Irish parents are “breaking down and crying” because their children are being denied life changing Cystic Fibrosis medication.
Sarah O’Keeffe started a Change.org petition after she found out that her son is one of the 35 kids not be getting the medication that would improve his life.
She told Dublin Live: “We started the petition about two weeks ago. We’ve a little boy called Charlie and he’s seven. He’s one of the 35 children that is being denied the drug Kaftrio.
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“It’s a life changing medication for adults and children with CF. It improves energy levels, healthy weight gain and lung function. It’s a complete game changer.
“Charlie and these other children aged 6-11 were due to start Kaftrio in May 2022. We started the pre drug testing, we did an eye test and we travelled from Sligo to Dublin for blood tests.
“Then we found out that these children weren’t to be granted Kaftrio due to an error in the contract between the HSE and Vertex, who provide the drug.
“These 35 children weren’t included in the contract and now they can’t avail of Kaftrio. It was a huge shock and disappointment. We’ve been pleading for help from the government to resolve this and get the drugs the kids were promised.”
Sarah has received a lot of support from people, both in Ireland and worldwide.
“A lot of people know someone with CF, it hits home to a lot of people,” she continued.
“It’s horrible, we’re the ones fighting for it and it’s so stressful. We’ve a group of parents and we’re forever breaking down, crying, it’s horrible.
“It could’ve been avoided. It’s painful that we were given the hope that our children would live more normal lives. With CF, it’s all deterioration, it’s progressive.
“Although Kaftrio can’t reverse CF damage, it can prevent it going forward. So the sooner they start the better.”
Last night, the petition caught the eye of Westlife member, Kian Egan.
He took to Instagram to say: "These are some of the 35 children with Cystic Fibrosis in Ireland being denied the life-changing medication called Kaftrio. 140 children have been granted Kaftrio this month.
"These 35 children have been excluded due to an error in the contract between the HSE and pharmaceutical company Vertex.
"These families are pleading for public support to help push the government and the HSE to resolve this issue as quickly as possible.
"No child should be excluded, every child deserves a better quality of life."
You can sign the petition here.
A spokeswoman from the HSE told Dublin Live: "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.
"There are formal processes which govern applications for the pricing and reimbursement of medicines, and new uses of existing medicines, to be funded and/or reimbursed.
"The HSE considers the following criteria prior to making any decision on pricing/reimbursement in line with the Health (Pricing and Supply of Medical Goods) Act 2013.
"The application for pricing and reimbursement of this subset of the licensed population for Kaftrio remains under consideration with the HSE. The HSE cannot make any comment on possible outcomes from the ongoing process."
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