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Old 11-26-2006, 05:28 PM
boann boann is offline
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Join Date: Sep 2006
Posts: 165
15 yr Member
boann boann is offline
Member
 
Join Date: Sep 2006
Posts: 165
15 yr Member
Default hi made it up

thank you for the feedback!

Quote:
Originally Posted by made it up View Post
Hi Boann,
I had reservations about starting levodopa and in retrospect was a bit too **** about it.
I waited five yrs after diagnosis and I think suffered unnecessarily.
I guess that is part of what i would like to see happen - that people with PD were fully informed about all of their options, the good and the bad, and so, like you, were able to make an informed choice.

Quote:
Originally Posted by made it up View Post
Toxic or whatever it may be, but many times I've come on after an off and thought "thank God this drug was invented."
yes, i can see that it can be helpful for some period before it makes, or contributes to making "life unbearable," as one thread referred to the state one has (or had) to be in to qualify for DBS. however, just because it might be better than nothing does not mean it is anywhere near good enough, in my opinion.

however, for big pharma, i would hazard a guess that having managed to establish such a flawed drug as the "gold standard" - a situation that allows not just for a steady income stream from the sale of levodopa products, but also carries with it infinite room for growth in the form of adjuncts that are meant to fix the problems levodopa causes - has allowed them to maintain the most lucrative possible set up for a market the size of Parkinson's.

Quote:
Originally Posted by made it up View Post
Further down the track dyskinesias and wearing off will make life difficult but that's when the next new invention we have can be used....(thank God DBS was invented too!)
i once asked my neuro what her game plan would be if her goal was never to take levodopa. "what if," she responded, "there were something you could take that would stop the dyskinesias?"

wrong answer.*

the right answer would be something along these lines:

they have been "trying" to fix dyskinesias since day one - that's about 40 years of "trying," which either means they really don't want to fix them or they can't be fixed. either way, the layering on of yet another drug to stop the dyskinesias is a model that has yet to succeed, in spite of countless dollars and 40 long years of precious, precious time.

it is, in my opinion, time for a new model - a non-levodopa-centric model - but we aren't going to see that coming out of any of the companies with reliable and expandable income streams via the current set up - and those companies include novartis/sandoz/orion/roche, merck/endo/bristol myers squibb, mylan/bertek/watson/somerset, teva/ivax...

discovered this weekend that roche has a controlling interest in - as in, it totally controls - genentech, which means that novartis, which owns 33% of roche, has the equivalent of a 10% interest in genetech (got this directly from a genentech sec filing). in the mid-late 90s, genentech was working on a neurturin project (neurturin, like gdnf, is a trophic factor) for PD. it seems from their press releases that that initiative died around the same time their arrangement with Roche was solidified, which was in 1999. Roche, of course, makes a levodopa product (i think it is madopar, the european version of sinemet), and Novartis, of course, is pulling out all the stops on its quest to take over the generic sinemet market with the "new, optimized levodopa therapy, stalevo."

could be coincidence of timing.

have soapbox, will travel!

boann

*i have since learned that an organization whose purpose is to help and educate people with movement disorders and on whose board my neuro sits is funded largely by big pharma. which reminds me - what is up with PAN taking money from pharmaceutical companies??? that is probably a question for another thread.
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