Manea family welcome MP's support over life-changing cystic fibrosis drugs
A Manea family have welcomed news that MP Sir John Hayes has joined the fight to make a life-changing drug available on the NHS to cystic fibrosis sufferers.
However, Leanne and Charlie Olney say they are seriously considering moving to Scotland if Orkambi is not made freely available when their son, Walter, turns two early next year.
Sir John’s intervention was sparked by the loss of a former family friend, a young mum called Jane, who sadly died before she could become Godmother to his younger son Edward, now 15.
The Olneys are among those hoping Orkambi is made available on the NHS in England - it is already available in Scotland - and they have been campaigning since Walter was diagnosed with cystic fibrosis at just 13 days old.
Leanne explained Walter, who has the most common mutation of the genetic disease, is too young to benefit from specialist medicine right now but they could help him as he grows up.
However, the medication which has been shown to help those with the disease, which is not only debilitating but also life-shortening, is considered too expensive to be freely available on the NHS and is currently only prescribed on compassionate grounds.
"I take that to mean that it is when someone is coming to the end of their life," explained Leanne.
The Scottish Government 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 to both 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.
More by this authorSarah Cliss