On Thursday 28 April, NICE met for the final time to discuss feedback received on its interim recommendation not to fund the transformational treatment Orkambi. Here Lynsey Beswick describes her experience as someone who could benefit from the drug, watching from the sidelines as the treatment's availability hangs in the balance.
The assessment of Orkambi® continues today as The National Institute for Health and Care Excellence (NICE) takes evidence from people with cystic fibrosis, clinical experts and the drugs manufacturer Vertex Pharmaceuticals Ltd.
In the lead-up to our day of action for Orkambi on 26 June, we spoke to Maisie, who has been taking the drug on compassionate grounds for almost a year.
The results of the long-running 'Torpedo' clinical trial investigating two different approaches to the eradication of a serious cystic fibrosis (CF) lung infection were published this week. They show that oral antibiotics are as effective as intravenous antibiotics for removing the first infection of Pseudomonas aeruginosa.
We're delighted to have received confirmation from the expedition team Jagged Globe that Nick Talbot has successfully become the first person with cystic fibrosis to reach the top of Mount Everest.
The number of people living with cystic fibrosis (CF) in the UK has risen to 10,500 for the first time, according to new data from the UK CF Registry announced by the Cystic Fibrosis Trust today.
When Pippa Kent received her double-lung transplant last year, she was also given a list of foods that she could no longer eat because of the new drugs she was taking to keep her lungs working. Taking these new restrictions in her stride, Pippa is raising money for her cook book, ‘Now What Can I Eat?’ which will be full of recipes suitable for people taking immunosuppressant drugs. Read on to find out more.
We met with artist Kate Hughes at her new exhibition ‘Island Collaborations’, an art project exploring the environment of people with cystic fibrosis (CF) staying on Foulis Ward at Royal Brompton Hospital in London. Kate, who has CF, collaborated with other people who had stayed on Foulis Ward to create beautiful images, sounds and animations that represent a stay in a typical room on the ward.
After a significant few weeks David Ramsden, Chief Executive at the Cystic Fibrosis Trust, discusses the latest developments in life-saving drugs and how you can help to keep cystic fibrosis (CF) at the top of the political agenda.
