To ask the Secretary of State for Health and Social Care, with reference to the draft guidance published by NICE entitled Ivacaftor–tezacaftor–elexacaftor, tezacaftor–ivacaftor and lumacaftor–ivacaftor for treating cystic fibrosis, published on 3 November 2023, whether she has made an assessment of the potential impact of the recommendation that modular therapies should not be provided on the NHS on the health of people with cystic fibrosis.
Answered on
30 November 2023
The National Institute for Health and Care Excellence (NICE) has recently consulted on its draft recommendations on the use of lumacaftor–ivacaftor (Orkambi), tezacaftor–ivacaftor (Symkevi) and ivacaftor–tezacaftor–elexacaftor (Kaftrio) and has not yet published its final recommendations. NICE continues to work with stakeholders to address the issues highlighted by the committee in the draft guidance. Under the terms of the interim access agreement for the cystic fibrosis medicines, Orkambi, Symkevi and Kaftrio, eligible children and adults with cystic fibrosis can continue to receive ongoing treatment and be initiated onto treatment with these medicines, as clinically appropriate, while NICE concludes its evaluation.