Michelle Landry, Federal Member for Capricornia, is calling on the Minister for Health, Mark Butler, to show leadership and cut the bureaucratic red tape that is preventing children from living healthier and happier lives.
Children with the debilitating disease, Cystic Fibrosis, have been dealt a devastating blow following news the life changing medication, Trikafta, has been referred back to the Pharmaceutical Benefits Advisory Committee for further review after talks between the Department for Health and Vertex came to a standstill.
Families were given false hope in December last year after the PBAC recommended Trikafta, a drug that halts the progression of Cystic Fibrosis, be added to the Pharmaceutical Benefits Scheme for children aged six to 11.
Federal Member for Capricornia, Michelle Landry, stated the bureaucratic red tape is preventing children who are suffering every day from a treatment that will change their lives.
“There are over 500 children across Australia who are living with Cystic Fibrosis and had seen the light at the end of the tunnel when Trikafta was recommended by PBAC in December last year.
“Families have been left completely gutted following this news. It is completely incomprehensible that this government can give hope to these families and then tear it away,” Ms Landry said.
On the same day it was revealed Trikafta would be going back to the PBAC for review, New Zealand announced they have made the same drug available for children aged six to 11.
This is a first in our nation’s medical history for New Zealand to make a treatment available before Australia.
“I met with CEO of Cystic Fibrosis Queensland, Petrina Fraccaro, the day after this awful news was delivered. Ms Fraccaro told me just how devastated these families are. “There is no time to waste for these children. The Minister for Health needs to step up and take leadership of his department because the longer he lets this drag out, the longer these children suffer,” Ms Landry said.
