Chris Matheson MP has called on Theresa May to take urgent action to allow access to lifesaving cystic fibrosis medicine.
Last year, the Prime Minister 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 the drugs Orkambi* and Symkevi Since then, no resolution has been agreed.
To mark the anniversary of this stalemate, Mr Matheson joined his constituent Zoey Jones and her 12-month-old daughter Eve, who has cystic fibrosis, to hand in 65 yellow roses to Theresa May at 10 Downing Street. ‘65 roses’ is a term sometimes used by children to pronounce the name of the disease.
Chris Matheson said: “I am backing the Cystic Fibrosis Trust’s campaign which calls for access to lifesaving drugs for those with Cystic Fibrosis for my constituent Eve and others who have the condition. Whilst the wrangle between the Government and Vertex continues, children such as my constituent Eve are still without the medicine they need. These negotiations can no longer be about the price of the drug and must start instead to be about Eve and the other children like her.
Today marks a year since Theresa May said she was keen to see a ‘speedy resolution’ in the ongoing dialogue, yet the wait goes on. I have delivered a cross party letter signed by 78 MPs 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.