PM greets lawnmower trek but no change in Motor Neurone Disease monitoring planned

The Federal and NSW Labor governments appear to have rejected a push to improve monitoring of Motor Neurone Disease (MND), despite a face-to-face plea to the Prime Minister from an MND sufferer himself.

Former truck driver Warren ‘Woz’ Acott made an 800 km trek on a ride-on lawnmower from Toollen (near Bendigo) in Victoria to Parliament House in Canberra to raise awareness of the fatal illness that weakens the nervous system and muscles.

He met with Prime Minister Anthony Albanese armed with a petition signed by 5300 people asking for MND to be made a nationally notifiable disease, which would oblige government to monitor, record and track cases in each geographical area to give researchers the data they need to discover causes and cures.

However, the Federal Department of Health and Aged Care told Region state governments would need to act first before MND would be added to the federal government list of nationally notifiable diseases it maintains.

“For status as a nationally notifiable disease to have any practical effect, the disease must be notifiable in the states and territories, as this will provide the basis for laboratories and state and territories to collect the information under jurisdictional public health legislation,” a departmental spokesperson said.

The NSW Government also has the power to make MND notifiable at a state level, but a NSW Health spokesperson said that was not likely to happen.

“Generally, the conditions that are notifiable to the Secretary of NSW Health are infectious diseases, such as COVID-19, which require a clearly defined public health response to limit transmission, which does not apply to MND,” the spokesperson said.

The NSW Health Minister is Ryan Park and his federal counterpart is Mark Butler.

Mr Acott’s daughter, Belinda, said her family was not prepared to give up.

“A couple of people told us that a notifiable disease needs to be infectious, but we know they did make cancer a notifiable disease,” she said.

She’s launched an e-petition that will back up the paper petition.

“On average, each day in Australia two people die from MND and two people are diagnosed with MND,” the petition states.

“This is a relatively high prevalence compared to the rest of the world … if MND became recognised as a notifiable disease, not only would more people know about it, but 1) those suffering from it would have better access to the support services they need; and 2) more research could be done into how and why this disease affects so many.”

As of Tuesday (26 March), the e-petition had attracted just under 3000 signatures. It will be open for signatures until 23 April 2024.

Belinda’s motivation increases as she sees her 66-year-old dad struggling more and more each day.

“Dad was diagnosed eight months ago and we’ve seen a rapid decline physically … he’s lost the use of his arms and legs and now it’s affected his eating and swallowing,” she said.

“We don’t know how it happened … nobody else in our family has had it. That’s why we need to make this a notifiable disease.”

She was, however, satisfied with how her father was greeted and welcomed by the Prime Minister.

“My Dad said to him – ‘imagine how you’d feel if you woke up and weren’t able to scratch your n***,” she said.

“[Mr Albanese] genuinely took a moment to consider it. He listened to us carefully.”

The Prime Minister told ‘Woz’ his trek was “an amazing achievement”.

“I just salute your bravery going 800 km just to see a bunch of politicians in Parliament House,” he said.

Woz’s journey took him through the Riverina towns of Wagga, Leeton and Griffith, where rates of MND are seven times the national average.

In Wagga he fell over when trying to move into a wheelchair, hitting his head on concrete and ending up in Wagga Base Hospital, but he continued his journey the next day.

More information on Woz’s journey and petition can be found by following the Mow Down MND Facebook group.