[Jim091866]

I want to ask you what do you think the odds of getting something as simple as Duodopa for example approved and on the market lets say within the next 5 years? Here is a treatment that is proven for a number of years in Europe, every one of the EU countries has it. We still don't-the reason I strongly suspect is the dollars! Yup that's right, the darn thing went to fast track status in 2002! We're still in trials? What a bunch of BS! They're probably going to come up with some lame argument like Amgen did-not enough of a market, too costly, insurance reimbursement,etc. With my dyskinesia lately and the company that my pharmacy deals with to get the generic changing (All the pharmacies in my area use this supplier) the generic is not working. Sinemet brand name is 125.00/100 tabs! That's 500.00 a month for me. So when I think of this and I KNOW there is something out there that is better I get burned up.

[pegleg]

I am convinced that the steady stream of L-dopa that could be provided through the pump system Duodopa uses would be an answer to my prayer. And I have said it in meetings and events more than once that therapies that have already been approved and used successfully in populations outside the FDA jurisdiction should get a fast-track status - like NOW!

That's what we are here for - let's brainstorm how we can help
Peg

[jeanb]

I agree!!! We need this. And it works. I am so tired of doctors pushing DBS on me.

Jean

Originally Posted by pegleg

I am convinced that the steady stream of L-dopa that could be provided through the pump system Duodopa uses would be an answer to my prayer. And I have said it in meetings and events more than once that therapies that have already been approved and used successfully in populations outside the FDA jurisdiction should get a fast-track status - like NOW!

That's what we are here for - let's brainstorm how we can help
Peg

[lurkingforacure]

Assume money is not an issue (because I realize most PWP cannot afford to fly to Europe to get duodopa). But assume for now, that a foundation were set up that would pay for the costs of a PWP to get to Europe to get duodopa, stay for a week or however long reasonably necessary to be sure it was OK, and then get that PWP home by plane. Would you, if it were paid for, be willing to fly over to Europe and have this done by a doc you didn't know in a city/hospital you would probably never be in again, performed by doctors who probably didn't speak English?

When I first read about duodopa being available over there for over five years, and STILL not available AT ALL here, I wondered, why couldnt' someone just go over there to do it, assuming they could afford to do so?

And then, if one PWP were to do that, and it freed him or her from the confines of this damned disease such that they could help another PWP to do the same, what a difference in the world that would make. I know if my spouse felt better, weren't so doggone tired all the time, didnt' have the constant, unrelenting pain, all those lovely symptoms, boy what could he accomplish, and he would. Sort of like the Heifer charitable organization where you gift money and they use it to train people to learn to farm and feed themselves, on the promise that those people in turn share the bounty. If you give enough money to give a family a goat, a cow, a flock of chickens, a bee hive, whatever, they must give at least one of the offspring of that animal to another family so that they, too, can benefit...and in turn that family gives an offspring, and so it goes.

But back to the original question: would PWP do this? And if they were on a large enough scale, I can see how one could set up a foundation/charity which would screen and pay for travel to and from Europe and the actual procedure. I also think one could get donations for actual treatments without tremendous difficulty, compared to asking for money for research (although both are needed, it's just that so many PWP need duodopa like yesterday). So please share your thoughts, this is something that I see could actually make a real difference in the lives of our fellow PWP relatively quickly....while the trials drag on. I'd especially be interested in hearing from anyone who thinks a PWP could NOT do this for some reason (other than being medically unable to make such a hard trip or undergo the operation).

Note: let's not get bogged down in the details, like who would get to go (would you decide by who was oldest? who had PD the longest? who was in the worst condition?) or any legal details, like if there any problem with the surgery and how would you handle that, whether insurance (if you have any) would cover any complications which might arise down the road (site infection, etc.), etc., etc., etc. Right now the question is whether a US PWP would go to Europe to get this done if it were paid for by a charitable organization of some kind. And no, we don't have that kind of money ourselves to fund this, have to get that out there, but I think it would be doable to get it on a national scale. I can visualize entire planes of PWP flying to Europe on a group discount for duodopa....and then wonder if that might speed up its availability here....