Ten-year-old Luke Emery has lived with cystic fibrosis since the age of six months and has battled through extended hospital visits every year since.

In 2016 a new drug known for helping treat Luke’s strand of cystic fibrosis was approved for use in Australia, however a hefty price tag has left Luke and about 1000 more Australians living with the disease unable to access the drug.

Luke’s mum Donna said her family was desperately hoping that the drug – called Orkambi – would be made available through a Pharmaceutical Benefits Scheme subsidy in the near future. 

“It's been approved for use in Australia however the cost is so high, it would be $685 a day - which is about $250,000 a year - so there's not a lot of people who can afford that,” Mrs Emery said. 

“It's shown really good results in stopping the lung infections and the damage to the lungs which is a big cause of deterioration in the health of people with cystic fibrosis, so that's probably how we (can best) treat Luke.”

Mrs Emery said she was hopeful that after the PBS expanded patient access to a cystic fibrosis drug called Kalydeco last week, a subsidy on Orkambi would not be too far away.

“They approved Kalydeco for over six-year-olds a few years ago so (Cystic Fibrosis Australia) were rallying to get the two to five-year-olds which has just come through, and that's just fantastic for the kids in Australia that'll benefit from that.”

A passionate Hawthorn support, Luke said having access to the medication would be an “amazing” thing. 

“I really want it to come out so it’s not as expensive and then I'll get even better,” Luke said.

“It's just a step closer to the cure and we need to keep making those steps.” 

“I’ll probably have to go to hospital this year if I'm not well because I usually have to go to hospital every year for a tune-up or because I get sick… it would be amazing to not have to go to hospital all the time.”