Orkambi campaign

16th May 2019

The Prime Minister, Theresa May, a year ago today, said she wanted a “speedy resolution”* in the  ongoing negotiations between NHS England, NICE and drug manufacturer Vertex so that cystic fibrosis patients could have access to Orkambi** and Symkevi***. Yet, since then, no resolution has been agreed.

To mark the anniversary of this stalemate, the Cystic Fibrosis Trust and Zoey Jones, and her 12-month-old Eve who has cystic fibrosis will hand in 65 yellow roses to Theresa May at number 10 Downing Street, today (Thursday 16 May).

Alongside the 65 roses – a term sometimes used by children to pronounce the name of their disease - the charity will deliver a cross party letter signed by Sir Mike Penning MP inviting Theresa May to attend a Parliamentary Debate (June 10th) on the issue ***. The letter asks for the Prime Minister to give an update to MPs on what must happen to bring an end to the ongoing negotiations and give cystic fibrosis patients access to these lifesaving precision medicine drugs – Orkambi and Symkevi.

Orkambi is the second precision medicine that targets the root cause of the disease and would benefit around half of people with cystic fibrosis (CF) 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.

Sir Mike said: “I am backing the Cystic Fibrosis Trusts 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 due to be delivered to Downing street today which 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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