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 Scotland, Wales, Northern 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