DELAYS in getting a wonder drug to NHS cystic fibrosis patients is “playing with people’s lives”, warned the mother of a toddler with the condition.

Park South mum Carly Read said the drug, called Orkambi, could transform the life of her daughter, three-year-old Emme Collingwood as she grows up.

Last year, the NHS offered US-based pharmaceutical firm Vertex, which makes the drug, £500m over five years for Orkambi and two other cystic fibrosis treatments. The company rejected the offer, although the NHS is understood to have last month gone back to the firm with a new proposal.

The treatment can help keep infected lungs clear of mucus and reduce the risk of infection in people with the most common form of cystic fibrosis.

Carly, 35, said: “This is my daughter’s life. It angers me a little bit when you think drug addicts get their methadone.

“Orkambi is something that will potentially change my daughter’s life and they’re saying no, we’re not going to support you.

“It would change her life. Even though she couldn’t have it until she was six, it would be good to know we could start her on it.”

Last year, prime minister Theresa May promised a debate on the drug and this week wrote to the mother of one girl with cystic fibrosis saying she was “determined to see this resolved as soon as possible”.

But Carly is unimpressed by the delay: “We’re playing with people’s lives. It’s not just a case of this drug being just another treatment for cystic fibrosis. It’s a case of life and death.”

Last night a spokeswoman for NHS England said: “We have made two of the most generous offers of its kind to this company and the quickest way for patients to get access to Orkambi is for Vertex to accept our offer and engage with NICE.

“Vertex is an extreme outlier in both pricing and behaviour, in fact, the pharmaceutical trade body said the current offer represents exactly the sort of flexibility industry wants and warned companies they cannot just pick any price they like for a new medicine.”

A spokeswoman for Vertex said: “We remain highly committed to the negotiations with NHS England and our intensive work continues on a daily basis.”

David Ramsden, chief executive of the Cystic Fibrosis Trust called for action: “This tragic situation cannot continue. Every day the health of thousands of people in this country is deteriorating – and this is damage to their lungs that can’t be undone. Talks between the three parties – Vertex, NHS England and NICE – must result in action.”

DOCTORS spotted that Emme Collingwood had cystic fibrosis weeks after the girl was born, after problems with her bowel saw her go under the knife.

“It was just shock,” said mum Carly Read of the moment she was told her daughter had the lung condition.

“I knew nothing about cystic fibrosis. It’s been a learning curve. Everyday we learn something new.”

Three years on, Emme is a happy toddler – squirming in her mother’s arms as she watches her classmates at Nythe pre-school scamper about the playground.

Dad Adrian Collingwood, 36, said: “She’s very adventurous. She loves adrenaline, climbing up high objects and trying to jump off them. Anything with the fear factor she’s looking at and wanting to do it.”

But Emme has spent more time in hospital than most children her age. She is about to spend two weeks at the Great Western Hospital on an intravenous drip, being treated for an infection.

The tot is fairly self-sufficient, knowing which medicines she needs to take and when: “We didn’t want her to be defined by her cystic fibrosis. At the end of the day, she’s Emme.”

Passionate about cystic fibrosis, mum-of-two Carly had this to say to parents of children newly diagnosed with the condition: “It gets easier. It’s scary and you will ride a rollercoaster of emotions, but it does get easier.”