If the government won't fund Trikafta, we just need to go and get it ourselves.....well at least raise more awareness so the government will approve Trikafta on the PBS.
Join us on the journey through the rest of May (Cystic Fibrosis Month) by riding, running, walking, paddling…..even crawling if need be, and track your KMs. We are going to Boston to bring Trikafta to Australia. We will do this by:
- Travelling (theoretically) from Newcastle (John Hunter Hospital) to the Vertex headquarters in Boston, Massachusetts. Approximately 32,000km roundtrip.
- Spreading the word about the Sweat4CF mission on all of your social media accounts by sharing this campaign
- Exercise as often as possible and have your social network support you by sharing the Sweat4CF website so more people become aware and get involved. We need your help to make Trikafta available in Australia to improve the lives of thousands of Australians with Cystic Fibrosis.for this worthy cause.
- Take as many pictures as possible of your progress – include the #SWEAT4CF posting on social media
Track workouts anywhere & anytime and complete goal.
ABOUT THE ORGANIZATION
Our daughter Mia Warren was diagnosed with Cystic Fibrosis at 6 weeks old. Mia is now 14 and her condition continues to deteriorate. Mia's condition has been worsening by the year and her ''normal'' lung function now averages between 50-60% - when she is sick Mia has a lung function below 40% and spends weeks in hospital at a time.
Mia's fight against CF is similar to thousands of other sufferers here in Australia.
CF sufferers rely on drugs to improve their quality of live. Trikafta is a groundbreaking drug which has the ability to change lives. It is produced by Vertex which is based in Boston, Massachusetts.
Compared to other drugs, the difference Trikafta brings to the fight against Cystic Fibrosis is its wide-ranging benefits for the majority of people suffering from the disease. Trikafta will benefit anyone with one gene mutation of deltaF508 - over 90% of people with CF have at least one gene mutation deltaF508.
Studies have shown that Trikafta improves lung function by close to 20% on average. Importantly, sustained improvement in lung function also increases live expectancy considerably. Some of those who have been on the trial of the Trikafta have been able to come off the lung transplant list.
Unfortunately, in April 2021, Trikafta was not recommended to be placed on the PBS (Pharmaceutical benefits scheme) by the Pharmaceutical Benefits Advisory Committee. One years supply of Trikafta for one CF patient would cost $410,000 per year.
We need more pressure on the government and Vertex to make Trikafta available and you can help by raising awareness.
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