Every day 11-year-old Todd Minogue needs to swallow more than 40 tablets, use a nebuliser and have physiotherapy.
By the time his 12th birthday comes around the Canberra schoolboy hopes he will have taxpayer-subsidised access to a life-changing drug that treats his cystic fibrosis, a condition he shares with his younger brother Nicholas, 6.
While some families received good news this week, with the world-first drug Kalydeco made free for two to five-year-olds until its listing on Pharmaceutical Benefits Scheme from May, the Minogue family is still waiting for another groundbreaking treatment.
Orkambi, a drug which like Kalydeco treats the underlying causes of cystic fibrosis not just it symptoms, buts yet to be listed making it unaffordable for Australian families.
Todd's mum Tania says Orkambi, which comes with a price tag of upwards of $200,000 a year, could help her boys by reducing the need for hospitalisations.
It would also reduce flare-ups in their chests and aid in processing nutrients that allow them to gain and maintain weight.
"It's hard. It's stressful. Everyday is a fight," Tania says.
Her sons want to be regular kids but they can only do that once they get their treatment, and that can take more than 90 minutes a day.
"I'm positive there would be an improvement in their health (if they had Orkambi)," Tania says.
"And I'm hoping it will give us some family time back."
Vertex, the company which manufactures Orkambi, will submit another proposal to the Pharmaceutical Benefits Advisory Committee in March, with hopes it could be listed for consideration in July.
The drug is already available for eligible patients in the US, France, Austria and Germany.
Cystic Fibrosis Australia says there are more than 1000 Australians - like Todd and Nicholas - whose lives could be changed by Orkambi.
Federal Health Minister Greg Hunt told supporters at a rally outside Parliament House in Canberra he had spoken with the advisory committee and Vertex.
He doesn't want to make false promises but he's urged the company to have another go at listing.
"I am very hopeful that given time, never fast enough I understand, that we can make real progress on Orkambi," Mr Hunt said.
For Tania, a listing can't come quickly enough.
"We want access now," she says.
