News

Every Moment Matters webinar: New national data reveals the true cost of MND — and why Australia must act now

Published: 21 November 2025

Hundreds of people from across Australia joined MND Australia’s national webinar on the Every Moment Matters report this week, a landmark analysis that lays bare the human, social and financial toll of motor neurone disease.

Hosted by Clare Sullivan, CEO of MND Australia, the event brought together lived experience, clinical insight and national data to show why Australia urgently needs greater coordination, investment and action:

“This report shows the scale of what we’re facing as a country,” Clare told attendees.

“Ultimately, MND can’t wait. Until there’s a cure, we need care for everyone impacted by MND in Australia.”

A disease that costs Australia more than $5 billion a year

The Every Moment Matters report presents the first comprehensive economic picture of MND ever produced in Australia. It estimates the annual cost of MND at $5.02 billion, including healthcare expenditure, lost income, equipment needs and the immense value of unpaid care provided by families.

According to the report, 2,752 Australians are living with MND today, with numbers expected to rise to 4,300 by 2050.

This year alone, 896 Australians are expected to die from MND, a figure projected to increase to nearly 1,500 deaths a year by mid-century.

“It’s a very expensive disease, for governments, families and carers”

For Todd Johnson, who lives with MND and serves on the Board of MND Victoria, the numbers reflect a lived reality many families know too well. He shared his insights on the webinar as a member of the report's expert Advisory Committee:

“It’s a very expensive disease, not just on federal and state economies, but on individuals and their families living with MND.”

Johnson shared the financial pressure of equipment, home modifications, support hours, and the emotional cost that sits behind every line in the report.

“It’s a disease where every decision has a price tag attached,” he said. “Families are carrying financial burdens they never expected, often while facing the hardest moments of their lives.”

Neurologist A/Prof Robert (Rob) Henderson, who joined the webinar to unpack the clinical implications of the data, highlighted a critical structural challenge: Australia still does not have a unified national MND dataset.

“Being able to capture the whole of Australia, not just the capital cities… a proper national registry would be really important.”

Henderson explained that variation in diagnosis, access to care and service pathways across states and regions makes it difficult to plan services or identify inequities.

Nationally coordinated data, he said, is essential to:

• understand where people with MND are,
• improve diagnostic timeliness,
• track disease progression across different populations, and
• support clinicians in providing consistent, evidence-based care regardless of postcode.

The Every Moment Matters report reinforces this need and strengthens calls for a National MND Insights Platform, a world-standard data ecosystem capable of linking clinical, genomic, service and lived-experience data across the country.

Why older Australians are still missing out

A key finding of the report is the stark inequity between Australians who are diagnosed before and after turning 65.

Those diagnosed at 64 years and 364 days can access the NDIS; those diagnosed one day later cannot.

The result is unequal access to equipment, therapies, home modifications and carer support, despite identical clinical need and identical disease progression.

For many webinar participants, this was one of the most confronting findings.

Clare Sullivan noted that this is an urgent point of national reform:

“Age should not determine whether someone receives the support they need,” she said. “This is a system that urgently needs fairness.”

The path ahead: data, unity and national coordination

The Every Moment Matters webinar makes one thing clear: Australia is facing a fast-growing, complex and deeply costly disease without the national coordination required to meet the challenge.

Clare closed the session with a reminder of the stakes:

“Ultimately, MND can’t wait.”

The message from clinicians, researchers, families and people living with MND was the same: Australia needs a nationally integrated approach, it needs a national database, and it needs it now.

If you missed the live event, the full Every Moment Matters Webinar is now available on the MND Australia YouTube channel or through the video link below.