National Health (Highly Specialised Drugs Program) Special Arrangement Amendment (May Update) Instrument 2023

Administered by Department of Health, Disability and Ageing

Legislation au F2023L00491 Not in force Legislative Instrument

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EXPLANATORY STATEMENT

NATIONAL HEALTH ACT 1953

NATIONAL HEALTH (HIGHLY SPECIALISED DRUGS PROGRAM)
SPECIAL ARRANGEMENT AMENDMENT (MAY UPDATE) INSTRUMENT 2023

PB 37 of 2023

 

Purpose

This is the National Health (Highly Specialised Drugs Program) Special Arrangement Amendment (May Update) Instrument 2023 (PB 37 of 2023) (this Instrument). The purpose of this Instrument, made under subsection 100(2) of the National Health Act 1953 (the Act), is to amend the National Health (Highly Specialised Drugs Program) Special Arrangement 2021 (PB 27 of 2021) (the Special Arrangement), to make changes to the Special Arrangement relating to the Highly Specialised Drugs (HSD) Program.

The amendments made by this Instrument reflect amendments to the National Health (Listing of Pharmaceutical Benefits) Instrument 2012 (PB 71 of 2012), which commence on the same day. The National Health (Listing of Pharmaceutical Benefits) Instrument 2012 (PB 71 of 2012) is made under sections 84AF, 84AK, 85, 85A, 88 and 101 of the Act.

Schedule 1 to this Instrument provides for the addition of a form of the listed drug elexacaftor with tezacaftor and with ivacaftor, and ivacaftor to the Special Arrangement, and the alteration of circumstances in which a prescription may be written for the listed drugs elexacaftor with tezacaftor and with ivacaftor, and ivacaftor, and ustekinumab.

These changes are summarised, by subject matter, in the Attachment.

Authority

Subsection 100(1) of the Act enables the Minister to make special arrangements for the supply of pharmaceutical benefits.

Subsection 100(2) of the Act provides that the Minister may vary or revoke a special arrangement made under subsection 100(1).

Subsection 100(3) of the Act provides that Part VII of the Act, and instruments made for the purposes of Part VII have effect subject to a special arrangement made under subsection 100(1).

Consultation

The amendments made by this Instrument accord with recommendations made by the Pharmaceutical Benefits Advisory Committee (PBAC).

An ongoing and formal process of consultation in relation to matters relevant to the Special Arrangement includes the involvement of interested parties through the membership of the PBAC.

PBAC is an independent expert body established by section 100A of the Act which makes recommendations to the Minister about which drugs and medicinal preparations should be available as pharmaceutical benefits. PBAC members are appointed following nomination by prescribed organisations and associations from consumers, health economists, practising community pharmacists, general practitioners, clinical pharmacologists and specialists, with at least one member selected from each of those interests or professions. Remaining members are persons whom the Minister is satisfied have qualifications and experience in a field relevant to the functions of PBAC, and that would enable them to contribute meaningfully to the deliberations of PBAC. In addition, an industry nominee has been appointed to the PBAC membership. When recommending the listing of a medicine on the Pharmaceutical Benefits Scheme (PBS), PBAC takes into account the medical conditions for which the medicine has been approved for use in Australia, its clinical effectiveness, safety and cost-effectiveness compared with other treatments.

Pharmaceutical companies were consulted throughout the process of changes to the listings on the PBS. This includes consultation through the PBAC process.

Further consultation for this Instrument was considered unnecessary due to the nature of the consultation that has already taken place in the decision to list the medications outlined under ‘Purpose’.

Details of this Instrument are set out in the Attachment.

This Instrument commences on 1 May 2023.

This Instrument is a legislative instrument for the purposes of the Legislation Act 2003.


ATTACHMENT

DETAILS OF THE NATIONAL HEALTH (HIGHLY SPECIALISED DRUGS PROGRAM) SPECIAL ARRANGEMENT AMENDMENT (MAY UPDATE) INSTRUMENT 2023

Section 1 Name of Instrument

This section provides the name of this Instrument as the National Health (Highly Specialised Drugs Program) Special Arrangement Amendment (May Update) Instrument 2023 and may also be cited as PB 37 of 2023.

Section 2 Commencement

This section provides that this Instrument commences on 1 May 2023.

Section 3 Authority

This section states that this instrument is made under subsection 100(2) of the National Health Act 1953.

