A DOWNPATRICK couple have vowed to never stop fighting to get life-extending medication for their two year-old son who has cystic fibrosis.
They are urging local politicians and people to voice their support so that the drug Orkambi can be made available on the NHS.
Jen Banks and Dermot Maguire are within weeks of relocating to Co Louth so that their son, Lorcán, can get the drug.
Last month the European Medicines Agency approved the drug for children aged two to five after it was introduced into the Republic of Ireland in 2017.
Once the family are resident in Louth, Lorcán should be eligible to get the medicine from the state which costs £104,000 — or €159,000 — per patient.
The young couple do not want to move away from the support of their family and friends or the medical team in the Royal Victoria Hospital for Sick Children in Belfast who have cared for Lorcán so well.
But they say that time is running out for him.
The toddler is still recovering from the bacterial infection, pseudomonas, which he developed over Christmas and has further comprised his condition.
Jen (34) and Dermot (45) spend considerable time ensuring that Lorcán gets all the treatment and drugs that he needs, while they also care for their seven-month-old daughter, Saorla.
Cystic fibrosis is a genetic condition which affects Lorcán’s lungs and other organs. His parents and medical team are constantly working to ensure his lungs remain as clear of mucus as they can be.
Jen said: “It’s hard to believe when you look at him that anything is wrong as he looks so perfect, but inside him the mucus is causing havoc.
“Dermot and I never expected to becomes nurses as well as parents to our child. We do his treatment willingly but with heavy hearts.
“If the drugs didn’t exist, I think we could just accept things as they are and get on with our lives and make every day count.
“But as it is we can’t rest until we have access to Orkambi and the pipeline of drugs for Lorcán and all the others with cystic fibrosis (CF) here need.
“This situation makes it difficult to enjoy our son without feeling pain at time passing.”
The couple, who live off the Vianstown Road, believe that the sooner their son starts on Orkambi the better.
“Orkambi not only slows the decline in lung function by up to 42%, it also reduces hospitalisations by up to 61%,” Jen explained.
“Every day people go without access to these drugs is a day in which their body could become more damaged. Since he was 14 days old, Lorcán has not had a single day without taking some type of antibiotic, as well as 17 enzymes.”
“Some people [including young children] with CF have to attend the hospital for two weeks of IVs every three months and that’s considered to be ok when there is a drug that could potentially help?”
Families of CF sufferers believe that Orkambi can ‘stop the clock’ on further decline of the patient as they get older.
However, the US drug company which developed it has so far failed to agree a price so that it could be introduced by the UK.
Jen added: “The drugs currently in trials are supposed to give sufferers a chance at a near normal life, but this is partly dependent on them being healthy enough when they begin taking them. There is no time to wait.
“Two hundred and twenty six people have died in the UK since Orkambi was licensed over three years ago. We need Orkambi and we need it now.”
The couple have been lobbying local politicians to get their help at keeping their campaign in spotlight in Government.
Strangford MP Jim Shannon raised the plight of Lorcán at Westminster this week.
South Down MLAs Jim Wells and Sinead Bradley, along with Lagan Valley MLA Trevor Lunn, are planning to host a meeting in Stormont within weeks with Richard Pengelly, Permanent Secretary at the Department of Health in Northern Ireland.
Mr Shannon said: “I was contacted by people throughout Northern Ireland asking me to push government to allow a crown licence for this life-changing drug, as I have been vocal in my belief that this drug should be available on the NHS.
“What impacted me most was a mother in my area who sent me a picture of her beautiful two year-old son with his little mask on, telling me that he was now old enough to get it and it would make such a difference to him.
“I supported the calls for the drug and will continue pushing government to find a way to overcome the issue between the drug company and NICE guidelines.”
While Jen says she has received local cross-party support, she is urging people to sign the petition to government to license the drug in line with 11 other EU countries.
The petition currently needs around 45,000 to reach 100,000 signatures target to be considered for a House of Commons debate and can be found at https://petition.parliament.uk/petitions/231602