After years of struggling to breathe properly, Caitlin Magagna felt immense relief when a potentially life-changing medication was approved for Australians facing similar health challenges.
Diagnosed with cystic fibrosis at birth, the 25-year-old lives with two rare gene mutations that make the condition—which primarily affects the lungs and digestive system—particularly hard to manage.
So when the breakthrough drug Trikafta became available in 2022 for many of the nearly 4000 Australians living with cystic fibrosis, Caitlin was devastated to learn she didn’t qualify.
Life-Changing Cystic Fibrosis Drug Offers New Hope for Caitlin Magagna
That changed this month when the Therapeutic Goods Administration (TGA) approved the broader use of the drug to include patients with rare gene mutations.
Caitlin Magagna’s doctors believe Trikafta could play a key role in managing her condition long-term — but the challenge lies in its staggering $250,000 annual cost.
While the TGA has given the green light, Trikafta for rare mutations is still not listed on the Pharmaceutical Benefits Scheme (PBS), which would reduce the price to under $40.
Expanded Trikafta Approval Brings Relief Amid High Costs and Treatment Challenges
“Unfortunately, some medications can take up to six months before they’re added to the PBS,” just after completing a nine-week hospital stay.
“But we’ve waited so long for this, and I truly feel hopeful and confident that it will happen this year.”
That unwavering optimism has carried her through a lifetime of challenges — from missing key teenage milestones to hearing she might eventually need a lung transplant.
Much of her childhood was spent in and out of hospitals, and she’s had to make countless sacrifices for her health — including giving up her passion for competitive dance at age 21.
Holding down steady work is a struggle, as many employers don’t understand or accommodate her condition. And living independently isn’t an option right now, since even the simplest daily tasks leave her completely drained.
“I struggle just to make my bed or get dressed. Showering, cooking — I need to take breaks in between just to sit and catch my breath,” she explains.
“When I finally move out, it will be with my partner. But since he works full-time, we need to get our finances in a place where we can afford a home close to my mum.”
Living with Cystic Fibrosis: Overcoming Ignorance, Health Struggles, and Advocacy for Awareness
However, with Magagna’s limited income and the ongoing housing crisis in Australia, that future feels out of reach — especially if she continues to miss out on critical treatment options.
On top of waiting for access to potentially life-changing medications through the PBS, Magagna is also battling a persistent and “nasty” infection that currently makes her ineligible for a lung transplant, even though her lung function has dropped to just 33 percent.
“Right now, undergoing a transplant with this infection is just too dangerous,” she explains.
“It truly would be a second chance at life, and it’s frightening to think I can’t access that option at the moment.”
Still, Magagna refuses to sit back and wait. She remains determined and hopeful that access to these essential treatments will eventually open the door to a healthier future.
For the past five years, Magagna has been openly sharing her journey with cystic fibrosis on Instagram via her account @chronically__caitlin, aiming to raise awareness and foster greater understanding and acceptance of cystic fibrosis and other invisible illnesses in Australia.
Despite the life-threatening nature of the disease, many people assume she’s healthy simply because she doesn’t “look” sick — and that misunderstanding has led to cruel treatment from strangers.
“I’ve parked in a disabled spot before and been verbally abused,” she says, noting that even showing her official permit doesn’t stop the harassment.
“I’ve had people yell at me, ‘That’s fake, you stole that, you don’t look disabled.’ The ignorance is unbelievable.”
Rather than explain her entire medical history to strangers, Magagna often chooses to stay quiet and walk away.
Thankfully, she’s surrounded by a loving family and a strong support network that helps her stay positive — even when her health takes a turn or she’s faced with other people’s harsh judgments.
May marks Cystic Fibrosis Awareness Month, and Magagna hopes that as more young people living with the condition continue to share their stories, the stigma, ignorance, and mistreatment will gradually disappear.
She encourages Australians to be more understanding of all invisible illnesses and urges decision-makers to prioritize the timely inclusion of life-saving medications in the Pharmaceutical Benefits Scheme (PBS), giving people with cystic fibrosis a fairer chance at a healthier future.
In the meantime, she’s determined to show everyday Australians that while cystic fibrosis impacts every aspect of her life, it won’t define or limit her.
“That’s what matters most to me,” she says.
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