Children with cystic fibrosis protest with their parents outside Dáil over shortage of life-changing drug Kaftrio

An independent arbitrator has been brought in to break the impasse between the HSE and makers of cystic fibrosis drug Kaftrio after 35 children – aged six to 11 – were left without the drug.

The families of the children affected by the failure to reach an agreement on the price between the HSE and pharmaceutical company Vertex protested outside Leinster House in Dublin yesterday.

Cystic Fibrosis Ireland is calling for Health Secretary Stephen Donnelly to intervene and says he remains available to discuss concerns with parents of affected children.

The families placed 35 purple roses – the emblem of the cystic fibrosis community – at its entrance, with each rose representing one of the 35 children who were denied the life-changing therapy.

Cystic Fibrosis Ireland CEO Philip Watt said the shortage of the drug was “despite the fact that 140 other children of the same age group are accessing Kaftrio in Ireland right now”.

The cystic fibrosis affecting the 35 children is genetically different from the form affecting the 140 children receiving the drug. The HSE and Vertex “were in dispute over which genotype was included in the original deal,” he said.

Asked about the continued failure to reach an agreement, Health Secretary Stephen Donnelly said families were right to emphasize their children’s needs in order to get the best treatment.

He said the manufacturer had not included the 35 children in the previous deal with the HSE and he wanted to see the matter resolved soon.

Caoimhín Ó Lúing, from Kildare, whose children Fiadh, 6, and Caoimhe, 8, have cystic fibrosis, said: ‘Both have a strict routine of medication, inhalers, nebulisers and nasal sprays, lasting up to an hour each day before school.

“If the girls are unwell, this routine has to be multiplied two or three times, resulting in up to three hours of treatments a day.

“With Kaftrio, we hope the girls will be healthier, stronger and better able to fight off infection. You will be able to live a more “normal” life free from constant restrictions. They are no longer held back by their breathing difficulties and health effects that lead to lengthy hospital stays, lung transplants, kidney transplants, nutritional problems, and digestive problems.

“Kids on Kaftrio are noticing tremendous benefits and positive changes in their lives, health, sleep and endurance. They have reduced the need for medication, physical therapy and hospitalizations.

“The longer we wait for this drug, the more damage will be done.”

Drugmaker Vertex has said it is committed to seeking a “quick fix”. Children with cystic fibrosis protest with their parents outside Dáil over shortage of life-changing drug Kaftrio

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