Campaigners have handed over a petition to the Welsh Assembly calling for a cystic fibrosis drug to be made available in Wales.

A protest was held in June last year over the lack of availability of the drug, Orkambi.


people could benefit from the drug, Orkambi, in Wales.

The petition was started by Rhian Barrance, from Cardiff, whose best friend has a son with cystic fibrosis.

Cystic fibrosis is a life-shortening, inherited disorder leading to severely reduced quality of life and life expectancy.


people signed the petition calling for the drug to be made available in Wales.

The latest figures show that half of all people who died with cystic fibrosis last year were under the age of 31.Orkambi is said to target the underlying cause of cystic fibrosis.

The treatment was licensed in the UK over two years ago, but is still not available on the NHS.

Handing over this petition is really important and I truly hope Assembly Members sit up and take notice as a pipeline of new precision medicines will be available over the next five years that could really help transform the lives of those with cystic fibrosis. We cannot let them down.

Rhian Barrance

This is a really important moment in our campaign to ensure that new precision medicines concentrating on treating the underlying causes of cystic fibrosis are made available to those who stand to benefit from them. We are grateful so many people signed this petition and sincerely hope this will help us break this tragic deadlock.

Grace Paget, Cystic Fibrosis Trust Public Affairs Officer for Wales

We believe everyone should have access to cost-effective medicines to meet their clinical needs. To achieve this, we are guided by the recommendations of the National Institute for Health and Care Excellence (NICE) and the All Wales Medicines Strategy Group. In June 2016, NICE concluded that it was unable to recommend the use of Orkambi as its considerable cost was not in balance with its likely benefits and it could therefore not be considered a cost-effective use of NHS resources. NICE updated their guidance for treating cystic fibrosis in November 2017 and have not changed their recommendation about Orkambi.

Welsh Government spokesperson