Yesterday’s debate in Westminster Hall on access to Orkambi for people with cystic fibrosis (CF) demonstrated once again the incredible force of the CF community. Fresh from the action, Lynsey Beswick, Public Affairs Manager at the Trust, presents a firsthand account of a unique and emotional event.
Looking for resolution inspiration this January? Padraic McGlinchey is dispelling the rumour that you can’t do things by halves by running and rowing a half marathon a week for a year to raise money for the Cystic Fibrosis Trust.
In late December 2018, NHS Scotland and Vertex Pharmaceuticals reached a deal on access to precision medicines through a system called PACS Tier 2. Find out how this system works and what it could mean for people with CF in Scotland.
Ahead of Monday’s debate in Parliament on access to Orkambi, Paul Scully MP, Kate Anderson from the petitions committee and Alasdair Mackenzie, Community Outreach and Engagement Manager at Parliament, came into Cystic Fibrosis Trust HQ to get us up to speed. Oli Lewington, Director of Engagement at the Trust, sets out what went on at the meeting and what happens next.
Following last week's update from Vertex in response to a direct request from the Trust, Lynsey Beswick, Public Affairs Manager for the Trust, presents an overview of recent discussions between the NHS and Vertex, and a potential solution to end the agonising wait for people with cystic fibrosis (CF).
