Woman tells of 'mind-blowing' cystic fibrosis drug

bbc.com

14 points·inm··6 comments

July 2020: https://www.bbc.com/news/uk-england-53247426

Judging by the prices of the individual drugs in this combination therapy, it’s likely priced in the affordable ballpark of $400,000 per year. Happy breathing!

If it's to be recommended for NHS use it can't cost anything like that to us; the maximum threshold for NICE is normally something like £20k-£30k per Quality Adjusted Life Year.

Interestingly, it looks like it hasn't had a NICE recommendation yet, and is currently proceeding under some kind of interim data-gathering agreement (which looks like a political fudge of the cost effectiveness guideline).

The BNF is giving an indicative price of £8346.30 for a month's supply (plus presumably another £7000 for the accompanying ivacaftor alone). Of course, the patient will pay effectively nothing (a prescription prepayment certificate is only £108.10 for 12 months!)

[0]: https://bnf.nice.org.uk/medicinal-forms/tezacaftor-with-ivac...

> Quality Adjusted Life Year

So is it better to live for a few years as a rock star, or for many years as an office worker?

The adjustments are only 'down' from normal, so not as such. I do have some issues with health economics on this, though, as do (for obvious reasons) disability rights people...

Give me many years as an office worker, I don't care being a rock star

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