Bob,

The best way to get the whole picture is to read the book. Nick did an excellent and thorough job and visited several of the participants, including in the UK. Sadly, some have passed away.

paula

It's Rick Everett, your fellow dancing parkie of YouTube fame. Sorry I didn't say hi sooner but have been running behind and just now caught up with this thread. You've come to a good spot here.

Your comments on Amgen got me to thinking. A lot of us are kind of beat down and only have the energy to curse Amgen and shake a fist. Amgen sits with a smile as the memory fades.

So, why should they be allowed that luxury? How about the "Remember Amgen Project" or something similar, so long as it has their name in it. Prepare a short, factual fact sheet of what happened. Just the facts. No opinions that their lawyers can latch onto. But dedicate it to "the Millions of PWP Betrayed" or similar. Then we ask that bloggers prominently post "I Support the Remember Amgen Project" and link to it. I've just started my own blog and will be happy to post it and help start it. The beauty of the idea is that once it is out there, it is just Amgen and the facts. And it won't fade away until they make things right. As they say, "I am blogger, hear me roar."

Hey, reverrett, Rick Everett, I apologize more than you do because my website relies heavily on the You Tube of you dancing, on the first page of the site. Without that video, I had nothing to use to reply to the neurologist who was saying the way you can identify that someone has PD is by the fact that they can't dance. So, bingo, up comes the video of you.
Trouble is my middle name; so, yeah, I will support anything that makes it clear that the volunteers were not forgotten, and we will not tolerate being treated like that in the future. I will continue in my own way; your proposals I also support fully; the biggest problem is that we always seem to be PWP talking to PWP, and some of this needs to get out to the bigger world more often. I wish I could SPAM the entire world about this, just once.
But in this story about the volunteers being used as pawns on a chessboard, I am actively serious about saying that if someone says that was done by Amgen was routine, acceptable and the normal way of doing things, then that person has flunked the Litmus Test and should not be anywhere near me; should find a line of work that does not involve suffering people.
Ask people what they think about the Amgen controversy. It's a test question. You see, there is no controversy. What was done to the People With Parkinson's by Amgen was WRONG. If your doctor thinks that is controversial, you've got the wrong doctor. Moreso it applies to the researchers, and who should be permitted to examine us and drill holes in us. Some of those people clearly need to find a new career path, and not anywhere near me.

Yeah,Rick, a "remember amgen" project of some sort sounds right to me. And whoever gets the final right to market the product should chisel the names of all 48 volunteers into the exterioir walls of the world head office.
And when the product is re-launched they had better thank the volunteers for making it possible
If they end up wanting to fight and sue and deny, then it would be time to start making a whole series of angry comedian fake commercials on YouTube. If the videos are funny and true and daring, it can attract millions of people, at no cost. The Harvard MBA's and the PH'd researchers have no idea just how out of control we aging Baby Boomers can be. At no cost, with good humour, and with ruthless truth, we can make them the laughingstock of the world. I think I want the role of the "corporate bio-ethicist". Just the concept of it makes me laugh. Ideally should be a Monty Python type of series of skits, available to the whole world on YouTube. l If it is really good it can spread like a virus on the internet.
Personal hope: listen to Anuket sing at the end of my Chapter 21. I am not begging for hits; I am saying it had become hugely important that she sing.
Oh Rick, I may just continue to manage the Parkinson's Underground Internet Conspiracy - it takes a lot of time, what with flying out to all the branch offices; dealing with thousands of employees, etc. But I am entirely available to participate in what you are suggesting and any variations or additional forms of guerilla theatre. We have no power, so they have no idea that we are extremely powerful.
The memory of the Amgen betrayal will not fade away; on the contrary, it is just beginning to reach a lot of people.
And it is Wednesday and I am still fuming
And Rick, a banner like that on a lot or all PD blogs would help get the blogs in touch with each other too. Not that we need to speak with one voice about everything - on the contrary, Parkieville is bubbling with creativity. But there should be a good big e-mailing list maintained so at least we can signal to each other; especially if the authorities start coming down on us; at least we could spread the word fast.

I should update: the neuroscientist who said we could not dance replied to all of my letters, over 2 years, declared that he is on our side, and apologized to me in writing for having caused any offense or grief by writing what he wrote. Look, I criticized one-half of one sentence in his book, a sentence that was not even about what the book was about, and I hassled him about it with huge long rants and raves. And he took it all and offered his hand and his support. He passed the Litmus Test with flying colors. He is Dr. Daniel Levitin, author of "Your Brain on Music" and "The World in Six Songs".

Paula, I will read the book for sure, but even without it, I know that you are right and they are so very wrong.

