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