Reinstate the Inborn Error of Metabolism (IEM) Food Grant
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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 form signed by the treating specialist stating they are either compliant 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 damage 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.
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