We all welcomed the huge breakthrough, back in 2019, to provide the drug Orkambi and other life-extending Cystic Fibrosis drugs on the NHS – a campaign I fully supported.
The great progress in improved access, over recent years, to precision medicines that can tackle the root causes of Cystic Fibrosis (CF) has made a huge difference to many of my constituents living with this condition and been a real relief for their families.
Since 2019, thousands of people with CF have been able to benefit from licensed treatments being made available through the NHS in England. As a result, I fully recognise the disappointment that many people with CF and their families will have felt at the initial decision by the National Institute for Health and Care Excellence (NICE) not to recommend Orkambi, Symkevi and Kaftrio for use in the NHS.
NICE published their draft guidance on 3 November 2023 which does not recommend Orkambi, Symkevi and Kaftrio for the treatment of cystic fibrosis. The draft guidance has recently been subject to a public consultation, which has now closed. I was thankful, however, to learn patients already receiving these treatments will have continued access following the publication of NICE’s final guidance, regardless of the outcome.
NICE’s committee will carefully consider all evidence as well as comments received during the consultation in developing its final guidance, which is expected to be published on 20 March 2024 and which I will read very carefully.
