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Working towards 'Lives unaffected by cystic fibrosis'
Kalydeco Update - September 28, 2016
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 completing 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
5. 200 Australians over the age of 6 years are currently are benefitting from KALYDECO. Let’s expand it by 30 people and support little Australians between the ages of 2-5 years.
Please call CFA on 02 98895171, if you have any questions. If you would like to create a My Story video, please send it to firstname.lastname@example.org. All My Story videos will be used to make our case with the PBAC. You can view some of the wonderful creative films here.
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