APPENDIX 4 - HUMAN PITUITARY HORMONES TRUST ACCOUNT MANAGEMENT AND ADMINISTRATION GUIDELINES

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APPENDIX 4 - HUMAN PITUITARY HORMONES TRUST ACCOUNT MANAGEMENT AND ADMINISTRATION GUIDELINES

Establishment

The Human Pituitary Hormones Trust Account has been established within the Commonwealth Public Account in accordance with Section 62A of the Audit Act. A total of $5m has been placed within a Group 3 Trust Account by the Department of Finance as part of Appropriation Bill 1, item 28920014.

Purpose

To provide funding for grants and other payments for:

the provision of ongoing counselling and support services for people treated with human pituitary hormones and their families; and

medical and other care costs in the event of a person contracting Creutzfeldt-Jakob Disease (CJD) as a result of human pituitary hormone treatment in Australia.

Delegate

All payments made from the Trust must be authorised by the delegate of the Minister for Health and Family Services, currently the Head of the National Centre for Disease Control.

MEDICAL AND OTHER CARE COSTS

The Human Pituitary Hormones Trust Account provides for medical, hospital, childcare, livein home care, community nursing and other care in the event of another human pituitary hormone recipient contracting Creutzfeldt-Jakob Disease (CJD). Funeral charges and associated costs may also be met from this provision of the Trust.

Eligibility

Access to financial assistance from the medical and other care component of the Trust will depend upon the provision of documented medical evidence provided by a neurologist to support the claim that a person who received human pituitary derived hormones in Australia has been clinically diagnosed as suffering from CJD. The neurologist's report will be referred to an independent panel approved by the Department of Health and Family Services for a second opinion and confirmation.

Once confirmation is given that CJD is the most probable diagnosis, or if CJD is confirmed at autopsy, payments will be back dated to the date of the initial onset of the illness as determined by independent medical experts in this field.

A claim for assistance under this section of the Trust would be satisfactorily supported by:

(i) treatment records held on departmental files; or

    written advice from the original treating doctor that the person did receive this treatment based on the doctor's clinical records or other documentary evidence establishing that the treatment was administered; or

    written advice from a doctor involved with the research use of the hormones that the person received hPG or hGH treatment under the research provision of the National Health Act 1953 based on the treating doctor's clinical records; and

(ii) a neurologist's report and other supporting medical opinion that the person is assessed as exhibiting the symptoms of CJD and is in his/her opinion suffering from CJD; and

(iii) assessment and confirmation of the referring neurologist's report by the registered neurologist who is currently a member of the Scientific Research Subcommittee of the National Pituitary Hormones Advisory Council or a nominee in his/her absence. If that person is not part of the Creutzfeldt-Jakob Disease Case Registry, the report shall be further confirmed by a member of the Creutzfeldt-Jakob Disease Case Registry; and

(iv) copies of invoices and medical bills and statement of claims made through Medicare and/or private health insurance.

Payments

Assistance will be offered to:

  • if appropriate, the hormone recipient; or

  • next of kin or other nominated person if the recipient is in the advanced stages of CJD or otherwise incapacitated and meets the conditions outlined under eligibility.

Claims/invoices from the approved recipient, next of kin or nominated person, hospital, institution or service provider will be processed:

  • to reimburse the claimant for `out of pocket' medical/other expenses once CJD is diagnosed as the most likely cause of the illness;

  • to cover the cost of treatment/care in public or private hospitals/institutions;

  • for home/child care and other care costs; and

  • for costs associated with funeral arrangements.

All such claims must be accompanied with supporting documentation, either a receipt if the claimant has already paid the account or an account from the hospital/institution or organisation.

The claimant will be reimbursed for the full amount charged by the hospital/institution.

The claimant will be reimbursed for costs associated with home nursing, doctor's visits and home maintenance (cleaning, lawn mowing etc.).

The claimant will be reimbursed for the full amount of full or part-time child care.

If the claimant is eligible to apply for other Commonwealth benefits such as child care relief payments then the Trust will only allow payment of the difference between the benefits entitled and the actual cost of the service.

Advance payments will only be approved under exceptional circumstances. Such exceptional circumstances would be or similar to the situation where an institution or organisation will not provide a service unless prior payment has been arranged, and again only after the independent panel opinion is that CJD is the most likely cause of the illness.

COMPENSATION

Persons provided with assistance from the Trust may still pursue claims through the Courts if they so choose. However, the Commonwealth will reduce any payment for which it may become liable by an amount equal to the amounts paid or an amount equivalent to the value of either goods or services provided under the Trust where this would prevent the receipt of payment twice for the same service.

Payment of damages awarded by a Court (other than amounts "off set" as described above) will be paid from the Department's Compensation and Legal appropriation.

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