The Cystic Fibrosis treatment drug Trikafta.
National

Cystic Fibrosis sufferer reacts to Australian Trikafta funding

Over the weekend, Australia announced it would fund Trikafta, a life-changing and life-enabling drug to treat Cystic Fibrosis. On Monday, a 42,000 signature strong petition is to be delivered to MP Dr Deborah Russell.

Cystic Fibrosis is a genetic disease that causes sufferers to over-produce mucus. Those with the disease describe it as if they feel like they are drowning. The disorder also impacts the pancreas and the ability to digest food.

Ed Lee has Cystic Fibrosis. With the support of his family, he has self-funded Trikafta. Lee joined Rachel Smalley on First Light on Monday morning, and told Smalley how the Australian decision to fund Trikafta made him feel.

"I was absolutely elated, We and the CF community were buzzing for the Australians and seeing how proud the Australian Government was when they announced the funding. This is going to save thousands of lives and will enable these people with CF and their families and friends to live a full life.

"In saying that, It does also highlight the increasing frustration at how enormous the medicine gap is here in New Zealand and puts us further and further behind the rest of the world".

Smalley asked Lee what was life like before he started on Trikafta.

"Cystic Fibrosis primarily affects the lungs through persistent sticky mucus, it also affects our other organs, That causes persistent lung infections which requires us to constantly be on anti-biotics, IV medicine in hospital and steroids. We are just trying to reduce the infection.

"Each infection causes more and more damage. Life with CF, It's hard living with a death sentence. 90 percent of the CF community is below 40[years of age], but we just have to put our head down and keep living, physically and emotionally. It's tough and it's really hard on our families, our parents are absolutely terrified they are going to lose their son."