The Scottish Medicines Consortium (SMC) have not been able to recommend the routine use of cystic fibrosis drugs Orkambi and Symkevi by NHS Scotland citing that there is not sufficient evidence to justify their cost, announced today, Monday 12 August 2019.
NHS England has announced a deal for access to the life-saving drug Kaftrio (called ‘Trikafta’ in the US) on the day it receives its European licence, bringing hope to thousands across the UK.
Today the Cystic Fibrosis Trust launched a new software system for the UK CF Registry, the Trust’s secure database that contains clinical data on thousands of people with cystic fibrosis in the UK who have consented to its use.
Chief Executive of the Cystic Fibrosis Trust, David Ramsden, writes about how the Trust is working to support people with CF from black, Asian and minority ethnic groups and why we want to do it better.
Read an update on the Health and Social Care Committee Inquiry from the Cystic Fibrosis Trust’s Chief Executive, David Ramsden, and find out what the next steps are in the process.
Jacob is 20 years old and is in his third year of an integrated masters in Natural Sciences at Durham University. He is also the first person with cystic fibrosis (CF) to take part in our summer studentship programme where undergraduates work with a supervisor on a project over the summer vacation. Jacob’s supervisor on his studentship was Professor David Sheppard, who is leading our Strategic Research Centre investigating the F508del mutation, which around 90% of the UK CF population carry at least one copy of.
Oli and Mahi matched on Tinder last year. The catch? After talking for a couple of days, they found out they both had cystic fibrosis. Due to the risks of cross-infection, they knew they could never meet, but remained virtual friends. With the release of Hollywood film ‘Five Feet Apart,’ we’re speaking to Oli and Mahi to find out what dating is really like for people with cystic fibrosis and how they handle some of the hurdles it throws up.
The Cystic Fibrosis Trust’s Registry team is currently working on a project to streamline how cystic fibrosis clinics transfer data into the UK Cystic Fibrosis Registry, and how baseline data is shared back to people with cystic fibrosis and their clinical teams. Over a period of a year, Jorge Meira, one of this year’s Darzi Clinical Fellows is working with the team, adding his clinical experience and insight to enhance the project.
