My father is disappearing — and our healthcare system is letting it happen.

He spent 40+ years working hard, paying taxes, and contributing to his community. He raised a family, built a life, and saved carefully for his retirement. Now, at the age when he should be enjoying the fruits of that life, he has been diagnosed with Posterior Cortical Atrophy (PCA) — a cruel and progressive brain condition that is slowly stealing his ability to see, to read, to recognise the faces of people he loves.

PCA is often called the "visual variant of Alzheimer's." It doesn't just take memories — it takes the world away, piece by piece. Simple tasks like reading the newspaper, watching television, or navigating a familiar room become frightening and impossible. Without treatment, the decline is rapid and relentless.

What makes PCA particularly heartbreaking is who it targets. This is not a disease that waits for old age. PCA typically strikes people in their 50s — and in some cases, people in their late 40s are receiving this diagnosis. These are people at the height of their working lives, raising children, building careers, contributing to their communities every single day. They are not winding down. They are in full flight — and this disease cuts them down without warning. Worse still, because PCA primarily affects vision and spatial awareness rather than memory, it is frequently misdiagnosed for years as an eye condition or anxiety, leaving patients without answers while precious time slips away.

Treatment exists. But for our family — and thousands like us — it may as well not.

A drug called Donanemab has recently been approved by Australia's Therapeutic Goods Administration (TGA). It is the first drug registered in Australia proven to significantly slow the progression of Alzheimer's disease — slowing decline by one third in those treated. It has already been approved in the United States, Japan, China, and Great Britain. Australia followed, nearly 12 months later. The drug is here. The approval is real. But for most Australian families, it remains completely out of reach.

Each session costs up to $10,000. Monthly treatment is required for 18 months. That's a potential cost of $180,000 — a figure that would wipe out an entire lifetime of savings and superannuation. My father worked his whole life to build that safety net. He never imagined it would be consumed not by living, but by simply trying to survive.

The heartbreaking truth is that Donanemab is not listed on Australia's Pharmaceutical Benefits Scheme (PBS). This means the government offers no financial support whatsoever — patients and their families are left completely on their own. For most, that means going without treatment entirely, not because the treatment doesn't exist, but because they simply cannot afford it.

And the barriers don't stop at cost. Experts warn that there is currently an average three-year delay between a patient's first symptoms and receiving a formal diagnosis of Alzheimer's disease. Waiting times to see a dementia specialist in many parts of Australia exceed twelve months. For a disease where early treatment is everything — where Donanemab must be given at the first signs to have any meaningful effect — these delays are not just frustrating. They are devastating. By the time many patients are diagnosed, the window for treatment has already closed.

For PCA patients, this delay is even more cruel. Someone in their late 40s or early 50s begins noticing something is wrong — perhaps they struggle to read, misjudge distances, or find familiar faces harder to recognise. They visit their GP. They are referred to an eye specialist. They are told there is nothing wrong with their eyes. Years can pass before the words "Posterior Cortical Atrophy" are spoken. By then, for many, it is already too late to access the treatments that might have slowed what was coming.

PCA patients like my father face an additional cruelty. Because PCA is a variant of Alzheimer's, not Alzheimer's in its most recognised form, patients can fall through the cracks of a system that is already struggling to keep up. The diagnostic delays, the cost barriers, and the lack of PBS support don't just affect typical Alzheimer's patients — they affect everyone living in the shadow of this disease.

Australia has an ageing population. There are thousands of families quietly facing this same impossible choice right now: drain everything you have, or watch someone you love decline without help. Many of them are not elderly. Many of them are in the prime of their lives, with decades still ahead of them — decades that this disease is quietly stealing.

This is not good enough.

We are asking the Australian Government and relevant health authorities to:

List Donanemab on the PBS immediately, so that cost is never the reason a patient goes without treatment
Invest urgently in diagnostic infrastructure — more Memory Clinics, more specialist access, and expanded GP education — so patients are identified and treated before it is too late.Ensure PCA patients are explicitly included in the eligibility criteria for approved Alzheimer's treatments, so that no patient is denied help on a technicality.My father gave everything he had to his community and to our family. He deserves better than this. So does yours.

Please sign this petition. Share it. Help us fight for the people we love.