Family 'kicked in the guts' as drug not added to PBS
A BUNDABERG family has spent the last six months hoping for a miracle, waiting in anticipation for the government to change its stance on a life-saving drug.
Sabrina Zwarts has cystic fibrosis, a disease that will cut her life short - the life expectancy is between 27 and 37 years of age.
The 19-year-old and her father Vincent Zwarts campaigned for six months to have the drug, Orkambi, added to the Pharmaceutical Benefits Scheme.
Sadly, the government did not overturn the decision and Orkambi was not added to the PBS today.
Without the PBS the medication comes at a cost of more than $260,000 a year and is simply unobtainable for the young woman.
Mr Zwarts is outraged the government put a price on his daughter's life, and as hope fades, he would like them to look at adding it to the PBS again within six months.
"All the evidence we can see shows a significant improvement to the life of CF sufferers,” he said.
"This is a kick in the guts.
"By not adding it, it will come at a cost which isn't money and that will be devastating.”
Sabrina remained hopeful after an anxious six months of fighting.
"I'm devastated the government won't step in and help,” she said.
"I'll keep fighting and hope for a miracle.”
Her day-to-day life will continue with taking about 30 pills and wearing a mask to stop anything affecting her breathing or lungs.
She will continue to be admitted to hospital every two to three months for three weeks at a time.
This is something her father says is costing the government more money.
"There are about 1300 sufferers who have to go to hospital for weeks on end as they do not have access to Orkambi,” Mr Zwarts said.