Pharmac proposal to phase out funding of food thickeners

Motor Neurone Disease NZ is extremely disappointed with Pharmac’s proposal to phase out funding of food thickeners for people with motor neurone disease (MND) from 1 June 2023.

Two thirds of people with MND experience difficulties swallowing, known as dysphagia, with thin liquids often causing aspiration and recurrent chest infections arising from aspiration. Difficulties swallowing also increases the risk of dehydration, weight loss, and malnutrition.

Food thickeners have been funded in the community for almost 30 years for people with MND. They are a useful component in the management of MND, with evidence supporting improved life expectancy for people with MND who maintain good nutrition and weight[i]^[ii].

But Pharmac is citing insufficient evidence to support potential health benefits as its rationale for delisting food thickeners. It also suggests that there is risk of harm caused by food thickeners, namely reduced fluid intake, undernutrition, and potential reduction in quality of life.

Motor Neurone Disease NZ Chief Executive Scott Arrol says, “Food thickeners are used frequently by people with MND who have difficulty swallowing. There is clear feedback from clinicians and patients to support the role thickeners play in maintaining dignity, quality of life, adequate nutrition, hydration, and overall prognosis.”

In 2021 Pharmac sought feedback on the use of food thickeners in the community in response to a request to widen access to include other causes of dysphagia. The agency admits other groups would benefit, but the widening of funded access would likely represent a substantial cost to the pharmaceutical budget.

“Rather than broadening access as indicated by feedback from clinicians and affected groups, Pharmac has chosen to propose cutting the funding for people with MND,” says Scott.

Under Pharmac’s proposal, from 1 June 2023 no new patients would be able to start using funded food thickeners in the community and food thickeners would no longer be funded for use in the community for any patients from 1 October 2024. The proposal does not affect people receiving food thickeners in public hospitals.

Delisting food thickeners will simply increase the financial burden for people with MND to safely live their ‘normal’ life. Consequently, its likely to have a negative impact on their lifespan due to the increased risk of dehydration, weight loss, and malnutrition.

“We are not aware of any alternatives to food thickeners and there are no medical treatments to improve swallowing function” says Scott.

“The use of food thickeners is included as a clinically effective method of managing nutrient intake for people with MND in the Best Practice Recommendations for the Management of MND guidelines, developed by a working group of clinical practitioners to standardise and improve care for people with MND across Aotearoa.”

“For those with this devastating, incurable, and ultimately terminal disease, the proposed delisting of publicly funded food thickener is just another blow to an already traumatic and difficult situation” Scott adds.

Pharmac is seeking feedback on its proposal to delist food thickeners until 4.00pm, Wednesday 31 May 2023. You can read the proposal here. We urge as many people as possible who have experienced or witnessed a health benefit to using food thickeners to send feedback to .

If you’re willing, please copy in or send your feedback directly to so we can reference your responses as part of the official MND NZ feedback submission.

The more people join in, the louder our voice will be.

Further information:

About motor neurone disease (MND)

• MND attacks the motor neurones, or nerves, in the brain and spinal cord. Messages gradually stop reaching muscles, causing the muscles to weaken and waste away. This gradually robs the person from the ability to walk, eat, talk, swallow, and breathe.
• It is a highly challenging and ultimately terminal condition, with an average life expectancy of between three and five years.
• In New Zealand three people a week will receive a life shattering MND diagnosis. A further two people will die from the disease each week.
• MND can affect adults at any age but most are over the age of 40, with the highest incidence occurring between the ages of 50 and 70 in New Zealand.
• In approx. 90% of cases there is no known family history.
  
  

About Motor Neurone Disease NZ (MND NZ)

• Our vision is a world without MND. Until that day comes, our mission is to make time count for everyone affected by MND in New Zealand.
• We do this through providing free, personalised emotional and practical support to people with MND and the loved ones supporting them.
• Whether that’s helping families make memories through accessible holidays, grants to improve quality of life, or an advocate to fight their corner and secure essential home adaptations faster, we’re here to help when time matters most.
• We also fund ground-breaking research and supports clinical trials for a future without MND.
• We receive no government funding and rely on the public’s generosity to fund support services.

[i] Shimizu T, Nakayama Y, Matsuda C, Haraguchi M, Bokuda K, Ishikawa-Takata K, et al. . Prognostic significance of body weight variation after diagnosis in ALS: a single-centre prospective cohort study. J Neurol. 2019; 266:1412–20. [PubMed] [Google Scholar]

[ii] Halliday V, Zarotti N, Coates E, McGeachan A, Williams I, White S, Beever D, Norman P, Gonzalez S, Hackney G, Ezaydi N, Stavroulakis T, Bradburn M, McDermott C. Delivery of nutritional management services to people with amyotrophic lateral sclerosis (ALS). Amyotroph Lateral Scler Frontotemporal Degener. 2021 Aug;22(5-6):350-359. doi: 10.1080/21678421.2021.1874991. Epub 2021 Jan 28. PMID: 33507093; PMCID: PMC8312499.