MEDIA RELEASE
For immediate release - 22 May, 2015
Inborn Error of Metabolism (IEM) Food Grant Cut
The Metabolic Dietary Disorders Association (MDDA) – the national patient support group for families living
with an Inborn Error of Metabolism (IEM) - has been advised by the Department of Health today that the
IEM food grant (a grant supporting individuals living with rare metabolic diseases) will finish in December
2015 and will no longer be funded by the government.
This is part of the government’s recent cuts to health budget, and effects families who are the most
vulnerable and who only have a small voice because their condition is rare.
Background on IEM’s and supplementary dietary costs

People who have Inborn Errors of Metabolism (IEM) - Amino Acid cannot break down specific
amino acids in protein. They are treated by a low protein diet using special medical foods, a
prescribed amino acid supplement and, for some more rare IEMs, a medication.

This low protein diet means most food groups are unable to be consumed including meat, dairy,
legumes, eggs and only very small amounts of grains. This medically prescribed diet is essential to
prevent a range of health problems from brain damage, seizures, liver failure and in some cases
death.

Since 2001 people who are required to maintain this very low protein have received a food grant
from the Department of Health - this is currently $256.75 per month. The last official figures
provided by the Department of Health were provided in 2013 and stated that 904 people were
receiving the grant. We have formally requested more current figures but have not received them.

Since last year recipients require a formed signed by the treating specialist stating they are either
complaint with diet and monitoring requirements or that they have a plan in place to address
compliance to receive their grant.

The special low protein food is available from 3 suppliers and a pre-made loaf of bread from one of
the suppliers is $10.00 and a box of cereal is $14.95. A member has just paid $28 for grated cheese
and $20 for sliced cheese plus a $40 delivery fee. These foods are not subsidised by PBS as they are
special medical foods not prescription products.

The prescribed amino acid supplement replaces essential proteins and nutrients that normally
come from food. These supplements are subsidised by PBS but the foods are not.

Without treatment of both supplements and special medical foods people with IEMs experience
range of outcomes from irreparable brain to premature death.
This decision will have a disastrous effect on the family budgets of this rare group of Australian families
already struggling with the many challenges that come with living with a rare and silent disease. As it is
a genetic disorder many families have more than one child with the disorder. The costs on untreated or
poorly treated IEM's is much higher with children who are not well managed experiencing cognitive
deficits requiring additional help in educational settings, some requiring more hospital admissions,
adults being less likely to be employable due to concentration, cognitive issues, anxiety and depression
arising from poor metabolic management and unlike so many disorders this can all be prevented by
effective management of the disorder.
The MDDA & PKUNSW are extremely concerned about this. We were not consulted in any way about
the impact of this decision and we have contacted ASIEM (Australasian Society of Inborn Errors of
Metabolism) and it has been confirmed that they were not consulted either. Based on the information
provided on the Department of Health website and in the budgetary papers, we believe that the basis
for the decision is not factually correct. The stated reason is that more formulas are now on the PBS
and low protein foods are more easily accessible and lower in cost.
These are two separate issues, and our response is;
o
o
the cost of increased number of formulas available does not represent an additional cost to
the government as the prescribing of formulas is related to body weight,
and, low protein foods are available from one additional supplier in the last eight years and
are not any cheaper (in fact prices have increased along with delivery costs), and are
absolutely essential to enable a low protein diet for life for effective IEM management..
The excerpt from the budget papers reads
...ceasing the Inborn Error of Metabolism programme, as key medicines are now listed on the
Pharmaceutical Benefits Scheme and low protein foods are now much more readily available at lower
cost;.
This statement about medicines directly contravenes the purpose of this grant (also stated on this
same DoH website)...
...The purpose of the IEM grant is to enable people with IEM to stay on strict diets and ensure long term
health is maintained. Non-food items, such as medications and supplements, cannot be purchased with
money provided under the Programme.
Further Resources
More about the IEM food grant and the Department of Health’s decision to cease its provision can be
found here.
http://www.health.gov.au/internet/main/publishing.nsf/Content/Inborn+Error+of+Metabolism+Progra
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Contacts:
Please call 1800 288 460 or email media@mdda.org.au for all media enquiries or further information.
MDDA Head Office
PO Box 33, Montrose, VIC 3765
(03) 9723 0600
www.mdda.org.au