Cystic Fibrosis Trust

Guto has been very moved by the families that he has met in Aberconwy who are campaigning very hard for these drugs to be made available.  The Cystic Fibrosis Trust campaign very hard on this issue and have been very successful in raising the awareness of this issue.  Please share this with your friends and families.  There are people whose lives could be changed by access to this medication.


Press Release from the Cystic Fibrosis Trust


SMC Announcement - 12 August 2019



The Trust are disappointed to hear that the Scottish Medicines Consortium (SMC) have not been able to recommend the routine use of cystic fibrosis drugs Orkambi and Symkevi by NHS Scotland citing that there is not sufficient evidence to justify their cost.

The SMC has said that, having considered the available evidence and the case presented by the manufacturer, Vertex Pharmaceuticals, it does not view the justification of the treatments’ costs as sufficient to be recommended for routine use by NHS Scotland.

Following the advice, the Scottish Government and the drugs’ manufacturer, Vertex Pharmaceuticals, have confirmed they are in advanced talks to negotiate a deal to ensure the widest possible availability of these medicines.

This will come as a disappointment to people with CF and their families, not just in Scotland, but across the UK, where it was hoped this decision would demonstrate to the other three nations that a deal can be done.

The Cystic Fibrosis Trust are responding with a call to the company to take this chance to secure urgent, vital and fair access to their medicines for the hundreds of people living in Scotland with the condition.


Interim access

It has been confirmed that individuals currently receiving Symkevi or Orkambi in Scotland for

example, through the PACS Tier 2 system or on the ‘compassionate use’ scheme provided by the company – will continue to do so.


For those who are not currently receiving Symkevi or Orkambi in Scotland, eligible individuals for either drug in Scotland will still be able to receive interim access and apply through their CF team under the current PACS Tier 2 system until a further deal around access in Scotland is agreed.


We need to see access now. Please lend any support you can and join the Cystic Fibrosis Trust on 27th August for a day of action in on social media and in Paddington, London.