Bob,
Many people, some who are on this Forum joined with the GDNF trial participants and with some of the trial doctors to try to get their GDNF treatments reinstated. We fought for many years but sadly we lost. However the Parkisnson communithy learned a lot from this sad saga. We learned that trial participants must be bettter protected -- informed consent protects the sponsor -- not the patient.

Led by the Pipeline Project, a Clinical Trial Participants Declaration of Rights was created-- see the Parkinson Pipeline Project hoempage at www.pdpipeline.org and click on the Declaration. We are looking for help in promoting and implementing it, seeking sponsors who will sign onto its principles.

Many of us believe the GDNF advocates' campaign was important in keeping other GDNF research continuing. Most of the literature now acknowledges the problems in the Amgen GDNF trial design (different doses, catheters and delivery methods between the phase I and II trials ), rather than considering the treatment as a failure. The statistical analysis and the safety issues have also been challenged. We'll never know for sure how many might have been helped.

However, today the interest seems to be mainly in gene therapy delivery of GDNF, and clinical trials are being planned. Other types of delivery systems are also being developed. The tragedy is that both the original trial particiapants and other advanced PWP were denied a tratment that was likely to h elp them.
Like Paula advised, read Nick Nelson's book "Monkeys in the middle.

I was also contacted recently by Gale Publishers who asked to reprint my op/ed about the GDNF trial from the Pipeline website, for a reference book they were publishing on Parkinson's Disease. They present both sides of an ethical issue about PD. The series is geared towards high school and public libraries It has now been published and the sample page is from the GDNF chapter (2). I hope in a small way it will help keep the story alive.
see: http://www.gale.cengage.com/pdf/samples/sp743821.pdf
and the table of contents
http://www.gale.cengage.com/pdf/samples/toc743821.pdf

Linda, you are listed as a junior member; I can scarcely imagine how much the senior members know !
Amazing information on this site.
I was aware that a huge battle had been fought and PWP stood up and spoke and fought, and this has been a great contribution to PWP and to protecting us in the future.
But although I was aware of it, I had no clue what it all involved. There is, as always, a new wave of newly-diagnosed, and they need to know this story so that at least they will carry the memory; at best they will re-start the war against Parkinson's. And win.
As my shaman friend, Darcey Jerrom says, "When someone points at the moon, do not stare at his finger."
The memory and honour of the Parkinson's volunteers is the moon we are pointing at; Amgen will tell people to stare at the finger pointing. But the moon is there, visible to all.

The big problem of my life is that there is no cure for Parkinson's. The big problem they are having at Armgen is that there is no cure for blindness.

I am not looking for anyone's agreement or approval. I have experience in being a minority of one, and it does not bother me a bit.
I don't care what the company says. I don't care what the corporate bio-ethicists say. We can argue the quaint details some other day. You can believe anything you want to believe. I don't care.
All I am saying is, in our little group of PWP, there is a consensus that, if someone says that what was done to the Parkinson's volunteers was routine, normal, acceptable, praiseworthy, and a fine example of how it is always done, RUN AWAY FROM THAT PERSON.
Anybody who flunks the Litmus Test had just better stay away from us. That's all. Having Parkinson's, it is hard enough as it is without being surrounded by predators. I got an e-mail this morning where some tort lawyers want me to join a lawsuit against Mirapex. Sorry, buddy, I loves my Mirapex. But they line up at the door - low-life scumbags taking advantage of our illness to line their own pockets, promising us different forms of salvation. Those drug lawsuits - lawyer's cut is 50 to 75% of the shake-down. It's not funny for very long. Some of us are too ill to have to constantly fight off the packs of jackels that follow you across the desert.
I don't want to even bother arguing against all of that. I am just turning my back on them, that's all. Hey doc, hey Amgen, hey "general population"! You say the Amgen gig was A-OK in Phantasy Pharma Land? Well good for you ! Many a happy massacre may you enjoy. But don't come around my door.
What could be more obvious? If you believe the PD volunteers were well treated or just got what they damn well deserved, I really do not want you taking out my children's tonsils, or delivering my wife's baby, or operating on the part of my brain where 90% of my brain cells are already dead and the other 10% are singing Ozzie Osbourne songs. The person who is going to drill big holes in my head with his trusty Black & Decker Suburban Backyard Drill -- well, you gotta' TRUST that guy. And since the Amgen crime, the trust is gone.
Gonna hafta get marketing to position it - maybe prizes like free trip to Fiji; get Britney Spears to sing "It's not just for old folks anymore" - get it on Twitter and project it as a youthful product. Right now the product has a smelly reputation. Gotta do some ads to make it look like it's for the in-crowd, it's the new wave, it's the cool drug to take.

he subject of Amgen came up on PLM and a PWP actually defended the company and dismissed the video footage as "not impressive." Do you suppose that Big Pharmamight plant shills in PLM? http://www.patientslikeme.com/forum/...ew=last#725362