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Old 06-29-2009, 06:50 PM
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reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
Default Tom put his finger on it

The lack of urgency and the demands of the investor are the main problems. About 30 years ago, the US was sold on the idea that the State should not be spending tax dollars on research and that the private sector could do better. That turned out to be ideological slop and we are paying the price.

We need the equivalent of the Apollo program. The patient's need is obvious. That of the State is as well if one looks at the demographics. The research community would get funds. Big Pharma would try to screw things up.

The State needs to assume the lead on the no-profit end.

Quote:
Originally Posted by TommyI View Post
Debi
I agree with all that you say. Industry has all the responsibility vested in it to supply treatments. The risks are high, funding is scarce and there are no cast iron outcome measures or biomarkers to mitigate the problem.
Your investment in these companies adds credibility to whatever science they are trying to turn into treatments allowing them to secure funding from other sources. This is seed funding and it works.
BUT I wonder whether this goes far enough? Couldn't we do more? There are some potentially disease modifying treatments out there and it strikes me that we need to be arguing for "the State" to get involved as well. The economic burden of Parkinson's is set to rise dramatically in the next few years. I think we should be researching this to show politicians and healthcare authorities that actually a relatively small investment now could reap huge dividends for the future.
OK so may be they won't play ball with this idea. But at the very least we should be encouraging a culture of teamwork rather than leave it all to Big Pharma. If there was some way of bringing the three principal stakeholders (patients, industry and government) together so that their required outputs were all met (better health, profits and value/votes) then risk COULD be mitigated perhaps.
There has to be a better way of working than the current system. What do you think? It should not be impossible to satisfy all stakeholder outputs satisfactorily. TEAMWORK has to be the way forward. It makes sense for everyone.
Not sure if I have explained all that adequately , but gotta go. Will revisit.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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