Drug a ‘life-changer’ for children with cystic fibrosis

A LOCAL mother has hailed the “amazing” impact that cystic fibrosis drug, Kaftrio, has had on her 15-year-old daughter, after the life-changing medication has been made available for use by young children across the UK.

A few weeks ago, Kaftrio was approved for children aged six to 11 by the European Commission and the UK’s Medicines and Healthcare products Regulatory Agency (MHRA), meaning more than 1,500 youngsters across the UK stand to benefit from the drug and limit the damage cystic fibrosis does in these critical early years.

Omagh woman, Ayrin Armstrong, said the drug had made an “amazing” difference to everyday life for her daughter, Zona.

She said, “Before Zona was prescribed the drug four years ago, her lung capacity was at 30 per-cent. She was in and out of hospital and, at times, she was even coughing blood.

“It was a very scary time for her and us, and we didn’t have much hope that things would get any better.”

However, since being prescribed Kaftrio, Zona’s life has changed. During 2021 and, so far in 2022, she has not been admitted to hospital, and has been able to attend school regularly and maintain an active social life.

A delighted Ayrin said, “In the last year, Zona has been able to live life like an ordinary teenager. Kaftrio as been a game-changer. Her school attendance is much better and she is much more active.

“Before Kaftrio, we used to call her ‘Sleeping Beauty’ because she had no energy. Now she is very hard to keep up with!

“Other things have improved as well, and it is so much easier for Zona to manage her treatment, as she only as to take two pills a day. Before Kaftrio, we used to think only about bad things when it came to our daughter’s future; now we can think about Zona’s future in a more positive way and can dream about all the good things that can and will happen to her.”

Castlederg man, Liam McHugh, who is a fundraiser and campaigner for cystic fibrosis and an ambassador for the Cystic Fibrosis Trust, said that drugs like Kaftrio could change people’s lives.

Liam said, “Kaftrio is suitable for use by 90 per-cent of people with cystic fibrosis. Myself and others have campaigned for years to get drugs like this approved by the NHS.

“When my daughter, Rachel, who has cystic fibrosis, was given her medication, called Orkambi, nine years ago through a clinical trial, it transformed her life. I knew how good these drugs were and I want everyone else to get the same chance as Rachel. So, for young people who can now get Kaftrio it is an amazing life-changing moment.”

West Tyrone MLA, Daniel McCrossan, said he was “delighted” to hear that the drug has been made available for use by children.

Mr McCrossan said, “I’m delighted that children aged between six and 11-years-old living with cystic fibrosis in the North will now be afforded access to the life-changing drug, Kaftrio.

“I commend campaigners involved for their perseverance in improving cystic fibrosis treatment here. In recent years, their hard-fought efforts have secured Orkambi, Symkevi and Kalydeco, making these previously deemed “unaffordable” treatments a reality.”

The MLA added, “The price of good health cannot be quantified, and I have no doubt that extending Kaftrio access will enhance the quality of life for so many children living with cystic fibrosis.”