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August 27 campaign rally

Thank you for joining our campaign rally on 27 August in Paddington in person or online, to remind Vertex Pharmaceuticals 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. Take a look at the latest updates below.


Thank you for joining us on 27 August

On Tuesday 27 August many of you joined our campaign rally in Paddington near Vertex HQ to lobby the pharmaceutical company and governments across the UK to do a deal on life-saving drugs for people with cystic fibrosis. Thank you to those who joined in person, as well as those who were unable to attend and took part online by Tweeting Vertex to remind them that people's lives are in their hands.

Letters to health bosses 

After the rally, we sent letters to health bosses in ScotlandWalesNorthern Ireland and England to urge them to finalise talks and reach a deal with Vertex.

Meeting with Vertex

A delegation of Trust representatives, joined by a person with CF and a parent of someone with the condition, also met with Vertex. Watch the update from Nick Medhurst, Head of Policy, and Rebecca Cosgriff, Director of Data and Quality Improvement.

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.

Orkambi

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.

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.