Author: YTT Admin
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Trikafta for 6-11 going back to the PBAC
Disappointingly Trikafta for 6-11s is going back to the PBAC as an agreement has not been reached. It will be discussed this week with the outcome released on April 21. This is not good enough Mark Butler MPVertex Pharmaceuticals. Heading back to the standard PBAC process leads to further uncertainty with the approval and timeframe,…
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Oli’s Story
Oli has always appeared to be a picture of health but inside, he is fighting a big and unpredictable battle against Cystic Fibrosis. One Trikafta could help arm him against. Last year, Oli caught a ‘cold’ that he was unable to shake off. Over many months his parents watched him steadily decline to the point…
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Drugs were found
In a scary place
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James’ Story
Stories like this show exactly why Trikafta needs to be funded urgently. Mark Butler MPVertex Pharmaceuticals, please list Trikafta without delay so kids like James can spend less time in hospital and more time being a healthy kid. ‘Currently on our third day in hospital with DIOS (distal intestinal obstruction syndrome) which is a common…
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Listing progress update
The medicine status website was updated this week and shows that step 5 of 8 is underway. Whilst there are multiple parts within each step, the progress is underwhelming for those who are seriously unwell now. Some of these children are in hospital right now and urgently need access to Trikafta. Every day matters for…
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Wade’s Story
Young Wade is one of the 500+ kids waiting for Trikafta. Since June last year he’s spent 5 months on IV antibiotics. Two different harmful lung bacteria mean his current treatments involve injections and four antibiotics, on top of the nebulisers and physiotherapy to clear the constant mucus. His lung function is just 51%. His…
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Moments with family
When you have a life shortening illness, it’s all about the important moments with your family and friends. These children had to spend time in hospital over the festive season and missed those special moments. Trikafta is a life-saving medication that can change all this, giving these kids the chance to live a longer, healthier…
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We need your help!
Have a read below about what happens after a PBAC meeting & what we can do to help fast track the listing! What happens after a PBAC meeting? After a positive recommendation, there are several steps before a medication can be listed on the PBS. Amongst these steps are the negotiations between the Department of…
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It’s a yes!
Great news it’s a yes! Trikafta for children aged 6-11 has received a positive recommendation, moving much closer toward access However this recommendation has not been given a priority pathway for listing (which Trikafta for 12+ had), so we need to make sure the next step, involving further negotiations, happens as quickly as possible! The…
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Meesha’s Story
Meesha is fortunate to have been on Trikafta for the last 4 months, after being accepted on the compassionate program. For the last few years she has been very unwell and missed most of grade 2. Her lung function dropped as low as 32% and she was 95% tube fed, not eating anything most days.…