Health Secretary welcomes cystic fibrosis drug pricing agreement

A five year pricing agreement to supply NHS Scotland with medicines to benefit patients living with cystic fibrosis in Scotland has been secured following discussions between Vertex Pharmaceuticals and the Scottish Government.

Health Secretary, Jeane Freeman, said:

“This is fantastic news for those living in Scotland with cystic fibrosis and their families. This new pricing agreement with medicines manufacturer Vertex Pharmaceuticals, secured by the Scottish Government, will allow more people with cystic fibrosis to benefit from medicines Orkambi® and Symkevi® and live fuller lives for longer.

“The agreement has been reached after extensive discussions between the Scottish Government and Vertex Pharmaceuticals and means the medicines will now be made available to patients on the NHS in Scotland, subject to a confidential discount.”

Background

The five year agreement for the supply to NHS Scotland of the medicines means that clinicians in cystic fibrosis treatment centres can prescribe Orkambi® and Symkevi® to all patients whom they consider will benefit from their use.  It is the first agreement anywhere in the UK that allows these medicines to be available in this way.

Vertex has also undertaken to arrange for data to be collected about the effects achieved by the medicines utilising the UK CF Registry and to resubmit the medicines to the Scottish Medicines Consortium during the course of the agreement.

Cystic fibrosis (CF) is an inherited condition, caused by a faulty gene that affects the movement of salt and water in and out of cells. It causes lung infections, problems with digesting food and many other very difficult symptoms. The condition gets slowly worse over time, with the lungs and digestive system becoming increasingly damaged.  Treatments are available to help reduce the problems caused by the condition and make it easier to live with, but life expectancy is shortened. 

Around 900 people in Scotland live with cystic fibrosis. Of these, about 400 may be suitable for treatment with the new medicines.

The Scottish Medicines Consortium (SMC) is the independent body that takes decisions about the routine availability of new licensed medicines on the NHS in Scotland.  The SMC is independent of the Scottish Government and is a committee of clinicians and other experts.

Previously some Scottish patients had access to Orkambi and Symkevi through the Peer Approved Clinical System Tier 2 (PACS Tier 2), which allows doctors to apply for access on behalf of individual patients.