CHArLIe’S Story
A MOTHER said that the drugs stalemate is “putting a price” on her son’s life.
Michelle Foster claimed Vertex executives should be locked in a room with NHS chiefs until they thrash out as deal for Orkambi.
Her son Charlie, six, was diagnosed with cystic fibrosis when he was only three weeks old. He has suffered a bug in his lungs six times, each causing fortnight stays in hospital for intravenous antibiotics.
Charlie has twice-daily physio, three nebulisers a day, 10 tablets and vitamins. The family of Blyth, Northumberland, are desperate for him to receive the wonder drug but they are devastated he cannot get it on the NHS.
Mother-of-three Mrs Foster, 43, said: “My only wish is for a cure to be found for cystic fibrosis so Charlie can live a life unlimited. But until that day happens we’d be so grateful if Vertex gave us Orkambi.
“Yet this stalemate over the drug means people are literally putting a price on my son’s life and it’s not right.
“He is a normal six-year-old boy with an attitude but also full of energy. Cystic fibrosis has always been a massive part of his life.
“He has now started asking when he can stop taking the tablets and I say ‘hopefully one day’. It melts my heart because he is sick of it.”
Mrs Foster, backing the campaign, said: “I want Charlie to have a chance to live a long and healthy life.
“All the executives involved in the Orkambi stand-off need to be locked in a room and told ‘you’re not leaving until you reach an agreement.’ They might sort it out then.”