A Bunbury mother, whose son is living with Cystic Fibrosis has expressed her nerves ahead of Friday’s long awaited decision on whether a ‘life-changing’ drug will be made accessible.
In May, Taryn Barrett spoke to the Mail about the drug, Orkambi, going before the Pharmaceutical Benefits Advisory Committee in July.
It was Vertex Pharmaceuticals’ fourth submission to the PBAC to list Orkambi on the Pharmaceutical Benefits Scheme for the treatment of certain Cystic Fibrosis patients aged 12 years and over.
The pharmaceutical company also made its first submission for patients aged six to 11 years.
As the drug isn’t on the PBS, it costs $250,000 a year for patients.
Ms Barrett has been a vocal advocate for the cause, and as the public announcement draws closer, she again shared her feelings.
Ms Barrett’s youngest son, two-year-old Connor, has Cystic Fibrosis.
She said she was incredibly anxious as the decision loomed.
“It is hard to know what the outcome will be,” she said.
“It is sounding a bit more positive this time around – Vertex has agreed to reduce the price and the minister has made some encouraging comments but we can’t get out hopes up too high.”
People with Cystic Fibrosis develop an abnormal amount of mucus within the lungs, airways and the digestive system
This causes impairment of the digestive functions of the pancreas and traps bacteria in the lungs resulting in recurrent infections, leading to irreversible damage.
Lung failure is the major cause of death for someone with Cystic Fibrosis.
The PBAC is expected to make the announcement between 10am and 1pm on August 17.