The Cystic Fibrosis Trust is calling on the NHS across all four nations of the UK, and drug companies, to take appropriate responsibility to ensure that precision medicines are available to those that need them as soon as possible. You can help shout louder by adding your name to the petition.
Currently, four per cent of people with cystic fibrosis receive a precision medicine. More than 90 per cent of people with cystic fibrosis could benefit from similar treatments by 2020.
Last year, Orkambi, a drug that treats the most common mutation that causes CF, was granted regulatory approval and is now due to be appraised for cost-effectiveness by NHS bodies across the UK. Since then, 1,500 people with CF, and families, took part in the Trust’s survey about what precision medicines mean to them, which laid the groundwork for a powerful digital debate in Parliament.
Sophie Vickers, who appeared in the Trust's video
about what precision medicines like Orkambi could mean to people with cystic fibrosis, said: “[Drugs like] Orkambi would mean less time in hospital, less time focussing on just health and medication and exercise.
“It would give me a chance to breathe, and enjoy my life – just get on with things like a normal person, without all of these disruptions.”
Darren O’Keefe, Public Affairs Manager at the Trust, said: “The petition is a vital next step in our campaign. At this critical time, it will highlight how important access to life-changing treatments is for everyone with cystic fibrosis.”
The petition is now closed. Thank you to everyone who signed and shared the petition. Check out the Stopping the Clock campaign to find out more about how you can help the Trust’s fight for access to precision medicines for everyone with cystic fibrosis by 2020.