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Darren supports Cystic Fibrosis Trust’s campaign for Orkambi

MP for Bristol North West, Darren Jones has shared his views on access to Orkambi for constituents with Cystic Fibrosis.

Darren said:

“ I sympathise profoundly with anyone affected by Cystic Fibrosis (CF) and I appreciate the strength of support for making Orkambi available on the NHS, this is demonstrated by an online petition signed by  113,000 people.

In July 2016, the National Institute for Health and Care Excellence (NICE) concluded in its final guidance that Orkambi “could not be considered a cost-effective use of NHS resources” and subsequently did not recommend the drug for use on the NHS. I share the disappointment that will have been felt by many at this decision.

I understand that access to the drug Orkambi can extend the lives of 50% of the 10,400 people in the UK who currently live with CF, with this drug already available in Austria, Denmark, France, Germany, Luxembourg, The Netherlands, Italy, the Republic of Ireland, Greece and the United States.

The Government has welcomed dialogue between the pharmaceutical company, Vertex, and NHS England to agree a deal that would make Orkambi available to NHS patients. I know that the Cystic Fibrosis Trust has been working hard in pushing Vertex to put forward a substantive proposal to NHS England.

Parliament will hold a debate on access to Orkambi for people with CF on 19 March 2018. I will follow the debate closely and keep in mind the points my constituents have raised. In the meantime, I believe it is the responsibility of Ministers to facilitate the end of the deadlock between Vertex and NHS England so that people can access this vital drug and see their lives transformed.

At the General Election I stood on a manifesto that pledged to tackle the growing problem of rationing of services and medicines across England. The manifesto also committed to ensuring that all NHS patients get fast access to the most effective new drugs and treatments, and to insist on value-for-money agreements with pharmaceutical companies”.

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