MP and Spalding family want life-changing medicine made available to cystic fibrosis sufferers
MP Sir John Hayes has joined the fight to make a life-changing drug available on the NHS to cystic fibrosis sufferers.
Sir John's intervention was sparked by the loss of a family friend, a young mum called Jane, who sadly passed away before she could become Godmother to his younger son Edward, now 15.
Among those hoping Orkambi is made available on the NHS in England are the family of Spalding sufferer, Crystal-Jane De-Camps (17).
Crystal-Jane's mum, Louise, said: "It would certainly be of benefit to my daughter because I fundraise all of the time to get this passed in England for her because the drug is hopefully going to give her a better quality of life."
Cystic fibrosis is life-limiting, and chiefly affects the lungs and digestive system. There are more than 10,000 sufferers in England.
Scotland has made Orkambi available to its NHS patients and Sir John wants the same for the rest of the UK.
Speaking in the House of Commons, Sir John referred to Orkambi being potentially a life-saving treatment and "certainly a life-changing one for more than half of those who suffer".
Leader of the House Jacob Rees-Mogg said Orkambi is being discussed by the National Institute for Health and Care Excellence and NHS England to "decide a fair price".
Mr Rees-Mogg said Vertex is the drug company concerned, adding: "I think it would be right to urge it to accept the price that is being offered".
The South Holland and the Deepings MP was in the IT industry before switching to politics and Jane worked for him then, becoming a great friend of Sir John and his wife, Susan.
He said: "I asked Jane to be Edward's Godmother and she said 'as long as you know I won't be there for his 21st birthday'."
Sadly drugs that stopped Jane's body rejecting a lung transplant triggered a fatal illness but she saw baby Edward at her hospital bedside the day before she died.