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Why Did Nord Pull Patient Assistance Funding For Xyrem?


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#1 sgreenwalt

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Posted 27 January 2010 - 01:08 AM

Does anyone know why NORD ceased all patient assistance funding for Xyrem (narcolepsy) through Jazz Pharmaceuticals. It just sort of happened without any real explanation. I think there is a deeper story behind that move.

#2 Nyx

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Posted 29 January 2010 - 10:58 PM

Does anyone know why NORD ceased all patient assistance funding for Xyrem (narcolepsy) through Jazz Pharmaceuticals. It just sort of happened without any real explanation. I think there is a deeper story behind that move.


I would agree. I made a few calls today and did some digging on the internet. It seems that NORD ceased the xyrem patient assistance program with very little (if any) publicity or notice.

I called the number listed for more information about starting xyrem, and after I pressed "3" to talk to someone about insurance issues, a woman answered who actually claimed to be located at the pharmacy where xyrem is shipped from. When I asked about assistance programs, I mentioned that I heard NORD discontinued the patient assistance program. At a little prodding on my part she said that it was discontinued last June because Jazz wanted to have their own patient assistance program instead. I.e., that NORD didn't cancel the program, but rather, Jazz elected to cancel it and start their own. Again, I don't know how much stock to put into that (i.e., if that's really how it happened), or the ability of Jazz to make that decision on NORD's behalf, but that's what she said.

Anyway, if anyone finds information or corroboration of why the NORD patient assistance program was terminated, that would be interesting to read. I don't know the exact details of the impact of the NORD program on Jazz, but I have a sneaking suspicion (hah) that if Jazz was the party that instigated the termination of that program in favor of their own program, it was no doubt in their own financial best interest. Anyone know the details of the terminated program?