I suffer from a debilitating condition that costs me $250,000 a year

I suffer from a debilitating condition that costs me $250,000 a year
Source: Daily Mail Online

At 26, Melbourne woman Caitlin Magagna looks like any other young Aussie building a life.

She works as a chiropractic assistant, spends weekends at brunch with friends, and recently bought her first home with her partner.

But behind her warm smile and seemingly ideal life, she's fighting a painful and debilitating battle that started the day she was born.

Caitlin lives with cystic fibrosis (CF), a life-limiting and incurable genetic condition that affects her lungs, pancreas, and digestive system - and costs Australians up to $250,000 a year to treat.

Those who have it develop an 'abnormal' amount of thick mucus within their lungs, airways and the digestive system. This leads to an impairment in digestive functions and traps bacteria in the lungs resulting in infections and irreversible damage.

CF is the most common inherited chronic illness in the country, affecting more than 3,700 Australians. Yet it remains an invisible disability and many still don't know it exists.

The reason? From the outside, Caitlin looks healthy.

Inside, her lungs are scarred and her daily routine is a full-time job of medication, breathing treatments, and hospital visits.

Melbourne woman Caitlin Magagna looks like any other young Australian building her life

Caitlin lives with cystic fibrosis, a life-limiting genetic condition that affects her lungs, pancreas, and digestive system - and costs Australians up to $250,000 a year to treat

'I've had people yell at me in car parks for using a disabled spot,' she told the Daily Mail.
'They'll say, "You don't look sick". You just have to let it go, but it really hurts. People have no idea what's going on inside my body.'

Caitlin was diagnosed at birth after doctors noticed her swollen stomach and found thick mucus blocking her intestines.

Her parents - who had no idea they were carriers of the CF gene - were told their newborn would need surgery within hours.

Since then, her life has been shaped by a constant cycle of treatments, infections, and hospital admissions.

'Growing up, I was always in and out of hospital. As a teenager, it started to hit me socially - missing birthdays, school events, parties. Later, it was weddings and friends' engagements. I've had to miss a lot,' she said.

By her teens, hospital stays became routine.

'From about 13, I was in hospital every eight weeks for what we call a "tune-up",' she said.

Cystic fibrosis (CF) is the most common inherited chronic illness in the country, affecting more than 3,700 Australians, yet it remains an invisible disability

Caitlin's father was battling cancer at the same time, and for months they were both in hospital - she at the Royal Children's, he across at the Royal Melbourne

'It' s like a car service - two weeks of IV antibiotics, physio, rest. By 21, I was in once a month.'

Those admissions could last up to a fortnight.

Despite her illness, Caitlin has never let CF define her.

She graduated high school with help from hospital teachers who arranged special exam sittings and even read her English books aloud when she was too sick to study.

Her father was battling cancer at the same time; for months they were both in hospital—she at Royal Children's, he across at Royal Melbourne.

'Mum used to walk between the hospitals every day to visit us both,' Caitlin recalled.
'Sometimes weeks would go by where I couldn't see Dad because we were both too sick, and we had to Skype from our hospital beds.'

He passed away when Caitlin was nine, a loss that still cuts deep.

'It was hard missing that time with him. We were both fighting to get better - in the same city, but apart.'

After his death, her mother raised Caitlin and her younger sister alone, sleeping by her hospital bed for years.

Despite her illness, Caitlin has never let CF define her

'Mum is my hero. She used to pack her bag and stay the full two weeks with me.'

In 2023, Caitlin’s condition reached a breaking point.

None of her medications were working; her lung function had dropped to 33 percent; doctors began preparing her for a double lung transplant.

But even that option was slipping away—a persistent chest infection made her ineligible.

'I was running out of hope,' she said.

Then came a lifeline: a new drug called Trikafta, a breakthrough therapy that targets the underlying cause of CF.

At the time, it wasn't available on the Pharmaceutical Benefits Scheme, meaning patients had to pay a staggering $250,000 per year.

Caitlin wasn't eligible under her genetic profile, but her doctors fought for compassionate access.

In 2023, Caitlin's condition reached a breaking point. None of her medications were working; her lung function had dropped to 33 per cent; doctors began preparing her for a double lung transplant

For Caitlin's family, the approval came just in time. 'My mum was ready to remortgage her house to pay for the drug,' she said

After months of paperwork and pleas, she got the call in June that would change her life.

'From my first dose, everything improved,' she said.
'I went four months without a hospital admission - I hadn't done that in 15 years. My lung function went from 33 per cent to 46 per cent. I was able to work more hours, and my boyfriend and I bought our first home. It's given me my life back.'

For Caitlin's family, the approval came just in time.

'My mum was ready to remortgage her house to pay for the drug,' she said.

'We even talked about moving to London, where it was available sooner. No one should have to uproot their life for medicine that already exists.'

Thankfully, Trikafta was added to the PBS in July 2025 for patients with rarer mutations, ensuring that Australians with CF no longer face that impossible cost.

But for Caitlin, the financial strain is only one part of living with the disease.

The emotional toll - the judgment, the fatigue, the daily fight for normalcy - can be just as difficult.

'CF is a full-time job,' she explained.
'My mornings start with tablets and breathing therapy. Some nights I spend an hour and a half doing inhalers, physio, and antibiotics. When I'm on home IVs, that's up to five infusions a day. Fitting in work, exercise, and a social life around that can be exhausting.'

Still, Caitlin insists she's one of the lucky ones.

She has a close-knit family, lifelong friends, and a partner she is grateful for.

Her boyfriend, Yuri, has learned her medication routine by heart and visits her in hospital whenever she's admitted.

'He's never once made me feel like a burden,' she says.

Now, Caitlin uses her platform to advocate for awareness and understanding of cystic fibrosis - especially for those who don't 'look sick'.

'People think CF is rare, but it's actually the most common genetic condition in Australia,' she said.
'We need more awareness because invisible illnesses are still misunderstood. You never know what someone's going through just by looking at them.'