A 'miracle' drug for those living with cystic fibrosis (CF) could soon be made accessible for patients right across Australia, including Wagga's own Bella Ingram.
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Late last week the "life-changing" drug Trikafta was recommended for inclusion on the Pharmaceutical Benefits Scheme (PBS), a massive achievement for those in the CF community who have spent years advocating for the move.
Ms Ingram is one of about 3500 Australians living with cystic fibrosis, a hereditary disorder that currently has no cure.
"Trikafta is the third in a series of medications that are pretty new and groundbreaking for patients with CF," she said.
"It's really the closest thing we've found for a cure and people have had some pretty phenomenal results over the last few years."
While Trikafta is already available to Australian patients, it is incredibly expensive at more than $300,000 per year - hence the calls for its inclusion on the PBS.
CEO of Cystic Fibrosis Australia Jo Armstrong welcomed the latest announcement, calling on the Department of Health to "move swiftly to ensure that the PBS listing happens as quickly as humanly possible".
Ms Ingram said one of the things that makes Trikafta so important is that it actually treats the root cause of CF, "almost like a corrector", rather than just treating the symptoms such as coughing, fatigue and poor nutrition.
"For a drug that has such an amazing effect on people's lives, it is so expensive without the PBS," she said.
Ms Ingram said one of the reasons it might be more difficult to see the results of drugs such as Trikafta is that they are hard to quantify.
"Patients are saying they are less tired, hungry, [having] an active lifestyle for the first time; that's amazing, but it's so hard to pin down by a number," she said.
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In her own experience, being on Orkambi has given Ms Ingram a new lease on life with more energy, meeting her nutrition needs and having "way less colds" in the winter.
She was also able to complete her HSC last year, a huge milestone she wasn't sure she could achieve.
"Hopefully I will be able to move onto Trikafta eventually," Ms Ingram said.
Although she understands approving new medications takes time, Ms Ingram is urging decision makers to consider the patients.
"It's very easy to [focus on] the numbers and statistics and forget that there are actually faces connected to who you're thinking about and people's everyday lives are being consistently affected while you make decisions over long periods of time."
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