North East mother fights for cystic fibrosis medication to remain available on NHS

A mother of a young girl with cystic fibrosis, is calling on the government to take action, to keep a much-needed medication available on the NHS.

North East parent Christina Lee, who is mother to Arya, aged 3 explains that her daughter “loves life”, but can find it challenging due to her condition. 

Arya was diagnosed with cystic fibrosis when she was only two weeks old, and has spent her life in and out of hospital.

However, after learning of the medication Kaftrio, which is used to treat children and adults with cystic fibrosis, the family became hopeful. 

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“It would make her life longer, there would be less hospital stays and she would have better lung function,” Christina explained. 

“It’s not a cure, but it’s half way there. It would make her whole life better, she could live a potentially pain-free life.”

The medication has been available on the NHS since 2020, but the National Institute for Clinical Excellence (NICE) have recently recommended access to the drug to be removed.

“I’m trying to fight for it,” Christina explained.

“Arya has cough swaps every six weeks to check for infection, and if it’s really bad she has to go into hospital for 2 week IV’s.

“With the drug it could prevent all that.

“Kaftrio was the one hope we were clinging on to and now it could just be taken away.”

Christina has written letters to the Prime Minister and King Charles III, pleading for them to take action and support those in need of the medication. 

“I’m trying my best. It means so much, not just to my child but many others too,” Christina said.