A LOVING Bundaberg father is furious the government has put a price on his daughter's life, one the family cannot afford.
To look at Sabrina Zwarts you wouldn't think she carries the burden of knowing her life will be cut short.
The 19-year-old is sitting on a time bomb as she has a disease where the average life expectancy is only 27 years of age.
Sabrina has cystic fibrosis, CF, a disease which took her older sister Jessica's life three years ago when she was only 18-years-old.
Because of the condition Sabrina 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.
Her lungs function at 50% and she takes two breaths to every one of an average person.
"I do this every day or I will die," she said.
Vincent Zwarts is calling for a medication to be and placed on the PBS to help give Sabrina the chance to live not only longer but also without the complications of CF.
Orkambi costs $260,000 a year and treats the cause of the disease rather than the symptoms, like the the medication Sabrina is on now.
After losing his eldest daughter to the disease Mr Zwarts is doing all he can to have the decision made earlier this year over turned.
He has started a petition to help force the hand of the PBAC in order to save this daughter's life.
A Department of Health spokesperson said the Pharmaceutical Benefits Advisory Committee, which recommends what medications go on the PBS, considered that, at the price requested, the benefits offered by the drug did not provide sufficient value for money - particularly given uncertainty in the evidence about long-term gains in lung function and survival and uncertainty in long-term safety.
Cystic Fibrosis Australia CEO Nettie Burke said it was ridiculous there was a drug which would not only improve but also save lives and suffers couldn't have access to it because of the price.
"Orkambi increases lung function and BMI which is vital in CF patients," she said.
"It keeps them breathing which in turn keeps them going."
Vertex will resubmit the drug to the PBAC on November 5.
You can sign a petition calling for Orkambi to go on the PBS at http://chn.ge/2bUiV9o.