A 14-year-old boy with Cystic Fibrosis is being denied a life-altering drug because it is considered too expensive.
Joe Barnes can barely get through a day at school, has problems with his liver and lungs, but can't get prescribed a drug that would increase his quality of life dramatically because it would cost the NHS £104,000 per patient.
The drug, Orkambi, could help Joe's lungs improve, which would mean that he could eat, breathe better and spend less time in hospital, reports the Metro.
The drug company that sells the drug, Vertex, as well as the National Institute of Clinical Excellence (NICE) and the NHS have not been able to agree a deal for the drug that would see it made available to UK patients.
It is thought that Orkambi could radically transform the lives of about 50% of sufferers of CF. It is already available in the US and Europe, but NICE said that they can't recommend it 'based on the evidence and price proposal provided by Vertex Pharmaceuticals'.
Meanwhile, Joe - whose brother also suffers from CF - spends a lot of time in hospital, has diabetes, and is refluxing food into his lungs, making eating very difficult.
His mum Lorraine told The Mirror: "He can't breathe, he feels sick; he rarely makes it through a school day now. His quality of life is almost zero.
"I wish they could see Joe, the people who make these decisions. They think it's about money and resources, but if they could just see Joe lying here, or in hospital on a machine.
"He's so ill, he's like a skeleton. What if it was their child? When you know one small, pink tablet could make such a difference."
"As Joe says: 'The only thing CF doesn't seem to affect is my brain',
"He has diabetes, liver disease. He was refluxing food into his lungs so he had to have an operation to stop him from being sick, but he retches constantly."
For the past two years the families of sufferers including Joe have been campaigning for the drug to be made available. According to the 2014 Cystic Fibrosis Registry Report there are 3,296 people in the UK who could benefit from it.
One person already benefiting from it is 16 year old Jessica Cranfield. She was ordered the drug on compassionate grounds after her mother, Sharon, begged the company to give her it.
Jessica said: "I'm very lucky I've got it on compassionate grounds. Before I had it I couldn't walk from one end of the room to the other. But I wish every person who needs Orkambi could have it."
There is hope, after getting the number of signatures needed there will be a debate in Parliament about whether the drug can become available.
In January, Elle Morris - aged just 11 - died as a result of her illness. Her charity, Elle's Wishes has been leading the charge to get the debate in Parliament.
To show your support for their campaign, tweet the hashtag #OrkambiNow
Featured Image Credit: MirrorPix