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Voice of CF community reaches Number 10

Petition increases pressure for an agreement to be reached on precision medicines.

Carly Jeavons with the petition, from left to right with father Bob, son Corey, Darren O'Keefe Public Affairs Manager and Ian Austin MPCarly Jeavons, a young mother with cystic fibrosis, delivered the voice of the cystic fibrosis community to number 10 Downing Street as she handed in our petition, the latest step in the ‘Stopping the Clock’ campaign highlighting the importance of precision medicines for people with cystic fibrosis..

20,000 people signed the petition calling on the NHS across all four nations of the UK and drug companies to take appropriate responsibility to ensure that precision medicines, like Orkambi, are available to those that need them as soon as possible. The Trust also published an open letter to Vertex Pharmaceuticals, the manufacturer of Orkambi, urging it to work with the NHS towards solution. 

Carly, who experienced significant improvements in her health while on the Orkambi clinical trial, was accompanied by her MP Ian Austin who recently led powerful parliamentary debate on access to precision medicines for people with cystic fibrosis.

Darren O’Keefe, Public Affairs Manager at the Trust, said: “The phenomenal response to this petition demonstrates the strength of feeling on this issue. We urge the NHS and Vertex to reach an agreement as soon as possible.”

Next week the Trust will be giving evidence in Scotland on Orkambi. NICE, the NHS body with responsibility for assessing the cost-effectiveness of new treatments in England, will make its first announcement on Orkambi within the next few weeks. The Trust will also be presenting its petition to governments in Scotland, Wales and Northern Ireland.

Lynsey Beswick, Public Affairs Officer at the Trust, spoke to NICE last week about her experience of living with cystic fibrosis. Read about it in her blog.