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).
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.
