Louise - My life with Alpha-1 and the cost of hope

At 62, Louise shares her powerful journey—one that began with severe respiratory issues in childhood and led to a life-changing diagnosis of alpha-1 antitrypsin deficiency at 55.

She sheds light on augmentation therapy, a crucial treatment that helps prevent further lung damage in alpha-1 patients. But in Australia, this therapy isn’t subsidised, making it an almost impossible option for most—costing around $100,000 per year.

While other countries include it under insurance schemes, Australians are left without support. Louise calls for urgent change, highlighting how the lack of awareness and access to treatment affects not just patients, but also their children and grandchildren who may unknowingly carry the same genetic condition.

This is more than a personal story—it’s a call for action.