I was slurping down my third cuppa while waiting for my resident to finish an evaluation and reading a column by Kristof in the New York Times. It was a commentary on a book which I should emphasize I haven’t read. It’s a rough story, about a child who had some serious problems. Right up at the top was this:
When he was 5 years old, a psychiatrist prescribed Ritalin. As he grew older, he disrupted classes and was given a growing number of potent antipsychotic and other medications.These didn’t work, so he was prescribed more. Pushed out of one school after another, Andrew grew frustrated, unhappy and sometimes alarming. His parents hid the kitchen knives. Then his mother died at 54; the family believes that the stress of raising Andrew was a factor.
The book was by the father of this boy, who is a pharmaceutical company insider. As you might expect by now, things went badly. The child had a rare complication of medication treatment and wound up dying.
Kristof took the pharmaceutical industry to task for a number of things for which I think they richly deserve a task-taking-to. Drug companies are now pushing to be able to market off-label indications, which both Kristof and I think is a bad idea.
A drug is used “off label” when you’re treating a disease or symptom that it wasn’t FDA approved to treat. This happens often in clinical practice, which may sound shocking but is really not so sinister. For example, divalproex is a drug used for seizures. Turns out, it works for manic-depressive illness as well.
Divalproex was on the market a long time to treat seizures. It is neither the safest nor most dangerous drug on the planet. It does have my favorite safety feature: A long, long time on the market. That’s how you find out about the rare, weird complications that don’t show up even in large clinical trials.
There are some weird things about FDA indications. For one thing, a drug that works for many aspects of a disease can have an indication for only one. Divalproex has an FDA indication for treatment of acute mania. However, there’s good evidence that it works to prevent future episodes as well. Now, if you treat someone for mania with divalproex you’re treating for the FDA indication; but if you keep her on it after the mania resolves you’re off-label. Which still is, in my estimation, an evidence-supported strategy.
Back to the article. My reactions were, in rough order:
- Huh. Ritalin. They must have thought he had ADHD.
- Wait a minute, antipsychotics? Multiple antipsychotics? That doesn’t sound like ADHD. This kid sounds like he was pretty sick. Early onset manic-depressive illness? Maybe. Pediatric schizophrenia? Rare as hen’s teeth, but maybe.
- Hiding knives? Frustration? You talk about the family of a child having to hide knives from him like frustration is a reasonable explanation for that?! Are you nuts? Are you listening to yourself?
I’ve often said psychiatrists look at things with a different kind of eyes. In this case, mine were looking for the diagnosis. Kristof’s seemed to be looking for the understandable causes and finding them – a hard time in school and weird drugs, apparently. Mine were seeing nothing at all understandable here.
The trouble with looking for understandable things is that we’re really good at finding them even when there is nothing understandable. You can play a recording backward and hear “Satan wants you to eat your babies” in the static. You can turn a puff of ice crystals in the high atmosphere into a sailboat.
You see, if you’re going to imply something improper in how somebody is treated, and that drug companies are producing that impropriety, and you want to maintain any kind of intellectual integrity, you have to talk about whether the treatment makes sense for the condition being treated. That means you have to know what is being treated. That means listing stigmatized medicines as if that is prima facie evidence of bad treatment doesn’t cut it. That just looks like you’re playing to the “psychiatric medicines are scaaaaaarrrrryyyyyy” crap that all our patients have to wade through on the way to getting adequate treatment.
I don’t want the drug companies to be able to advertise off-label because I think it keeps them halfway honest, and letting them advertise to the general public has been a bloody fiasco. I don’t like the way they influence doctors, and Kristof’s point on how they contributed to the opioid epidemic is solid, though I’m not so inclined to let doctors off the hook on that one.
However, I do not want to be making that argument by talking as if a horribly ill kid was just having a rough time at school. I do not want to make that argument by implying that putting horribly sick kids on medicines by itself is evidence that it is a terrible and sinister thing to put horribly sick kids on medicines. Because that is simply playing into the hands of stigma and ignorance.
- Stop the drug companies advertising, particularly when they masquerade as “education” about illnesses.
- Stop putting the studies for getting FDA indications in the drug companies’ hands, so they’re not about advertising points. For example, can we stop having some company to be able to advertise “The only drug approved for cyanodermia in Malignant Lilluputian Cyanodermia Syndrome” when there are four other drugs that work for the entire syndrome, that don’t have a big manufacturer behind them to do that one targeted study just to be able to make that commercial by getting an FDA indication for that one symptom?
- Following 2 above; how about we start using publicly-funded research to speak to what the best thing is for the patient; rather than just that one more medication works for the disease? For example; which medicine do you start with? Which one do you use when that one fails? We have books full of me-too meds with mostly meaningless FDA indications.
- When well-meaning crusaders start spitting out arguments that reek of stigma and science denial, even when we agree with their goals; disagree with the means while agreeing with the ends, and offer more realistic arguments. Which I just tried to do.