Hard working member for Capricornia Michelle Landry welcomed news that children aged two to five will have immediate and free access to Kalydeco – a life-changing cystic fibrosis drug.
Kalydeco is a life-changing medication that addresses the causes of cystic fibrosis rather than just the symptoms. It was previously only available to children older than six years of age.
“I have personally advocated for this decision, after hearing the story of Chantelle and Clinton Evans, and their two year old daughter Victoria,” Ms Landry said.
“Victoria was diagnosed with cystic fibrosis when she was just a baby.
“She has been fighting lung infections with daily medications and physiotherapy sessions her entire life.
“Her parents spoke to me about their difficulties obtaining Kalydeco, and explained the night and day difference it would make for Victoria’s life.
“As well as raising Victoria’s plight with senior colleagues in Canberra, I also made a submission to the Pharmaceutical Benefits Advisory Committee when it was considering this issue.
“Expanding access to this vital drug is fantastic news for children like Victoria. We know that many parents have been worried about how their young son or daughter could get access to this life-changing drug. Now they have it.
“Without government subsidy, the treatment would cost families around $300,000 per year.
“Cystic fibrosis is the most common life threatening recessive genetic condition affecting young people in Australia. It affects organs such as the lungs and pancreas causing irreversible damage and can cause death.
“With access to Kalydeco treatment, children like Victoria can experience a better quality of life with fewer respiratory and gastrointestinal complications, improved lung function and fewer hospitalisations.
“The Federal Government is making sure that this life-changing drug is no longer out of reach for Australian families that need it.
“This is another part of our rock solid commitment to Medicare, ensuring that people have access to medicine when they need it.”
Kalydeco is due to be formally added to the Pharmaceutical Benefits Scheme (PBS) on 1 May 2017.
Until then, the manufacturer (Vertex Pharmaceuticals) has agreed to provide the drug free of charge for children aged two to five.
From 1 May 2017, the drug will cost $6.30 for all concessional patients and $38.80 for general patients.
Information about medicines subsidised by the Government through the PBS is available at www.pbs.gov.au