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Parkinson's Disease Clinical Trials For posting and discussion of clinical trials related to Parkinson's Disease, and for the Parkinson Pipeline Project. All are welcome. |
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01-02-2010, 06:11 AM | #11 | |||
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Also, why the exorbitant cost? I think both research and clinicians agree that smaller, steady doses of levodopa is actually better for us as it mimics natural processes vs. the nasty on-off effects and dyskinesia. Why wouldn't this therapy be offered as an alternative to DBS? I don't understand why you would need be ready to enter into a nursing home to be eligible. It seems to me that Solvay is missing an opportunity to market this differently, or are there simply too many complications wherein people cannot tolerate the treatment? Laura |
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01-02-2010, 04:27 PM | #12 | ||
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I believe the reason it has been considered for pwp about to enter a nursing home is that the cost benefit of Duodopa versus nursing home is easier to argue.
I cannot understand why the drugs are so expensive, l-dopa is pretty cheap, liquid l-dopa aka Duodopa seems to cost "$ large". Is this an example of a company pricing themselves out of the market ? Why it should be considered only after dbs is a mystery to me. I agree I would take nearly anything over brain surgery. I wonder if there is a vested interest lobby for dbs among companies and Neuros who perform dbs !! To me this highlights the struggle to get drugs to market. We go through a never ending round of trials possibly only to find the company's pricing model is off the pace due to the costs of drug delivery to market. Then we have to lobby the medical profession to move away from their existing pet company / product to consider the new alternative. Makes you wonder how anything for PD gets to market (oh hang on, thats probably why nothing has for 40 years). I wish I had more answers. Take care, Neil. |
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"Thanks for this!" says: | Conductor71 (01-03-2010) |
02-04-2010, 02:38 AM | #13 | ||
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Why can't the duodopa be approved instead of the brain surgery?
They drilled my head and I'm still taking 1500 mg of levodopa a day! I'd much rather have the pump!! And why the heck is this treatment which is so effective being squandered on those in nursing homes! Think of those that this could help get back on their feet and be productive with a lot of life ahead of them, NOPE I cannot see how this is more expensive than brain surgery-perhaps in the long run (drug costs,etc) but come on, initially?? I smell a rat!! I'm up way too late and tommorrrow is another day. Let''''s face it this healthcare thing is never going to be fixed. It's too dollar hungry with special interests. Nite ya'll. |
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02-15-2010, 09:43 AM | #14 | ||
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I will start screening for trials aat Cleveland Clinic (OH) this month
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"Thanks for this!" says: | Conductor71 (02-17-2010) |
02-16-2010, 08:42 PM | #15 | ||
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02-16-2010, 09:01 PM | #16 | ||
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It is my understanding the pegs and tubing are different from the pegs and tubing normally used in the US. Our doctors agreed that Solvay should either change the pegs and tubes or train our US gastro doctors about the differences. It seems like a simple solution but I continue to hear of these same problems again and again. If they know there is a problem, why don't they just address it??!! It is so frustrating. My husband has had great success with Duodopa. The continuous infusion has greatly reduced his fluctuations and dykenesias. I just pray that get this approved quickly because we can surely see the great benefit it would be to so many people suffering with PD. |
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02-16-2010, 09:12 PM | #17 | ||
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[QUOTE=Stitcher;566120]I had a doc from the University of South Florida, Tampa, say that there were a lot of issues with infection at the site. I can only hope that this problem has been resolved.
Unfortunately I don't believe the problem has been resolved. There is a problem with our surgeons being unfamiliar with the different peg and tubing and apparently Solvay has been slow to either change the tubing or further train our doctors. My husband is in the study and had surgery in September 09 to insert his peg. He got a serious infection, requiring additional surgery to repair and correctly place the peg along with removing the infection. He became septic and came very close to dying. He was in the hospital for 3 1/2 weeks. The drug is great but the procedure needs to be perfected. Seems that the solution is simple -- but Solvay hasn't responded very well. |
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"Thanks for this!" says: | Conductor71 (02-17-2010), paula_w (10-20-2010) |
02-17-2010, 02:00 AM | #18 | |||
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[QUOTE=Dianne G;622585]
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Sorry to hear that your husband ended up with such a serious reaction and infection. I am glad to hear that he has rebound and gains benefit from the system. Will he be able to continue treatment after the trials are over? Laura |
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02-19-2010, 02:07 PM | #19 | ||
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[QUOTE=Dianne G;622585]
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Thanks again Cmeender |
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"Thanks for this!" says: | paula_w (10-20-2010) |
02-19-2010, 03:14 PM | #20 | ||
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In Remembrance
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i'm just reading this thread - got behind. Thanks for all the information from trial participants and family. I hadn't heard about it only being used if a DBS is ruled out.
Dianne, i'm so glad it was all worth it! what a nightmare..... cmeender, wishing you all the best. the drug companies sink to new levels all the time. They put you through the ringer and completely disregard the punishment and emotional/psychological consequences of the trauma, let alone the near death experiences. after all that, it better work! please keep us posted. paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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