Meet the winners: Kayla White and Ed Lee

Wellingtonian Ed Lee received the 2023 Respiratory Achiever Award for ‘other conditions’ for his tireless advocacy on behalf of people living with Cystic Fibrosis (CF).

At 40 years old, Ed is one of the oldest people in New Zealand with CF. This condition causes thick and sticky mucus to build up in the lungs, making it hard to breathe and increasing the likelihood of infections. Each lung infection causes further lung damage, resulting in poor lung function. Edward’s lung function was 28% at its lowest.

CF took a huge toll on Edward’s quality of life, he spent a lot of time in hospital and was constantly on antibiotics, which damaged his liver and renal function.

The predominant treatment for CF in New Zealand is inhaling saltwater twice a day to remove mucus from the lungs. However, after hearing about Trikafta, which is a breakthrough treatment available in most E.U. countries, the UK and the US, Edward knew it was what he needed to get healthy and live a normal life. “Trikafta wasn't funded in New Zealand then, but I was in a fortunate and privileged position to be able to go to the US and pay for a Trikafta prescription,” Edward explains.

“It really is a miracle drug. I returned to the hospital after a couple of months of taking Trikafta and the radiologist thought something was wrong with the x-ray because she couldn’t believe the improvement in my lungs!”

Once Ed had experienced how transformative Trikafta had been for himself, he knew he wanted everyone with CF in New Zealand to access this medication. He had built connections with the wider CF community using social media and with the support of this community, Ed began lobbying for Trikafta to be funded in New Zealand. It was a long slog; talking to health authorities, politicians and the media to build their case. But this hard work paid off, when Pharmac announced this month that Trikafta was approved for use in New Zealand from April 2023.

Trikafta will be available for those aged six and above: “My hope is that these young children with CF will be able to take Trikafta before any permanent lung damage occurs and they can live most of their lives without feeling like they have a serious illness”.

Life has thrown some tough challenges at Kayla White, but the 13-year old’s determination and spirit have seen her fight to live the life she wants.

Her bravery was awarded, when she received the Cody Forbes Award for Courage at the national Respiratory Achievers’ Awards, held by the Asthma and Respiratory Foundation.

The award ceremony held in Wellington, fell on Kayla 13th birthday; a milestone that doctor’s thought she was unlikely to reach. “She’s always been a fighter. From the very earliest days after she was born, she had such a strong will to live,” her mum Angela recalls.

Kayla was born with hydrops fetalis, a serious condition with a low survival rate and the cause of permanent damage to her lungs. She has 70% lung function and a range of respiratory conditions that make breathing very difficult. She was told by doctors at a young age that she wouldn’t be able to do anything physical.

“When Kayla is told she can’t do something, she will go out of her way to prove them wrong. She has absolutely defied those predictions,” Angela says. Kayla is involved in a semi-competitive cheerleading team, a marching team, Girl Guides, her school’s Kapa Haka team and choir. She runs in the cross country every year, takes part in competitive swimming and was in her school’s competitive Maths team. With her marching team she competed at a national competition.

“She will always give it a go, even if she is slower than everyone else or needs to run the cross country with her inhaler in her hand. She gets breathless but her pure determination gets her through,” says Angela.

Both Kayla and Angela admit there have been some very hard times. “She has been in hospital too many times to count and up to Starship numerous times. It’s hard on her. She had to miss a lot of school during COVID-19, because it was just too risky to go,” explains Angela.

Kayla is humble about her attitude and achievements. “It’s just normal to me. I want to do those things, so I keep going,” she explains. Angela is immensely proud of Kayla’s courage and willingness to give things a go. “She wasn’t meant to live, but she loves life and while others are sitting on the sidelines, she’s out there doing it.”