CFI Statement on lack of Orkambi Deal in UK

Statement from Cystic Fibrosis Ireland
Continuing lack of deal for Orkambi in England for people with cystic fibrosis will also impact on Northern Ireland

Date of issue: July 5, 2018

Cystic Fibrosis Ireland (CFI) is very disappointed to learn today (5 July 2018) that there continues to be no agreement for the provision of Orkambi and future cystic fibrosis (CF) drugs in England as negotiations have once again broken down without agreement between NHS England and Vertex Pharmaceuticals, despite a new deal being put on the table.

The failure to find an agreement also impacts on people with CF in Northern Ireland as it has been made clear by the Northern Ireland Secretary of State that they will be guided by decisions on new medications by NHS England. 

Philip Watt, CEO of CFI, stated:

“The absence of an Assembly in Northern Ireland means that there is very limited opportunity for regional pressure to be brought to bear on behalf of patients in Northern Ireland, except by individual politicians and the fantastic work of our colleagues in the UK-based patient group Cystic Fibrosis Trust, including its CEO David Ramsden.

“We know from our experience in Ireland, that CF patients in the UK and their families will feel devastated today by this cruel and harsh decision.

“The decision not to fund Orkambi appears to be final and is all the more inexplicable given the fact that the drug was recently approved in the Netherlands and Sweden. Both of these countries adopted the innovative ‘Irish solution’ of providing Orkambi and providing rapid access to future drugs that are already showing excellent results in advanced clinical trials, as part of the one deal. Sweden, in particular, has a very similar drug approval system to the UK.

“We would call on the Taoiseach, Minister for Health and politicians in the Republic of Ireland and Northern Ireland to speak out and show solidarity on this issue. While this decision will be devastating news throughout the UK for those with CF and their families, it will be particularly devastating for those in Northern Ireland who know that these innovative and ground-breaking drugs are available only a few miles south of the border and our thoughts and support are with them today.”


For more information:

Philip Watt, CEO, Cystic Fibrosis Ireland, email This email address is being protected from spambots. You need JavaScript enabled to view it.  / telephone 087 637 0557

Issued on behalf of Cystic Fibrosis Ireland by Don Delaney, d2 communications, email This email address is being protected from spambots. You need JavaScript enabled to view it. / telephone 087 793 3249

Click here to read the statement issued by CF Trust.