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Originally Posted by zanpar321
It seems quite evident that what we need is a patient led organization vs a money focused behemoth that we presently have in the US. The Cure Parkinson's Trust UK seems to be a patient led research team. Face it folks, money drives the research in the US and the FDA only approves research that has big money behind it! The end result seems to be that research that may be quite promising is all to often left to die on the vine if Big Pharma doesn't see a big payoff down the road. The Michael Fox Foundation may be such an organization but I'm not sure who is on their board. Does anyone know who makes the decisions there regarding which studies to fund? They seem to be funding some good research but maybe adding another patient led organization in the US would heat up the research. I've had Parkinson's now for 4 years and I'm beginning to realize that waiting for Big Pharma to help me is a fruitless effort!
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Zanpar you're right, the Cure Parkinson's Trust is a great organization. Maybe we need another patient led org and maybe not. And, money is clearly a driving force in drug research. However, I'm not sure I agree with you about Big Pharma letting drugs "die on the vine". Other than the Amgen - GDNF controversy, what other drug has been left out to die by Big Pharma? The real issue is more that Big Pharma does little research these days on any disease or illness that doesn't represent hundreds of millions of patients (e.g. cancer, heart, diabetes). They would rather spend time and money on me-too drugs that they know will work for millions rather than risk funds on diseases that are harder to treat and cure. I read recently that there are now 24 treatments available for erectile dysfunction. I know this is a
rising problem, but how many more treatments do we actually need? Or drugs for cholesterol, hypertension, etc.
So, instead, we have the research for PD and other less prevalent diseases left to smaller biotech companies, and there are actually many of them doing great research. However, their funds tend to be limited and this leads to extended timelines for getting drugs approved. Ultimately, we see Big Pharma stepping in at the end, when the drug is close to approval and has been de-risked, and just buying out the smaller biotech. It's a lot simpler model for Pharma than doing their own research.
Still, with all of the above being said, the number one reason for delays in the clinical trial process is finding participants to volunteer. If PWP want to make a real difference, they need to be more willing to step into the line of fire and participate in trials.