The View From Your Sickbed

by Patrick Appel

A reader writes:

My 32-year-old daughter, who has classic narcolepsy and cataplexy, lost her job in February due to the economic fallout in construction.  In order to have as normal a life as possible, she takes an expensive drug called Xyrem, which is about $1,300 a month.  Thanks to the stimulus legislation, she has been covered under COBRA.  However, her former employer just changed insurance companies and the new plan requires a co-pay of over $300 a month.  That, plus her portion of COBRA, puts her medical costs at over $450 a month.  The medication makes it possible for her to get a few hours of real sleep at night.  Not like someone without narcolepsy, but certainly, better than before the medication.  Without the medication, she cannot stay awake enough to read, or even concentrate for even 15 minutes.  Without the medication, driving a car is dangerous.  Without the medication, she hallucinates and has sleep fits all day long.  It's kind of a Catch-22.  Without the medication, she could never get and hold a job.  Without a job, she can't afford the medication.