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

29/05/2019 // by admin

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-HubersTHE 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 bothbetter health, and more time, to those who are eligible.

Mr Gollan said Orkambiwasthe only available drugthat treatedthe underlying cause of cystic fibrosis, rather thanthe 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.

Related reading: Speaking up for access for pills of hope

“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 drugmakes, having been granted compassionate access to Orkambi in 2016 after waiting on alung transplant list for more than two years.

She watched herlung capacity grow from 35 per cent to55per cent while using the drug, and hascampaignedfor 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 Gollansaid.

“I havebeen 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.”

Related reading: Cystic fibrosis patients need more mental health support

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-halfyears ago when I first started taking it,” she said.

“Andnow, 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 thema normal life. The life expectancy before was37, 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.”

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