Public Citizen shafts people with Narcolepsy

Misguided activism from Ralph Nader's Public Citizen group has resulted in the withdrawal of a drug that has greatly enhanced some peoples' quality of life. My friend Teresa Nielsen Hayden of the Making Light blog has narcolepsy, and used the drug Cylert to effectively control it, which meant that she no longer fell asleep suddenly when surprised (e.g., when told a funny joke or cut off on the freeway). Having access to good treatment for her condition was the difference between disability and ability.

However, Cylert has been linked to liver problems in some of the people who take it (Teresa gets her liver screened regularly and is not experiencing any problems) and Public Citizen launched a successful campaign to have the drug de-certified by the FDA:

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.


Update: Patrick Nielsen Hayden clarifies:

Cylert/pemoline overcomes the
symptoms of EDS, Excessive Daytime Sleepiness; it allows her to be
normally alert and to have a working life, instead of feeling like
she's been awake non-stop for the last 72 hours. Teresa also has the
falling-over-when-abruptly-surprised symptom you mention; it's called
cataplexy, and it's the other classic symptom of the disorder formally
known as "Polysymptomatic Narcolepsy/Cataplexy Syndrome." But
cataplexy doesn't entail "falling asleep," merely losing muscle
control and falling over. Narcoleptics are generally quite conscious
during cataplectic attacks.

Teresa has always declined the various medications offered to control
cataplexy, on the grounds that she doesn't regard it as a critical
problem and she doesn't need the side-effects. Her position is that if
she can deal with the comic aspects and occasional inconvenience, the
people around her damn well can too. She just wants to be adequately
treated for EDS. Pemoline does that for her in a way that the other
anti-narcolepsy drugs never quite do.