First MND Insight Research findings: Many Kiwis missing out on life-extending treatment

Motor Neurone Disease NZ (MND NZ) is delighted to announce the publication of the first academic paper using data gathered in the 2025 MND Insight Research study from nearly 300 respondents in our MND community.

Published in the New Zealand Medical Journal (NZMJ) today, Riluzole use and reasons for non-use in people with Amyotrophic Lateral Sclerosis in Aotearoa New Zealand shares important findings about the use of riluzole for the most common form of motor neurone disease in New Zealand.

The paper was authored by MND NZ Research Advisor and Best Practice Advocate, Dr Natalie Gauld ONZM PhD FPS with co-investigators including two neurologists Dr James Cleland and Dr Sarah Buchanan.

MND is a fatal, rapidly progressing neurodegenerative disease that affects the brain and spinal cord with no cure. In New Zealand, the only treatment available for MND (ALS variant) is a tablet form of riluzole – known by the brand name Rilutek – taken twice daily.

What were the main findings of the paper?

• Riluzole use in New Zealand is concerningly low amongst survey respondents despite it being the only approved and funded medicine shown to lengthen a person’s life with amyotrophic lateral sclerosis (ALS) – the most common form of motor neurone disease (MND) in New Zealand.

Only 48 per cent of the Insight Research participants with MND (ALS variant) took riluzole. In contrast, figures from four European ALS centres show an 83 per cent uptake and Australian estimates from a 2025 MND Australia survey, show a 76 per cent uptake.

• Making liquid riluzole available and funded in New Zealand will increase uptake because it makes it easier to take for people with ALS who often experience swallowing difficulties and require feeding tubes.

• The latest riluzole information needs to be reflected in conversations between medical professionals and people living with MND and their whānau.

Most recent research shows, on average, riluzole extends survival on average by 7 to 11 months. While early trials showed a median increased survival of 2 to 3 months compared to a placebo.

 What are we doing with these findings?

• Continuation of our advocacy work calling for the Government to introduce and fund liquid riluzole in New Zealand.
• Working with the Australian liquid riluzole distributor to help facilitate its introduction into New Zealand.
• Presentation of results to Neurological Association of New Zealand (NANZ) conference in November 2025 by Dr Sarah Buchanan.
• Dissemination of published paper to medical professionals and MND NZ community with supporting information via MND NZ communications channels and regional support advisors.  
• Up-to-date riluzole information published on the MND NZ website and in our riluzole fact sheet.

“Having the MND Insight Research data is vital to our advocacy efforts, and we look forward to following this riluzole paper with further publications to help inform best practice for our MND community.” – MND NZ Research Advisor Dr Natalie Gauld ONZM PhD FPS

How do I find out more information about riluzole?

• Talk to your neurologist or prescribing medical professional
• Go to our riluzole information web page
• Download our riluzole fact sheet. You may want to take this information to your medical professional’s appointment if you are going to discuss riluzole.

How do I read the full published paper?

• Download the full paper from the NZMJ website here. You will need to complete a short registration – it is free to do so.

Riluzole paper authors

We thank Principal Investigator Dr Natalie Gauld, MND NZ Research Advisor and Best Practice Advocate, and the paper authors for their time and expertise.

• Dr Jo Hikaka, Senior Lecturer, Te Kupenga Hauora Māori, University of Auckland.
• Associate Professor Stephen Buetow, Department of General Practice, University of Auckland.
• Dr James Cleland, Neurologist, Tauranga Hospital, Honorary Senior Lecturer University of Auckland, Medical Advisor MND NZ.
• Dr Sarah Buchanan, Neurologist, Health New Zealand, Southern; Senior Lecturer, Department of Medicine, University of Otago.
• Professor Chris Frampton, Statistician, University of Otago, Christchurch.

This research was funded by a Health Research Council Grant, a Motor Neurone Disease New Zealand grant, and some voluntary time by the authors. The MND Impact Research questionnaire was distributed through MND NZ communication channels, our regional support advisors, and the MND NZ Registry.