The 19 November marked 3 years since the licencing of cystic fibrosis precision medicine Orkambi in the UK, yet the drug is still not available on the NHS because NICE, the NHS and the drug manufacturer Vertex have yet to agree a deal to fund Orkambi.
I raised this with the Secretary of State during health questions yesterday, urging him to get all parties in the room and chair a discussion so that an agreement can be reached as soon as possible. This would mean that teenagers with cystic fibrosis, including my niece Maisie, could access the life-changing drugs they need. Sadly, he did not agree to do this, instead suggesting that Vertex had sole responsibility for finding a resolution. Given that Orkambi is already available in many other European countries, I believe the Secretary of State must step up and take more responsibility for the negotiations. I will continue to press him to do so.