McQuillan welcomes supply of life changing drug for NI children

The Bann DEA councillor has been working with a local family whose son has cystic fibrosis, writes Gillian Anderson, Local Democracy Reporter.

“I am delighted to hear the news that this drug has been approved,” said Councillor McQuillan. “I have been in touch with the Health Minister since the start of last summer looking for this drug to be available for children in Northern Ireland.

“I know some of my constituents who have loved ones who suffer from the disorder will join me in welcoming the news.”

Kaftrio was approved for children aged six to 11 on January 11, 2022 by the European Commission and MHRA meaning more than 1,500 children across the UK and Northern Ireland stand to benefit from this drug and limit the damage cystic fibrosis does in these critical early years.

A spokesperson for the Cystic Fibrosis Trust said they were ‘delighted to hear the news that the life-changing cystic fibrosis modulator therapy was approved for use in younger children in Northern Ireland’.

As a result of the campaign for access to cystic fibrosis medicines, deals are in place so that eligible children will soon be able to benefit from this medicine which could profoundly impact on the life they are able to live with the condition.

A spokesperson for the Trust said: “While this is very positive news, Kaftrio is not a cure, and sadly, will not work for every child. A small clinical trial for Kaftrio in ages two to five-year-olds is currently taking place in the Royal Brompton Hospital, London and Alder Hey Children’s Hospital, Liverpool.”

Kaftrio was initially approved for use in Northern Ireland in 2020 following an agreement with its supplier Vertex Pharmaceuticals which gave access to people with cystic fibrosis over the age of 12 in line with a European-wide licence.

Speaking on the approval of the drug for younger children, Health Minister Minister Robin Swann said: “This decision will mean a great deal to the children with cystic fibrosis who are suitable for this treatment in Northern Ireland.

“I am very pleased that this cutting-edge medicine will be available to more of our cystic fibrosis patient population and allow them to have a better quality of life.

“When a new treatment becomes available it is fully understandable that patients and families should want immediate access to it. However, not all patients aged six to 11 with cystic fibrosis will be suitable for treatment with Kaftrio, and not everyone can be seen immediately by the multi-disciplinary teams who need to make this determination.

“The Health Service is working hard to make this treatment available to those who can benefit as soon as possible and I would therefore ask you to continue to be patient and let the clinical teams prioritise those patients who are in most need to be seen first.”