Please read the entire post before replying...thanks
Hope I am not throwing myself to the wolves
I have been researching this surgery and have found very little that is available to a non-paying individuals. There is tons in the medical and science journals arguing the pros and cons, but they are only available for a "nice" price, and the abstract is usually two or three useless sentences or non-existant.
If you have any citations that you can provide on the pros and cons of placebo/sham surgery to the brain, please provide them.
I am also curious...and you Pipeliners put down your hands
...just who in the forum is completely educated on this topic. I know many are against it, but can you cite facts as to why you are against it. Yes, I know about risk of infection, allergic reaction to anesthesia and the long list of usual surgical side effects.
It would also be nice to hear from anyone who is for this type of trial, not just those against.
With regard to CERE-120, the physicians/surgeons I have spoken with state that this particular trial can not move forward without the double-blind factor. That it is imperative to measure the placebo effect and this can't be done without the double-blind factor. And, please get past the "they just want to make money and they just want to get paid for being trial investigators." I can't believe that every trial investigator is that greedy.
There are several online references to the sham surgery trials of the late 1990s. In those the placebo effect was quite evident.
Regarding any therapy that comes down the pipeline and requires placebo/sham surgery to the brain (or any other part of the body), now or the future, if the medical and pharma communities refuse to debate the issue with the patient community and believe that an acceptable outcome can not be found without placebo/sham surgery, what then will happen to therapies like CERE-120...the most promising to come through the pipeline (since GDNF)...if patients do not volunteer for the trial?
Do we simply let the "promise" of a better future for the already diagnosed, and those yet to be diagnosed, just go away...get shelved because no one would "test" the product?
Because the consent form issues are not yet resolved between them and us, and the Patient Bill of Rights is not in place, do we go on strike until it is resolved?
Of course, I agree that each and every PWP and the people who love them should be behind improvements to the consent form.
We should all be behind the Pipeliner's efforts to promote the Patient Bill of Rights. (You have no idea how many months of sweat went into preparing that document! No one kept track. In a PWP-effect I suppose the hours are immeasurable.)
We should all adopt the bumper sticker: "If you're not angry, you are not paying attention!"
No I am NOT being naive...I am questioning...as anyone SHOULD DO!!