Cylert And Meta-issues

The FDA has recently banned Cylert, the only anti-narcolepsy drug that keeps Teresa Nielsen Hayden functional. There are a few meta-issues that seem to be overlooked in the comment thread that ensues.

Meta

Teresa is directing her well-justified anger at Ralph Nader and the Public Citizen's Health Research Group, both of whom called for the ban on Cylert: "Fckng Ralph Nader, fckng Public Citizen". She is critical of Peter Lurie, one of the officers of the PCHRG:

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.

She has identified the problem as a group of people who are working against her ability to take Cylert. But are people really the problem? These people are merely an expected result of winner-take-all dynamics of regulation. If a drug can either be "safe" or "not-safe", and as a result, legal or banned, a powerful incentive is created for interest-groups to form and battle to use regulation to achieve their preferred outcome. It's inherent in the system design. Understandably, a group of people are the proximal target of Teresa's criticism, but the system itself is the meta-problem.

Metameta

Since moving to the blue Northeast a couple of years ago, most of my friends and co-workers are in the left-of-center managerialists in the mold of the Nielsen Haydens (a conclusion drawn, admittedly, from sporadic reading of the blog over the years) and their commenters. Yet, surprisingly enough, some would approach this particular issue in a manner similar to a few of the commenters, concluding that people should be treated like responsible adults, not children. They should have the ability to make choices about what drugs to take, even if there are significant risks associated with them. As Patrick Nielsen Hayden writes in the comments, "doctors and patients should be allowed wide latitude to choose effective treatments from as broad a set of options as possible." Yet, at a more abstract level, the leap to the dreaded M-word is rarely made. The "wide latitude" to make choices is simply a description of a market. When advocates of the free market call for dismantling the FDA or drastically reducing its role to merely an information source, we are expressing support for the "wide latitude" of choices based on individual appraisals of value, safety, and risk tolerance.

Metametameta

Does the "wide latitude" to make choices apply only to drug and health care choices? Or does it apply elsewhere? Teresa writes,

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.

Similarly, there are millions of respectable middle-aged people out there who are responsible with their earnings, yet are not allowed to determine how much money they want to put away for retirement, how much they want to risk, and how much they would rather spend on more immediate expenses. There are millions of respectable middle-aged responsible parents who are denied the choice of where to educate their children in which manner is most appropriate for them. Yet, most managerialist liberals generally are against people making these sorts of choices for themselves.

That mangerialist liberals support a "wide latitude" for individuals to make choices about what sorts of relationships one may engage in, what Gods, if any, to worship, and what to ingest into one's own body, yet are generally intolerant of the same choices in how much to save, how much risk to accept, how much to trade, and how much to spend on what represents, in my view, a deep contradiction.

Lastly, I sincerely hope that Teresa finds a way overcome these obstacles imposed by the government and deal with her condition.

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That mangerialist liberals

That mangerialist liberals support a “wide latitude” for individuals to make choices about what sorts of relationships one may engage in, what Gods, if any, to worship, and what to ingest into one’s own body, yet are generally intolerant of the same choices in how much to save, how much risk to accept, how much to trade, and how much to spend on what represents, in my view, a deep contradiction.

Not to put too fine a point on it, but those managerialist liberals can take their "wide latitude" and stuff that too. Individuals are free to do whatever they want with their property, and don't need the permission of nanny liberals or anyone else to dispose of it.

Stefan: That's fine until

Stefan:

That's fine until you catch a Amoxicillin resistent staph infection because your bobo office mate decided that the best way to avoid getting sick was to take 2 tablets a day every day.

After all, it's his body, and he should have ABSOLUTELY NO RESTRICTIONS about what he does with his body.

And sure, you can (assuming you can prove you got it from him) sue him, but he's got a negative net worth, so you're still sick and having to pay for *really* expensive and nasty anti-biotics.

While I do believe in the "wide latitude" position, there does need to be SOME boundries.

Almost all drugs should be available, most w/out prescription, but some should really only be available with a doctors recomemdation.

Petro: I'll take antibiotic

Petro: I'll take antibiotic resistant bacteria over restrictions on what drugs I can get any day of the week.

