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Update: Trust demands action over access to medicine

Following a meeting with Orkambi manufacturer Vertex on Monday, David Ramsden, the Cystic Fibrosis Trust’s Chief Executive, has issued a statement demanding action and backing a community-led petition to the Government.

"Yesterday we met with Vertex Pharmaceuticals, the manufacturers of Kalydeco and Orkambi, to demand that they act now and present a bold deal to make their medicines available across the whole of the UK.  It has now been over two years since Orkambi was licensed for use. It is still not available on the NHS and Vertex last submitted an offer over a year ago.

 “We have met with Vertex a number of times over the last few months and, despite reassurances over progress, we seem to be no closer to a deal being done. Every further day of delay means that damage is being done and lives are being lost that could be prevented.

 “The government has a vital role to play in making these medicines more widely available. We are pleased that there is a new debate being arranged in the Scottish Parliament, engagement from the Welsh Health Minister and that Ian Austin, MP for Dudley North, is chairing a roundtable meeting for England with supportive MPs and Vertex on 28th February. We will use all of these opportunities to demand that a solution is found.

 “The voice of people with cystic fibrosis is vital to ensure that Ministers and decision makers around the UK recognise the fundamental importance of addressing this issue. That is why we support a community-led petition to the UK Government that today stands at over 50,000 signatures. Ensuring access to existing medicines and future treatment innovations is our number one priority and we will not stop until that goal has been achieved.

“We will continue to share updates on Facebook and on our website over the coming weeks. For information and to join our campaigning efforts, please visit cysticfibrosis.org.uk/joinacampaign.”

Find out more about the Trust’s Stopping the Clock campaign and take a look at the latest Orkambi developments in your area.