Some e-mail correspondence that i thought folks would like to see. The individual at PAN gave me permission to post her e-mails. The "Update on Sinemet" link below has a number to call if you got caught up in the shortage--they want to hear your story.
Quote:
On Mar 31, 2011, at 10:52 AM, Elizabeth Kwasnik wrote:
Hi [Jaye],
Thank you for participating in the PAN Forum Webcast, and for submitting a question. While we were unable to ask all of the questions on the live webcast, we still want to answer any and all questions we received.
You asked about the Sinemet shortage and what can be done to help those who need the brand name and not the generic. In early March, the FDA approved a second manufacturer for Sinemet- Mylan- since Merck was experiencing a shortage.
The National Parkinson Foundation (NPF) posted a great update about the shortage on their website:
Update on Sinemet Shortage
I apologize that this was not a timely response; things were a bit hectic in the office after the Forum and we’re trying to tie up all loose ends. I hope that helps answer your question. Please feel free to contact PAN with any further questions.
Best,
Elizabeth Kwasnik
[etc.]
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I wrote back...
Quote:
Thank you very much! I had also called [my insurance company's preferred] online pharmacy and, after talking politely with them for two months AND having to take generic for a while AND the wrong dose for a while, I had to be quite direct with a couple of pharmacists. An advocate's work is never done, I've noticed.
If you have another couple of minutes, I would like to receive your permission to post your email on Neurotalk, please. If PAN spoke with the FDA about the problem, I would be glad to know that, too.. Thanks again for your communication.
Jaye ___ _____
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and quickly received a reply.
Quote:
Absolutely, feel free to share my email on Neurotalk. As far as I know, PAN was not in touch with the FDA directly. I know that our CEO, Amy Comstock Rick, did attempt to contact Merck to find out the details of the shortage and what was being done to alleviate it, but I’m not sure about the specifics of their communication.
Best,
Elizabeth Kwasnik
[etc.]
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Maybe you'd like to tell your story here, too.
Jaye