At last some meaningful support for people suffering from cystic fibrosis.
At last some meaningful support for people suffering from cystic fibrosis.

Support can change lives for Noosa sufferers

NOOSA sufferers of cystic fibrosis now have access to life-changing medicines through the Pharmaceutical Benefits Scheme saving them and their families up to $250,000 a year.

Federal Member for Wide Bay Llew O’Brien said this will provide new or improved treatment options for more than 1400 patients.

From December 1, the life-changing medicine Symdeko will be listed on the PBS for patients with cystic fibrosis over the age of 12, who have specific gene mutations.

The current listing of Orkambi will also be expanded for children aged 2-5 years of age, allowing earlier access to this life changing medicine.

“The addition of these drugs will make a world of difference for people affected by cystic fibrosis,” Mr O’Brien said.

“They will previously have paid up to $250,000 a year for Symdeko or Orkambi, or gone without those drugs.

“They will now only pay a maximum of $40.30 per script, with concessional people paying just $6.50,” Mr O’Brien said.

In Australia, one in 2500 babies are born with cystic fibrosis, and there is currently no cure.

Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. A defective gene causes a thick, sticky build-up of mucus in the lungs, pancreas, and other organs.

The average life expectancy for Australians with cystic fibrosis is 38, still less than half that of the average Australian.

“This is why it is so important to provide access to new medicines that can extend the lives of people with cystic fibrosis,” Mr O’Brien said.

The Pharmaceutical Benefits Advisory Committee recommended these medicines be listed on the PBS.

  • Symdeko will be made available through the PBS for the treatment of people with cystic fibrosis who have two copies of the f508del mutation in the CFTR gene, and are 12 years or older.
  • The current listing of Orkambi will be expanded so that children can commence subsidised treatment from two years of age.


Father of Coffs man who died frustrated by not knowing

premium_icon Father of Coffs man who died frustrated by not knowing

He is frustrated at a lack of information from Foreign Affairs.

Volcano tragedy: More Aussie victims named

premium_icon Volcano tragedy: More Aussie victims named

White Island volcano blast: More Aussie victims named

The crimes that shocked the coast in 2019

premium_icon The crimes that shocked the coast in 2019

From murder to drugs, here's the biggest crime stories of 2019.