B0b, love your title!

paula

First time I have heard any sort of apology from a Pharma:

Firstly, we apologize for the time it took us to respond to your e-mails.


His words are carefully chosen, but this sentence tells me they know what we are talking about, they know what happened "in the past":

We know that patients have been treated with GDNF in the past and that these treatments have stopped.


And I think, or hope, that in response to what happened "in the past", they are re-assuring us that they work with the patients during clinical trials:

we work closely with patients. Their information on diseases and treatments is crucial for us, especially during the clinical trials. Our trials are done according to the highest professional standards and relevant national legislation.

And he signs:
Kind regards,

I think this is a good start. Amgen never wanted to talk to anybody. AMT is very small, and the employees on their website sound pretty dedicated. Am I reading too much into this? What's the next step with AMT? Send them copies of Monkeys in the Middle?

Paula,

I used to be President For Life until friends warned me that it gives the medical industry incentive to make sure that "for life" would be a very short time.
Could never decide if it is the Underground Internet or the Internet Underground.

bob,

Oh they might kill us anyway with some of their products. I don't see any reason to suspect this company altho we wondered about how the GDNF molecule became a GDNF gene. It was considered a molecule in our debacle. maybe someone can explain?

we didn't get too excited about the sale, because it will take the company 15 years or more to get to the market, providing it gets around the placebo effect and chances are quite possible that they will sell the company and then will ths study continue with new owners? and on and on....

i wish there was a way to say something positively about clinical research; if I could think of something i would!

paula

Bob,

Except for the more insulting slander and threats of violence, I like your approach. I am breathless from trying to take in the dignity and kindness of Rob T.A. Janssen's reply. Anyone in the medical field reading this thread must understand that this is the kind of treatment we expect in return for the use of our brains and our bodies. What a class act! I hope it lasts, too.

How can we help him fast-track the project? There must be a few places in the timeline that could be hurried along. A miracle would help. I'll get right on it.

Jaye

Yes, I like their attitude at AMT. Partial litmus test completed successfully. Also, the photos of their employees on their site. Just PR, maybe, but I like what they certainly appear to be as human beings. It looks like they would treat us as if we were human beings too.
A whole new concept in dealing with PWP. Use a little common sense, show a little humanity, and treat us like human beings. Amgen will never figure that out - it requires soul and empathy, which are firing offences at Amgen - but AMT is a very small company where the people know each other, and so far I think they can be trusted; I do not think that they will tell us endless lies like the others do.
Litmus test not complete because they are not free to describe Amgen the way I do. But I am leaning towards saying we should support them instead of asking that they find other, more appropriate employment. I think there is a good possibility they can be trusted to be fair with us.
i don't know any science; I am just checking out who is lurking around GDNF and trying to get a glimpse of how they think the universe functions. So far, AMT has not spit in my face despite a fair amount of verbal provocation from me. They get nasty letters from me and they reply with warmth and kindness. That is what opens doors. I think they can withstand the intense pressures of seeking a cure, and at the same time, avoid treating us like dispensable lab rats.
I have written about 200 individual letters over the past few years, and I got 4 or 5 replies. This is one of the 4 or 5, and the only letter I ever got from a pharma or bio-med group. I say we keep them unless they misbehave.

There is another research team developing a gene therapy treatment with delivery of the GDNF gene by an adeno-associated virus." In mice and monkey models, this vector system has been shown to be effective for long-term delivery of glial cell line-derived neurotrophic factor (GDNF) in the nigrostriatal system."

"Currently in pre-clinical phase, as of March 2009. Research is being conducted by members of the Parkinson's Disease Gene Therapy Study Group, a consortium of 7 research institutions throughout the U.S., funded by NINDS. Dr. Howard Federoff indicated at the PAN Forum in March 2009 that a phase I trial protocol has been approved by the NIH RAC (Recombinant DNA Advisory Committee), and clinical trials might begin later in the year. The delivery system would utilize Convection Enhanced Delivery to distribute the genes efficiently to the targeted areas of the brain."

For more info see the Parkinson Pipeline Project database
www.pdpipeline.org
click on database access.

I don't know what the differences are between the GDNF gene therapy being developed by AMT and that of the NIH group -- but may the best team .... and the patients win this time !

Sorry to intrude on the jubilation, but realistically, Americans no longer trust the government, the pharmaceutical companies and the media. The author of the book is telling the truth. So lets (Parkinson Advocates and some patients) gang up on the pharmacy (Amgen) by making them the evil one. But so many different folks with an agenda to peddle have used the "Real Story" TV programs to get their agenda "across to the public" that these programs no longer have an effect.

The ethicist has a point. We don't know the whole story, but here is an educated guess. Parkinson's is NOT a terminal disease. GDNF, given in higher doses, killed animals. The dosage to the monkeys was larger, therefore the longterm effects came quicker. The patients did have slowed improvement. The monkeys died of brain lesions could have died by overdose, but more likely the effect of the drug, as their symptoms were also noticably improved quicker than the human participants in the study. This being the case, the patients are telling the doctors to allow them to continue a drug that proves to kill (improved life quality but certain death) rather than live with a non-terminal illness and retain the possibility of a future. As a practicing doctor who promises to "do no harm", would you feel your rights as a patient surpasses a doctors' upholding his medical oath? The oath is for the patient's benifit. One exception, and soon another. All mandated by the Food and Drug Administration or National Institute of Health. Where do we draw the line and when do we start trusting again? What has happened to our Nation?

Vicky

Vicky,

There is a lack of compassion factor at work here that is a bigger player than most would suspect. One participant even said, "if they would just have told us; showed some respect. They were so cold."

People who are ill need compassion and that isn't a priority with bottom line people; it can't be. A major conflict. They don't even feel a need to explain, or at least they didn't then.

As for the nation; that would take a book.

two cents,
paula

I love Sticher's quote by Helen Keller in her signature:

"I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker. "~~Helen Keller

Do you suppose it is great because of the person who spoke them or because of the meaning?

We must accept our limitations and respect and trust those who put their training and economic status on the line for our benefit. No amount of compassion will make your illness improve or cure it. Ethics is not about emotions. Ethics is about appropriate behavior. I love Helen Keller's quote because it is ethical not because Helen Keller was deaf and blind. That is what makes her a hero.

Vicky