[Jim091866]

Does anyone know how to start an electronic petition on duodopa? Thanks I'm in the mood to clobber somebody today and stir up some ****. Called Abbott, the U.S. partner for Solvay and they are going to "get back with me" on its' status.

[jeanb]

This looks like a good possibility:

http://www.petitiononline.com/

Originally Posted by Jim0918

Does anyone know how to start an electronic petition on duodopa? Thanks I'm in the mood to clobber somebody today and stir up some ****. Called Abbott, the U.S. partner for Solvay and they are going to "get back with me" on its' status.

[Conductor71]

Originally Posted by Jim0918

Does anyone know how to start an electronic petition on duodopa? Thanks I'm in the mood to clobber somebody today and stir up some ****. Called Abbott, the U.S. partner for Solvay and they are going to "get back with me" on its' status.

Jim,

I was just looking into doing this very thing, but kicking it up a notch. I want to include video of those who have "had it" and putting together a little public service announcement on the realities and asking the hard questions of the FDA. Ten years in use and they want to put it through clinical trials? Come on. We need real reasons; no more crap about standards and safety.

So with petition come video...I honestly think seeing us will have more impact. I am not sure starting on YouTube is the right place...I was thinking "news" shows like 60 Minutes, Today, NBC Nightly News...somewhere there is investigative reporting. Any other sources?

Laura

,

[girija]

Originally Posted by Jim0918

Does anyone know how to start an electronic petition on duodopa? Thanks I'm in the mood to clobber somebody today and stir up some ****. Called Abbott, the U.S. partner for Solvay and they are going to "get back with me" on its' status.

Hi All,
I talked with Abbott representatives at the PAN Forum in Washington DC last month. They had a booth set up and were advertising for clinical trials (for Phase 3 if I remember correctly) for Du odopa in USA and were recruiting patients in advanced stages of PD.....>

What this means to me is that duodopa is not going to be available for us here now. My rough estimate of time for the study, data collection and submission to FDA would be at least an year.

What baffled me was that Abbott is required (FDA rules as per Abbott rep) to conduct a clinical trial for Duodopa even though it is already approved in other countries. I certainly hope that they are getting enough advanced stage PwP to enroll in this study.

So in this case, Abbott may not have much control over the matters. May be its time to write letters to the FDA. Something to think about.

Oh one more company that is recruiting patients for their gene therpay clinical trials is Ceregene if any one interested. They have a sham control group which prevented me from enrolling in the study.....

Girija

Jim, Did Abbott get back to you?

Girija

[Jim091866]

I spoke to their chief pharmacist who told me that the drug is in phase III of the trials and they would be submitting for approval pending those results.
I personally think that you tube would be an excellent forum to start with. I think that if there was an uprising of videos by PWP then it might draw the attention of 60 minutes or Dr. Sajay Gupta, etc. Another idea is that right now this is not a subject that we can target the FDA with, Abbott has not submitted for approval. We can start a petition of interested patients to let them know that we are watching.

On another note, tonight I went in to a Racetrack gas station and they had MJFF chocolate bars for a buck and then from Apr.25-29th all the proceeds from their coffee sales are being donated. ALRIGHT!!!! My wife is going to think I've gotten back on Mirapex with all the coffee I'll be drinking!

[Conductor71]

Originally Posted by Jim0918

I Another idea is that right now this is not a subject that we can target the FDA with, Abbott has not submitted for approval. We can start a petition of interested patients to let them know that we are watching.

Why can't we target the FDA? This is where the hold up. As Girija aptly said "baffling"...and they were going to make Abbott start off with placebo trials?! Placebo for essentially a different form of our gold standard drug over the last 50 years. I,for one, think they owe us some answers.

As for Abbott,, we should be sharing our appreciation and willingness to see this through...I find the FDA stance insulting. They are the reason why we have very few treatment options, and I want to know why they say "no" so much to advances or cross-label treatments?

Laura