Thu, 25 Apr 2019
NEWBURY MP Richard Benyon has called on Government leaders to pressurise a major pharmaceutical supplier into making a cystic fibrosis (CF) “wonder drug” available on the NHS.
Mr Benyon raised the issue of Orkambi in Parliament on behalf of Tilly Green, an 11-year-old Bradfield Primary School pupil.
Tilly takes about 40 different tablets each day to control her condition – many of which are for her pancreas, which cannot correctly digest food and is severely prone to infection.
Last month, Tilly’s classmates wrote to Mr Benyon, asking him to help break the impasse between NHS England, the National Institute for Health and Care Excellence (NICE), the Government’s pharmaceutical watchdog, and US drugs giant Vertex, which makes the drug.
The Government is currently embroiled in a financial battle with Vertex, which turned down NHS England’s £500m offer last summer.
Orkambi is already available in several countries, including Ireland, Germany and the US, but plans to bring it to England have repeatedly stalled – with the drug currently only prescribed to people with CF on compassionate grounds.
CF causes thick, sticky mucus to build up in the lungs, digestive tract and other areas of the body.
Those with the condition have an average life expectancy of about 37.
Speaking last Wednesday in the House of Commons, Mr Benyon said: “I’m in consultation with ministers about this [Orkambi], but it would be a great help if there was the possibility of a debate in this house which tried to draw out the relatively opaque nature of how NICE decides whether a drug can or can’t be used.
“It would bring great comfort to families like Tilly’s that she could get the treatment in due course.”
The leader of the House of Commons, Andrea Leadsom, praised Mr Benyon for raising the issue.
Ms Leadsom said: “I know there have been a number of meetings in Parliament between Vertex, the supplier of this drug, and right honourable members, to try and move this forward.
“The Government is doing everything it can to find a way through this, but I do encourage my honourable friend and others to keep fighting for access for this drug.”
Mr Benyon later added: “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.”
Tilly’s mother, Nikki Green, praised Mr Benyon for joining the campaign at a “crucial point” after a recent petition for Orkambi to be made available on the NHS gained more than 100,000 signatures.
It means the issue will now be considered for debate in Parliament.
Tilly added: “By talking about it in the House of Commons, Richard is raising more awareness of the campaign by explaining about myself as a cystic fibrosis patient.
“For the CF community across the UK, the availability of Orkambi is something that my parents and I have been campaigning for a long time now and it’s fantastic to hear that Richard wants to be involved and is supporting us.”