Speculation by one of the physicians who participated in the Amgen GDNF trials was that the lesions in the monkeys were caused by incredibly large doses of the tropic factor followed by "cold turkey" withdrawl. thus the abrupt withdrawl of the GDNF by Amgen may have been more harmful than continuing the drug. madelyn

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.

I still think insisting that in any clinical trial the contract be made between the patient and the pharma co could further the goal of making the pharmaceutical co responsive to the patient participant.
These entities know we trust our own physicians. Most of us are loathe to damage a realtionship we have with our physicians, and do not wish to take adverse action against our physicians. hence, the reason the contract is between the physician or medical institution and the patient--not the pharmaceutical entity and the clinical trial participant.

Vicky,
I am sorry to speak so roughly; I wore out a pair of shoes pacing iin anger about Amgen a few week ago. My roughness is not meant to be against you; as Leonard Cohen often says, "You are a hundred floors above me in living this situation" And me, I'm an all-purpose attack dog but barking only; no bites. So let's not all get each other upset if we see a few things differently. Diversity wins all the time. I am on the side of the dancers not the scientists but i try to bring scientists in to see that there are some things they can't see with their stupid tests

Bob, there's nothing like a good vent to read while I'm forcing down mini bites of food prepared by my husband...he's getting very good, but no appetite.

I love to dance/ but can't multi-task, like dancing and carrying on a conversation, then the shuffling starts. It can unlock dystonia, but not very well first thing in the morning.

The music has to have a good beat and i'm not ready for Adam Ant upon waking up, whose wife changed her name to Eve, for those of you who, like me, missed the 80s to have babies, may not know. Children's music, children's Tv, in the car, at home. so I'm just learning who was singing what. I do like classic alternative.

Bob can you reprint your URL, if there is one to your book?

ok, If I am missing a cultural behavior, please inform me. i love political humor, the sources are endless and it relaxes me to laugh at it I always felt kinda guilty watching sat. night live, Stewart and Colbert. But now i need the laughs and don't think they are going to "corrupt me" or change my thinking much. so i can't resist sharing this news item.

Today, our national relations with Venezuela might be "enhanced" due to the "alledged" flirtations between Courtney Love and Hugo Chavez. I can see George and Laura shaking their heads....wishing they had the appeal that Courtney does with Hugo.

Standing side by side with Courtney and Hugo, the Bushes clearly look more satanic and Courtney obviously doesn't smell like sulphur.

Thanks for the help Courtney, is there a Mrs. Chavez? I can't say, " men - they are all alike"!

Because they aren't. Hugo has something unique going ...... I guess all Hugo needs is a little Love.

America...it's more than just a country to hate.

paula
.

[QUOTE=paula

Bob can you reprint your URL, if there is one to your book?

[url]www.parkinsonsdance.blogspot.com[/url]

That's the first page. There is a list of chapters on the right hand side and you have to click to get from one chapter to another. The first 20 chapters are all about dance and music and such like, and that is the place I must return to, at least a lot of the time. The dates showing when the article was posted are all wrong, and clicking forward or backward sometimes goes the opposite way, because of the dates being wrong. Bill Gates hates me personally - I have no idea why - and spent a fortune making this software just for me. And Bill Gates sits in his office, laughing hysterically.

couldn't just hit thanks because i am thanking, can relate to the nerve of that Bill Gates, and chuckling.



quote=Bob Dawson;572480]

Rick, I liked your idea of a sticky on lots of web sites asking them to make up their own minds about Amgen et al. But right now i don't have the energy. I have not forgotten and I will not forget. I am open to ideas. But I often have to lie low for awhile (at least until the helicopters leave --hahaha). I get way behind on all this information. Please e-mail me, anybody, if there are things I should be paying attention to. I usually don't find them myself; usually I get a collage of other people's words. I don't really write; I sort of take dictation. But right now, I can't make the hills, my system is shot; I'm living on pills, for which I thank God; I followed the course from chaos to art; desire the horse, depression the cart. (Isaiah 4th, I think.)

We are not the ones who have to whisper
We are not the ones who did wrong.

WOW, Bob!
Your sound-off about Amgen makes me want to read your online book/blog! That's a cool marketing strategy. lol

There is a reliable account in detail about the WHOLE GDNF story on the Parkinson Pipeline Project website:

http://pdpipeline.org/advocacy/gdnf_table.htm

Much of this detailed account oof the story of GDNF is the result ofo the hard work (and librarian skills) or Linda Herman, who posts here. She or any of PPP volunteers would be happy to discuss any of it with anyone (after we screen you lol)

The story is far from complete.
Peggy