Time is short for Sabrina to get life-changing medication
TODAY is the last day for the community to help Sabrina Zwarts try to change the government's decision about a life-saving drug.
Sabrina, 19, has cystic fibrosis a disease which will cut her life short, as the average life expectancy is 27.
She is currently in hospital fighting to stay alive.
The 19-year-old wants to make the most of what she has and a medication called Orkambi can help do this.
Father Vincent Zwarts knows what it is like to lose a daughter after Sabrina's older sister Jessica died from the disease three years ago.
The pair is campaigning to have a decision made earlier this year overturned have Orkambi recommended by the Pharmaceutical Benefits Advisory Committee for listing on the PBS.
This will help give her the chance to live not only longer but also without the complications of CF.
Without the PBS listing, the drug will cost more than $260,000 a year and is something the family can not afford.
Unlike the medication Sabrina is on now, it treats the cause of the disease rather than the symptoms.
Sabrina was admitted to Brisbane's Prince Charles Hospital last week where she will stay for two weeks to help maintain the disease.
She said it was difficult being away from family and friends and that she had had to put her life on hold including work.
"If I had Orkambi I believe I wouldn't have been admitted into hospital at the moment," she said.
"It's hard having to go in so soon as I was only in hospital just over two months ago.
"But that's life and that's what I have to do to stay as healthy as I can be."
She now 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.
Mr Zwarts started the petition to help force the hand of the PBAC in order to save this daughter's life.
A Department of Health spokesperson said the PBAC, 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 told the NewsMail last month 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 chn.ge/2bUiV9o.
Or to send comments straight to the PBAC go to http://www.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form