His parents, Carly and Nick, of Canberra, remain in the torturous situation of knowing there is a drug available that could help their little boy live a longer, happier life but it is beyond the financial reach of them and most Australians, costing more than $200,000 a year per child.

The drug, Kalydeco, is on the Pharmaceutical Benefits Scheme, subsidised by the Federal Government, for children aged six and over with a specific genotype. But is is not subsidised for anyone younger than six.

The office of Health Minister Greg Hunt told The Canberra Times on Friday that it was making an announcement that Kalydeco would be listed for children aged under six from this year but could not confirm it until Sunday. The office on Sunday then refused to confirm the listing.

Without any official confirmation, Cystic Fibrosis Australia is still staging a protest at Parliament House in Canberra on Tuesday to draw attention to its concerns about Kalydeco and, another drug, Orkambi, not being recommended for reimbursement by the Pharmaceutical Benefits Advisory Committee.

It estimates more than 1000 cystic fibrosis sufferers would benefit from Orkambi being approved for reimbursement.

Cystic Fibrosis Australia chief executive officer Nettie Burke said even if Kalydeco was now listed for under six-year-olds, the protest would still go ahead as there was no news about Orkambi.

"We've got nothing in writing. I haven't even got an email from an adviser," Ms Burke said.

"If they think this is going to change the protest, they're crazy."

Advocates say the Kalydeco not only improves the symptoms of cystic fibrosis, an incurable condition which affects the lungs and digestive system, but also tackles the disease itself, making it a "life saver".

Twenty-month-old Dash has the appropriate genotype but has been too young to be eligible to receive the subsidised medicine.

His mother was overwhelmed by the possibility the drug may now be on the PBS for her son and the cost of it reduced to as little as $6 per script.

"I'm in shock. I can't believe it's happened," Mrs Dewey said, on Sunday.

"It will change his life. It will change our life."

Mrs Dewey said there had been trials and studies showing the effectiveness of the drug in children aged two to six with the appropriate genotype, so much so that it was available to that age group in the United States, United Kingdom and some European countries.

"The current life expectancy for my son and those living with cystic fibrosis is 38 years. The key to extending this is early intervention and protection of his lungs," she said.

"For us and 29 other families, waiting until our son is six to get the medication he needs to extend his life and protect his lungs is not an option."

The Pharmaceutical Benefits Advisory Committee and Department of Health has to now deferred access of Kalydeco to under six-year- olds, citing a difficulty in demonstrating incremental benefit. Mrs Dewey said she believed not extending the subsidised treatment to those aged under six before now was about saving money.

"We know these drugs work, the problem is their manufacturer has put a price on them that the government is unwilling to pay. It's estimated that the cost of Kalydeco is over $200,000 per year, per child," she said, on Friday before Mr Hunt's office suggested the drug would be listed.

Ms Burke said Cystic Fibrosis Australia, would not stop lobbying for people with CF to get access to the "life-extending drugs".

"Every day a person is denied access to Orkambi and Kalydeco is another day of potential life limiting lung damage. CFA is committed to holding our politicians and bureaucrats' consciences to the fire so they don't shy away from the tough decisions," she said.

Young Dash, meanwhile, is a lively child despite his daily regime of physiotherapy and medications.

"He's definitely not shy," his mum laughed.

He was diagnosed with cystic fibrosis at two weeks through the heel prick test.

"We were absolutely blown away. I didn't even really know what it was," Mrs Dewey said.

The couple is expecting their second child in July. They can only hope that the drug will be made available to Dash.

"It is hard but we just have to take it one day at a time," Mrs Dewey said