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, 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.
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