CARLISLE’S MP is set to meet a little girl whose life could be changed by a cystic fibrosis “wonder drug” - ahead of a high-profile debate over its availability.

John Stevenson has arranged to meet cystic fibrosis (CF) campaigner Dave Louden and his four-year-old daughter Ayda, who suffers from the condition, on June 7.

MPs are set to discuss the availability of Orkambi - which has so far been deemed too expensive for funding by The National Institute for Health and Care Excellence (Nice) and NHS England - on June 10.

The drug’s US-based manufacturer Vertex Pharmaceuticals has now been in a deadlock with UK health bodies over the price of the vital drug for more than three years.

Mr Louden, 35, of Sandsfield Park, Carlisle, is keen to stress how important MP support is in applying pressure to all sides in order to find a resolution as soon as possible.

He will also invite Mr Stevenson to take part in the Strawfie Challenge, an exercise which involves breathing through a straw with your nose held to show how difficult it is for CF sufferers to breath when infections and irreversible lung damage occurs.

“I want to ask if he thinks that it is acceptable in this day and age, for a country as advanced and powerful as ours, to allow children to die while a medicine which can save them is waiting on a shelf and even being destroyed rather than used to save lives,” Mr Louden told The Cumberland News.

“Most of all I want him to meet Ayda. I want to show him all of her achievements in life so far even at the age of four. I want to show him that she has dreams and aspirations for the future - a future that she will only be granted if Orkambi and the future pipeline of drugs are made available to her.

“I want to show him how cystic fibrosis not only effects Ayda. A massive amount of people who care for Ayda and want her to remain well. This can happen with access to precision medicines and all these people will be spared the agony of seeing her health decline slowly and painfully.

“This, despite our very best efforts, is the only path in the UK. But it doesn’t have to be that way, and John can help make change happen.”

Mr Stevenson said he will try to attend the debate. He is keen to hear about Ayda’s situation and how Orkambi could benefit her. The MP said the debate which will be an opportunity for ministers to hear firsthand about the potential benefits to individuals and that bringing the matter to the Government’s attention “can only help bring the possibility of the drug being licensed much closer.”

Orkambi is a precision medicine which can slow decline in lung function - the main cause of death for peopel with CF - by 42 per cent.