Understanding the Groundbreaking NZ Medical Journal Study on MND Treatment
A newly published study in the New Zealand Medical Journal (NZMJ) has cast a spotlight on a critical gap in motor neurone disease (MND) care in Aotearoa New Zealand. Titled 'Riluzole use and reasons for non-use in people with amyotrophic lateral sclerosis in Aotearoa New Zealand,' the research reveals alarmingly low uptake of the country's only publicly funded MND treatment. Led by researchers affiliated with leading universities, this work draws from real-world data collected through the MND Insight survey, highlighting barriers that prevent many Kiwis from accessing life-extending therapies.
The study, part of Motor Neurone Disease New Zealand's (MND NZ) broader research initiatives, involved 115 respondents living with amyotrophic lateral sclerosis (ALS), the most common form of MND. Only 48% were currently using riluzole, with 36% never having taken it and 12% having discontinued. This nationwide effort underscores the power of collaborative academic research in informing policy and practice.
What is Motor Neurone Disease and Why Does It Matter in New Zealand?
Motor neurone disease (MND), also known internationally as amyotrophic lateral sclerosis (ALS) in its most prevalent variant, is a rapidly progressive neurodegenerative condition. It affects the motor neurons—the nerve cells responsible for controlling voluntary muscles—leading to muscle weakness, paralysis, and eventually respiratory failure. There is no cure, and the average survival post-diagnosis is 2-3 years, with 50% of patients passing within 30 months of symptom onset.
In New Zealand, MND strikes harder than in many places. Over 400 people live with the disease at any time, with two new diagnoses and two deaths each week. Research from the University of Auckland indicates New Zealand has one of the world's highest MND mortality rates, at approximately 2.8 per 100,000 people. Factors contributing to this elevated burden remain under investigation, fueling urgent calls for enhanced research and treatment access.
Cultural context adds layers: Māori communities, comprising about 6% of study respondents, face unique challenges in diagnosis and care, emphasizing the need for equitable, te Tiriti o Waitangi-aligned approaches in healthcare delivery.
Riluzole: New Zealand's Sole Funded MND Treatment Explained
Riluzole (brand name Rilutek), approved by Pharmac—the agency overseeing public drug funding in New Zealand—since October 2013, is an oral tablet taken twice daily. It works by modulating glutamate levels in the brain, reducing excitotoxicity that damages motor neurons. Initial clinical trials showed a modest 2-3 month survival extension, but recent real-world observational studies report 7-11 months or even 6-19 months benefit, particularly when started early.
Despite these gains, riluzole requires crushing for patients with swallowing difficulties—a common issue in bulbar-onset ALS (26% of cases)—often leading to inconsistent dosing. Adherence among users is high (81% miss no doses weekly), but access remains the bottleneck.
Key Statistics from the MND Insight Research
The MND Insight survey, conducted in March-April 2025 by MND NZ, achieved a 50% response rate from ~285 invited participants. After exclusions for non-ALS variants, the 115-person cohort was predominantly NZ European (88%), male (64%), and recently diagnosed (67% since 2022).
- 48% currently on riluzole
- 60% ever used it
- 20% discontinuation rate, mainly due to side effects like nausea, rash, fatigue
- Lower uptake in bulbar-onset (p<0.05), private diagnoses, and pre-2013 cases
These figures paint a picture of missed opportunities, where evidence-based therapy reaches fewer than half of eligible patients.
Barriers to Riluzole Uptake: Patient and Provider Perspectives
Never-users cited not being offered the drug (most common), doubts on effectiveness ('3-month gain not worth it'), and side effect fears. Discontinuers echoed side effects, with some reporting hospitalization. Qualitative insights revealed outdated perceptions of benefits and practical issues like crushing tablets for PEG tubes.
- Lack of prescription or awareness
- Perceived minimal benefit based on old trials
- Swallowing challenges in advanced disease
- Myths around caffeine interactions (debunked)
Neurologists presented findings at conferences to bridge knowledge gaps, stressing updated evidence.Read the full NZMJ study.
How New Zealand Lags Behind International Benchmarks
NZ's 48% uptake pales against global standards: 83% in European ALS centers, 76% Australia, 91% US/Northern Ireland/France, up to 100% offered in some. Specialized MND clinics abroad boost rates (89% Spain vs. 30% non-specialist). Australia's liquid riluzole funding since ~2019 exemplifies proactive access.
| Region | Uptake Rate |
|---|---|
| New Zealand | 48% |
| Australia | 76% |
| Europe (ALS centers) | 83% |
| US | 91% |
These disparities highlight systemic issues in prescribing practices and formulation availability.
The Urgent Case for Liquid Riluzole in New Zealand
Bulbar-onset patients and those on feeding tubes struggle with tablets, prompting MND NZ's December 2025 call to Pharmac for liquid riluzole funding. Available in Australia (funded 6+ years), UK, US, and Spain, it ensures precise dosing and easier administration. Crushing tablets risks uneven absorption and casing blockages.MND NZ advocacy page.
Dr. Natalie Gauld, lead investigator and MND patient: "Everyone with ALS should have access to liquid riluzole and accurate information on its life-extending properties."
University-Led Innovations Driving MND Research Forward
New Zealand's academic institutions are at the forefront. The University of Auckland's NZ MND Research Network, established 2017 and funded by MND NZ, connects biomedical, clinical, and allied health researchers to accelerate studies. Study authors hail from UoA's School of Pharmacy and General Practice departments, and University of Otago's Dunedin School of Medicine.
Funded projects include genetics research revealing high NZ incidence, with Centre for Brain Research contributions. For aspiring researchers, opportunities abound in research jobs and postdoc positions at these unis via AcademicJobs.com.
Stakeholder Views and Pathways to Improvement
Dr. James Cleland (UoA Honorary Senior Lecturer): "This highlights collaboration's strength between patients, whānau, healthcare, and research teams." MND NZ CEO Mark Leggett echoes urgency for liquid funding.
Implications span policy (Pharmac review), education (neurologist training), and equity (Māori access). Actionable steps: update guidelines, fund alternatives, expand registries.
Looking Ahead: Clinical Trials and Emerging Therapies
MND NZ's 2025-2028 strategy targets two clinical trials in NZ by 2026, alongside registry growth to 300+ enrollees. PLL Therapeutics plans phase II in early 2026. Global advances like tofersen (SOD1-targeted) inspire hope, with NZ poised via university networks.
Careers in this field? Check academic CV tips and clinical research jobs to contribute.
Pharmac website for funding updates.
Photo by Javad Esmaeili on Unsplash
Empowering Change: What Can Be Done Next?
This NZMJ study galvanizes action: prescribers must prioritize riluzole with modern evidence, Pharmac expedite liquid approval, and academia sustain momentum. Patients advocate via MND NZ; academics pursue grants.
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