DISAPPOINTMENT OVER CYSTIC FIBROSIS DRUG DECISION

22nd August 2019

As most of you will know I have been championing access to Orkambi and Symkevi particularly since receiving the devastating news my granddaughter, Saoirse, has Cystic Fibrosis.

Yesterday’s decision made by the Scottish Medicines Consortium to deny access came as a disappointing blow to sufferers and their families. On The Nine last night I discussed my disappointment.

The good news is the Scottish Government remain in discussions with Vertex and I remain hopeful this will result in a positive outcome.

I will be writing to the Health Secretary Jeane Freeman and will continue in Westminster to work with others cross-party to open up access to these life changing drugs in the belief that this situation will be resolved. I’m sure at the end of the day the Scottish government and Vertex can come to some good agreement that will change this disappointing decision made by the Scottish Medicines Consortium.