Christmas wish granted for sick kids

The Pharmaceutical Benefits Advisory Committee (PBAC) has made a recommendation for Aussie kids, aged 6 to 11 living with cystic fibrosis, to have access to life-changing miracle medication, Trikafta.

Cystic fibrosis is a debilitating genetic disease, where patients have a significantly sorter life expectancy. Trikafta is the closest treatment to a cure.

We have already seen the great benefits of Trikafta for people aged 12+ with at least one F508 del mutation and now 500 Aussie kids will be able to benefit too.

However, this essential medicine is not yet available for Aussie kids as it is yet to be made available on the Pharmaceutical Benefits Scheme (PBS). Indeed, until it is subsidised, Trikafta is inaccessible for most children at a cost of almost $250,000 a year.

“It is critical that this recommendation is implemented as quickly as possible. We urge the government and Vertex to ensure that Trikafta is made available without delay, so that children can benefit immediately,” patient advocacy group Cystic Fibrosis Australia CEO, Jo Armstrong, said.

“The sooner Trikafta is available, the sooner the benefits can be realised, including reduction in infection, reduced hospitalisation, and the opportunity for a better quality of life.”

Every four days a child is born in Australia with cystic fibrosis, and 1 in 25 Aussies carry the cystic fibrosis gene. Cystic Fibrosis Australia remains committed to securing the best health outcomes for everyone in the community.