Federal Government’s decision to add cystic fibrosis drug Orkambi to the PBS will offer better health, and more time, to those eligible

New future: Morgan Gollan, of Fletcher, is happy a cystic fibrosis drug that helped her is now available on the PBS. "It has taken a village of people fighting for this," she said. Picture: Max Mason-Hubers
New future: Morgan Gollan, of Fletcher, is happy a cystic fibrosis drug that helped her is now available on the PBS. "It has taken a village of people fighting for this," she said. Picture: Max Mason-Hubers

THE things Morgan Gollan longs for most cannot be bought – good health, and more time.

But the Federal Government’s decision last week to add a “life-changing” drug for cystic fibrosis (CF) to the Pharmaceutical Benefits Scheme (PBS) will offer both better health, and more time, to those who are eligible.

Mr Gollan said Orkambi was the only available drug that treated the underlying cause of cystic fibrosis, rather than the symptoms.

Previously, it cost $250,000 a year for CF patients. Now, it is set to cost less than $80 a year for concession patients, and $39.50 per month for general patients.

“Friday’s decision means a new future,” Ms Gollan said.

“It means redefining what CF is, and that a bright, healthy future isn’t just possible, it is real.”

Cystic fibrosis is a chronic condition that affects the lungs and digestive system, with a life expectancy of 37.

Ms Gollan knows from personal experience what a difference the drug makes, having been granted compassionate access to Orkambi in 2016 after waiting on a lung transplant list for more than two years.

She watched her lung capacity grow from 35 per cent to 55 per cent while using the drug, and has campaigned for it to be made available to other cystic fibrosis sufferers ever since.

She said after three failed attempts to get it placed on the PBS, Orkambi was finally given the go ahead.

“It has taken a village of people fighting for this,” Ms Gollan said.

“I have been on the drug for two-and-a-half years, and I am so happy that everyone else who is eligible for it will be able to access it. It’s the beginning of a new future for them.

“It is life-changing. Really.

“I felt guilty. It bothered me that I could have it, and other people couldn’t, because I knew how much difference it could make.”

Ms Gollan, 27, said it was a wonder that she was still alive. She expected the drug would help others, like it had helped her, in preventing or reducing hospitalisations.

“I got my Christmas present, and all my dreams, two-and-a-half years ago when I first started taking it,” she said.

“And now, they get their new future too.”

Ms Gollan said the medication was expensive.

“But how much is a life worth?

“For the kids that start it, it will give them a normal life. The life expectancy before was 37, but this drug is supposed to add 20 years to your life. That’s a normal life.

“And there will be more medications like it that will come through. So it will pave the way for those,” she said.

“Friday’s decision affirmed that the Australian government believes our lives are worth it, and that is everything.”