I sympathise profoundly with anyone affected by cystic fibrosis and I appreciate the strength of support for making Orkambi available on the NHS. Orkambi has been shown to slow decline in lung function by 42%, and cut the number of infections requiring hospitalisation by 61%. I understand that 240 patients in Scotland could benefit from access to the drug.
As you may be aware, health is a devolved matter in Scotland. The Scottish Medicines Consortium (SMC) has recognised that Orkambi is a beneficial treatment, however has not recommended it for general use in the NHS. The Scottish Government’s Cabinet Secretary for Health and Sport has encouraged Vertex Pharmaceuticals to enter into discussions with NHS National Procurement. These discussions are ongoing and are commercially confidential, however I will monitor developments closely.
I believe that Orkambi is critical because it helps people to maintain life expectancy and a good quality of life. I would like both the Scottish and UK Governments to consider an interim acceptance period for drugs under active price negotiation, when organisations such as the SMC have agreed that there is a clinical benefit.
I also support calls for a closer working relationship between the National Institute of Clinical Excellence in England and the SMC in Scotland to help ensure that those who suffer from Cystic Fibrosis get immediate access.