Section 4 Schedules

Section 4 provides that each instrument that is specified in a Schedule to the Instrument is amended or repealed as set out in the applicable items in the Schedule concerned, and any other item in a Schedule to the Instrument has effect according to its terms.

Schedule 1 Amendments

The amendments in Schedule 1 involve the addition of a form of a listed drug and the alteration of circumstances in which a prescription may be written for various listed drugs available under the Special Arrangment. These changes are summarised below.

SUMMARY OF CHANGES TO THE HIGHLY SPECIALISED
DRUGS PROGRAM MADE BY THIS INSTRUMENT

Form Added

Listed Drug

Form

Elexacaftor with tezacaftor and with ivacaftor, and ivacaftor

Pack containing 56 tablets elexacaftor 50 mg with tezacaftor 25 mg and with ivacaftor 37.5 mg and 28 tablets ivacaftor 75 mg

Alteration of Circumstances in Which a Prescription May be Written

Listed Drug

 

Elexacaftor with tezacaftor and with ivacaftor, and ivacaftor

 

Ustekinumab

 

Documents Incorporated by Reference

Listed Drug

Document incorporated

Document access

Elexacaftor with tezacaftor and with ivacaftor, and ivacaftor

Ustekinumab

Approved Product Information/Australian Product Information/TGA-approved Product Information.

The document is incorporated as in force on the day this Instrument takes effect, pursuant to paragraph 14(1)(b) of the Legislation Act 2003.

This document provides health professionals with a summary of the scientific information relevant to the safe and effective use of a prescription medicine.

TGA-approved Product Information is available for download for free from the TGA website: https://www.tga.gov.au/product-information-0

Ustekinumab

Mayo clinic score and partial Mayo clinic score.

The document is incorporated as in force on the day this Instrument takes effect, pursuant to paragraph 14(1)(b) of the Legislation Act 2003.

The Mayo clinic score and the partial Mayo clinic score (an abbreviated form of the Mayo clinic score) are medical diagnostic tools used to measure disease activity, in a standardised way, in ulcerative colitis through the evaluation of symptoms.

The Mayo clinic score and the partial Mayo clinic score are available to download for free from the Inflammatory Bowel Diseases Journal via the Oxford University Press website: https://academic.oup.com/ibdjournal/article/14/12/1660/4654949?login=true


Statement of Compatibility with Human Rights

Prepared in accordance with Part 3 of the Human Rights (Parliamentary Scrutiny) Act 2011

National Health (Highly Specialised Drugs Program) Special Arrangement
Amendment (May Update) Instrument 2023

(PB 37 of 2023)

This Instrument is compatible with the human rights and freedoms recognised or declared in the international instruments listed in section 3 of the Human Rights (Parliamentary Scrutiny) Act 2011.

Overview of the Instrument

The purpose of this Instrument, made under subsection 100(2) of the National Health Act 1953 (the Act), is to amend the National Health (Highly Specialised Drugs Program) Special Arrangement 2021 (PB 27 of 2021) (the Special Arrangement), to make changes to the Special Arrangement relating to the Highly Specialised Drugs Program.

The pharmaceutical benefits supplied under the Special Arrangement are for the treatment of chronic conditions which, because of their clinical use or other special features, may only be supplied to patients receiving specialised treatment.

Human Rights Implications

This Instrument engages Articles 9 and 12 of the International Covenant on Economic Social and Cultural Rights (ICESCR), specifically the rights to social security and health.

The Right to Social Security

The right to social security is contained in Article 9 of the ICESCR. It requires that a country must, within its maximum available resources, ensure access to a social security scheme that provides a minimum essential level of benefits to all individuals and families that will enable them to acquire at least essential health care. Countries are obliged to demonstrate that every effort has been made to use all resources that are at their disposal in an effort to satisfy, as a matter of priority, this minimum obligation.

The UN Committee on Economic Social and Cultural Rights reports that there is a strong presumption that retrogressive measures taken in relation to the right to social security are prohibited under ICESCR. In this context, a retrogressive measure would be one taken without adequate justification that had the effect of reducing existing levels of social security benefits, or of denying benefits to persons or groups previously entitled to them. However, it is legitimate for a Government to re-direct its limited resources in ways that it considers to be more effective at meeting the general health needs of all society, particularly the needs of the more disadvantaged members of society.

The Right to Health

The right to the enjoyment of the highest attainable standard of physical and mental health is contained in Article 12(1) of the ICESCR. The UN Committee on Economic Social and Cultural Rights (the Committee) has stated that the right to health is not a right for each individual to be healthy, but is a right to a system of health protection which provides equality of opportunity for people to enjoy the highest attainable level of health.

