Amelia McCrohan is an activRe five-year-old who loves art and craft, music and most of all, playing with her two big twin sisters. But she also has a rare form of cystic fibrosis which attacks the G551D mutation, meaning a daily ritual of 30 tablets a day and up to one-and-a-half hours of physiotherapy.

A medication that can all but cure Amelia, called Kalydeco, is available in Australia, but at a price out of reach for most families – $300,000 a year.

Next week the Pharmaceutical Benefits Advisory Committee will review and pass down a recommendation on Kalydeco to federal Health Minister Tanya Plibersek. 

It is then up to the government to decide whether it will be placed on the Pharmaceutical Benefit Scheme.

Amelia’s father, Tim McCrohan, said he had one message for the Pharmaceutical Benefits Advisory Committee and Ms Plibersek. “We just ask her and her government use all means possible to make this medication affordable,” he said. 

“It is performing miracles. What else can you call two pills a day which completely changes someone’s life?”

This week Tim and his wife Glenyce wrote to Ms Plibersek and federal Member for Bendigo Steven Gibbons, asking for assistance in making the therapy affordable in Australia. 

Mr McCrohan said the medication would be life-changing for Amelia and his family, completed by eight-year-old twins Ester and Ella-May.

“It would mean we can live a normal life. Amelia won’t suffer bowel problems or lung infections like she has all her life,” he said. He said Ester and Ella-May had been a big support for Amelia, who was diagnosed with cystic fibrosis at one month of age. “Their lives have had to change compared to other kids because of this underlying disease,” he said. 

“They certainly wear a lot of the burden. 

“But they also have been probably the number one reason Amelia is so healthy. 

“They actively get involved in her daily treatment, like jumping on trampoline with her. We do it as a family.”

A spokesman for Ms Plibersek said the government could not assess Kalydeco for the PBS without a recommendation from the independent Pharmaceutical Benefits Advisory Committee.