CF drug a life-changer for Cameron

A new approved drug will be life-changing for the Giovanazzi family.

Cystic fibrosis sufferers across Australia will now have access to the drug Orkambi after the Federal Government approved its addition to the Pharmaceutical Benefits Scheme last month.

The drug will benefit those who carry two certain genes of CF — two genes Belinda Giovanazzi’s nine year-old son Cameron has.

Previously, the drug cost $250,000 a year for patients.

It will now cost $6.50 a month.

Cystic Fibrosis WA says Orkambi is one of the only drugs that treats the underlying cause of cystic fibrosis rather than the symptoms.

Trials of the drug have shown a reduction in hospital admissions by 61 per cent, while lung function is preserved and deterioration of the lungs is halted.

Mrs Giovanazzi said she remembered the day Cameron was diagnosed at four weeks old.

“It was a complete shock. While a genetic disease, we had no idea that it was in our family, or that we were gene carriers,” she said.

“His journey so far has been quite mild — we have been very blessed as he has had a very normal nine-year-old life.

“He’s still a child and needs to experience life.”

Mrs Giovanazzi said she was thrilled upon hearing Orkambi had been approved and said it would benefit her son. “It’s going to be life changing,” she said.

“I was aware of the drug in its trial stage so we weren’t getting our hopes up but when it was approved we were over the moon.

“They also announced it would be for children from the age of six, not 12, so we were thrilled — it meant our Cam could take it now.”

“The drug will reduce the chance of getting ill, and the chance of infections which will mean less admissions to Perth, which means less travelling to Perth.”

The potentially deadly disease affects the lungs and digestive system, and while there have been improvements in treatment, life expectancy for sufferers is only 35.