![\"Illustration](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/01\/4JU0ZNO_AFP__20230323__f0337332__v1__HighRes__MotorNeuronDiseasesIllustration_jpg.jpeg\")
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\nIllustration of motor neuron diseases, showing degeneration of motor neurons in anterior horns of spinal cord.
\nPhoto: Science Photo Libra via AFP\n<\/p>\n
A low uptake of New Zealanders with motor neurone disease are using the only publicly-funded treatment available for the disease, a new study shows.<\/p>\n
Motor neurone disease (MND) was a fatal, rapidly progressing neurodegenerative disease that deprived people of their ability to move, talk, and eventually breathe.<\/p>\n
The only Medsafe-funded treatment available for the most common variant of the disease, known as amyotrophic lateral sclerosis (ALS), was a riluzole tablet.<\/p>\n
A research paper was published in the New Zealand Medical Journal on Friday.<\/p>\n
Research showed 48 percent of research participants with ALS took riluzole, a lower uptake seen overseas.<\/p>\n
Four European ALS centres showed an 83 percent uptake while an Australian MND survey recorded 76 percent usage.<\/p>\n
The study was led by Motor Neurone Disease New Zealand (MND NZ) research advisor Dr Natalie Gauld, and neurologists Dr James Cleland and Dr Sarah Buchanan.<\/p>\n
Participants, who were not taking riluzole, said they were either worried about its effectiveness or side effects, had not been offered or prescribed it, or had never heard of it.<\/p>\n
People with swallowing issues (bulbar onset) were less likely to be prescribed riluzole, underlining a need for the liquid form to be introduced in New Zealand, researchers said.<\/p>\n
“As lead investigator on this research and a person living with motor neurone disease, it has been concerning to see our riluzole uptake is so low when compared internationally.<\/p>\n
“I believe it is vital for everyone with ALS to have access to liquid riluzole and the right information about its life-extending properties to aid uptake in New Zealand,” Gauld said.<\/p>\n
Recent research showed, on average, riluzole extended survival by seven to 11 months, Gauld said.<\/p>\n
“This is meaningful for those living with this fast-progressing terminal disease and their wh\u0101nau. Earlier riluzole trials only showed a median increased survival of 2 to 3 months compared to a placebo.”<\/p>\n
The average life expectancy of the disease was two to three years after diagnosis, with 50 percent of people dying within 30 months of the onset of symptoms.<\/p>\n
Two people each week in New Zealand were diagnosed with MND.<\/p>\n
![\"Dr](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/01\/4JU13CK_Dr_Natalie_Gauld_ONZM_PhD_FPS_MND_NZ_Research_Advisor_jpg.jpeg\")
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\nDr Natalie Gauld was the project’s lead researcher.
\nPhoto: Supplied \/ Motor Neurone Disease New Zealand\n<\/p>\n
Dr Cleland, one of the paper’s co-authors, said he was pleased to see the paper published, which brought benefits to people living with MND in New Zealand.<\/p>\n
“This research highlights the strength of collaboration between patients, wh\u0101nau, and healthcare and research teams. It shows that New Zealand can play a meaningful role in advancing MND research, and we look forward to ongoing partnerships focused on reducing the burden of this devastating disease for New Zealanders,” he said.<\/p>\n
“It also highlights the evolving nature of science and the need for clinical practice to adapt as evidence changes over time.”<\/p>\n
Dr Gauld and MND NZ chief executive Mark Leggett had contacted Pharmac and Medsafe to ask the government to urgently introduce and fund a liquid form of riluzole in New Zealand.<\/p>\n
The findings from Friday’s paper was also presented at a neurological association conference in November last year to raise awareness amongst neurologists.<\/p>\n