Chloe Chenoweth from Whyalla likes to live life in the fast lane and she’s not afraid to get her hands dirty — that’s why she’s leading the South Australian Dirt Circuit open-wheelers state championships.
Key points:
- Chloe Chenoweth was diagnosed with cystic fibrosis at three weeks of age and says the gene mutation medication Trikafta has changed her life
- She is currently in first place with one round to go in the dirt circuit open-wheeler South Australian championship
- Cystic Fibrosis Australia has urged the government to list Trikafta on the PBS to bring down the $270,000 annual cost per patient
The 27-year-old is the only female competitor in her class and has raced at speeds of up to 154 kilometres per hour on the short track.
She’s lucky to be racing at all after she was hospitalised with just 21 per cent lung capacity and faced a lung transplant five years ago.
Ms Chenoweth has cystic fibrosis (CF) and is one of 200 people in Australia approved to have gene mutation medication in a trial or on compassionate grounds.
It changed her life.
“I was diagnosed with cystic fibrosis at three weeks of age,” Ms Chenowth said.
“I spent 52 admissions to the Women’s and Children’s Hospital before I was 18, each being two to three weeks, so I missed out on a lot of my childhood at school, which made it hard.
Supplied: Aimee Simmons
)She was a tomboy and has ridden motorbikes since she was nine.
At 14, she found she had talent behind the wheel of a dirt circuit car and was hooked.
Supplied: Chloe Chenoweth
)“I love the hands on, love working on cars myself, doing a lot of different things on cars, and changing motors for my own road car,” Ms Chenoweth said.
“My mum was actually the first female mechanic in Whyalla.”
Supplied: Dennis Woodman
)In 2016, her health had deteriorated and her lung capacity dropped to 21 per cent.
“In 2017, I started Orkandi, a gene mutation drug, and my lung capacity went up so they just decided to start monitoring me rather than wait for a transplant,” Ms Chenoweth said.
“A transplant is not a cure but it prolongs life.
And then in 2020 Ms Chenoweth started Trikafta.
“It’s a tablet that mutates the cells in the body to actually do what they’re supposed to do,” she said.
“So it actually makes our body work properly because there are defects in our cells caused through cystic fibrosis.
“I’m currently up to 52 per cent lung capacity and it doesn’t really affect me anymore.”
The drug is not on the Pharmaceutical Benefits Scheme (PBS) yet and it is administered to her at the Women’s and Children’s Hospital.
“I’m pretty lucky to get onto it when I did because it’s made such a difference to my energy levels,” Ms Chenoweth said.
“I can get out and do a 10km walk.”
Lobbying for life
Cystic Fibrosis Australia’s chief executive Nettie Burke said Trikafta cost $270,000 a year per person and the association continued to lobby for it to be listed on the PBS to be subsidised.
Ms Burke said Trikafta treated the underlying disease of cystic fibrosis and not just the symptoms.
The current life expectancy for a person with CF was 47 but 50 per cent of people do not live past their mid-20s.
“It’s extending lives by decades and this is why we need all people with CF in Australia to have access to this drug,” Ms Burke said.
“It’s only fair and reasonable that Australians have a chance to have a life when there’s a drug like this available.”
The next round of PBS deliberations is expected to be announced on Friday but Ms Burke says she is not confident Trikafta will be on the list.
Supplied: Andrew Hill
)COVID risk
Ms Chenoweth also faced extra challenges with the COVID pandemic.
“We actually had cases in Whyalla so I went into isolation, locked myself in my own house for a month and a half, which made it very hard – I couldn’t see my nephew. He’s my world, and I couldn’t see him,” Ms Chenoweth said.
“It was very hard, very mentally draining.
“It was very stressful for not only me but my family.
“The doctor told me to look after myself and ‘if I could don’t go anywhere’.”
She is back out racing now and needs to maintain her lead in the championships to win the state title in early October at Whyalla.
Supplied: Nancy Francis
)She’s used to fighting against the odds.
“At 14, I was thrown straight into the street stock, so no junior class for me, against all the adults,” she said.
“They used to have a ladies’ class in the state titles but they weren’t racing for points, it was only a demonstration so a lot of the ladies turned their noses up at it and decided to race with the men.”
This is the first time Ms Chenoweth has led the championship— she finished third last year.
She just needs to hold onto first place in early October for round two of the championships to win the state title at home.
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