Trikafta: Kiwi with cystic fibrosis 'excited to breathe through clear lungs' after Pharmac funds 'miracle' drug

A Kiwi living with cystic fibrosis can't wait to "see what it feels like to breathe through clear lungs" after Pharmac announced it would fully fund what is touted as a miracle drug, 

Trikafta, supplied by Vertex Pharmaceuticals, will be funded for eligible cystic fibrosis patients aged six years old and above from April 1, 2023. 

Twins Alex and Lizzie McKay both have cystic fibrosis. Lizzie works with Cystic Fibrosis New Zealand, and she was able to share the news with her brother on Sunday. 

"I don't really have words, the delivery of that news will stay with us for the rest of our lives," she told AM. 

"It's been such an incredible few days."

Alex was at home with his partner when his sister shared the life-changing news. He told AM "we just sort of wept". 

"For about 20 minutes we were just going through a range of emotions and trying to realise exactly what it meant for us. It was amazing."

Alex will be able to start the "miracle" drug from April 1, but for Lizzie, that isn't the case. Ten years ago Lizzie was in palliative care. She told AM "the only thing that would save me was a lung transplant".

"I got my miracle 10 years ago and I'm beyond grateful for that," she said.

The lung transplant means Lizzie isn't able to take Trikafta. 

"Typically when they start talking about lung transplant, they say you've got five years, it'll give you an extra five years. You can't live with someone else's lungs in you forever. That was 10 years ago, so always betting the odds."

Alex told AM after 31 years of his health being dominated by cystic fibrosis he's "excited to see what it feels like to breathe through clear lungs". 

"It's all just only sinking in. Today and yesterday is a day that I've never really let myself think about ever happening, but It's a whole new lease on life."

Watch the full interview above. 

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