My hopes for a better Clinical Study!

All things must change, and the clinical trials must as well -

I know the great men and women at the University of Kentucky were noble doctors,
they wanted us PDers to be well, and we were getting that way.

our dear friends in the infamous GDNF trial -- -they were given terrible operations - shame on AMGEN! boo hiss! and shame on us if we forgetb those
Parkies!!

They endured pain for HOPE. and look what that big Monkey Kevin Sharer did!

he became the judge and declared mistral,
and those of us - who know this
should not let AMGEN get away
we must force them to look at thereality MIRROR -would they like this if they had a loved one involved...
they pulled monkey outta their hats B.S. scam -over money!

I realize I repeat myself -


but sometimes I take a piece of gum and chew on it till the flavor is gone, and chomp somemore till I find a fancy carlot full of fancy Amgen cars - then I'll spit it on the ground so some AMGEN CEO will get it on the bottom of his/ her $ 1500 dollar Italian made shoes..

LOL this is a just thought -ful joke.

anyway
By creating the trust system between clinical trial human being and
And big pharma to make a better business / study = between the common people and the aristocratically formed - the so called class of
"bio -nobles"
presidents and vice presidents - CEO's and FDA

ALL of the Companies in charge of creating a better industry - by creating cultures of caring, and trusting: NOT PHARMA TERRORIST
Let's see if they can become the good guys for a CHANGE - ??

A long long time ago we were told stories about King Author and the Knights of the round table I always hoped they were true
maybe they can be- thus the definition of relating or belonging to the highest social class, especially the nobility/ the elete base, those should not be the kind of people who are born to inherit, but the kind of human beings that inherit those titles by integrity and fortitude, and caring about life.

Technology being the catalyst to heal us, at the least they should make us the people who are patients part stock holders in the Pharmaceutical Companies so if we die so does their stock! or insurance policies if the person should die, and they say so to pull or not to pull the plug, at the patients own
decision.
no cure - no pay?

ideas are seeds -we need seeds that change things for the better, and I would love to hear all the "idea people" - speak up...

Let us not kiss the rear ends of those who could care less,
let them make us happy,

we all die, and my turn is coming - sooner than I know

so with my life - I will refuse to put myself in harms way without a good and binding contract on BigPharma
So that any clinical trial like: the GDNF trial, God Bless the noble patients!!
they will have to make good to those people, I know they have the money, and the drug -just not the heart!!!!!!

or the LAETRILE people did! they all were hopeful... and it cured as well.
and still could.

In 1973 at Kansas University - I was in the 3rd grade, they did not know
how to dose chemotherapy, and my Grandma Nadine who had cancer -
they asked a dying woman if she might participate, it could lengthen her life...
They made no promises at all , and she accepted the drug trial - for it was her last hope...

They injected the chemo in to her - in one big shot. cause of death - (cyanide poisoning)
She died in about 10 minutes, and as she was dying she turned to my Grandpa, and said -
Lloyd I am blind, she was dying, and then she said - I love you,
those were the last words she spoke in this world.
I was 10 years old and I have not forgotten...

I will never forget those who gave their only life to a clinical trial. or a War - this bravery comes with a price. it is called their life.

and if they can treat us humanely, and sign a contract that is better for us,
I would get in line... bvut they must show me how much we can trust them.

That's how many feel Tena; that the informed consent needs to be changed and more binding.

I was watching a news report this morning from the washington Journal and both commentator and interviewee believed patients should have more decision making and risk taking with cancer.

Your grandmother's story is very sad.

paula

thats the way we must be in order to have transparency in clinical trials

no hidden agenda -and no more sham surgeries, - that's progressive!

I found these links:
most of them were originally in swedish but it was connected to the neurogenesis project ...

http://www.novum.se/english/framtiden.php

http://www.stockholmsciencecity.com/en/

http://www.gehealthcare.com/laen/index.html

http://www.q-med.com/

http://www.gyros.com/

http://www.affibody.com/

http://webbhotell.telia.com/niva_standard.html in Swedish?

http://www.astrazeneca.com/

If I could say it more strongly, I would:

It needed saying, Tena, and I'm glad you said it.


Does Roger Perlmutter know he's not one of the good guys any more? Does he know how much we hate what he's doing? He was medical chief at Merck when Vioxx went on the market, at Amgen when their anti-anemia drugs were developed. Only Kevin Sharer was above him when the GDNF trials were halted, sloppy, poorly planned trials that IMHO were meant to fail to use up time on the clock until the patent runs out. One of my doctor friends told me how sickening it was for a doctor he knew to find out from his patients who read it in a newspaper financial section that their clinical trial (of another drug) was halted. If they have any of the drug left, doctors try to taper off their patients' doses as best they can. How does that feel to someone who's taken the Hippocratic oath with sincerity?

I was in the New York court and in the Kentucky court on my own initiative when the hearings were held on the lawsuits of the GDNF patients trying to get the drug back. I have not been to court proceedings before, but as a free citizen I observed as best I could. In New York the case was dismissed a couple of weeks later on a point of law. It appeared to me that the judge was as fair as could be, or at least polite and respectful. In Kentucky the judge openly laughed at the pro bono lawyer, who had one local lawyer helping him. The judge called out the names of some of the eight Amgen lawyers in court, and--I was flabbergasted--introduced them as his old cronies!! He decided that the patients didn't have a contract with Amgen, even though the company had the right to halt the trial at any time for any reason. Key information was contained in the research protocol (a thick document in medicalese and legalese), and he said the patients should have known from that. I don't think patients usually get to see the research protocol! Bad enough to wade through the consent forms and try to find out what rights you have (none, usually).

Well, this is our world and these are the risks. We have been "endowed by [our] Creator with certain inalienable rights," (everyone knows where that's from, right?) but since Cyrus of Persia's generosity in letting the Israelites go back home and rebuild their temple, the nobility doesn't grant rights to peasants. The peasants have to win them again and again.

I have been in istradefylline trials for 2-3 years now, and I'm glad I've helped bring it (soon, I hope) to all of you, WHETHER YOU DESERVE IT OR NOT (there's always someone who wants to be the arbiter of who gets treated and when, but I don't agree with her). I know the risks and I'm taking them, and I pray and hope that Kyowa never halts the trials, which they have the right to do.

Still, I'd rather try out a drug that's expected to help than to self-medicate for unknown results. That's just the way I am.

Enough. I'm sure I'll be back.

GO HARD SCIENCE. Volunteer for clinical trials (drug experiments) and watch out for your rights, and don't sign anything that looks like suicide!

Jaye

Please add clarity to these words...

"...and don't sign anything that looks like suicide!"

Carolyn,

I think there is a fine line between acceptable risk and self harm, and the individual concerned is the only one who can see where their own line is. What I mean is not to agree to anything that might be harmful to you just for the sake of helping the pharma with their experiments. Patients need affirmations of what will be done for them in exchange for the use of their bodies and brains. To balance that is the knowledge that having PD is pretty dangerous, too.

I think that the Patient Bill of Rights Perry speaks of will help individuals get clear in their own minds what they want to do and what questions they may want to ask.

Again, I encourage my fellow patients to participate in research. I just think that the decision to do so is very personal, so don't let anyone pressure you into it unless you feel it's right.

Jaye