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Darren continues to support Bristol’s Cystic Fibrosis patients

MP for Bristol North West, Darren Jones has continued to fight for access to Orkambi for the 10,400 people with Cystic Fibrosis in the UK.

Following multiple communications supported by Darren last year, the MP has co-signed new letters to Vertex Pharmaceuticals and the Secretary of State for Health and Social, Matt Hancock,  requesting both parties urgently sit down together and resolve the negotiations regards Orkambi so those with cystic fibrosis can have access to this revolutionary drug.

Darren said:

“After many, many months of meetings and letters,  it is unacceptable this drug – Orkambi – has been licensed for over four years yet it is still not available for the people in the UK that sorely need it. Median life expectancy for someone with CF is just 47 – in the context of that stark figure four years is harrowingly long to wait. People with Cystic Fibrosis must not have to keep waiting for this treatment to be available.

NHS England and Vertex need to sit down as a matter of the strongest urgency and sort this out and the government should be facilitating that discussion. These delays are causing unnecessary suffering to my constituents and thousands across the country”.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

You can find out more about Cystic Fibrosis and the support available here.