Hi Jim and all,
Further to the posting under clinical trials with the duodopa pump
I've seen it make an incredible amount of difference recently on a fella with what appeared to be fairly advanced P.D. here.
It's been on the market for from what I gather a while now in most countries except U.S. which is a shame for most of you reading this.
Is it possible for you to jump up and down, yell, shout whatever to the appropriate people who oversee the trials and ask/tell them to hurry it along?
My apologies if you already have!
Cheers

Thanks, I've already sent a request to CNN under the health section for
Dr. Gupta to look into this. I guess we'll see what happens.

Maybe if we all chimed in and started making similar requests...?

It is still so crazy making that this treatment has not been made immediately available here. I have suspected that the people who profit most from DBS procedures must have sort of influence with the FDA. Once PWP have this alternative? bye bye DBS....that will fade out as the newer viral vector treatments take hold. There was a "debate" among researchers and clearly Duodopa has the edge:


The therapy has proved safe and effective. L-dopa/Carbidopa gel, which can be infused intraduodenally with portable pump systems, is now since 4 years on the market in several countries. A number of clinical studies have showed that L-dopa/Carbidopa gel treatment leads to improvement in motor symptomatology when given to Parkinson patients with motor fluctuations. The time in “on” increases and the time on “off,” and time with dyskinesias decrease, compared to oral therapy. We have demonstrated that also the “on”-periods get better – UPDRS III in “best on” is better under pump compared to peroral therapy. The mean dyskinesia intensity is decreased. By performing L-dopa tests with fixed doses of L-dopa before and after 6 months of Duodopa pump therapy we have shown that there is an anti-dyskinetic effect of the pump therapy. In studies on effect on non-motor symptomatology we have demonstrated clear improvements also of non-motor symptoms. According to the Non -motor symptom scale, most non-motor symptoms did improve, at least in a proportion of the patients, when switched from optimized peroral therapy to Duodopa pump infusion. Especially the improvement of the non-motor, but also of the motor, symptoms correlates to a clear improvement of health-related quality of life. In our experience side effects of this treatment mainly relate to the establishment of the PEG and to the duodenal tubing system. With improvement of the infusion equipment, these problems have become clearly less frequent during the last years. There have been no unexpected pharmacological side effects of Duodopa itself. Compared to Apomorphine Duodopa has the advantage of a stronger anti-Parkinson effect, making it possible to give it as monotherapy in all patients. Compared to DBS Duodopa has a comparable effect on motor and maybe even superior effect on non-motor symptoms. Also, Duodopa has the advantage of not having any negative neuropsychiatric effects. Duodopa represents an important and highly effective therapeutic option for patients with advanced Parkinson's disease and motor fluctuations.


Yes, if you happen to be European or wealthy enough to become an expat.....

-Laura

I sent a kindly worded Email to the established pharmaceuticals rep. So I'll let ya know if I hear back. Makes me feel a little better that at least I did something. Don't mess with someone who has nothing BUT time to think of all the letters I need to send out or all the people I need to thump!


I almost forgot, here's the link with all the media contacts if ya get a burr in your saddle.

http://www.abbott.com/global/url/con...tent_00081.htm

Here is a link to a forum thread about Abbott and Solvay.


http://neurotalk.psychcentral.com/thread39476.html

1. They've had the drug since 2008.
2. The FDA "fast track" status says a drug typically seeks approval in 6 mos., WHAT!
3. A new HORIZON study is being done and it won't complete until 2012.. it says that the efficacy of Duodopa vs oral meds is not certain. What a bunch of crap!


Now I'm ****** and as Pres. Obama said "I just want to know who's *** I need to kick."


Til later