Families of Cystic Fibrosis sufferers take fight for 'wonder drug' to Westminster
The stalemate between the NHS and pharmaceutical company Vertex was debated in Parliament
Will Ford
John and Francis Binns with their grandson Tristan who suffers from cystic fibrosis.
Families fighting for a wonder-drug to help youngsters with cystic fibrosis have taken their campaign to Westminster.
MPs last week debated the impasse between the NHS and US pharmaceutical company Vertex over the life-saving drug Orkambi - used to treat cystic fibrosis (CF).
Vertex have rejected the NHS's offer of 500 million pounds over five years - the biggest deal in NHS history - and they want them to pay £104,000 per patient.
John Binns, 70, a divisional commander with West Yorkshire Police, who lives in Wooldale, Holmfirth, is guardian for nine-year-old CF sufferer Tristan Scott-Binns.
His other son, Adam, had CF and died from the condition in 1999 when he was 25.
Their fight was raised in Parliament by Colne Valley MP Thelma Walker. The matter was debated for two and half hours with 17 different MPs speaking in favour of the Government stepping in.
Colne Valley MP Thelma Walker accepts a letter from cystic fibrosis sufferer, Tristan Scott-Binns along with his Grandpa John Binns who are amongst thousands campaigning for the cystic fibrosis drug Orkambi to be made available for children with the condition on the NHS.
Mr Binns said: "I feel closer to a result after the support the CF community received in Parliament."
"Thelma Walker's speech was very moving and brought many of us to tears."
Mrs Walker has been key in pushing for the Government to do something about the deadlock between Vertex and NHS England.
She said: "The Government needs to urgently intervene to ensure an agreement is reached that will enable patients, like Tristan, to access the drug without further delay."
Orkambi - the life-saving drug
Only around half of those with the inherited condition live to celebrate their 40th birthday. The drug Orkambi has the ability to 'stop the clock' in sufferers, allowing them to live longer.
A group of parents in the UK have taken matters into their own hands in an effort to get their children access to Orkambi.
The 'CF buyers club' are looking to privately import the drug from Argentina, where Vertex does not hold a patent.
A years supply would cost around £20,000 - a fraction of the £104,000 quoted by Vertex.
Students and staff at Wooldale Junior School are playing their part to support Tristan and other CF sufferers.
They have raised over £2,300 to donate to the Leeds Regional Paediatric Cystic Fibrosis Centre.
Altogether the students and staff ran a total in excess of 200 miles in their 'Team Marathon'.
Mr Binns said: "The unbelievable generosity of families, friends and sponsors was more than we could have hoped for."
More than 70,000 people have signed a petition calling for the drug to be available on the NHS and the Government has responded by urging Vertex to accept the funding offer made by the NHS.
Vertex, which refused a £500m offer for the drug over five years, has said it was determined to find a solution that allows the NHS to provide access to its medicines.
The petition can be found by clicking here
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