Timely given Peg's recent thread about DBS, this article, although not new or necessarily comprehensive, does provide a pretty good basic outline of the differences between these two treatments (assuming the latter gets approved here!)

Here's the link:

http://www.acnr.co.uk/JA08/ACNRJA08_duodopa.pdf

Gotta add: from what I have read, duodopa costs $166.00 per day or over $60,000 per year-who can afford this? It sounds like in Canada they are "rationing" this and making people use pills until absolutely necessary to switch over...does anyone think the cost will go down if this gets approved in the US? What good does this new treatment do if most folks cannot afford it?

Thank you for sharing this! I am obviously in the Duodopa camp. One thing, they somehow forget to mention that DBS can profoundly affect speech to the point where they cannot talk. This would be oodles of fun, if like me, a person has lost their ability to write legibly. The risk is pretty high for a speech disorder too; I have heard 25% or so. The risks are so steep for DBS and then to have it done twice or more given infection and misplaced wires? The only attractive feature is that it is somewhat hidden.

I am hoping that simple economic law of supply and demand will go into effect when Duodopa is approved. That is the more people who choose the pump the more its cost is likely to drop. However, this doesn't take into consideration the patent cost factor...

Laura

I spoke to my Neuro about Duodopa cost :

"Duodopa is cleared as a treatment in the UK. It is very expensive though, $60k dollars a year for the drugs alone, then add in the aftercare, monitoring etc and add on $150k. So tough to justify however the PWP it has treated tend to be those about to go into a nursing home where Duodopa becomes cost effective versus the cost of the home. Apparently if being considered by a Neuro, Duodopa "makers" bring their own Accountant to meetings !!"

Seems odd to me, L-dopa isn't an expensive drug to my knowledge so why should Duodopa be so highly priced ?

Perhaps its the cost of bringing drugs to market (e.g. why do the FDA need to test the product when it has been tested for the UK). Surely some partnership between international countries can only be good, reducing cost and increasing speed.

Of course there is the need to maximise profit for the producers of Duodopa. The short time it has exclusivity means we need to screw the market as much as possible while we can boys.

Duodopa represents all that is bad with big pharma and drug testing to me. A product that is low risk, very effective but still takes an age to get to the people who need it and costs a kings ransom to bring to market. When it does arrive we can't afford the bloody thing anyway !!

Deep breath ...

Neil.

Thanks, lurking, Laura and Neil. I am glad to see you bring up the differing approving agencies (FDA and EMA of the UK). If "patient-centered" care is the wave of the future, nobody seems to be addressing it. Parkinson's is due a little focus on research .

Some of us advocates have been asking why a drug that has been approved and safely used for year in another country has to start at step 1 of the U.S. FDA approval process? Why can't there be more collaboration in cases like this, especially when it's a disease that lasts so long and the treatments for it are expensive and widely varied? And is it possible that the exorbitant cost of Duodopa is one of the reasons it has not yet been approved in the U.S.? (Of course, it is!)

Do you think we could muster up enough support to get the FDA's attention?

Let's brainstorm.

Peg

It was my understanding that the long delay in Duodopa being released in the US was due to a new delivery system being designed, that the european model was not satisfactory to US standards, that it was not the medication gel itself that was a problem, can anyone confirm?

Yet reading Aftermathman's post it would seem that the cost is pitched for maximum profit - but against the cost of care facilities! I find this extraordinary. The estimate of $60,000 give a breakdown of $160 per day. This seems very high, in fact as high if not higher than some cancer treatments. At the height of the sinemet shortage a branded sinemet tablet cost 7.5p here in the uk. Strangely the generic carb/ldopa versions cost 12-13p depending on source! So what is so special about this formulation? It would seem to me that patients (clients/customers etc ) ought to be able to have access to this kind of information.

The implantation of the device would seem to me to be very similar to a supra-pubic catheter, or a stoma.

I wonder if it is possible to actually find out a complete breakdown of costs, here in europe, and potentially in the US, to see how they are likely to compare. Or even how they are arrived at.......