Ahead of last week’s talks between NHS England and Vertex Pharmaceuticals, the UK Association of Cystic Fibrosis Professionals’ Medical group wrote to key decision-makers across the UK to make a clear statement that negotiating access to the latest generation of cystic fibrosis (CF) medicines is an urgent priority.
In letters to Vertex Pharmaceuticals, Health Ministers in Wales and Scotland, the Chief Executive of NHS England and the Head of Medicines Management for Northern Ireland, the group have offered their support to create constructive dialogue and have asked for clarification of what next steps need to be taken.
The letters were supported by the Cystic Fibrosis Nursing Association UK & Ireland, the Association of Chartered Physiotherapists in CF, the Cystic Fibrosis Dietitians Group UK, and the UK Psychosocial Professionals in Cystic Fibrosis Group, and 69 specialist doctors from more than 32 specialist NHS CF centres.
Nick Medhurst, Head of Policy at the Cystic Fibrosis Trust, said: “The message from the teams that care for people with cystic fibrosis every day of the year is clear: now is the time to find agreement and make sure their patients can access the very latest advances in CF medicine. It is critically important that their offer of support is taken up by healthcare authorities so that they can negotiate the best deal for all, informed by expert advice.”
*** Updated 11/15/18 ***
Help us fight for access to precision medicines by joining a campaign.
Sign up to our e-newsletter