ABOUT TIME: After four years of fighting Vincent and Sabrina Zwarts have finally had a win as life-saving cystic fibrosis drug Orkambi is approved by the PBS.
ABOUT TIME: After four years of fighting Vincent and Sabrina Zwarts have finally had a win as life-saving cystic fibrosis drug Orkambi is approved by the PBS. Emma Reid

'Now, finally, I can have some sort of a normal life'

"NOW, finally, I can have some sort of a normal life."

These words are from Bundaberg's Sabrina Zwarts after the life saving drug Orkambi was placed on the PBS.

Miss Zwarts has cystic fibrosis and has been fighting for three years to have the medication placed on the scheme to make it affordable to everyone.

Because of the cystic fibrosis she takes about 30 pills a day, wears a breathing vest and nebuliser to help clear her lungs twice a day - 40 minutes each time - she has a persistent and chronic cough and she is hospitalised for two to three weeks every two to three months.

 

The average life expectancy of a person with cystic fibrosis is 27 years old, Miss Zwarts is now 21.

Orkambi will not only help save her life it will also change her life, by allowing her to spend less time in hospital and more time being a "normal" young lady.

Orkambi costs $260,000 a year and treats the cause of the disease rather than the symptoms, like the medication Miss Zwarts is on now.

Her father Vincent Zwarts was over the moon when he received the phone call on Friday after the fourth and final attempt to make the drug affordable was passed.

 

The pair have spent years rallying support to help prolong Miss Zwarts' life.

Yesterday, Miss Zwarts became tearful when asked how the drug would change her life.

"It will give me a normal life - so I am not always in the hospital," she said.

"I may be able to travel now, before I had to stay here and go to hospital every six weeks."

Mr Zwarts said so many people had already lost their lives because of the disease and it was about time the Pharmaceutical Benefits Advisory Committee listened.

It was a bitter sweet moment for him as he was happy to know Sabrina was now able to access the drug, but was saddened because he lost his eldest daughter, Jessica, five years ago when she was 18 because of her cystic fibrosis.

 

"People marched on Parliament to have this drug placed on the scheme," he said.

"The whole CF community came together and we made our voices heard.

"Over 1300 adults in Australia can now have access to this drug." Miss Zwarts said the journey had been a long one - "four years too long". In 2016 she shared her plight with NewsMail readers and they rallied behind her with support.

Cystic Fibrosis Australia CEO Nettie Burke said Orkambi improved lung function and BMI, reduces exacerbations and hospitalisation plus staves off or even halted lung damage.

Orkambi also often results in better mental health outcomes as less personal and family stress results in less depression and anxiety for all.

"When we united as a community our voice become too loud to ignore," she said.



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