The parents of a two-year-old girl with Cystic Fibrosis are campaigning to have a new wonder drug made available on the NHS.
Ever since Harriet was born, the youngster has faced a battle for health, first overoming the effects of Meconium ileus - a blockage of the small intestine.
It’s just so frustrating seeing other people around the world being given access to this drug, but here we can’t.Emma Corr
At five days old she underwent an operation to unblock her bowel and it was then her parents were told she had Cystic Fibrosis.
Each day, the youngster, from Wansbeck Road, Jarrow, depends on a variety of drugs to help keep her alive and regular physiotherapy.
However, after researching the disease - which affects a number of internal organs - her parents came across Orkambi.
But, while the drug has passed trials and is available on the market, it is not funded by the NHS.
The drug is said to attack the root cause of CF.
At the moment, medication can only treat the symptoms.
Her mum, Emma Corr, 36, and her husband Chris, 35, were among thousands of people who were part of a protest, held last Monday, in London and Edinburgh organised by on-line pressure group - The CF Community.
They are callingon the government, NHS and Vertex - which makes the drug - to reach an agreement on making the drug available.
Mrs Corr said: “The drug is the first of its kind. Up until now the hospital staff can only treat the symptoms. This drug attacks the root cause of it.
“Harriet will be on drugs for life, but her quality of life would vastly improve and so would the length of time she is likely to live.”
The drug has recently been made available in the Republic of Ireland and Mrs Corr is hoping the UK will follow suit.
She added: “It’s just so frustrating seeing other people around the world being given access to this drug, but here we can’t.
“CF is a progressive disease and young people are dying. So many lives could have been saved with this drug.
“The protests were really good and it was nice to see Jarrow MP Stephen Hepburn speak to the crowds in support of what we are trying to achieve.”
A spokeswoman for NICE said: “Although NICE is very aware of the importance of effective treatments for this condition, the cost of Orkambi, relative to its benefits is too high.
“The door remains open to the company to make alternative proposals and as recently as May this year,
“NHS England offered options which the company may wish to explore, as an alternative to a further submission and reappraisal by NICE.”