I’m very annoyed this morning. I hate being annoyed before I’ve even had my tea. But I have reason.
Take a look at this posting over on Making Light / Electrolite, which belongs to Patrick and Teresa Nielsen Hayden. It’ll give you the basic facts.
For those who don’t have time to read the above: Take a moment to imagine that you have a condition that makes you fall asleep abruptly and without warning….while you’re carrying your baby around the house, say, or doing 70 mph down an expressway. Or just sitting still and trying to do your work.
That’s narcolepsy (or a very brief description of what it can be like.) Now imagine that there’s a particular drug that, for you, helps keep the condition at bay — and you have to take that drug because no other has the same effect, or because you’re allergic to the others usually prescribed for the condition.
Now imagine that Ralph Nader and a group called “Public Citizen” get concerned that the drug can cause liver problems, and pressure the FDA to ban it.
And the FDA does.
I sat there for a while this morning imagining what this would be like for me. Well, there goes my personal and professional life. Gee, thanks, Ralph, for coercing someone into deciding what was best for me without even asking! Doesn’t matter that my doctor tests my liver function more often than some people change their underwear, and this drug has worked fine for me for decades (in Patricia’s case, 24 years and change). No, I’m sure it’s for my own good that I can’t get hold of the stuff any more! Guess I’ll just watch the level in that bottle of medication go down, and down…and calculate how much time I have left before I finish the last novel I’ll ever write.
GRR.
(Myself, I find it hard to believe that operations like this one don’t contribute somewhat to the atmosphere surrounding such bannings. (Just look at that banner graphic. “Stand up! Be brave! Do the patriotic American thing, call our toll-free number now, and SUE!”)
Don’t mistake me here. I adamantly support the concept that people who have been injured due to negligence on a drug company’s part should seek and receive fair compensation. (And without the drug company stonewalling them for decades in the hope that they’ll either run out of money and die, thereby dropping the lawsuit.) But in this case the drug companies involved have been quite responsible in warning people that the drug involved, pemoline, can cause liver damage, and that you need to have frequent testing to make sure that this isn’t happening. And the number of cases involved, frankly, is low: even the injury lawyers’ website above can cite only thirteen cases of liver failure attributable to this drug since 1976. Only one of those has occurred since 1999, when the warnings on the drug packaging were stiffened and (theoretically) both doctors and patients got more aware. (A note to one side: judged the same way, the death rate from acetaminophen is higher.)
Yet now the drug has been banned, and the companies involved have stopped production. (Don’t see them doing that with Tylenol, do you? But that would be because a whole lot more people take it, and a whole lot more money is involved.) One press release regarding the issue contains this horrifically dry advice: “Healthcare providers who prescribe Cylert or any of its generic products are being told to transition their patients to a different therapy.”
And what if there isn’t one??
Then you get to fall asleep suddenly and without warning (a) for the rest of your life, (b) until a better drug/therapy comes along. Whenever that might be. If it ever happens.
This is unacceptable. The quality of life for many, many thousands of people depends on this drug right now.
Time to get up off the butt and start making myself a nuisance to my congressfolk and senators, and to the FDA. I hope that some of you reading this might do so too. Please check the comments on that post at Making Light for some extremely useful and cogent info that can help you draft a response.
