Quote:
“…We need someone like you to head up a group to demand all orgs work together toward the same goal…
…please be bold like Bob Dawson and tell it like it is - like it should be - and it will be. "Build it (cure it) and they will come!"…
Gosh, Peggy, I hardly know what to say. I think there should be a Parkinson’s group, concentrated heavily on going viral at low cost and almost no infrastructure…
But I’m not the one. Too old, too broke, too singular. The duties keep falling in the Young On-setters; I’m an Old Out-setter, fading into space.
Your second message: yes, Pharma builds the cost of lawsuits and criminal penalties into the cost of the drugs – one of them had to pay a billion dollars – and their stock immediately shot upwards, because they had budgeted two billion, and had it included in the price of the drug, so they made an extra billion in profits because the penalty was half of what they expected.
There are thousands of examples that show the medical industry behaving like ruthless drug dealers. What set me off a few years ago was (1) Amgen GDNF fiasco – the attitude, the lies, the moral corruption; (2) the famous shortage of sinemet – and we never did find out the truth, and there is still no back-up supply – if one factory goes down, we could be without sinemet within days and (3) one-third of medical research papers submitted for peer review, making fraudulent and false claims, sometimes direct falsification, and the silence of the medical industry that followed… except for a few researchers coming out and saying that they avoid peer review…. Because the peer review system enforces the status quo…
But I do agree with you that doing nothing more than identifying the bad guys gets us nowhere.
It’s one of the first things you begin to notice when you are diagnosed with PD.
There is no war against PD, there is a huge empire that lives off it, and the entire PD scene should be studied as an extreme example of just how dysfunctional a system can be.
Huge effort and cost, no results in research. Global problem; no global contacts among PD orgs. Doctors in some clinics paying $400,000 per year in liability insurance – lawyers take 50 to 75% of whatever they can extort. Hospital personnel with no clue why I need to have pills with me; PWP in isolation with no one following their story, PWP being fired even though still competent… and so on and so on.
The whole PD system does not work at all.
And as you say, it requires patient power.
Not patient begging