A Derry mother has made a last-ditch plea to save her baby girl as a decision on cystic fibrosis drugs looms over the cost of providing them to the NHS.

Laya Barr’s daughter Robyn was born in June and was diagnosed with cystic fibrosis when she was just two weeks old.

Her child is among those eligible for drug therapy which could both improve Robyn’s quality of life and extend her lifespan by decades – but doctors say the drugs are too expensive for the NHS to cover the cost.

Britain’s National Institute for Health and Care Excellence (NICE) said in a draft guidance document that the drugs were too expensive.

Three medicines – Orkambi, Symkevi and Kaftrio – are available to eligible cystic fibrosis patients in the UK under an agreement reached in 2019 (2020 for Kaftrio) to collect data on their effectiveness.

However, a review by NICE starting in 2022 found that while the drugs are clinically effective, they are too expensive.

Laya told The Postedia that she may have to prepare to “bury my child” if the medication is stopped.

Laya Barr and partner David with their daughter Robyn at her christening
Laya Barr and partner David with their daughter Robyn at her christening

“Robyn’s pancreas and digestive system are affected, not just her lungs,” she said. “No one sees how careful you have to be.”

“There are three drugs in this category. If she doesn’t get it, she will lose years of her life. I might only get 20 or 30 years out of her, and if she gets the drug, she can live until she’s 80.”

She continued: “I know people who had cystic fibrosis and didn’t live long. Should I bury my child? I am 29 years old and my child may not be that old. not be here for her 18th birthday.

“This drug is my salvation and they are taking it away from me. They are destroying my family. How can they put a price tag on a child’s life? She is five months old, it’s terrible.”

After a recent hospital stay where Robyn was given antibiotics to fight a respiratory infection, Laya said: “I hope I don’t have to spend many more hospital stays with my little lady because it’s devastating to see her like this.” If I do If I have to fight to the ends of the earth to make sure she gets this medicine, just like everyone who deserves it, I will.

In a statement, Northern Ireland’s Department of Health said that “the draft guidance is not the final Nice guidance”.

A DoH spokesperson added: “The Department of Health has a formal relationship with the National Institute for Health and Care Excellence (NICE), with NICE technology assessments being scrutinized locally for their legal and policy application in Northern Ireland .”

“Where found to be appropriate, it will be approved for implementation in the health and social care sector (HSC).

“When NICE issues final guidance, the department will consider it as part of NICE’s normal technology assessment process, according to the guidance in circular HSC (SQSD) 2/13, which is available here.”

Laya Barr is encouraging the public to sign a petition calling for the medication to be made available. You can find this petition here.

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