Monday, October 13, 2008


The other day, when I was talking to that med student in the pub about narcolepsy, we discussed seeing a neurologist here. As a student, I qualify for the NHS, which means mostly free health care, but with the drawbacks that entails. I've registered with a local doctor here, and to get treatment for narcolepsy, I'll have to get a referral to a specialist from my GP. The thing about the NHS, though, is that there aren't enough specialists on the NHS to meet the demand of patients on the NHS. How long you have to wait to see a specialist depends on the severity of your condition. As my condition isn't severe at all, who knows how long I'll have to wait.

I was just browsing the recent TV listings on Channel 4 on Demand, and saw that there was a special played a few nights ago about narcolepsy. It follows three people from the UK who have severe narcolepsy, who go to a Narcolepsy Network conference in New York. One of the people is a 14-year-old boy who can't stay awake in school. He has to have a care provider wheel him around in a wheelchair at school because he's so prone to cataplexy attacks. At the New York conference, he meets other teenagers struggling with the disease, and almost all of them recommend he take Xyrem, the newest and most promising drug to treat the cataplexy aspect of the disease. This is the drug my doctor recommended I try, before I stopped seeing him. I never did try it, nor did I try anything at all in the nine months before coming to the UK. So anyway, this 14-year-old kid decides to try Xyrem. The narrator says, "In the end, Tony decides to add his name to the waiting list for Xyrem." Hold up there a second. Did you say, "waiting list?" If a 14-year-old kid who has to be wheeled around in a wheelchair with a buckle across his chest so he won't fall out, a clever kid who can't stay awake in class long enough to learn anything, if he has to go on a waiting list to try Xyrem, what chance do I have of getting my hands on it? Guess I'll have to make it through this next year of hard-core studying without it. At least I'm not that bad off. I think I can handle it. I've made it this far without any effective treatment.

Lessons learned:
1) When you have access to treatment, use it. Don't sit around on your hands for nine months feeling sorry for yourself.
2) Universal healthcare is far from perfect.
3) Modern medicine tells us far less than doctors want you to believe.
4) Staying up until 4am, then sleeping until noon, makes Kusems cranky and emotional. And it screws with my sleep cycle, so now I don't want to go to sleep even though it's 10:30.

Also, I suck, because I forgot to wish Katy and Geoff congratulations on my blog for tying the knot! I hope it was lovely! (Someone please give me details of the wedding.)


  1. It was a great wedding! Katy is very creative and I was a little jealous of how nice everything was! I need to throw a party soon; I'm dying to do something crafty.

    Just because you'll have to wait for a long time on those two waiting lists doesn't mean you shouldn't try. It means you should get on them now, the sooner to get the treatments (and you're right that you'll be fine in the meantime since you've been fine all along). As my doctor told me when I was resisting a new type of medication, "You won't MISS your symptoms."

  2. migrainemaven10/13/2008 2:37 PM

    In 2007, the AWP (average wholesale price) of Xyrem was $551/month.

    The manufacturer was fined $20 million by the FDA in 2007 for promotion of off-label indications. It is indicated for cataplexy and excessive daytime drowsiness. (Not for fatigue, weight loss, insomnia, depression, chronic pain, bipolar disorder, or movement disorders.)

    It's also a controlled substance that is illegal in some countries.

    One can see why a specialist consult would be required, as well as why there might be a waiting list.