The announcement that New South Wales (NSW) will be the first state to classify Motor Neurone Disease (MND) as a notifiable disease is a significant development in the fight against this devastating condition. This move, according to Associate Professor Marco Morsch, director of the Macquarie MND research centre, is a crucial step towards understanding the causes, patterns, and progression of MND. By making diagnoses structured public-health data, the registry will enable researchers to examine geographic patterns, environmental exposures, diagnostic delays, and service gaps with greater precision.
MND, also known as Amyotrophic Lateral Sclerosis (ALS), is a rare, incurable, and fatal condition characterised by rapid deterioration in physical function. While several gene mutations are linked to MND and inherited in 5-10% of cases, the remaining 90-95% are sporadic, resulting from a complex combination of genetic, environmental, and lifestyle factors. This classification as a notifiable disease is a major step forward in the global fight against MND, according to Professor Dominic Rowe, a neurology researcher at Macquarie University.
The decision comes at a critical time, with MND deaths tripling since the late 1980s, and higher mortality rates in regional areas. Early symptoms of MND include muscle weakness, fatigue, twitching, nighttime cramps, loss of fine motor skills, and changes in speech and swallowing, which can often resemble other muscle or neurological disorders. Approximately 85% of patients with MND die from respiratory failure, and voluntary assisted dying is permitted for patients with neurodegenerative diseases in the final 12 months of their life.
The federal government has also announced that older people with MND will receive urgent priority for the Support at Home program. This comprehensive approach to MND, including improved data collection and support services, is a crucial step towards better understanding and managing this complex condition. As Professor Rowe notes, NSW now has the opportunity to lead the world in the way MND is monitored, researched, and understood, which is a significant development in the global fight against this devastating disease.
