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.
Eligibility
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
- hyperphenylalaninemia
- 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 they provide us with any reapplications.
The monthly payments may cease if we do not receive the reapplication documentation within 15 months from the last application.
Recipient of IEM Program personal benefit responsibilities
Recipients or their parents/guardians/carers are required to notify us of any changes to the recipient’s:
- dietary compliance
- Australian residency status
- contact details, including
- current address
- email address
- telephone number
- bank account details
- custody or care arrangements (if applicable)
- name change.
We must receive the notification within 14 days from the date of such changes. Failure to notify us within this period may result in us suspending the benefit.
IEM Program personal benefit payment
As of 1 January 2025, the IEM personal benefit payment is $298.36 per month. Indexation is applied on 1 January each year. We will release the IEM personal benefit payments in the first full week of each month.
Goals
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.
Status
The IEM program is ongoing.
Related information
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.
Application forms
Inborn Errors of Metabolism program forms
Contact
