The parents of children with cystic fibrosis have urged the Government to provide their children with the “transformative drug” Kaftrio.
The drug has been approved for people aged over six-years-old by the European Medicines Agency and has been found to improve lung function in studies of cystic fibrosis patients over the age of 12.
Dozens of children in Ireland have been denied access to the drug and on Monday afternoon hundreds gathered outside Leinster House to support them.
“For some reason, in the contract that was drawn up with the pharmaceutical company about three years ago, children between six and 12 were excluded,” Luke, whose son, Matthew, has cystic fibrosis, explained to Lunchtime Live.
“We’re not sure why they were excluded, whether it was a mistake in the contract or what but it’s left us in this situation.”
Matthew is currently 10 and will be given the drug when he turns 12. However, Luke wants him to be prescribed it now.
“The drug will maintain Matthew’s lungs and body when he’s on the drug but it won’t repair any damage that’s done to his lungs between now and when he turns 12,” he continued.
“It won’t repair any damage that’s done to his bowels or his pancreas because of cystic fibrosis.”
The drug costs €150,000 a year but Luke says it will save the health service money in the long-term.
“When Matthew gets a cold, Matthew does two weeks in an isolation unit,” he explained.
“Those two weeks alone are about €150,000 and he will do that upwards of three times a year - depending on what type of year he’s had.
“He can be quite lucky when he’s not been in school a lot and he hasn’t picked up any kind of colds or coughs or things like that.
“But when he has a bad year he can go in for a good few operations, he can go into the isolation units for weeks.
“CF patients - especially kids - can be in there much of the time.”
Sign for the Irish Health Service Executive (HSE) - Feidhmeannacht na Seirbhise Slainte'This amazing, transformative drug'
Julie’s daughter Aisling is 10 and she too is desperate to get her child a Kaftrio prescription.
“This is a complex illness to deal with and we were told that Aisling and the other children were getting this,” she said.
“We were told they were finally, finally getting this amazing, transformative drug and then we were told a few weeks later that she wasn’t.
“She was due to start it in May - the same as the other 34 children - so from our point of view we’re now on day 137 of completely unnecessary but irreversible physical damage to our children’s bodies.”
In a statement to Newstalk the HSE said:
“The application for pricing and reimbursement for a subset of the licensed population in the 6-11 year cohort for Kaftrio® remains under consideration with the HSE. The HSE cannot make any comment on possible outcomes from the ongoing process.
“The HSE is committed to providing access to as many medicines as possible, in as timely a fashion as possible, from the resources available (provided) to it.
“The HSE robustly assesses applications for pricing and reimbursement to make sure that it can stretch available resources as far as possible and to deliver the best value in relation to each medicine and ultimately more medicines to Irish citizens and patients.
HSE decisions on which medicines are reimbursed by the taxpayer are made on objective, scientific and economic grounds.”
Main image: Luke and Matthew.
