A mother of two children with cystic fibrosis has described the lack of access to a new drug as “complete discrimination”.

The drug, Kaftrio, has been labelled ‘life transforming’ for patients who can get it.

Most cystic fibrosis (CF) patients over six years of age have access to the drug; however, 35 children in Ireland with a rare type are being denied access due to a pricing dispute between the HSE and Vertex, the drug’s manufacturer.

On Lunchtime Live today, mother of two Gráinne said: “Our 35 kids are suffering while they’re having their discussions.”

Eight-year-old Caoimhe and six-year-old Fiadh both have a rare type of CF.

Gráinne said her daughters spend up to 1.5 hours per day on physiotherapy, nebulisers, inhalers and taking medication.

“Fiadh has been struggling for a year and a half now and we’re holding out for this life-changing drug,” she said.

“The girls could simply pick up a book tomorrow and that could land them in hospital for weeks.”

Ó Lúing family. Image: Gráinne Uí Lúing

Fiadh’s health problems are largely internal, which makes gauging her level of wellness difficult.

“At the minute, they’re both coughing a lot; the heat sucked the energy out of them completely and they’re both on antibiotics,” said Grainne.

Fiadh was recently hospitalised for a week due to illness that her mother believes could have been prevented had they had access to the drug.

“We feel that it’s complete discrimination against 35 children and we have no idea why,” she said.

Gráinne said the girls were “the healthiest they’ve ever been” during the pandemic, due to the constant isolation and lack of contact with others.

“Since they went back to school and everything else opened up they’re just been picking up absolutely every bug,” she said

Ó Lúing family

Cystic fibrosis is an inherited disorder that causes severe damage to the lungs, digestive system and other organs in the body.

There is currently no known cure and the health of those with the disease generally deteriorates over time.

“They don’t get better”, said Gráinne. “This drug is going to hold them at their health level now so the longer we wait for the HSE and Vertex to make up their minds, the girls are deteriorating.”

Gráinne has not received any indication of when discussions surrounding the drug's price may be completed.

Listen back to the full interview here.