Teresa Nielsen Hayden can't take Cylert (pemoline) any more because the FDA banned it. She, her husband, and their commenters are outraged. I am not.
This isn't some Bush-specific FDA thing. This is what that agency does. It decides whether the benefits of the drug's availability outweigh the risks of that availability. There is no rational standard for such a decision. Whether pemoline causes 193 or 193,000 people to have "serious consequences" as a result of taking the drug, the agency is still treading upon territory that absolutely is not theirs. The choice to take drugs belongs with the individual; the prudent consult experts and consider the potential impact on their health.
The Food and Drug Administration has no right whatsofuckingever to tell Teresa Hayden what drugs she can take; her doctor what drugs to prescribe; and Abbott what drugs to produce. This follows whether a racist warmonger elitist Republican or a pussified gun-grabbing welfare Democrat is in office.
...god knows how many other people with narcolepsy, ADHD, and other tricksy neurochemical impairments are looking at THE END OF OUR FUNCTIONAL WORKING LIVES.
Emailed to Sen. Kennedy and Kerry:
A friend of mine, Teresa Nielsen Hayden, is a narcoleptic. She is functional ONLY because she takes drugs. Cylert has been essential for her, to stay awake, alert, functional, and a productive citizen earning a living and paying taxes.
Ralph Nader's successful campaign to get the FDA to ban Cylert banned is making her a hapless, angry victim and someone who sees dyfunctionality staring her in the face. She's furious. Her husband is furious. Is there ANY way that the FDA's decision can be reversed, to keep her and other who are dependent on that drug to be able to function in society as competent adults with jobs and lives?
From Mrs. Hayden:
Cylert and liver failure: After twenty-plus years on Cylert, my liver is just fine. I don't see why I shouldn't have the option of self-monitoring for symptoms of liver failure plus regular tests. I'd sure like to know whether they've identified any common risk factors in the handful of people who did have liver failure.
By the way: Cylert is old and cheap, a backlist title among drugs. Modafinil is new, heavily promoted, and very expensive. And Modafinil is indeed a swell drug; but it doesn't do what Cylert does.
Fragano, I know all about the FDA's pigheaded attitude toward potentially recreational drugs. Amphetamines are a major component in narcolepsy's pharmacopia. The bleeping FDA gives us and our neurologists a tremendous amount of grief -- this, when a month's worth of the highest dose of Dexedrine I've ever been on is still less than the amount a former speedfreak friend of mine used to take every day.
I've been a fully diagnosed narcoleptic since the early 1980s. I'm a respectable middle-aged editor. All you have to do is take one look at me to know that I haven't been taking speed recreationally. They nevertheless make it damned near impossible for me to get any. Meanwhile, amphetamines are a major industry in rural America.
But abstract that argument and think about it. She's claiming her individuality trumps the collective political will as established by the state because she doesn't meet the criteria that the collective political will has set. Yet, I have no doubt at all that she has taken openly, directly opposed positions to that stance. Ralph Nader and Public Citizen used the political process (threatening lawsuits and going public with "links to" and "risks of" is part of our wonderful system) to screw 10,000 people over. How many thousands and millions are screwed by the other Federal Acronym Monsters with numbing routine and regularity? Do Mrs. Hayden and her sympathizers realize there is an elephant sitting in their living room with ".gov" stamped on its forehead?
No sympathy from me. When the inevitable consequences of your ideology bite you in the ass, you either deal with the pain or change your ideology. Still not convinced?
Peter Lurie did his residency in Family Practice and Preventive Medicine. The fact that he's got the Narcolepsy Network screaming in protest over this action should tell you how wrong he is when he dismisses Cylert as "an outmoded drug." That man has no idea what he's talking about. He can't have asked the narcoleptic community; they'd have told him right off that for many of us, there's no other drug that substitutes for Cylert. This is gross professional irresponsibility. Lurie ought to have his license yanked.
Just some individuals.
And because some screw up, all must be punished via the licensing process.
It doesn't help that she's said something that pissed me off regarding public education and the NEA a while back.
No, Teresa Nielsen Hayden's explosive hypocrisy on this matter isn't going to garner any sympathy from me. I hope she finds a solution to her narcolepsy that allows her to live well.
I also hope she feels this pain sharp and hard, perhaps permanently changing her attitude towards the State in general, rather than just an Administration.
Teresa, even as I feel your pain, I'm wondering if you're going to learn the right lesson. The Cylert ban isn't an accidental failure of the system, it's an essential one. It wasn't perpetrated by villains, but by well-intentioned people working the levers of a system designed to elevate "public safety" above individual choice. That system functioned as designed; it's the design that’s broken.
I may have your politics wrong, and if so I apologize…but my gut reaction when I read your enraged post was "those who live by regulation get to die by it too". Welcome, Teresa, to the ranks of those who have been royally screwed by "good government". You’re now one with every homeowner who’s been raped by eminent domain, every gun owner, and every overtaxed working stiff in the United States.
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