Inborn Error of Metabolism Programme (IEM)

This section of the website contains information on the Inborn Error of Metabolism Programme (IEM).

Page last updated: 27 May 2015

Government to continue Inborn Error of Metabolism IEM Programme (IEM)

On 31 July 2015 the Minister for Health and Sport, the Hon Sussan Ley MP, announced that people with IEM conditions will continue to have access to the IEM Programme subsidy into the future.

A copy of the Minister’s media release is available on the Department of Health website.

About the Programme

The Inborn Error of Metabolism (IEM) Programme provides monthly financial assistance to approved grantees with protein metabolic disorders to assist with the purchasing of low protein foods. The purpose of the IEM grant is to enable people with IEM to stay on strict diets and ensure long term health is maintained. Non-food items, such as medications and supplements, cannot be purchased with money provided under the Programme.

Conditions that qualify under the Programme include:
    • 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);and
    • Ornithine Transcarbamylase Deficiency (OTC).
These conditions are managed by a diet consisting of special low-protein, high-fat foods and phenylalanine-free protein substitute formula. Strict compliance to the diet is necessary to maintain health.

In this section

Eligibility

To qualify for financial assistance under the Programme, a patient must:
    • Be an Australian resident living in Australia and have a current Medicare card;
    • Be 6 months of age and over;
    • Require a medically prescribed diet;
    • Have been assessed initially by a metabolic specialist who is recognised by the  Department of Health; and
    • Be re-assessed regularly by their metabolic specialist to confirm that the patient continues to have special dietary requirements.

Forms

Assessment and Payment Arrangements

Applications are assessed by the Department. Delays may occur where all relevant information is not provided. Following assessment, the Department will advise the applicants of the outcome.

Payments commence when the Department has processed and approved the application, and are paid in the first full week of each month. The Department does not issue back payments.

To apply for the IEM grant, submit a completed application form to the IEM Programme.

Review and Reapplication

Patients diagnosed with Dihydropteridine Reductase (DHPR) deficiency, Hyperphenylalaninemia and Phenylketonuria (PKU) must reapply for the IEM grant every twelve months.

It is the responsibility of all patients to schedule review appointments, as required by their treating metabolic specialists and to ensure that re-applications are provided to the Department.

Grant payments will cease if the reapplication documentation is not received by the Department within 15 months from the last application.

Grant Recipients Responsibilities

Patients or their Parents/Guardians/Carers are required to notify the Department of any changes to the patients’:
    • Dietary compliance;
    • Australian residency status;
    • Contact details, including:
      • Current address
      • Email address
      • Telephone number;
    • Bank account details; and
    • Custody or care arrangements (if applicable).
The Department of Health 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 grant payment.

Where an overpayment occurs due to a recipient failing to notify the Department the change in their circumstances within the recommended time, the recipient will be required to repay the overpaid amount to the Department.

Frequently Asked Questions (FAQs)

What should the monthly grant be used for?
The monthly grant is to be used to purchase appropriate foods only for approved metabolic conditions. Conditions that qualify under the Programme are listed on this page.

Do I need to stay on my prescribed diet if I want to receive the grant?
Yes, people receiving the IEM grant are required to inform the Department of Health if they stop their diet so payments can cease.  People may be liable to repay funds if they fail to advise the Department of Health in a timely manner.

I have PKU, am I automatically approved to go onto the IEM Programme once the metabolic specialist signs the application?
No, approval to join the IEM Programme can only be given by the Department of Health.  The metabolic specialist provides assurance that the applicant has an approved condition and requires a low protein diet.

I see a dietician on a regular basis, can they sign the IEM application form?
No, a metabolic specialist is required to sign the IEM application form.

Will the Department of Health accept faxed copies of the IEM application?
Yes, the Department will accept completed application lodged via mail, email or fax.

When do I get the monthly grant?
The monthly grant 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, contact the Department of Health 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.  If you do not contact the Department of Health to provide up to date details within four months, you will be removed from the programme.  You will then have to submit a new application form to  re-join the programme and no back payment will be applicable.

What happens if I have shared custody arrangements for my child who has IEM?
Grant payments can be shared between parents that share custody of a child with an IEM condition.  Please contact the Department of Health via email (iemprogramofficer@health.gov.au) or by telephone (02) 6289 8980 for further information.  The Department will send paperwork to each party to complete.

What happens if my child is now over 18 years of age, but I am still receiving the grant on their behalf?
If it is appropriate for the child to start receiving the grant and they are 18 years or over, the child needs to complete and submit a grant transfer application to the Department of Health.  The Department of Health must be informed in writing that the parent no longer wishes to receive the grant. Failure to do this may result in an overpayment which will require repayment to the Department of Health.

Where do I send my IEM application form?
IEM Programme Officer
Grant Services Division
Department of Health
MDP 205, GPO Box 9848
CANBERRA  ACT  2601
Telephone: (02) 6289 8980
Email: iemprogramofficer@health.gov.au

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 grant.  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 website.

Contact Details

IEM Programme Officer
Grant Services Division
Department of Health
MDP 205, GPO Box 9848
CANBERRA  ACT  2601
Phone: (02) 6289 8980
Email: iemprogramofficer@health.gov.au