Funding of food thickeners – seeking information

Medicines

Consultation Closed

A food thickener is a product that is added to food or liquid to modify it to help people who have difficulty swallowing food or liquid. Having difficulty swallowing is called dysphagia.

PHARMAC currently funds food thickeners for use in both the community (at home or residential settings) and in hospital. In the community, PHARMAC restricts funded access to food thickeners for those people who have motor neurone disease with a swallowing disorder.

We are looking at what our longer-term role in the funding of food thickeners could be. To help support us in deciding our future approach, we want to get more advice and evidence on the use of food thickeners.

We are interested in evidence and advice on the use of food thickeners in the community. This includes people who live long-term in residential care facilities. We have previously received clinical advice that there is an inconsistency in the patient groups able to access treatment with food thickeners in the community, and a recommendation to delist food thickeners from Section D of the Pharmaceutical Schedule. Based on the feedback we receive we will determine next steps in what our longer-term role in funding of food thickeners will be.

We are not thinking about making any changes to the funding of food thickeners in hospital (through Section H of the Pharmaceutical Schedule) at this time.

We ask that any feedback is sent to PHARMAC by 5pm Friday 12 March 2021. Feedback can be emailed to consult@pharmac.govt.nz

What type of feedback is PHARMAC looking for?

We are looking for evidence and information about the use of food thickeners. This includes:

  • clinical opinion on the use of food thickeners.
  • any evidence which supports the use of food thickeners in the community.
  • any evidence that questions, or does not support, the use of food thickeners in the community.
  • any other information you consider relevant for PHARMAC to know to support its future decision-making on the funding of food thickeners.

We have some specific questions we are particularly interested in information and evidence on. You do not need to answer all of these questions to provide feedback. These are intended as a guide to providing your feedback - we are interested in getting a wide range of feedback about the use of food thickeners.

  • In what clinical situation would a person be started on a food thickener?
    • Is there a way to clearly define those people with dysphagia who are most likely to need, or benefit from, use of a food thickener? Is this based on severity of dysphagia?
  • How many people are currently using food thickeners (either funded through the Pharmaceutical Schedule, or funded by other means)?
    • How many people might have dysphagia and benefit from the use of food thickeners?
    • How many people currently living in care facilities (e.g. rest homes) have dysphagia that might benefit from the use of food thickeners?
  • Who usually makes the decision to start someone on food thickeners?
    • How is this decision to start someone, for long-term use, on food thickeners made?
  • How often is the use of food thickeners reviewed?
    • How long is someone usually on food thickener(s) for?
    • What evidence/guidance/guidelines are used to support long-term use of food thickeners?
  • What are the goals of therapy when using food thickeners e.g. prevention of aspiration, nutrition, hydration, quality of life?
    • How much do food thickeners help achieve these goals?
      • What evidence is available to support this?
    • Are there any clinical risks associated with thickening food and/or liquids in people diagnosed with dysphagia?
  • Are there any people/patient groups where the use of a food thickener may prevent the need for a feeding tube?
    • If so, which people/patient groups?
    • For how long would the use of food thickeners delay the need for a feeding tube?
  • How is someone’s quality of life improved by a food thickener?
    • How is any improvement in quality of life demonstrated or measured?
    • What evidence is available to support this?
  • Are there any other available products (funded or unfunded) that achieve the same goals as food thickeners aim to achieve?
  • We are aware of a range of different types of food thickeners (e.g. natural, liquid thickeners, powder thickeners). Do these all achieve the same goals?
    • Are there different benefits associated with different types of food thickeners? 

Next steps

We will use the feedback we receive to help decide what our longer-term role in the funding of food thickeners will be. This could mean we no longer fund food thickeners in the community, or there may be no changes to current funding, or it could mean more people could have access to funded food thickeners. 

Feedback received by the closing date will be collated and summarised by PHARMAC staff. We will then take this summary to PHARMAC’s Pharmacology and Therapeutics Advisory Committee (PTAC) for their advice. We are aiming to take this information to their May 2021 meeting.

The advice we receive from PTAC will help inform our next steps. If we propose to make changes to the funding of food thickeners, we will consult publicly on that. 

Background

Current funded access to food thickeners in the community

Food thickeners are classified in the Special Foods therapeutic area in Section D of the Pharmaceutical Schedule. Food thickeners are currently funded for people who meet Special Authority criteria.(external link) This currently limits funded access to people with “motor neuron disease with swallowing disorder”.

The food thickeners currently funded are powder food thickeners. There are two brands funded - Nutilis and Feed Thickener Karicare Aptamil. There are many other thickening agents available in New Zealand including natural thickeners and commercial liquid thickening agents.

Clinical advice PHARMAC has received about use of food thickeners

PHARMAC staff have gone to PTAC and the Special Food Subcommittee of PTAC (Subcommittee) a number of times seeking their advice on food thickeners. The most relevant advice on food thickeners from the Subcommittee was provided in December 2013 [PDF, 125 KB]. This advice was then taken to PTAC in May 2014 [PDF, 286 KB].

Advice from the Subcommittee included:

  • the recommendation that food/fluid thickeners should not be funded in the community.
  • the recommendation that the currently funded food thickeners be delisted from the Pharmaceutical Schedule.
  • there was no current evidence that people with motor neurone disease would get more benefit from thickened fluids than any other patients with dysphagia.
  • the cause of dysphagia would not predict whether a patient would respond well to the use of thickened fluid or food.

The Subcommittee also noted in their meetings in 2015 [PDF, 50 KB] and 2017 [PDF, 564 KB] that there is no consensus among healthcare professionals on the use and benefit of food thickeners. The Subcommittee considered the recommendation to delist was still the current viewpoint.

To provide feedback

We ask that any feedback is sent to PHARMAC before 5 pm Friday 12 March 2021. Due to the nature of these questions and potential impact of any change, we would also welcome the opportunity to meet with any interested groups. If you would like to meet with us to discuss this, have any further information, or have any queries regarding this request for advice, please contact consult@pharmac.govt.nz

Your feedback may be shared

Feedback we receive is subject to the Official Information Act 1982 (OIA). Please be aware that we may need to share your feedback, including your identity, in response to an OIA request. We may also choose to release feedback we receive without receiving an OIA request. This helps to inform the public about our work. This applies to anyone providing feedback, whether they are providing feedback themselves or for an organisation, in a personal or professional capacity. 

We can only keep feedback confidential as allowed under the OIA and other related laws. If you want any part of your feedback treated as confidential, you need to tell us. Please let us know if you want to keep part of your feedback confidential, and why. Is it commercially sensitive, confidential or proprietary, or personal information? Clearly state this and tell us which parts of your feedback you want to keep confidential for these reasons. We will consider your request under our OIA requirements.