A Derry mum has issued a last ditch plea to try and save her infant daughter as a decision looms on cystic fibrosis drugs over the cost of offering them on the NHS.
Laya Barr’s daughter Robyn was born in June and was diagnosed with cystic fibrosis at just two weeks old.
Her child is among those eligible for treatment with a medicinal therapy that could both improve Robyn’s quality of life and add decades to her lifespan – but medical chiefs have said the drugs are too expensive for the NHS to cover the costs.
Read more: Newtownabbey mum hits out at U-turn on cystic fibrosis wonder drug that saved her life
In draft guidance, the UK’s National Institute for Health and Care Excellence (NICE) said the drugs cost too much.
Three drugs – Orkambi, Symkevi, and Kaftrio – have been available to eligible cystic fibrosis patients in the UK as part of a deal reached in 2019 (2020 for Kaftrio) to collect data on their effectiveness.
However, an appraisal by NICE that started in 2022 found that, while clinically effective, the drugs are too expensive.
Laya, speaking to Belfast Live, said if the drugs are withdrawn she may have to prepare to “bury my child”.
“Robyn’s pancreas and digestive system are affected, it’s not just her lungs,” she said. “Nobody sees how careful you have to be.
“There are three drugs within that category. If she doesn’t get this, it will take years off her life. I will only get maybe 20 or 30 years with her, and if she gets the drug she could live until she’s 80.”
She continued: “I know people who had cystic fibrosis and they didn’t live long. Am I going to have to bury my child? I’m 29 years of age and my child might not make it to the same age. She might not be here for her 18th birthday.
“This medicine is my saving grace and they’re taking it away. They’re destroying my family. How can they put a price tag on a child’s life? She is five months old, it’s awful.”
After a recent hospital trip, where Robyn was given antibiotics to help fight a chest infection, Laya said: “I hope to not have to have many more hospital stays with my Wee Woman because watching her like this is devastating. If I have to fight to the ends of the earth to ensure she gets this drug, alongside every other person that is entitled to it, I will.”
In a statement, Northern Ireland’s Department of Health said that “the draft guidance is not Nice’s final guidance”.
A DoH spokesperson added: “The Department of Health has a formal link with the National Institute for Health and Care Excellence (NICE) under which NICE Technology Appraisals are reviewed locally for their legal and policy applicability in Northern Ireland.
“Where found to be applicable, they are endorsed for implementation within Health and Social Care (HSC).
“When final guidance is issued by NICE, the Department will consider it under the usual process for NICE technology appraisals as per the guidance set out in circular HSC (SQSD) 2/13 which is available here.”
Laya Barr is encouraging the public to sign a petition demanding the drugs are made available, which can be found here.
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Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
