Infants with cystic fibrosis set to breathe easier with new PBS listing

Promising move: Harvey, 10 months of age, could soon benefit from cystic fibrosis treatment that has been recently added to the PBS. Pictured are his parents Cameron Miller and Annie Smith, with their daughter Scarlett. Picture: John Veage
Promising move: Harvey, 10 months of age, could soon benefit from cystic fibrosis treatment that has been recently added to the PBS. Pictured are his parents Cameron Miller and Annie Smith, with their daughter Scarlett. Picture: John Veage

The federal government is expanding access to a critically important medicine on the Pharmaceutical Benefits Scheme (PBS) that will help infants living with cystic fibrosis and save their families up to $300,000 per year.

From August 1, the medicine Kalydeco (ivacaftor), will made available through the PBS for patients aged 12 to 24 months living with the condition.

Cystic fibrosis is a recessive genetic disorder that affects the mucus lining of the lungs, which leads to breathing and other health problems.

This medicine is specifically targeted for people with cystic fibrosis that have a G551D mutation or other class III gating mutation in the CFTR gene, and it lessens the viscosity of mucus in the lungs, helping patients to breathe more freely.

This listing will enable infants to benefit from this medicine improving their health and quality of life.

Families will be able to access this medicine and will pay up to $40.30 per script, or $6.50 with a concession card.

About 280 children and adults above two years of age access Kalydeco through the PBS, but it has previously been unavailable for infants under two years of age.

In Australia, one in 2500 babies are born with cystic fibrosis. It is critically important that children commence treatment as soon as possible.

Lilli Pilli mum, Annie Smith, welcomes the announcement.

Her son Harvey, 10 months of age, was born with cystic fibrosis. He takes medication to boost pancreatic function, antibiotics and multi-vitamins.

"We are thrilled with the news," she said. "It's wonderful for the CF community.

"It is possible Harvey will benefit. We are yet to discuss with his doctors if Kalydeco is the right medication for Harvey, but once he is 12 months old it is likely."

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