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Cystic Fibrosis Trust

Join the 27 August campaign rally near Vertex HQ

Join us on 27 August for a campaign rally near Vertex HQ in Paddington, London to remind them and health ministers across the UK that thousands of people’s lives are in their hands and that people are suffering unnecessarily while deals remain undone and they continue to talk.

Join the campaign rally near Vertex HQ

Join our campaign rally from 11am-2pm at the Sheldon Square Amphitheatre, near Vertex Pharmaceuticals HQ in Paddington, London, where we will be calling for the company and heath ministers across the UK to do a deal to make these drugs immediately available on the NHS to the people who desperately need them throughout the UK.

Please dress in yellow on the day. Materials will be provided, and more information about the rally will be shared next week.

We regret that due to the risks of cross-infection people with cystic fibrosis will be unable to attend this campaign rally. Please tweet your support on the day and tell @VertexPharma that we need #LifeSavingDrugsNow

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

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The full story 

This month the Scottish Medicine Consortium (SMC) was unable to recommend the routine use of Orkambi and Symkevi on the NHS in Scotland, adding that the company had failed to justify the price they were offering.

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.

Both the Scottish Government and Vertex Pharmaceuticals made statements on Monday 12 August 2019, confirming that talks to make the drugs available as widely as possible are continuing.

Further talks will, however, provide no comfort or confidence to people with CF and their families who have been forced to wait nearly four years for access to life-saving drugs.

“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.”  David Ramsden, Trust Chief Executive.

Read the full story

Stopping the Clock

Find out more about our campaign to ensure that people with CF across the UK can have access to innovative precision medicines.

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Orkambi is the second precision medicine to be licensed in the UK for people with CF and treats the F508del mutation, which around 50% of people with CF have. It is not currently available on the NHS.

More about Orkambi

Other precision medicines

A double combination therapy and a triple combination therapy are currently being trialed to see how they could help to treat up to 90% of people with cystic fibrosis. Recent results are positive.

More about other treatments