Breaking news from the Guardian... which doesn't particularly surprise me where Bristol is concerned, but it's very useful to have the figures with which to confirm my suspicions. Although it doesn't necessarily mean that the PCTs who turned down appeals are in the wrong; NICE is there for a purpose, and generally I would back its decisions. But I see its role primarily as ensuring that public money doesn't get wasted on virtually useless products being pushed by big pharmaceutical companies. It gets more difficult when there is clear proof that the drug does have some positive effect, but it comes down to a cost-benefit-analysis, which is roughly based on cost of the drug cf. additional years of quality life. How do you decide whether giving someone an average six months extra is worth £30,000?
The PCT exceptional funding appeals panels are meant to look not at whether someone's personal circumstances are exceptional, but whether their potential response to treatment sets them apart from other applicants. So it's not about whether you've got young children, or have led a blameless life, or whatever (which would get you into very difficult territory); it's about whether you're likely to live longer, respond better, etc. (Correct me if I'm wrong on that, someone).
I had one constituent recently who appealed successfully against being refused the kidney cancer drug Sutent - see my The Drugs Don't Work post from July, and no I didn't really mean that the drugs don't work as one email correspondent thought. On Friday however I was visited at my surgery by another constituent whose father has kidney cancer and is being denied Sutent. The family are faced with selling their belongings to try to fund the drug privately. They could also fall foul of the ridiculous NHS co-payment guidelines, which basically mean that if you pay for the drugs privately, you have to pay for everything privately. (We're doing something about that, thank God, although it won't come quickly enough for my constituent's father.)
Although my constituent's father doesn't live in Bristol, I've said I'll do what I can to support his appeal, along with his own MP. I'm not sure we'll succeed this time, given the NICE interim guidelines. But how do you tell someone what price you think should be put on a year of her father's life?