The Welsh Government has announced this week that patients in Wales should have access to Orkambi and Symkevi: life changing drugs for people with cystic fibrosis.  There is now an agreement in principal on terms with Vertex Pharmaceuticals, which should see highest priority patients accessing treatment in December and all eligible patients being offered treatment from 2020. 

This follows years of work by Janet Finch-Saunders, Assembly Member for Aberconwy, with a number of constituents to see access to Orkambi secured.

Commenting on the Health Minister’s announcement, Janet said:

“I am delighted that Wales is finally catching up with England and Scotland and that my constituents should be able to access Orkambi from as soon as next month.

“Those local residents who I have had pleasure to work with and make representation for deserve thanks for their tireless efforts to see this potentially life changing medicine made available.

“In working to bring the medicine to Wales I have been in contact with the Welsh Health Specialised Service Committee, Mr Gary Doherty, Chief Executive, Betsi Cadwaladr University Health Board, and Vaughan Gething AM, Minister for Health and Social Services.

“This is good news for Wales, but it remains a shame that it has taken so long for the Welsh Government to make a decision.

“There should have been no delay in making this medicine which can slow the decline in lung function, and save lives, available in Wales”.

ENDS

Notes:

Written Statement: Access agreement for the cystic fibrosis medicines Orkambi® and Symkevi®

Cystic fibrosis drug will be available to patients in Wales

Orkambi (96-week data shows that Orkambi can slow decline in lung function - the main cause of death among people with cystic fibrosis - by 42%)