NHS Scotland to provide £100,000-per-year cystic fibrosis drug

A five-year deal to supply NHS Scotland with cystic fibrosis (CF) drugs Orkambi and Symkevi has been secured after discussions between the manufacturer, Vertex Pharmaceuticals, and the Scottish government.

The agreement, announced on 12 September 2019, means that the medicines will now be made available to patients on the NHS in Scotland, “subject to a confidential discount”, said Jeane Freeman, the Scottish health secretary.

The Scottish Medicines Consortium and the National Institute for Health and Care Excellence (NICE) in England have both ruled that these medicines do not provide sufficient value for money. Announcing its decision in June 2016, NICE said it would cost £104,000 per patient per year to provide Orkambi to CF patients.

NHS England has since held discussions with Vertex about obtaining Orkambi and other CF drugs at a cheaper price. However, in a statement published after the Scottish government announcement, NHS England said Vertex had “rejected the health service’s offer”, which was “the largest offer the NHS has ever made for a treatment of its kind”.

“The NHS cannot offer a blank cheque to an individual company at the expense of our ability to provide a wide range of treatments to as many people as possible,” it added.

The Scottish government estimates that 350 eligible people living in Scotland will have access to the drugs, which can stabilise their lung health and reduce the need for hospital admissions.

NHS England said the NHS “continues to look at, and design, viable alternative solutions to bringing treatments to [people living with] cystic fibrosis”.

David Ramsden, chief executive of the Cystic Fibrosis Trust, described the Scottish deal as a “landmark moment” for people with CF and their families.