Teresa is Angry, very Angry
Teresa Nielsen Hayden is upset at Ralph Nader to say the least.If Ralph Nader is run over by a beer truck and killed, if a very large meteorite falls on the offices of Public Citizen and vaporizes the lot of them, I won’t feel sorry. Not the least little bit.
I’m too angry right now to even explain why. More on this when I’m not inarticulate with rage.
Patrick, you’re welcome to take a crack at it, if you feel like it. No obligation.
Yup that sounds like some real anger to me. Her husband put it all in context.
She and her husband have every right to be upset, but perhaps the bulk of her anger is misdirected as Eric S. Raymond points out.PATRICK RESPONDS: Okay, this and this.
Cylert (generic name “pemoline”) has been the most effective treatment for Teresa’s narcolepsy in 24 years since she was first diagnosed. She’s been taking it for most of that time. Now it’s gone.
We discovered this when we tried to refill her standard prescription, just before Christmas, and the pharmacy didn’t have any—and, after some confusion, reported back that the wholesaler didn’t have any either, because (surprise!) it’s no longer being made.
Cylert has been implicated in some people’s liver problems. Teresa is regularly tested and her liver is fine. Evidently Abbott, makers of brand-name Cylert, discontinued it in March—but Sandoz intended to keep making the generic version, until the FDA, pressured by Nader’s group, weighed in to discontinue it entirely—despite a last-minute appeal from the Narcolepsy Network. Thank you, Public Citizen, for completely shafting my wife.
But I also think her anger seems curiously misdirected. She’s wishing death on Ralph Nader and his “Public Citizen” group, but it isn’t Nader who banned Cylert. The FDA did that. And it isn’t Nader who has the authority to jail pharmacists who sell the drug and harass companies who make it. It’s the FDA. More generally, what’s at fault here is not just any one pressure group, it’s the entire political system that gives government control of what adults put in their bodies in the privacy of their homes.Its inevitable when the FDA forces a drug off the market that things like this happen. If the FDA doesn't shut down drugs such as this then litagation will. It needs to be fixed, unfortunatly Congress doesn't seem to have the courage to do anything about it.
posted by Liberty @ 9:03 PM
3 Comments:
My anger wasn't misdirected. When Jim Macdonald contacted the FDA to ask how one would go about getting the Cylert ruling reversed, the first-level flak-catcher told him in so many words to contact Public Citizen, saying "They have a lot of influence on FDA policy."
There's something extremely strange about that. The FDA is a major federal agency. They ought not be handing the reins over to such a controversial, secretive, publicly unresponsive bunch of zealots. Furthermore, this is not the first time that PC has meddled, badly, with drugs and medical supplies.
Federal regulation of drugs is not a dumb idea per se. You should read up on what the drug trade was like before it was regulated. The unbridled market is not to human scale, and its long-term corrections will do me no good if I've been done in by bad medications now.
I've been taking multiple prescription medications for more than a quarter-century now. Believe me, drugs are something you don't want idiots messing around with. They're chancy enough on their own. If I could only have one, and my choice was between a federal regulatory agency and a pharmaceutical industry marketing department, I'd take the regulatory agency any day.
Teresa Nielsen Hayden
Making Light
Teresa,
I think you misunderstood what I meant by "misdirected". As you are aware the FDA was heavily influenced by Public Citizen. They should be only one voice. It is up to the FDA to determine how much weight they should have in any input they provide. I do not advocate eliminating the FDA, but they need to use a little more common sense and wigh real scientific evidence with real medical input from the community. It was the FDA that screwed you over. Public Citizen only has the power that the FDA chhoses to give them.
I also believe that once a drug becomes contriversial, litigation can kill it off faster than than the FDA. This is where Congress needs to intervene.
I wish you well Teresa, and you do have my support, you have my prayers.
Best of luck to you
Teresa isn't the only one who is very angry...so am I.
pemoline has worked very well for the subset of Narcolepsy I have.
I can't get any more of it. I am slowly turning into the zombie I was before I started taking this medication in 1985.
No, my eyes & skin have never turned yellow nor am I child.
I have never abused this medicine, in fact I have a hard time remembering to take it at all.
The new drugs don't work for me & one made me want to die....well now I feel that way again. What is the point of breathing when you can only be awake 4-5 hours a day?
I feel I've been handed a death sentence.
I'm going from being so awfully tired & depressed, unable to think or respond to situations to a raging maniac if someone says what I perceive as the wrong thing...just ask my husband who is getting the brunt of my verbal attacks. This isn't a joke to me.
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