The Patients are the Problem

I know that everyone who is assuring me that the new inhalers work just fine does not have respiratory disease.  Do you know how I know this?  Because they point to things like this:

Studies show that HFA inhalers are as effective as CFC inhalers and have the same rate of side effects. But if they are not used properly, patients will not get adequate doses. There are three critical differences.

HFA inhalers must be pumped four times to prime them -- a number that was not so critical with the more forgiving CFC inhalers, said Dr. Leslie Hendeles, professor of pharmacy and pediatrics at the University of Florida. And each brand of the newer inhaler requires a different frequency of priming.

HFA inhalers have a weaker spray. "It's very soft so people think it's not working," Dr. Stoloff said. Where CFC inhalers deliver a powerful force that feels as if the airway is being pushed open, the newer ones provide a warm, soft mist that also has a distinct taste.

They also require a slower inhale. "You have to take a nice slow, deep breath and hold it," Ms. Sander said. If people worry that it's not working, they may not take the second puff, may fail to wait the necessary 30 seconds between puffs or may take too many puffs. ,And their anxiety may rise, further constricting their airways.

I invite anyone in the audience to take a "nice slow, deep breath and hold it" with a severely constricted airway.  Every pulmonary patient I know is reporting the same, completely effing obvious problem:  we use these inhalers for emergency relief, when we can't take a slow, deep breath.  If we could take a slow, deep breath, we wouldn't need to use our rescue inhalers.  And since my rescue inhaler no longer works very well, I may have to go on steroids, with all the fun, fun attendant side effects, for better control.

As a side note, that "distinct taste" made me gag the first time I used my inhaler, which of course makes patients reluctant to turn to their rescue inhalers until they really have to.

It would be one thing if this was necessary to save the ozone.  But it's just mindless bureaucratic indifference.  The amount of CFCs used for all pulmonary uses peaked at 1% of total peak industrial output in 1999.  They were not the culprit behind the hole in the ozone layer.  And testing these things on only mild-to-moderate asthmatics for short periods of time, which is all the FDA did before phasing them out, seems borderline criminal.

Finally, saying that the inhalers are just the same except that they require perfect technique is saying that the inhalers are not just the same.  In the real world, it's hard to get perfect technique.  So substituting an inhaler that requires really very extensive maintenance (it needs to be washed every 3-4 uses, primed if it hasn't been used in a while, and the asthmatic needs to master a fairly complex breathing pattern at a time when, I promise you, you do well just to breathe at all) is the kind of thing that only a non-asthmatic would think was a good trade.  Again, if this has to be done to save the ozone layer, fine.  But I don't see that it did; I see that we did something stupid and costly to sick people for no good reason.

Update:  That was intemperate.  But though I regret losing my temper, the point stands.  You see this attitude in IT people a lot.  There's an acronym for it:  PEBKAC (Problem Exists Between Keyboard and Chair), aka an ID10T error.  Some of that is fair--I had a very senior executive once tell me that his voice recognition software was malfunctioning because what he'd expected (from a $65 software package) was something much more like the computer on Star Trek:  The Next Generation.  But it's also a way that developers dismiss crappy UI design.  If most of your users have a problem, then it's the software, not the users, at fault.

Similarly, a medical routine that is hard to comply with is a bad routine.  Sometimes there's no alternative--what CF patients go through I wouldn't wish on my worst enemy, but that's the only way we know to keep them alive.  On the other hand, you don't decide not to give users blood pressure meds because running 10 miles a day would be just as good. A medicine that is easy to use is not the same as a medicine that theoretically gets the same results only if used perfectly every time.

Finally, I think it's worth pointing out what I said yesterday about comparative effectiveness research.  I have been repeatedly blythely assured that the FDA "proved" that the medicines are equivalent.  But a cursory look at the study shows that they were mostly short, small, and covered only mild-to-moderate asthmatics, which seems guaranteed to put the comparison in the best possible light.  Once the FDA had given them the seal of approval, however, they became somehow infallible.