The mother of a young cystic fibrosis sufferer from Fermanagh has joined those campaigning for the drug Orkambi to be made available in the Province for children with cystic fibrosis.
Geraldine Murphy, from Arney, whose eight year old son Daire has CF, explained that she travelled to Stormont on Monday, June 26, as part of a campaign group. She joined parents from all over Northern Ireland, including Fermanagh to campaign for the drug to be made available. She highlighted that protests were held all over the UK that day.
She explained that Daire, she and her husband Joseph’s only child, has the most common gene of CF and says he would be eligible for this drug, which she says is “the nearest thing” to a life-saving drug.
Geraldine believes “there will be never be a cure” and she describes Orkambi as a precision drug which hits the underlying cause of the illness not just the symptoms.
She points out that it was granted in the Republic of Ireland a few months ago and she would like to see it available here.
She feels there are children in Northern Ireland that need it now. “They would really benefit from it now,” says Geraldine, who says “it improves lung function and there are less hospital stays.”
Geraldine says she is aware that there are children doing well on it.
“I know of one child in Tyrone, Rachel McHugh, daughter of Liam McHugh (whom she is pictured with) who is on it,” said Geraldine, who adds that her quality of life has improved significantly.
Geraldine’s involvement in the recent Stormont campaign was part of a countrywide initiative, organised by the Cystic Fibrosis Trust. She acknowledged that Liam McHugh of Castlederg was the leader in the NI campaign. She added that recently a new campaign group, called Now Orkambi NI has been formed.
The Fermanagh mother, who likes her son to lead a full, normal and active life, pointed out: “I am fighting for this drug not only for my child but also for all the other children who are eligible for it right now.”
She stressed: “We need it for the younger children before their lungs deterioriate.”
Geraldine took the opportunity to pay tribute to the Royal Belfast Children’s Hospital, where Daire has received treatment for the last eight years. Describing it as fantastic, she added: “It’s a centre of excellence.”
According to the Cystic Fibrosis Trust, on June 26, protesters wearing oxygen masks gathered outside Stormont “to call for the life-saving cystic fibrosis drug, Orkambi, to be made available on the NHS in Northern Ireland.”
The Trust stated: “Orkambi is one of the only treatments which tackles the underlying cause of cystic fibrosis, a life-shortening genetic condition which causes fatal lung damage.
“Last year, half of all people that died from cystic fibrosis were aged under 30. However, studies suggest that if children start taking the drug early enough they could have a near-normal life expectancy.
“The treatment has been found to extend life expectancy by slowing down lung deterioration in 40 per cent of those with the condition. It’s been licensed in the UK for over two years ago but is still not available on the NHS as governments across the UK and Orkambi’s manufacturer, Vertex, have not agreed on price.”
James Barrow, Head of External Relations at the Cystic Fibrosis Trust said: “Cystic fibrosis is a cruel and life-shortening condition which places a huge daily burden on people living with the disease.
“Orkambi is a major step forward in the treatment of cystic fibrosis which could help people live longer and has the potential to save the lives of thousands in the UK. It deals with the underlying cause of cystic fibrosis and prevents irreversible lung damage, which is especially important for children who stand to benefit from it the most.”
Meanwhile at the March meeting. Fermanagh and Omagh District Council gave its backing to the campaign seeking to have the ‘life-changing’ drug for people suffering from Cystic Fibrosis funded in Northern Ireland.