Jeremy has put his name to a letter calling on the Prime Minister, NICE and drug manufacturer Vertex to act to end the wait on access to life saving cystic fibrosis drugs.
The Prime Minister has previously stated her desire to see a “speedy resolution” in the ongoing negotiations between NHS England, NICE and Vertex so that cystic fibrosis patients could have access to Orkambi and Symkevi. At present, 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 handed in 65 yellow roses to Theresa May at number 10 Downing Street. Alongside the 65 roses – a term sometimes used by children to pronounce the name of their disease - the charity has delivered a cross party letter 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.
Commenting, Jeremy said: “I am very happy to support the Cystic Fibrosis Trusts campaign which calls for access to lifesaving drugs for those with Cystic Fibrosis. It is now time for Ministers, NICE and Vertex to act and end the wait for thousands living with this life-threatening condition.”