A Fermanagh mother has talked about her upset and frustration as she and her family watch their son being denied a revolutionary medicine for those with Cystic Fibrosis (CF).

Geraldine Murphy, mother of fun loving nine-year-old D’aire from Arney, described the decision to withhold the drug, Orkambi, from CF patients in the UK as akin to “putting a price on a child’s life”.

What makes this situation all the more difficult for the family is that Orkambi, would be available if they lived just seven miles away in the Republic of Ireland.

“CF patients in 12 other countries in the EU all have access to this drug. And this is a lifesaving drug. This drug treats the underlying cause and not the symptoms. That is what makes it so special and why we need this drug. We feel that it really is a human rights issue,” Mrs Murphy explained.

The family have been put in a horrible situation with the realisation that moving home would get their son the medication they believe would both ‘prolong’ and ‘improve’ his life.

“D’aire is on 30 tablets a day. He needs physiotherapy from myself twice a day to clear the mucus from his lungs. He needs to keep active to help too, and he does. He goes to jujitsu and plays for the Belnaleck under 10 team. He is doing very well at the moment but he still needs this drug because it will both prolong his life and give him a better quality of life,” Mrs Murphy stated before going on to praise the care that her son receives from the Royal Children’s Hospital in Belfast:

“We don’t want to move D’aire’s care from the Royal Children’s hospital. The CF unit there is brilliant and the care D’aire gets is first class. We could move to Swanlinbar but then our clinic would be in Dublin. We want the best for D’aire and the best is for him to be able to be on this life saving drug,”

The National Institute of Clinical Excellence (NICE) have recognised Orkambi as an ‘important treatment’ but crucially have not recommended the drug for use within the NHS on grounds of cost effectiveness and a lack of long-term data.

The decision has led to a campaigns in England, Scotland, Wales and Nothern Ireland to get the drug approved for use with Mrs Murphy believing that the decision to withhold the drug is akin to “putting a price on a child’s life, and that is not right”.

An online petition which has garnered close to 120,000 signatures states that: “Conventional CF treatments target the symptoms of CF, precision medicines like Orkambi tackle the cause of the condition. Though Orkambi is not a cure, it has been found to slow decline in lung function, the most common cause of death for people with CF, by 42 per cent.”

Mrs Murphy is clear what needs to be done and expressed her and her family’s determination to fight to see it approved for use in the NHS: “D’aire is nine now and he is a prime candidate for the drug and we feel very strongly about it. Of course it is frustrating and upsetting but we will fight on. We held a rally on Friday in Belfast and we want to see this drug made available to all those suffering with CF in Northern Ireland”.