Lots of trust
Vicky,
I think there is a lot of trust. I trust my neurologist; I trust the people running the 3-year long test that I volunteered for, whereby I spend more time inside an MRI machine than has ever been shown to be safe or unsafe. My requirement is: “Kill me or cure me, but do not lie to me.”
It was not only what Amgen did, it was how they did it, and their attitude – then and now – towards the human beings who offered up their living bodies hoping to find a cure. “Do no harm?” That would have been good. Great harm was done.
My agenda is not anti-pharma; my agenda is pro-dance, music, marvelling at the majesty of the universe; and calling for different kinds of people -- and especially neurologists and artists – to work together to eradicate Parkinson’s from the face of the earth forever.
The first 20 chapters of my on-line book are all about getting neurologists and dancers & etc. together - TOGETHER - to fight Parkinson's. I defend the pharma industry in chapters 8 and 8.5. And then Jimmy, in the waiting room of his neurologist, asked me in a whisper whether or not it was true, what they did to those people. And he was afraid they would do it to him. He had heard it from another patient.
And a sweet elderly lady told me the story, also in the waiting room.
I had to go researching to find out what they are talking about - the Amgen experiments. I never heard of it before.
But what was done in the Amgen fiasco was a dimension of Dante's Inferno. They broke the trust.
And all I am saying is, I don't want any of them checking my blood pressure. Or be trusted to feed my cat or water my plants while I am on holidays. I trust them not to be trusted. If they tell me today is Tuesday, then the one thing I know is that today is not Tuesday.
I love my Mirapex and I think that the lawsuits against them are ridiculous and damaging. I know that pharma employs - and pays well - thousands of brilliant scientists. Maybe they will find a cure for my disease, or maybe it will be some university, or a loner in the desert in Israel. Somebody will find the cure some day, and it's fine with me if it's a company that makes a hundred billion dollars on it. As Chou-en-Lai explained to Richard Nixon, "we don't care what color the cat is as long as it catches mice."
But Amgen is neither cat nor mouse. More like a viper. They exist in every industry. Their corporate culture is carrying a really nasty virus. An ethical virus.
I am not expecting anything to change. I am putting this on cyberspace so that the great-grand-children of the volunteers will be able to know that it is true that these men and women were heroes. Amgen has long forgotten, the Parkinson’s Industry has long forgotten, it's all certified as squeaky clean by the "corporate bio-ethicists" no one even seems to have the names of all 48 volunteers - nobody bothered to follow up on them? How many are still alive? How are they doing?
The Amgen disaster is making some of us keep our distance, and put a long time into checking into the attitude of whoever it is wants to offer us some different form of salvation at an unnamed price.
So far, I think that these Amsterdam people – a small company of about 70 people – so far they appear to be trustworthy, or at least able to relate to other conscious beings.
I refuse to be treated the way the Amgen volunteers were treated. But the Pharma industry refuses to learn anything whatsoever from this, except that they learned they can get away with almost anything, and that there are no consequences whatsoever for behavior that the most primitive tribes would tell you was wrong. Bad things happen, of course. Mistakes, miscalculations, false hopes, accidents, unintended side effects, sudden death. That’s all okay. That’s part of the risky business of fighting disease, and part of life itself. But this? This was wrong.
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political humor alert -
Get mad!!!
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