Sat, 09 Mar 2019
A DESPERATE West Berkshire couple are hoping that a ‘wonder drug’ which would revolutionise life for their daughter with cystic fibrosis (CF) can be made available in England.
Bradfield parents Nikki and Ross Green hope the drug Orkambi will be made available on the NHS to improve the quality of life of their daughter, Tilly, 11, who suffers from the genetic condition.
The Government is currently embroiled in a financial battle with Vertex, the US pharmaceutical company which makes the drug, which is already available in several countries, including Ireland, Germany and the US.
Vertex has refused a £500m offer made by the NHS for the drug over five years – with the pharmaceutical giant saying it wasn’t enough.
While it has been licensed for use in the UK, Orkambi is currently only prescribed to people with CF on compassionate grounds.
It comes as an inquiry led by the UK’s Health and Social Care Committee, which is aiming to resolve the stalemate between the two bodies, starts today (Thursday).
Meanwhile, a petition calling for an agreement to be reached has so far been signed by more than 70,000 people.
CF causes fatal lung damage and affects around 10,400 people in the UK.
Only around half of those with the condition live to celebrate their 40th birthday.
Mr and Mrs Green did not know they were carriers of the CF gene until Tilly was born.
Inspired by their daughter’s mature attitude in dealing with the condition, the pair established the Tour de Berkshire nine years ago – an annual charity bike ride which has raised thousands for the Cystic Fibrosis Trust.
Tilly takes about 40 different tablets a day to control her condition – many of which are for her pancreas, which cannot correctly digest food.
She is also prone to infections which, if caught, have a much more severe impact than a child without the condition, as it quickly leads to decreased lung function.
The youngster is a pupil at Bradfield Primary School, where she also has a mini-trampoline which she accesses throughout the school day as part of her physiotherapy programme.
Mr and Mrs Green are desperate for Tilly to be given Orkambi while her lung function is considerably good.
Mrs Green said: “They’re calling it a wonder drug, which would help stop the clock and halt the damage that is done to their lungs.
“It’s not going to cure Tilly, but it will help stop any further damage from being done.
“At the moment, we’ve got to put our faith in this inquiry that is being held and we’ve got to put our faith in the Government doing the right thing and putting pressure on NHS England to make that decision.
“It’s a bit like living on a knife-edge.
“You can think Tilly’s perfectly well and then overnight you can hear her coughing.
“By the following morning, she needs to be on antibiotics pretty quickly.
“Orkambi would mean less infections, which would mean less days in hospital and less antibiotics for her.
“This could give her the normal life.
“She could hold down a job, go to university – have a family. It would be life-changing.”
If no progress is made in the ongoing inquiry, Mr and Mrs Green said they haven’t ruled out a move abroad so that Tilly can have access to the drug.
“If it came down to either life or death for Tilly, we’d do whatever we could,” they said.
To sign the petition urging Vertex to supply Orkambi in the UK, visit https://petition.parliament.uk/petitions/231602