A drug that treats cystic fibrosis has been listed on the Pharmaceutical Benefits Scheme

A medication to treat cystic fibrosis that costs patients up to $380,000 a year has been added to the Pharmaceutical Benefits Scheme.

HOPE: Scarlett Fox, 5, of Hobart has cystic fibrosis. Her mum Sam Jesney says the listing of a critically important medicine on the Pharmaceutical Benefits Scheme is life-changing. Picture: NIKKI DAVIS-JONES

KALYDECO did not just change Scarlett Fox’s life, it extended it.

Born with cystic fibrosis, the now five-year-old had struggled to gain weight and was “quite a sick little baby”, mum Sam Jesney said.

Scarlett’s life expectancy was 27. But when she started using the drug Kalydeco aged two-and-a-half, everything changed.

“She’s had fantastic weight gain, fantastic height gain, her lung function is absolutely superb,” Ms Jesney said.

“We were very much a healthy and active family who lived life to the fullest, but this [medication] shifted my mindset, from we have a child who’ll live to her 30s to a child who might see this cured.”

Scarlett and Ms Jesney will travel to Melbourne today to watch Federal Health Minister Greg Hunt announce Kalydeco will be listed on the Pharmaceutical Benefits Scheme for babies aged 12 to 24 months.

Cystic Fibrosis Australia chief executive Nettie Burke said the listing of the drug for even more children was “life-changing”.

About 280 Australians aged two onwards use Kalydeco.

“For these babies to now have access to it from the age of 12 months old is just remarkable,” Ms Burke said.

“Their young lungs will be so much more healthy as they go through their life.

“They’ll have a longer life and a better life.”

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Cystic fibrosis is a genetic disorder that affects the mucus lining of the lungs. More than 110 people in Tasmania live with the condition.

Kalydeco is targeted at cystic fibrosis patients with a G551D mutation or other class III gating mutation in the CFTR gene. It lessens the viscosity of mucus in the lungs, allowing patients to breathe more freely and reducing infection risks.

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Without the PBS subsidy, it could cost patients up to $380,000 a year, Mr Hunt said.

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

New strengths of drugs Bicillin L-A and Testavan will also be listed today.

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