Riluzole use and reasons for non-use in people with amyotrophic lateral sclerosis in Aotearoa New Zealand

Amyotrophic lateral sclerosis (ALS), the most common form of motor neurone disease (MND), is a neurodegenerative condition with typically short life expectancy. Riluzole, the only survival prolonging medication funded in Aotearoa New Zealand, has high uptake in other developed countries.

To quantify riluzole use in New Zealand, identify factors associated with its use and explore reasons for non-use.

In 2025, people in New Zealand diagnosed with MND were invited to self-complete questionnaires. Data were collected via Qualtrics, exported to Excel and analysed using descriptive and inferential statistics. Respondents with progressive muscular atrophy or primary lateral sclerosis diagnoses were excluded from this analysis.

Of 115 respondents, 55 (48%) were currently taking riluzole, 14 (12%) had taken it previously and 42 (36%) had never taken it. Common reasons for non-use included riluzole not being offered and concerns about lack of effectiveness and/or side effects. Uptake was lower with bulbar onset than limb onset (p<0.05).

People with ALS in New Zealand have low uptake of riluzole, despite its survival benefits. Prescribers and people with ALS need up-to-date information about riluzole's benefit-risk profile to increase uptake and confidence in prescription and use. Liquid riluzole is needed in New Zealand to aid uptake.