Welcome to day one of CF Week! Today, we're talking campaigning and the incredible difference your support is making to our fight for a life unlimited.
What's happened so far?
From our heelprick test campaign, which made CF a compulsory part of the newborn screening test in 2007, to our Hope for More campaign, which helped lead to a fairer donor organ allocation system, you’ve been working hard with us on the issues that really matter. You’ve been lobbying your local politicians, handing in petitions to parliament, and helping us to organise important debates.
Through our Stopping the Clock campaign, we’re working with you to ensure that people with CF can access all of the treatments they so desperately need. Access to precision medicines, new treatments that fight the cause and not the symptoms of cystic fibrosis, is our next battle. After successful campaigning by the Trust and the support of the CF community, Kalydeco - a drug that targets gating mutations, which roughly 5% of the CF population have - is now available for the majority of people who need it.
Orkambi, a drug that treats the F508del mutation that around 40% of people with CF have, has been shown to slow the decline in lung function by an average of 42%. And yet, despite being licensed for use in the UK for people with CF over 12, NICE has rejected its use on the NHS on the grounds of cost-effectiveness.
We spoke to Maisie, who has been on Orkambi on compassionate use for almost a year, to find out what the drug has done for her.
Read Maisie's story
What are we doing about it?
On 13 December 2016, we held a parliamentary debate to put pressure on governments across the UK to reach an agreement on Orkambi. Take a look at the five things we learnt from the Orkambi debate.
Unfortunately, negotiations between governments, Vertex and the NHS are not moving quickly enough, and we think this is unacceptable.
How can you help?
On Monday June 26, we’re holding a day of protests across the UK to call on Vertex and the English, Welsh, Scottish and Northern Irish governments to reach an agreement on Orkambi.
Join us on the day in one of our four locations, or take part from home by telling us why you need #OrkambiNow. You can also lobby your local politicians and tell them what Orkambi could do for you, and why it’s so important that the treatment is made available without delay.
Join the fight
Hear from people directly affected by CF about what precision medicines mean to them, and how drugs like Orkambi could change their lives.
Tell me more!
Sign up to our campaign mailing list to find out more about upcoming campaigning activities and how you can get involved!
Don’t forget to check back tomorrow for day two of CF Week, when we’ll be talking research and the impact your support is having on people with cystic fibrosis.
Setting up a regular gift today helps to support our campaigns and ensures we can plan ahead and react to CF breakthroughs as they happen.