Originally Posted by Fiona

Well, in my view, NOTHING is going to be advanced for Parkinson's patients until we get loud, demanding, and in the way. Nothing. I mean, we're worried about decorum or being threatening with our questions, when the researchers don't even want to look at us, let alone listen to our experiences and concerns???? Whose interest is any of this work being done for anyway? The lack of respect and even basic humanity is just appalling.

Doctors from the period where AIDS patients really united have related how they were just barely able to organize all the information their patients were giving them, so much was coming from the patient side. AIDS patients demanded a lot, they were politically totally abrasive, and had no worries about being polite. They didn't get a cure, but they did get the possibility of not dying immediately and possibly having a life still. But it took civil disobedience and basically a major power struggle with the status quo to get that.

I know the model for our disease is different - we have less in common, our disease is slow, we tend to hide and be ashamed, and we're not young people dying rapidly....But this whole thing is inescapably political, inescapably about money, and we've been jerked around a whole lot.

When I hear about endless conferences with "ideas being brought to the table", and possibly considering a tiny bit of patient input, or tolerating some patient observation - at this point, I am ready to lose it. We don't have that kind of time and the whole process, the whole model is seriously, seriously broken.

Yes, I know there are many well-meaning doctors, researchers, even pharmaceutical guys and god bless 'em. But no matter how good their intentions are, or what fine people they are personally, they need to start facing the fact that the whole system of clinical trials, of collecting data and evidence, and even of diagnosing and recommending treatment, has been greatly, greatly compromised over the past decade or two. No matter how good individuals are, they are serving a system that is not working for us to say the least, and to be more honest, is basically corrupt.

We should be storming the gates of Amgen and demanding that they at least release the licensing rights to GDNF, and restore compassionate use to the people that participated. At the very least. Instead, we kind of collectively say, "oh, well..." and move on???? We're worried about stepping on researchers' toes? Why? How does that possibly serve us, unless we want a few more dopamine agonists with ridiculolus prices in the world, and call it a day.

It has not been good enuf, the lack of progress, the lack of transparency, the lack of urgency, and the underlying greed behind the whole thing. There's no way to be polite about it.

It's hard to organize. I don't know how. But at this point, I have had it with negotiating within the existing system. I, for one, would be interested in joining any initiative that demands some answers, that proposes entirely new models, and steps fearlessly over all those in the way. I don't have time for or interest in anything else.