THE rejection of new drugs for children with Cystic Fibrosis (CF) has been a devastating blow for one Rockingham family and CF Australia.
The Pharmaceutical Benefits Advisory Committee (PBAC) rejected the listing of Orkambi outright along with deferring a decision on Kalydeco.
They are specifically targeted for children from the ages of 2-5 years old.
Some families in Rockingham are desperately in need of the drug, including Alison Bruce’s son Heath.
Health has CF and his mother believes it would transform his life.
“Already there have been other children in Rockingham that have lost their battle with CF,” she said.
“He has spent years away from home due to it but last year we had him home.
“I look at this drug and I see a future for him.”
With a price tag of $250,000 per year, it is not an option for families.
If listed on the Pharmaceutical Benefit Scheme the cost would be brought down significantly.
CF WA chief executive Nigel Barker said the organisation was pressuring the Federal Government to reverse the decision.
“We are extremely frustrated. This drug works. It is used in the USA and has shown to be changing lives,” he said.
“We have the best care for CF sufferers in WA, but the drugs we have are more for adults. We need that same level of care for children through these specially targeted drugs.
“Nationally we all agree that it is vitally important that we stand together as a community and push for these decisions to change.”
Independent Candidate for Rockingham Craig Buchanan said he put the issue ahead of politics.
“We have already lost two young people that I’m aware of recently to cystic fibrosis in Rockingham,” he said.
“I know of one family with a six-year-old son struggling with the disease right now.
“Alison knows that all drugs need to have a market value placed on them, but $250,000 per year is an unrealistic and unfair price to put on the life of a young child.”
A protest on the steps of Parliament House in Canberra was held on Tuesday to coincide with the first sitting day of both houses of Parliament.