a personal oxymoron.

“Ten years later I was fortunate to participate in the Xyrem trials and experience first-hand the wonder of sleeping through the night, without torturous nightmares and hallucinations; feeling rested and alive when I woke; needing only one short nap in the afternoon, and being freed from dozens of full-body collapses from even the slightest of emotions throughout the day.”

Glassmr wrote about her own narcolepsy, and also chided me for using the term “date-rape drug” in my headline. Sorry, glassmr, but I don’t think there would have been anything to be gained by sugar-coating the headline.

Readers disagreed with my characterization of the scheduling of the Medicare panel on Dendreon’s Provenge as a mild positive. The comments delved pretty deep into the data for the pivotal Provenge study, Impact, and the differences between the treatment’s effectiveness in men over 65 (the effect is very big) and those under 65 (it’s not as big.) The argument is that this means Provenge is not effective at all.

I think Medicare will end up reimbursing Provenge for on-label use, but I’m looking into what the review of the product will mean. Email me with your thoughts. I will, of course, let you know  what I learn.

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