A several step process has begun to get the drug, Trikafta, approved for children under 12, with clinical trials into its safety underway.

For mother Tara Bartlett, it's already been too long.

Her daughter Alexis, eight, was diagnosed at just 10 days old.

"There's only ways to manage the symptoms, there's no way of treating it, so that's a really hard thing to comprehend and deal with, especially with this tiny little human that you've just created," she said.

"On the outside, she looks normal and healthy, but on the inside, she's not.

"She could just get a virus or a bacterial infection, or even a nasty bout of gastro, and she would end up needing hospitalisation."

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Trikafta dropped in price by thousands of dollars when the government agreed to fund it on the Pharmaceutical Benefits Scheme.

On April 1, it was available to the public for as little as $6.80.

Any time between the decision to fund the drug for children and it hitting the market will be due to negotiations over pricing.

"It's really sad that they have to put a price on health, especially when there are really sick kids out there that are waiting," Ms Bartlett said.

"Their life expectancy is decreasing and their mental health and all of that is being affected waiting for this to be available, when it's such a game changer drug."

First made available in the US in 2019, Americans over the age of six can take Trikafta.

Back home, mothers like Tara Bartlett must wait a little longer before their children can get the benefits.

Something Ms Bartlett finds particularly cruel about cystic fibrosis is that those with it are incredibly sensitive to germs, and can't get too close to others with the incurable condition.

"It's a very isolating illness because you're unable to talk to other people in the same situation as you, because of that risk of cross infection," she said.

"The fact that I think it would be lovely for my daughter to be able to talk to someone that can relate to what she's going through, but she's unable to do that.

"I find that's painful seeing that she can't have that experience."

For a condition, which causes sticky mucus to build up in the lungs and digestive system, drug Trikafta has been shown to clear the airways.

Alexis would have less exacerbations, less hospital admissions, and less time away from school.

"She would then in turn be able to spend more time with her family and friends."

To help with the campaign, let pharmaceutical company Vortex know children under 12 should have access to Trikafta.

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