ADHD and narcolepsy sufferers: shafted by Nader
As Teresa and Patrick Nielsen Hayden found out when Teresa went to
renew her prescription:
Cylert (generic name ?pemoline?) has been the most effective treatment for Teresa?s narcolepsy in 24 years since she was first diagnosed. She?s been taking it for most of that time. Now it?s gone.
We discovered this when we tried to refill her standard prescription, just before Christmas, and the pharmacy didn?t have any?and, after some confusion, reported back that the wholesaler didn?t have any either, because (surprise!) it?s no longer being made.
Cylert has been implicated in some people?s liver problems. Teresa is regularly tested and her liver is fine. Evidently Abbott, makers of brand-name Cylert, discontinued it in March?but Sandoz intended to keep making the generic version, until the FDA, pressured by Nader?s group, weighed in to discontinue it entirely?despite a last-minute appeal from the Narcolepsy Network. Thank you, Public Citizen, for completely shafting my wife.
The risks of liver damage that caused Public Citizen to pressure the FDA into discontinuing the drug are small. In an user population of at least 10,000 patients, there’s been only one reported death due to pemoline use since 1999. That’s far less than e.g. those caused by taking overdoses of Tylenol, which is available over the counter.
The trouble with pemoline is that is just not a widely used drug; 10,000 people may sound like a lot, but on a population of almost 200 million people, it is nothing. There is just not enough profit in pemoline for the drugs companies to fight for continued production (the patent has already run out as well) nor are there any large user organisations interested in arguing the drugs corner either. From Public Citizen’s point of view, if I may be cynical, it’s therefore a good target to pick on. By getting it discontinued they score a cheap political victory, they look nice and concerted again to the general public and there’s little risk of a backlash caused by pissed off pemoline users.
Unfortunately for them, as one look at the comments thread on Making Light shows, amongst those users are some very articulated and well educated people, people who know how to publicise this awful FDA decision and how to lobby toget it revoked. As my partner knows from bitter experience if you are articulate and look educated (and especially f you look white, middleclass and educated), you can get a lot more done from medical and governmental bureaucracies…