Exactly one year ago since Theresa May told Parliament she wanted a ‘speedy resolution’ to negotiations about access to lifesaving cystic fibrosis drugs, Newcastle North MP Catherine McKinnell has backed a cross-party letter to the Prime Minister calling on the Government ‘to settle this desperate situation’.
The joint letter also calls on the Prime Minister to give an update to MPs on what must happen to bring an end to years of discussions between NHS England, NICE and the drug manufacturer Vertex, so that cystic fibrosis patients can finally have access to two precision treatments, Orkambi and Symkevi, on the NHS.
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.
To mark the anniversary of the Prime Minister’s pledge, the Cystic Fibrosis Trust and CF patients have today handed in the cross-party letter to Downing Street, alongside 65 roses – a term sometimes used by children to help them pronounce the name of their condition.
‘Cystic fibrosis is a life-threatening, life-limiting condition – and CF patients and their families across the country have waited long enough to have access to these lifesaving treatments.
‘The Prime Minister must urgently act on her commitment by working to unblock this stalemate, which is causing those affected by cystic fibrosis so much anxiety and pain. How much longer must they and their families have to endure this cruel wait?’