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MP calls for precision medicines for people with cystic fibrosis to be made available in the UK

March 5, 2018 1:22 PM

Tim and David RamsdenSouth Lakes MP Tim Farron has written to the Health Secretary, Jeremy Hunt, urging him to ensures people with cystic fibrosis get access to new precision medicines which are currently available in Europe, but not in the UK.

Last week Tim attended a parliamentary roundtable event to bring together parliamentarians, the Cystic Fibrosis Trust and drug maker Vertex Pharmaceuticals to discuss access to Orkambi and other new precision medicines as they become available.

Orkambi is a precision medicine that around 50 per cent of people with cystic fibrosis in the UK could benefit from.

Half of all people who died with cystic fibrosis last year were under the age of 31.

Orkambi received its European license in November 2015 and in June 2016 the UK based National Institute of Health and Care Excellence (NICE) recognised it as an important and effective treatment. But, despite this, they did not recommend the drug be available on the NHS.

Tim said: "It's simply mad that these transformative drugs are available in Europe and America but are out of reach for people suffering with cystic fibrosis in this country.

"Drugs like Orkambi could benefit thousands of people across the UK including children as young as six, so I fully support the campaign for these drugs to become available as a matter of the utmost urgency.

"People with cystic fibrosis deserve better."