About the program
The Inborn Errors of Metabolism (IEM) program helps people with protein metabolic disorders pay for their specialised food.
Why it is important
This initiative is important because people with an IEM need low-protein, high-fat and phenylalanine-free diets. These foods are very expensive. The money is used to buy these foods, so they stay on their diets and stay healthy.
Access to the scheme is restricted to people diagnosed with the following conditions:
- HMG-CoA lyase deficiency
- homocystinuria, not pyridoxine responsive (cystathionine β synthase deficiency)
- lysinic protein intolerance (LPI)
- maple syrup urine disease (MSUD)
- ornithine amino transferase deficiency (hyperornithinaemia, gyrate atrophy of the retina)
- dihydropteridine reductase (DHPR) deficiency
- phenylketonuria (PKU)
- tyrosinaemia: type I (hepatorenal tyrosinaemia, fumarylacetoacetate hydrolase deficiency), type II and type III
- 3-methylcrotonyl-CoA carboxylase deficiency
- Guanidinoacetate methyltransferase (GAMT) deficiency
- cobalamin deficiencies (A, B, C and D)
- glutaric aciduria type I (glutaryl CoA dehydrogenase deficiency)
- isovaleric aciduria
- methylmalonic acidaemia
- propionic acidaemia
- argininaemia (arginase deficiency)
- argininosuccinicaciduria (ASA lyase deficiency)
- carbamyl phosphate synthase (CPS)
- citrullinaemia (ASA synthase deficiency)
- N-acetylglutamate synthase (NAGS)
- ornithine transcarbamylase deficiency (OTC).
Patients diagnosed with DHPR, hyperphenylalaninemia and PKU must be reassessed and reapply for the program every 12 months.
It is the responsibility of all recipients to schedule review appointments, as required by their treating metabolic specialists and to ensure that reapplications are provided to the Department.
The monthly payments may cease if the reapplication documentation is not received by the Department within 15 months from the last application.
Recipient of IEM Personal Benefit - Responsibilities
Recipients or their Parents/Guardians/Carers are required to notify the Department of any changes to the recipient’s:
- Dietary compliance;
- Australian residency status;
- Contact details, including: current address, email address and telephone number;
- Bank account details;
- Custody or care arrangements (if applicable); and
- Name Change.
The Department must receive the notification within 14 days from the date of such changes. Failure to notify the Department within this period may result in the Department suspending the benefit.
The initiative aims to help people with an IEM stick to their specialised diet and stay healthy.
Who we work with
We fund and administer this program, including assessing new patient applications. Patients must be diagnosed by an approved metabolic specialist.
The Australasian Society for Inborn Errors Of Metabolism helps assess applications for specialists to become approved metabolic specialists under the program. Only approved metabolic specialists can refer patients to the IEM program.
The IEM program is ongoing.
The Metabolic Dietary Disorders Association (MDDA) is a national self-help group supporting people affected by IEM. See their site for further information and support.