And actually, there's not really any evidence that having antibiotics unavailable over the counter helps prevent the formation of antibiotic-resistant bacterial strains anyway, since doctors tend to prescribe antibiotics at the drop of a hat and people frequently stop taking pills once they feel better anyway. The need for educating people about how to take antibiotics exists either way.

It wasn't my doctor who taught me that you need to take the full course of antibiotics. It was Bill Cosby.

THe problem is having

THe problem is having antibiotics that require daily dosing. When the difference between resistance and non-resistance is the reliability of human memory / willpower to do mundane-yet-annoying things, we're all up the creek.

If you could give a delayed-release shot of antibiotic for the "full course" then much of this talk would be moot.

Also, I believe that you can get antibiotics OTC anyway as we speak- just that the counter is at Southern States or the Tractor Co. or some other store that sells animal products. A little math to account for weight differences et voila, you have your own antibiotics on demand...

Petro, I think your example

Petro,
I think your example is flawed. As was mentioned, having a prescription does not stop a patient from taking drugs incorrectly or failing to complete the course of treatment. Nor does it prevent antibiotics from being used incorrectly in the first place or resistance from springing up. Take the case of hospitals: all antibiotics used in a hospital are prescribed by doctors and administered by nurses (so presumably the patient has no opportunity to take them incorrectly), but antibiotic resistance still runs rampant in the health care environment, suggesting that factors unaffected by the prescription system are at work. The externalities of antibiotic use are indeed an interesting subject, but the system of prescription-only drugs does little to eliminate those externalities.

After all, it’s his body,

After all, it’s his body, and he should have ABSOLUTELY NO RESTRICTIONS about what he does with his body.

I think you're catching on.

While I do believe in the “wide latitude” position, there does need to be SOME boundries.

To be decided by you? Please.

Almost all drugs should be available, most w/out prescription, but some should really only be available with a doctors recomemdation.

I don't care what you think should or should not be available, and neither do the patients who want certain drugs. If you want to preach the evils of anti-biotics, fine, but keep your mitts to yourself. Other people are not your property.

It is one of those life boat

It is one of those life boat scenarios, except for real and with the illusory idea that it can be blamed on doctors or someone else. Microbes, which have been around for billions of years will outwit the antibiotics in the end.
We have only had antibiotics for 60 for 70 years. The pipeline for developing antibiotic is running dry. The drug companies don’t even make much money on them. The only way they can make money is to encourage over prescribing. Then you get resistant organisms, so they try to find new ones. Most antibiotics are based on chemicals made by fungi, or other bacteria. There are only so many of these.

Let me try to mold this into a Catallarchy dilemma, though I bet Stefan, Joe or Constant or probably anyone could do a better job. Many people used to die of bacterial infections. Liken the antibiotic to a life jacket. Liken the bacteria to water flooding the life boat. If you take antibiotic you may save yourself but you are doing so at the cost of some future person’s life. This person will die when the bacteria becomes resistant to the antibiotic. The pharmacy companies keep making more life jackets, and in fact profits when someone puts on one or even two, even though he doesn’t need it. If people only took life jackets when they really needed them more people would be saved, but the bacteria would eventually sink the boat. The company is not in the business of saving lives, but is in the business of making money. Eventually the bacteria become resistant to all antibiotics and everyone dies. Whose fault is it, the pharmacy company? The doctors? The bacteria? or the patients who selfishly took the antibiotics? That, children, is our ethical dilemma for the evening.
PS this is what is projected to Tamiflu if there is a bird flu epidemic.

Dave, your example of

Dave, your example of Tamiflu is most pertinent - especially in view of recent comments that it may not be effective.

But then, who is going to sue the makers if it doesn't work?

IF H5N1 mutates to human-human transmission, I will take my chances.

If I am one of the lucky 5%, or 45% or whatever, that survive I will continue to take my chances.

If I am not, I am not going to be worrying about it either... :dead:

Is the problem that the drug

Is the problem that the drug makers no longer make the stuff, deprived of the lucrative US market? Or is the problem that she either needs to go where the drug is, or smuggle some in?
Lots of people, liberals and conservatives, have blinkers and fail to see the world beyond the borders of their own nation-state. These days, that can be fatal. Medical tourism can be an answer to fubar regulated american medical economy.