Pharmac committee recommends continued funding of food thickeners for people with MND

Today, Pharmac has published the minutes of the August PTAC (Pharmacology and Therapeutics Advisory Committee) meeting, where the proposal to defund food thickeners for people with MND with a swallowing disorder was discussed.

The recommendation from the advisory committee is for access to funded food thickeners be retained in the community for people with MND with a swallowing disorder.

Read the committee minutes, here.

The committee also recommended that further work needed to be undertaken by Pharmac to better define the groups of people with persistent and progressive swallowing disorders, who would be considered to have an equivalent health need to people with MND.

During the meeting, the committee considered points such as food thickeners use as an established and long-standing aspect of clinical practice, which is supported by New Zealand and international clinical guidelines.

A distinction of two groups of dysphagia was also made, summarising that one group of dysphagia stabilises or improves over time. The other group experiences persistent and progressive dysphagia that worsens with time, such as people with bulbar and pseudo bulbar palsy, including but not limited to, people with MND, people with advanced Parkinson’s disease, people with advanced multiple sclerosis, and people with Huntington’s disease.

Motor Neurone Disease NZ also presented to the committee, highlighting and reiterating the health need of people with MND, and the benefit offered by food thickeners.

PTAC's role is to provide objective clinical advice to Pharmac. It’s worth noting that the recommendations from PTAC to Pharmac are advice, and the final decision will still need to be made by Pharmac’s Board of Directors or its delegate. This however is a crucial and positive step in that direction.

Scott Arrol, Motor Neurone Disease NZ chief executive, says it’s a great outcome for people with motor neurone disease, and their caregivers, family, and whānau.

“We are thrilled with the recommendation from PTAC, and grateful for the support and positive engagement from Pharmac in achieving this recommendation”.

Thank you to everyone who submitted feedback, provided real life experience, and assisted us as we advocated on behalf of the MND community for funded access to food thickeners.

Read the background and August 2023 PTAC minutes.