DESPITE lobby groups and families expressing their outrage at the removal of the IEM grant in this year’s Federal Budget, the government is sticking to its guns.
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President of the Metabolic Dietary Disorders Association (MDDA), Monique Cooper said removing the IEM grant would mean that families risk not being able to afford to feed their children safely.
The Federal Government currently provides $256.75 per month to 904 people with the disease.
“For these individuals a vital expensive medically prescribed diet, supplemented by the funding, is required to avoid brain damage, seizures, liver failure, coma and in some cases death,” Ms Cooper said.
“One in 15,000 Australians are born with PKU (the most common of the IEMs disorders) every year. While the numbers are small, the impact of these invisible disorders is great.”
The grant currently supplements some of the very expensive food costs.
One box of specialised low protein cereal costs $14.65.
A loaf of specialised low protein bread costs $10.
Specialised low protein grated cheese costs $28.
Federal Health Minister Susan Ley said the decision to cut the funding was made because low-protein foods are now more readily available and cheaper than when the program began in 2001.
She said since the program began there had been a number of improvements made to support people with protein metabolic disorders and to reduce the cost of managing the condition.
Opposition Leader Bill Shorten raised the issue during Question Time in Federal Parliament on Wednesday.
But the Federal Health Department advised yesterday that it is sticking by its cuts to the IEM grant.
“The Metabolic Dietary Disorders Association’s own dietary handbook points out that a number of now regular supermarket items like corn flour to replace wheat flour or rice milk instead of dairy milk can be used by people managing a protein disorder,” Ms Ley said.
“Foods for people managing protein metabolic disorder are now more readily available and cheaper than when the program began.
“Over the years there have also been a number of new medicines introduced onto the Pharmaceutical Benefits Scheme that assist with the specific nutritional requirements for people with protein disorders.”
Ms Cooper said she was “outraged’ that the government had pulled the funding without any consultation with the representative bodies for sufferers of the disease – the MDDA, PKUNSW or the Australasian Society of Inborn Errors of Metabolism.
