Joanne Ryan MP
Federal Member for Lalor
Joanne Ryan MP

Cystic Fibrosis and Kalydeco Medication

I rise to table this document to the parliament. This bundle of papers is actually over 13,000 signatures calling for the government to add the drug Kalydeco to the Pharmaceutical Benefits Scheme. This is a drug that can provide hope to those with cystic fibrosis. It is a new and innovative drug that has potential to provide relief to patients. It is a drug that also costs around $300,000 per patient—beyond the reach of most if not all those who require the treatment.

This need was first brought to my attention by some local families whose lives are critically affected by cystic fibrosis—passionate families wanting to do the best for their children. These very active families in my electorate of Lalor have collected these signatures in just over two months. I would like to thank the MacPherson, Haikalis and Rathbone families for bringing this to my attention and the hard work undertaken to collect this huge number of signatures. I am sure all those in the House will join me in wishing Brody MacPherson, Ellie Haikalis and Tim and Mark Rathbone, along with those living with cystic fibrosis, all the best for their future treatment options. Given one baby in every 2,500 are born with cystic fibrosis, this is a vital decision that needs to be made as soon as possible.

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