Mother says life is 'just beginning' for daughters given access to CF drug

Sisters Fiadh and Caoimhe Ní Luing, from Maynooth, who are set to receive treatment with Kaftrio within days. File picture: Gareth Chaney/Collins

A life-changing move by the HSE to approve a vital cystic fibrosis drug has been welcomed by the mother of two girls who waited almost a year for this decision.

Grainne Uí Luing from Maynooth is now hopeful her daughters, Fiadh (7) and Caoimhe (9), can receive treatment with Kaftrio within days.

“Their lives are just beginning now,” she said.

“All the medication, all the physio, all the antibiotics, all the hospital visits, how do you live? This is simply three tablets a day that is going to completely transform their lives, and our lives as a family.” 

The girls are among 35 children who were last year not deemed eligible for a medication deal between the HSE and pharmaceutical company Vertex.

"It really is very bitter-sweet, I’ve tried to park the anger at what happened to us and just be really happy that we are getting the chance at Kaftrio," she said. 

"They need it, they really do need it.” 

She praised other parent advocates and Cystic Fibrosis Ireland for keeping this in national focus. 

“A lot of parents got this over the line.

“My two kids protested outside the Dáil for their lives. We had to go so public with this which is a really difficult thing to do when you are struggling,” she said.

The girls’ medical team has been “amazing” she said, and has told her to expect treatment to start within two weeks.

“We were doing a study with UCD on the effects of Kaftrio, we were doing that before we found out we were not getting it, and we paused the study then,” she said. "We started back today with the study.” 

However, Ms Uí Luing was disappointed families found out about the decision on social media. She queried why it could not have been communicated directly first.

On Tuesday, the HSE approved Kaftrio for children aged six to 11 who previously fell outside the eligibility criteria, following “robust and lengthy engagements with the drug manufacturer Vertex”.

Cystic Fibrosis Ireland CEO Philip Watt called for pharmaceutical deals to be "future-proofed" to avoid delays. 

In October, doctors with the National Clinical Programme for Cystic Fibrosis said delays were causing “unnecessary suffering". 

Referring to collaboration between stakeholders, they said: “This partnership is under threat, because of the approach of Vertex who we believe are effectively using this group of vulnerable children as pawns in negotiations for greater profit.”