Motor Neurone Disease New Zealand responds to Pharmac's proposal to phase out funding of food thickeners

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, Friday 31 March 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 consult@pharmac.govt.nz.

If you’re willing, please copy in or send your feedback directly to laura.huet@mnd.org.nz 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.