Kids are dying from treatable diseases: expand newborn screening
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I'm 15 and I was born with a rare chronic blood disease. I know lots of kids like me born with treatable diseases who are suffering or dying -- but still the Health Minister won't properly fund a newborn screening program that could save lives.
It took years for my blood disease to be diagnosed. I have to go to hospital every two weeks for treatment. Doctors tell me if it'd been any later I'd have been permanently affected. Stuck in fear. It's a terrifying thought -- but sadly, that's a reality for lots of families I know.
Australia’s newborn screening program is lagging behind the rest of the world and kids are unnecessarily suffering -- just because the Federal Government won't fund a newborn screening program for critical diseases.
It's heartbreaking. It’s wrong and it’s totally fixable by our Health Ministers. Federal and state governments have been excruciatingly slow to act. Diagnosis takes, on average, five years. By this time, many kids are permanently disabled, or dead. All from totally Treatable Diseases.
In Australia we screen for far less conditions than in the US, and we have a smaller program than most comparable countries.
Greg Hunt, please I'm begging you to urgently fund a newborn screening program so other families like mine don't unnecessarily suffer.
Don't let another baby die of a disease that could’ve been treated all along.
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