What is the IEM program?

The Inborn Errors of Metabolism (IEM) program helps people with protein metabolic disorders pay for their specialised food. 

Why is the IEM program 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.

Who is eligible for IEM?

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
  • 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.

What are the goals of the IEM program?

The initiative aims to help people with an IEM stick to their specialised diet and stay healthy.

Who works with us on the IEM program?

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

This collection contains forms related to the Inborn Errors of Metabolism program.

Contact

Inborn Errors of Metabolism program officer

Contact the program officer with questions about the Inborn Errors of Metabolism program, which helps people with certain metabolic disorders pay for their specialised food.

IEM program officer
iemprogramofficer [at] health.gov.au
Postal addresses: 
Portfolio Strategies Division
Department of Health
MDP 1060, GPO Box 9848
Canberra ACT 2601

View contact

Last updated: 
3 March 2020