Children aged between two to five will now have immediate and free access to a life-changing cystic fibrosis drug with a former price tag of $300,000 a year per child.
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But it was a bittersweet announcement for the 1000 other cystic fibrosis sufferers in need of another drug, Orkambi, yet to be listed on the Pharmaceutical Benefits Scheme.
Surrounded by a sea of protesters in red, Federal Health Minister Greg Hunt said listing Kalydeco would "give children with the disease a chance to have a full life, not just in terms of time, but in terms of their day to day existence."
Prior to Tuesday's announcement, only children six years of age and older with the G551D or other class III gating mutations had subsidised access to Kalydeco.
He joked that negotiation with the drug's manufacturer Vertex Pharmaceuticals for immediate and free access to Kayldeco took "a little gentle persuasion from government."
Kalydeco is due to be formally added to the Pharmaceutical Benefits Scheme (PBS) on 1 May 2017 from then on will cost $6.30 for all concessional patients and $38.80 for general patients.
Mr Hunt reassured people there that "real progress" on listing Orkambi was due soon.
"I don't want to make any false promises," he said.
"That won't happen overnight. But I am pushing and we are on the path. "We have been able to deliver the right outcome with Kalydeco and given time, never fast enough I understand, we can make real progress on Orkambi."
It's a gruelling wait for Katrina Hughes whose 12-year-old son Hamish has been recommended to take Orkambi.
Hamish, a Year 8 Marist College student, has had 14 lifesaving operations throughout his life.
The 38kg teen, who stands 170cm tall, uses a nebuliser twice each morning and takes seven different prescription medications before dressing for school each morning.
"Hamish is about to have a feeding tube inserted to feed him overnight because he can't gain weight," she said. "He is having to be put through another operation in March which could have been avoided if the government had given us access to the drug."
Mrs. Hughes said medicines such as Orkambi would improve life for Hamish but also enable her, husband Ian and Hamish's sisters who both have special needs, to spend more time away from doctors and together at home.
Cystic Fibrosis ACT executive officer, Heidi Prowse, said current life expectancy for someone with CF was 38 years.
"Every day we don't have access to these medications more damage is done," she said. "There are people on trials for Orkambi that were a pre-lung transplant and are now back working full time. For the people that aren't accessing it, they are thinking what can this do for us?"
Hearing Mr. Hunt speak of firm and constructive negotiations with the drug manufacturing companies was heartening.
"For me, and certainly the community, it's great to see the government we elected go out to bat for us and understand the significant impact it will have on Australian lives."
She was overjoyed about the significant impact expanded access to Kalydeco would make, but said it was "disheartening we can't offer this kind of help to everyone."
