Richard Benyon, Member of Parliament for Newbury, today raised the case of Tilly Green in the House of Commons.
Tilly suffers from cystic fibrosis and would benefit from accessing the drug Orkambi. Richard was made aware of Tilly’s situation by her parents and through a campaign by year 6 pupils at Bradfield Primary School.
Speaking in the House of Commons, Richard said that the drug is “unfortunately not registered for use by NICE (National Institute for Health and Care Excellence)”. He added that he wanted “to use Parliament to draw out the relatively opaque nature of how NICE decides whether a drug can or can’t be used, which would bring comfort to families like Tilly’s that she might be able to get the treatment in due course”.
Responding, the Leader of the House, Andrea Leadsom, said: “I am grateful to my Hon Friend as I myself have two children in my constituency with cystic fibrosis.
“I know there have been a number of meetings in Parliament with Vertex [the manufacturer of the drug].
“The Government is doing everything it can to find a way through this, but I encourage my Hon Friend and others to keep fighting for access to this drug.”
Richard later said, “I am doing all I can to help Tilly and others suffering from cystic fibrosis. This issue has been raised with the Prime Minister, Health Ministers and with NICE. I hope that sense will prevail.”