Cystic fibrosis: The medication that could change Caitlin’s life currently costs $250k. The PBS could change that

After years of struggling to catch a full breath, Caitlin Magagna was overjoyed when a potentially life-changing drug was approved for Australians like her.

Magagna, 25, was diagnosed with cystic fibrosis as a newborn and carries two rare gene mutations that make the genetic disorder, which damages the lungs and digestive system, difficult to treat.

It means when the prescription medication Trikafta was approved for use by many of Australia’s almost 4000 cystic fibrosis patients in back in 2022, she wasn’t eligible.

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That changed this month, when the Therapeutic Goods Administration (TGA) approved the expanded use of the drug to treat patients with rare gene mutations.

Magagna’s medical team believe Trikafta could be a useful tool in her long-term treatment plan – the only problem is the $250,000 annual price tag.

Though it has been approved by the TGA, Trikafta for rare gene mutations has not yet been added to the Pharmaceutical Benefits Scheme (PBS), which would cap the cost at less than $40.

Have you got a story? Contact reporter Maddison Leach at mleach@nine.com.au

“Unfortunately, some meds can take up to six months before they’re even approved on the PBS,” she tells 9honey, fresh off the back of a nine-week hospital stay.

“But we’ve waited so long for this [and] I’m really positive and confident that we will get it this year.”

That positive attitude has helped her through countless challenges over the last 25 years, from missing out on teenage milestones to being told she needs a lung transplant.

She her childhood in and out of hospital and made endless sacrifices for her health, like giving up competitive dance at 21.

Holding down a job is hard, managers don’t or won’t understand her health needs, and living alone isn’t possible when even the smallest tasks leave her exhausted.

“I struggle to make my bed, I struggle to to get dressed, showering, even just cooking, I have to have breaks in between to sit down,” she says.

“When I move out it will be with my partner, but he works full time so we need to wait for our finances to be in a position where we can get a house close to my mum.”

But with Magagna’s limited income and Australia’s housing crisis, that future is a long way off – especially if she remains ineligible for vital treatment options.

As well as having to wait for new, potentially life-changing drugs to be added to the PBS, Magagna is fighting tooth and nail to kick a “nasty” infection that has rendered her ineligible for a lung transplant despite currently functioning on 33 per cent lung capacity.

“Right now, it’s too risky to do a transplant with this infection,” she says.

“It really [would be] a second opportunity at life and it’s scary to think about that I don’t have access to that right now.”

But Magagna refuses to sit idle while she waits and hopes for access to treatments that could give her a new lease on life.

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For the last five years, she’s been sharing her lived experience of cystic fibrosis on her Instagram account @chronically__caitlin to educate other Australians and promote better understanding and acceptance of this and other invisible illnesses.

Though cystic fibrosis can be life-threatening, patients don’t always look unwell and Magagna has been berated by complete strangers because of it.

“I’ve gone to park in a disabled parking spot […] and people have abused me,” she says, adding that the abuse doesn’t stop when she shows them her permit.

“I’ve had it shouted at me, ‘That’s bulls–t, you’ve stolen that, you don’t look disabled’. People’s ignorance is just wild.”

The last thing she wants to do is rattle off her medical history to a stranger, so Magagna usually keeps her head down and ignores it.

Fortunately she has an amazing family and social support system to keep her looking on the bright side, even when other peoples’ ignorance or bouts of poor health get her down.

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May is Cystic Fibrosis Awareness Month and Magaga hopes as more young people with cystic fibrosis share their experiences, the ignorance and abuse will fade away.

She urges other Australians to be accepting of all invisible illnesses and calls on those in power to prioritise getting vital medications added to the PBS in a timely manner so she and other cystic fibrosis patients have the best shot at a better future.

Until then, she just wants to show everyday Aussies that even though the disorder affects every facet in her life, she won’t let it stop her.

“That’s the most important thing to me.”

Learn more about cystic fibrosis and why CF Together are advocating for the inclusion of key medications on the PBS here.

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