Two-year-old Victoria Evans who has cystic fibrosis.
Two-year-old Victoria Evans who has cystic fibrosis. Kerri-Anne Mesner

Life changing cystic fibrosis drug to become free

IT'S taken 10-months of lobbying, 10,000 signatures but now parents of children with cystic fibrosis have received some good news.

Children aged two to five will have immediate and free access to Kalydeco - a life-changing cystic fibrosis drug. 

Kalydeco is a 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.

Capricornia MP Michelle Landry made the announcement about the drug's availability this morning after she was approached by Rockhampton couple Chantelle and Clinton Evans who said it would help their two-year-old daughter Victoria. 

"Kalydeco is known as a wonder drug for these little kids and there are about 30 kids in Australia that need it," Mr Evans said.

"It treats a mutation that she has with cystic fibrosis. It actually targets the symptoms and it's not a cure, but it's the closest thing they've got at the moment and it should significantly reduce chances of a lung transplant later in life.

"What it means is that it could increase the length of her life"

The average age for a person with cystic fibrosis at the moment is 40.

"She (Victoria) could have had it 10 months ago, so we've been working with Michelle and had a petition with over 10,000 signatures," Clinton said.

He said there were many families that had also been lobbying for the drug. 

"We are very fortunate she loves outdoor activities. She loves the water. Likes to even try surfing and went on a tube ride for the first time the other week. She's on the trampoline all the time. She loves My Little Ponies and How to Train Your Dragons... so she's a regular child. To look at her you wouldn't know any different.

"Most importantly, she's happy." 


Clinton Evans with two-year-old daughter Victoria who has cystic fibrosis.
Clinton Evans with two-year-old daughter Victoria who has cystic fibrosis. Kerri-Anne Mesner

"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," Ms Landry said. 

"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." 

Cystic Fibrosis

  • Cystic Fibrosis primarily affects the lungs and digestive system because of a malfunction in the exocrine system, responsible for producing saliva, sweat, tears and mucus.
  • There is currently no cure. People with CF develop an abnormal amount of excessively thick and sticky mucus within the lungs, airways and the digestive system. The mucus causes impairment of the digestive functions of the pancreas and traps bacteria in the lungs resulting in recurrent infections which lead to irreversible damage. Lung failure is the major cause of death for someone with CF.
  • From birth, a person with CF undergoes constant medical treatments and physiotherapy.
  • In Australia, one in 2,500 babies are born with CF
  • Kalydeco is due to be formally added to the Pharmaceutical Benefits Scheme (PBS) on May 1, 2017.
  • Until then, the manufacturer (Vertex Pharmaceuticals) has agreed to provide the drug free of charge for children aged two to five.
  • From May 1 , the drug will cost $6.30 for all concessional patients and $38.80 for general patients.

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