"NOW, finally, I can have a kind of normal life."
These words come from Sabrina Zwarts from Bundaberg after the life-saving medicine Orkambi was placed on the PBS.
Miss Zwarts has cystic fibrosis and has been fighting for three years to get the medication on the plan to make it affordable for everyone.
Because of the cystic fibrosis, she takes about 30 pills a day, she wears a breathable vest and nebulizer to clean her lungs twice a day – 40 minutes at a time – she has a persistent and chronic cough and she is taken for two to two weeks. three weeks in hospital 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, allowing her to spend less time in the hospital and having more time for a "normal" young lady.
Orkambi costs $ 260,000 per year and treats the cause of the disease instead of the symptoms, such as the medicine Miss Black now has.
Her father Vincent Zwarts was completely in the clouds when he received the call on Friday after the fourth and final attempt to make the drug affordable was accepted.
The couple has sought support for years to extend the life of Miss Zwarts.
Yesterday Miss Zwarts was caught when asked how the medicine would change her life.
"It will give me a normal life – so I'm not always in the hospital," she said.
"Maybe I can travel now, before I had to stay here and go to the hospital every six weeks."
Mr Zwarts said that so many people had lost all their lives because of the disease and it was high time that the Advisory Committee on Pharmaceutical Benefits listened.
It was a bittersweet moment for him because he was happy to know that Sabrina now had access to the drug, but he was sad because he lost his eldest daughter, Jessica, five years ago when she was 18 because of her cystic fibrosis.
"People were marching to Parliament to have this medicine put on the plan," he said.
"The entire CF community came together and we let our voices be heard.
"More than 1300 adults in Australia now have access to this drug." Miss Zwarts said the trip was long – "four years too long". In 2016 she shared her fate with NewsMail readers and they gathered behind her with support.
Cystic Fibrosis Australia CEO Nettie Burke said Orkambi improved lung function and BMI, reduced exacerbations and hospitalization plus staves or even stopped lung damage.
Orkambi also often results in better results for mental health, because less personal and family stress results in less depression and fear for everyone.
"When we united as a community, our voice became too loud to ignore," she said.
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