Scots to get lifesaving cystic fibrosis drug

Published 12th Sep 2019

Scottish patients with cystic fibrosis will be the first in the UK to get access to potentially lifesaving drugs following a deal between the between Vertex Pharmaceuticals and the Scottish Government.

Last month the Scottish Medicines Consortium ruled there were uncertainties about the long-term health benefits of Orkambi and Symkevi which cost up to £100,000 per year per patient.

Now a five year agreement's been reached with Vertex to supply to NHS Scotland with the drugs which are the first to treat the cause of the condition, rather than just the symptoms.

“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 the 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.”

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. T

he 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.