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
People with a protein metabolic disorder are unable to breakdown certain proteins. They must follow a specialised diet that is low in the protein they cannot metabolise properly to avoid build-up of waste products in the body that can lead to serious health problems. The foods required for these specialised diets are expensive. Monthly IEM Program personal benefit payments assist people with an IEM to stay on their specialised diet and maintain health. The IEM Program personal benefit payments are not intended to be used to purchase non-food items such as medications and supplements.
Eligibility
To receive the personal benefit payment an applicant must:
- Be an Australian resident living in Australia and be Medicare enrolled;
- Be 6 months of age or over;
- Require a medically prescribed diet;
- Have been assessed by a metabolic specialist who is recognised by the department of Health, Disability and Ageing (the department) who confirms the IEM diagnosis and requirement for a medically prescribed diet; and
- Depending on the condition (Form A conditions), be re-assessed regularly (annually) by their metabolic specialist to confirm that the person continues to have special dietary requirements.
Access to the scheme is restricted to people diagnosed with the following conditions:
Form A conditions:
- dihydropteridine reductase (DHPR) deficiency
- hyperphenylalaninemia
- phenylketonuria (PKU)
- argininaemia (arginase deficiency)
- argininosuccinicaciduria (ASA lyase deficiency)
- carbamyl phosphate synthase (CPS)
- citrullinaemia (ASA synthase deficiency)
- cobalamin deficiencies (A, B, C and D)
- glutaric aciduria type I (glutaryl CoA dehydrogenase deficiency)
- guanidinoacetate methyltransferase (GAMT) deficiency
- HMG-CoA lyase deficiency
- homocystinuria, not pyridoxine responsive (cystathionine β synthase deficiency)
- isovaleric aciduria
- lysinic protein intolerance (LPI)
- maple syrup urine disease (MSUD)
- methylmalonic acidaemia
- N-acetylglutamate synthase (NAGS)
- ornithine amino transferase deficiency (hyperornithinaemia, gyrate atrophy of the retina)
- ornithine transcarbamylase deficiency (OTC).
- propionic acidaemia
- tyrosinaemia: type I (hepatorenal tyrosinaemia, fumarylacetoacetate hydrolase deficiency), type II and type III
- 3-methylcrotonyl-CoA carboxylase deficiency
People diagnosed with DHPR, hyperphenylalaninemia and PKU must be reassessed and reapply for the program every 12 months.
It is the responsibility of all Form A 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.
Form B conditions:
People diagnosed with the following conditions are required to submit an application approved by a metabolic specialist recognised by the department for the IEM program and to notify the department of any changes to their circumstances and contact details.
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 Program 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
This 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 applications. People must be diagnosed by an approved metabolic specialist recognised by the department.
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 people 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.
Application forms
Inborn Errors of Metabolism program forms
Frequently Asked Questions (FAQs)
What should the monthly benefit be used for?
The monthly benefit is only to be used to purchase prescribed foods for approved metabolic conditions. Conditions that quality under the Program are listed in the Eligibility section above.
Do I need to stay on my prescribed diet if I want to receive the financial benefit?
Yes, people receiving the IEM Program financial benefit are required to inform the department if they stop their diet so payments can cease. People may be liable to repay funds if they fail to advise the department in a timely manner.
I see a dietician on a regular basis, can they sign the IEM Program application form?
No, a metabolic specialist who is recognised by the department is required to sign the IEM Program application form.
When do I get the monthly benefit payment?
The monthly benefit is processed by the department in the first full week of each month and is for that month. Please allow a few days for funds to reach your account.
I didn't receive a payment, what do I do?
If you don't receive a payment, please contact the department via email iemprogramofficer@health.gov.au or by telephone on 02 6289 8980
The payment may have ceased because of out of date contact details or bank account details. You will then have to submit a new application form to re-join the Program.
What happens if I have shared custody arrangements for my child who is participating in the IEM Program?
The financial benefit can be shared between parents that share custody of a child with an IEM condition. Please contact the department via email (iemprogramofficer@health.gov.au) or by telephone 02 6289 8980 for further information.
What happens when an IEM Program recipient turns 18 years of age?
Once the recipient turns 18 years of age, the IEM Program personal benefits payment should be transferred to the recipient from the person currently receiving the personal benefits payment. A completed Change of Details (Form C) signed by both parties is required to enable the transfer. Delays in submitting a completed Form C may lead to suspension of the IEM Program personal benefits payments.
Why do I have to supply my Medicare card number?
The personal information you provide on the application form is collected for the purpose of determining your eligibility for the IEM Program financial benefit. The information will be used to confirm your Medicare eligibility and establish your permanent Australian residency.
Where can I find more information about IEM?
The Metabolic Dietary Disorders Association (MDDA) is a national self-help group supporting people affected by IEM and aims to offer comprehensive information and support. For more information visit the MDDA's website at http://www.mdda.org.au.
IEM Program application forms and General Enquiries can be sent to:
Email: iemprogramofficer@health.gov.au
Post: IEM Program officer
Department of Health, Disability and Ageing
MDP 900, GPO Box 9848
CANBERRA ACT 2601
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