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  • Decision means tragic wait for life-saving drugs continues

Decision means tragic wait for life-saving drugs continues

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, announced today, Monday 12 August 2019.

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.

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.

Now 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.

David Ramsden, Chief Executive at the Cystic Fibrosis Trust, said: “The SMC’s advice will come as a shock to people with cystic fibrosis and their families in Scotland. While talk of further negotiation between Vertex Pharmaceuticals and the Scottish Government is positive, people living in Scotland need these life-saving drugs now. The tragic wait has to end and now is the time for the Scottish Government to remain committed and Vertex to do all they can to ensure that this chance does not slip away again.”

What happens if I am currently receiving Symkevi or Orkambi in Scotland

All individuals in Scotland currently receiving one of these drugs – for example, through the PACS Tier 2 system or on the ‘compassionate use’ scheme provided by the company – will continue to do so.

What happens if I am not receiving Symkevi or Orkambi?

If you are not currently receiving Symkevi or Orkambi in Scotland but are eligible for either drug, you will be able to apply through your CF team under the current PACS Tier 2 system.

What does the SMC decision mean for England, Wales and Northern Ireland?

Today’s decision will affect people with cystic fibrosis living in Scotland who will be disappointed that the process has not delivered a positive result to demonstrate that routine access on the NHS is possible. The spotlight is now on the company to agree a fair deal, after the Scottish Government and the company confirmed continuing talks. Talks with NHS elsewhere in the UK will also continue. 

What happens next?

Join us on 27 August for a campaign day to remind Vertex and the Scottish Government that thousands of people’s lives are in their hands and that people are suffering unnecessarily across the UK while deals remain undone and they continue to talk.

Sign up for information on taking part in the campaign day, and raise your voice with us.

Sign up

Further information

Further information can be found on our campaigning pages on our website. You can also contact the public affairs team at publicaffairsteam@cysticfibrosis.org.uk.