Source: Radio New Zealand
Illustration of motor neuron diseases, showing degeneration of motor neurons in anterior horns of spinal cord. Science Photo Libra via AFP
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.
Motor neurone disease (MND) was a fatal, rapidly progressing neurodegenerative disease that deprived people of their ability to move, talk, and eventually breathe.
The only Medsafe-funded treatment available for the most common variant of the disease, known as amyotrophic lateral sclerosis (ALS), was a riluzole tablet.
A research paper was published in the New Zealand Medical Journal on Friday.
Research showed 48 percent of research participants with ALS took riluzole, a lower uptake seen overseas.
Four European ALS centres showed an 83 percent uptake while an Australian MND survey recorded 76 percent usage.
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.
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.
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.
“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.
“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.
Recent research showed, on average, riluzole extended survival by seven to 11 months, Gauld said.
“This is meaningful for those living with this fast-progressing terminal disease and their whānau. Earlier riluzole trials only showed a median increased survival of 2 to 3 months compared to a placebo.”
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.
Two people each week in New Zealand were diagnosed with MND.
Dr Natalie Gauld was the project’s lead researcher. Supplied / Motor Neurone Disease New Zealand
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.
“This research highlights the strength of collaboration between patients, whānau, 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.
“It also highlights the evolving nature of science and the need for clinical practice to adapt as evidence changes over time.”
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.
The findings from Friday’s paper was also presented at a neurological association conference in November last year to raise awareness amongst neurologists.
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– Published by EveningReport.nz and AsiaPacificReport.nz, see: MIL OSI in partnership with Radio New Zealand
