James at a recent protest with the Cystic Fibrosis Trust outside Parliament
James at a recent protest with the Cystic Fibrosis Trust outside Parliament

James Frith MP and a cross-party group of MPs have written to Prime Minister Theresa May urging her to take action to open up access to life saving cystic fibrosis drugs on the NHS, a year after she told James and other MPs she wanted a “speedy resolution” to the ongoing negotiations between NHS England, NICE and drug manufacturer Vertex.

Negotiations have stalled, leaving tens of thousands of people living with Cystic Fibrosis (CF) without access to Orkambi and Symkevi, drugs which have been shown to make significant improvements to the lives of CF patients.

Orkambi is the second precision medicine that targets the root cause of the disease and would benefit around half of people with Cystic Fibrosis in the UK. It has been licensed for use for over three years, but a deal to make it available on the NHS for patients in England, Wales and Northern Ireland is yet to be struck. During that time, a third drug to treat the root cause of the condition, Symkevi, has been approved for use but is also not available on the NHS.

Bury North MP James Frith, who met a Bury woman living with Cystic Fibrosis in his first advice surgery as an MP and has been fighting for access to Orkambi ever since, said:

“I am backing the Cystic Fibrosis Trust’s campaign which calls for access to lifesaving drugs for those with Cystic Fibrosis.

“Today marks a year since Theresa May said she was keen to see a ‘speedy resolution’ in the ongoing dialogue between NHS England and Vertex. Yet, the wait goes on. I have signed a cross-party letter calls on the Prime Minister to act and end the wait for thousands living with this life-threatening condition. We need to see these drugs made available now.”

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