CFA calls for KALYDECO approval for kids - CF Buzz

To the Cystic Fibrosis Community

On 5th November 2016, the PBAC will meet to decide whether KALYDECO is approved for reimbursement for 2-5 year old children in Australia.

This label extension will greatly benefit 30 little Australians. The KALYDECO KIWI study resulted in a drop in sweat chloride and most importantly, little lungs were kept healthier for longer.

CFA is asking the cystic fibrosis community to support the approval of KALYDECO for 2-5 year olds by going to the PBAC website and complete a consumer comment. Comments will not be accepted after 5pm (AEST) on 5 October 2016.

The key points that need to be made are:

  1. There is nothing like Kalydeco … it is a drug that treats the disease, not the symptoms.
  2. Kalydeco slows down lung damage resulting in better health outcomes across a child’s life.
  3. Overseas studies show 50 mmol/litre reduction in sweat chloride.
  4. Every day of delay, young lungs are experiencing irreparable damage.

200 Australians over the age of 6 years are currently are benefiting from KALYDECO. Let’s expand it by 30 people and support little Australian between the ages of 2-5 year.

Please call or email CFA if you have any questions or if you would like to help further create a My Story video and send it to

You can view some wonderful creative films on our website.

All My Story videos will be used to make our case with the PBAC.


Nettie Burke


Cystic Fibrosis Australia

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