Orkambi and Cystic Fibrosis

Douglas Ross Excerpts

Monday 19th March 2018 Westminster Hall

[Paul Scully]

My hon. Friend is absolutely right. It is important, because every day counts for people who have the condition. I said that cystic fibrosis cannot be caught, but neither can it be cured. The people who have cystic fibrosis now will be the same people who have it for the rest of their lives, which basically means that the supply of Orkambi would have a fixed price. We know pretty well, within a margin, how much we would spend on this lifelong treatment.

The current evaluation process turns on an incremental cost-efficiency ratio, which is the total additional lifetime cost of a treatment divided by the additional quality-adjusted life years resulting from that treatment. For acute conditions, the additional quality-adjusted life years resulting from the shorter-term treatments moderate the efficiency ratio, even if the drug is expensive. However, because drugs for chronic and lifelong conditions have to be taken every day for life, the cost of the treatment prevents that downward moderation. Basically, it is easier, under the NICE appraisal system, for medicines for acute conditions to attain a more favourable cost-effectiveness outcome than for innovative medications for chronic conditions, like Orkambi. It is basically a one-size system.

We then have to take into account section 13G of the National Health Service Act 2006, as amended by the Health and Social Care Act 2012, which requires NHS England to have regard to the need to reduce inequalities in health outcomes. Those two imbalances in the system need to be looked at if we are to have a system that is far fairer for people with illnesses such as cystic fibrosis.

[Douglas Ross (Moray) (Con)]

My hon. Friend’s excellent speech rightly focuses on NHS England, but does he agree that there has been a great campaign to get Members from across the country to come to the debate? Some 74 of my constituents signed the petition, because cystic fibrosis sufferers across the UK want action.

[Paul Scully]

I agree. It was a fantastic effort from—it was a remarkable achievement—the petitioners to get 114,000 signatures within 10 days. I have been on the Petitions Committee since its start and, short of having a go at Donald Trump and a few of the Brexit debates, this is one of the most potent petitions, and one of the more productive.