07 February 2017

Huge Win for Young Cystic Fibrosis Sufferers

I am delighted to hear that, from today, children aged two to five will have immediate and free access to Kalydeco® (ivacaftor) – a life-changing drug which addresses the causes of cystic fibrosis rather than just the symptoms. 

Corangamite resident Mrs Kate MacPherson and her husband Steven have been fighting for this decision for a long time on behalf of their 3 year old son Brody who was diagnosed with the condition at 4 weeks of age. 

“We are ecstatic to hear the news that Kalydeco will be listed on the Pharmaceutical Benefit Scheme for the 30 children aged 2-5 with Cystic Fibrosis (that carry the G551D gene) including our little Superhero, Brody,” Mrs MacPherson said. 

I have been proud to advocate for the MacPherson family and thank the Minister for Health, Greg Hunt, for his wonderful support  in making this decision. The availability of Kalydeco will provide these children with a real chance at a longer, healthier and happier life. 

“Thanks must also go to Cystic Fibrosis Australia, Cystic Fibrosis Victoria, the Yes To Kalydeco campaign and all those that have supported Brody and our family over the past 3 years, and more recently our local member Sarah Henderson for helping be our voice,” Mrs MacPherson said. 

Had Brody not been given access to the drug, his lungs would’ve continued to deteriorate with experts giving him a life expectancy of just 37 years, Mrs MacPherson said. 

Kalydeco is due to be formally added to the Pharmaceutical Benefits Scheme (PBS) on 1 May 2017 following a recommendation from the Pharmaceutical Benefits Advisory Committee (PBAC). 

However, up until 1 May manufacturer, Vertex Pharmaceuticals has agreed to provide the drug free of charge for children aged two to five. 

Without government subsidy, the treatment would cost each patient around $300,000 per year, putting it beyond the reach of most Australians. 

Today’s announcement is a huge win for parents, family members and friends who have been seeking this medicine for their children. 

7 February 2017