Proposal to phase out funding of food thickeners in the community
We're seeking feedback on a proposal to stop funding food thickeners for use in the community, following advice from our clinical advisors that there is insufficient evidence to support use of food thickeners and there is some evidence of a risk of harm from their use.
A food thickener is a product that is added to food or liquid to modify it with the goal of helping people who have difficulty swallowing their food or liquid. Having difficulty swallowing is called dysphagia. Food thickeners are currently funded in the community, subject to eligibility criteria for people who have motor neurone disease and have difficulty swallowing.
Under this proposal, from 1 August 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 December 2024.
Why we’re proposing this
Pharmac has received advice from our clinical experts, the Pharmacology and Therapeutics Advisory Committee (PTAC) and the Special Foods Advisory Committee (previously called the Special Foods Subcommittee of PTAC), on the use of food thickeners on several occasions.
The most recent clinical advice was provided by PTAC in May 2021. During this meeting, PTAC considered information Pharmac received from people who are interested and affected by the use of food thickeners. We sought information from these groups through a Request for Information (RFI) that Pharmac released in January 2021.
The aim of this RFI was to help us decide what our future, long-term approach to food thickeners should be. We sought advice and information including:
- 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 that people consider relevant for Pharmac to know to support its future decision-making on the funding of food thickeners.
We received a number of responses from a range of different groups including dietitians, speech language therapists, managers of care facilities, neurologists, people using food thickeners, nurses and suppliers of food thickeners. The responses identified a number of additional groups of people to the currently funded group that respondents considered had the most need or the potential to gain the most benefit from food thickeners. The responses to this RFI can be found here.
The record from PTAC’s May 2021 meeting can be found here. [PDF, 747 KB] At this meeting, PTAC reaffirmed its previous recommendation that the community funding of food thickeners should cease. In reiterating its previous recommendation, the Committee noted that:
- people with dysphagia have a high unmet health need, however, there was insufficient evidence that food thickeners would address these unmet needs by providing clinically meaningful benefits for people so affected
- there is some evidence of a risk of harm from use of food thickeners in people with dysphagia, namely reduced fluid intake, undernutrition, and potential reduction in quality of life
- there are large numbers of people living with dysphagia from a range of causes, making it difficult to define a specific patient population that may benefit from food thickeners.
- any widening of funded access to food thickeners for other people living with dysphagia would likely represent a substantial cost to the Combined Pharmaceutical Budget.
PTAC also acknowledged that there are inequities in the access to food thickeners in the community that may persist, if food thickeners were delisted. However, the Committee considered it was not reasonable to recommend continued funding for food thickeners as there is evidence that their use can cause harm and poor evidence to support potential health benefits.
Prior to this, the most recent relevant advice on food thickeners was provided by the (then) Special Foods Subcommittee of PTAC in December 2013. [PDF, 125 KB] At this meeting the Subcommittee recommended that:
- food/fluid thickeners and pre-thickened fluids should not be listed in the Pharmaceutical Schedule for use in patients with dysphagia in the community; and
- the currently funded food thickeners should be delisted from the Pharmaceutical Schedule.
Full details on prior consideration by our clinical advisors and the advice provided on food thickeners can be found on Pharmac’s Application Tracker here(external link).
As noted above, Pharmac has previously received clinical advice from the Special Foods Subcommittee [PDF, 125 KB] of PTAC at its meeting in December 2013 which noted that there was no evidence to suggest any specific group of people with dysphagia caused by separately identifiable diseases or illnesses that would receive greater benefit from thickened fluids than any other group of people with dysphagia. The Subcommittee’s recommendation was to delist food thickeners from the community Pharmaceutical Schedule, due to the evidence supporting use of thickened fluids in people with dysphagia being weak and of low quality.
This advice highlighted an inconsistency in the groups of people able to access food thickeners in the community. This inconsistency is one of the key reasons why we decided to undertake a review of the future funding of food thickeners last year.
Current funding arrangements
Food thickeners are currently only funded in the community for people who have motor neurone disease and have difficulty swallowing. Funding is enabled via application for a Special Authority approval, which is made by the person’s healthcare practitioner.
The current Special Authority criteria to receive funded food thickeners in the community are as follows:
Special Authority for Subsidy
Initial application only from a dietitian, relevant specialist or vocationally registered general practitioner. Approvals valid for 1 year where the patient has motor neurone disease with swallowing disorder.
Renewal only from a dietitian, relevant specialist, vocationally registered general practitioner or general practitioner on the recommendation of a dietitian, relevant specialist or vocationally registered general practitioner. Approvals valid for 1 year for applications meeting the following criteria:
- The treatment remains appropriate and the patient is benefiting from treatment; and
- General Practitioners must include the name of the dietitian, relevant specialist or vocationally registered general practitioner and date contacted.
Pharmac currently funds two different food thickeners: Nutilis powder and Karicare Aptamil Feed Thickener.
Details of the proposal
Following clinical advice that there is insufficient evidence to support use of food thickeners and there is some evidence of a risk of harm from their use, we are proposing that:
- From 1 June 2023, no Special Authority approvals for new patients would be granted for food thickeners.
- From 1 October 2024, food thickeners would no longer be funded by Pharmac for use in the community. This means that food thickeners would no longer be listed in the community Pharmaceutical Schedule (i.e. they would be ‘delisted’), and all funding, including funding for people who meet the current Special Authority criteria, would stop.
This proposal would not impact the use of food thickeners in Te Whatu Ora hospitals.
Consultation closes at 4:00 pm, Wednesday, 31 May 2023 and feedback can be emailed to firstname.lastname@example.org
What would the effect of this proposal be?
If this proposal is approved, from 1 August 2023 no Special Authority approvals for new patients would be granted for funded food thickeners in the community.
Any people who have a Special Authority approval for food thickeners at 1 August 2023 would continue receive access to funded food thickeners up to 1 December 2024 provided the renewal criteria continue to be met. Data on use of the funded treatments shows us that people who have been using funded food thickeners remain on treatment for an average of 10–17 months. From 1 December 2024, Pharmac would no longer fund food thickeners for use in the community.
We acknowledge that, despite our clinical advice regarding the effectiveness of food thickeners and the risk of harm, there will be some people who have been taking funded food thickeners for some time and may have difficulty moving from the funded treatments by 1 December 2024. We would appreciate feedback on this point as in recognition of this, we could consider providing individual approvals for ongoing funding after 1 December 2024 for these people on application to Pharmac. We’d like to understand the likely clincial circumstances that might apply before developing an individual approval mechanism.
There are currently approximately 100 people with Special Authority approvals for food thickeners who would be affected by this proposal.
Who we think will be interested
- People who use, or wish to use, food thickeners and their family and whānau
- Clinicians and health professionals involved in the care of people with swallowing difficulties
- Suppliers of food thickeners and pharmaceutical wholesalers
To provide feedback
We ask that any feedback is sent to Pharmac before 4:00 pm, Wednesday 31 May 2023.
Feedback can be emailed to email@example.com
All feedback received before the closing date will be considered by Pharmac’s Board (or its delegate) prior to making a decision on this proposal.
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