The 19-year-old, who has cystic fibrosis, was one of the first to benefit from the new potentially life-extending drug Orkambi after it was placed on the PBS in October.

It changed his life.

"It only costs me $6 a month, where before it would have been something like $200,000 a year," he said.

"I had friends with CF who have died and friends my age who are already on the transplant list so if the drug does what it says, to extend my life, that is pretty great.

"I feel normal again."

After initial side effects, which Mr Hubbard said "basically did the opposite to what it is meant to do", the drug kicked in.

"It definitely helps keep me at the physical fitness I like to be and enables me to get out and do things I like to do," he said.

Orkambi is available to CF sufferers who have two copies of a certain mutation and Mr Hubbard's mother and Border Cystic Fibrosis member Lillian Hubbard said there was a long process before being accepted.

"We had to get everything ticked off before he qualified for the drug," she said.

"In October it was the third time the drug was meant to be put on the PBS and I remember when I got home that day Tyson gave me a hug and whispered in my ear, 'mum I am going to be here longer'.

"I didn't realise how much this has affected every part of him. It has changed his life."

The Border Mail