The Committee reports that the ‘highest attainable standard of health’ takes into account the country’s available resources. This right may be understood as a right of access to a variety of public health and health care facilities, goods, services, programs, and conditions necessary for the realisation of the highest attainable standard of health.


Analysis

This Instrument advances the right to health and the right to social security by ensuring that the amendments to the National Health (Listing of Pharmaceutical Benefits) Instrument 2012 (the Listing Instrument), that affect the pharmaceutical benefits that may be supplied under the Special Arrangement, are made concurrently. This Instrument provides for the addition of a form of the listed drug elexacaftor with tezacaftor and with ivacaftor, and ivacaftor.

The Listing Instrument determines the pharmaceutical benefits that are on the Pharmaceutical Benefits Scheme (PBS) through declarations of drugs and medicinal preparations, and determinations of forms, manners of administration and brands. The PBS is a benefit scheme which assists with advancement of these human rights by providing for subsidised access by patients to medicines. The recommendatory role of the Pharmaceutical Benefits Advisory Committee (PBAC) ensures that decisions about subsidised access to medicines on the PBS are evidence-based.

Conclusion

This Instrument is compatible with human rights because it advances the protection of human rights.

Nikolai Tsyganov

Assistant Secretary

Pricing and PBS Policy Branch

Technology Assessment and Access Division

Department of Health and Aged Care

 

Overview

The National Health (Highly Specialised Drugs Program) Special Arrangement Amendment (May Update) Instrument 2023, also known as PB 37 of 2023, was introduced to amend the National Health (Highly Specialised Drugs Program) Special Arrangement 2021 (PB 27 of 2021) concerning the Highly Specialised Drugs (HSD) Program. This legislative instrument was enacted under subsection 100(2) of the National Health Act 1953, which empowers the Minister to make special arrangements for the supply of pharmaceutical benefits. The amendments made by this Instrument reflect changes to the National Health (Listing of Pharmaceutical Benefits) Instrument 2012 (PB 71 of 2012), which aim to align the Special Arrangement with the latest updates to the Pharmaceutical Benefits Scheme (PBS). The policy objective of this amendment is to ensure that patients with chronic conditions requiring specialised treatment have access to necessary medications that are evidence-based and cost-effective. This Instrument was enacted by the Parliament of Australia and is designed to ensure the timely and appropriate supply of highly specialised drugs to patients in need. The amendments were made in consultation with the Pharmaceutical Benefits Advisory Committee (PBAC), an independent expert body that advises the Minister on which drugs should be available as pharmaceutical benefits. The PBAC's recommendations were considered in the development of this Instrument, ensuring that the amendments are consistent with best practices and expert clinical advice. The Instrument commences on 1 May 2023, aligning with the changes in the Pharmaceutical Benefits Scheme.

Scope and Application

The National Health (Highly Specialised Drugs Program) Special Arrangement Amendment (May Update) Instrument 2023 applies to the amendments of the National Health (Highly Specialised Drugs Program) Special Arrangement 2021. The amendments primarily involve the addition of a form of the listed drug elexacaftor with tezacaftor and with ivacaftor, and ivacaftor, and the alteration of circumstances in which a prescription may be written for the listed drugs elexacaftor with tezacaftor and with ivacaftor, and ivacaftor, and ustekinumab. These changes are made in alignment with amendments to the National Health (Listing of Pharmaceutical Benefits) Instrument 2012, which also come into effect on 1 May 2023. The Instrument is made under the authority of the National Health Act 1953, specifically subsection 100(2) of the Act, which empowers the Minister to vary or revoke special arrangements for the supply of pharmaceutical benefits. The amendments reflect recommendations made by the Pharmaceutical Benefits Advisory Committee (PBAC) and involve consultation with pharmaceutical companies and other stakeholders as part of the decision-making process. The Instrument, being a legislative instrument for the purposes of the Legislation Act 2003, is applicable nationally, ensuring consistency in the application of the Special Arrangement across Australia.

Key Provisions

The National Health (Highly Specialised Drugs Program) Special Arrangement Amendment (May Update) Instrument 2023 (F2023L00491) (the Instrument) amends the National Health (Highly Specialised Drugs Program) Special Arrangement 2021 (the Special Arrangement) to update the Highly Specialised Drugs (HSD) Program (sections 1-4). The Instrument introduces changes to the Special Arrangement that align with the amendments to the National Health (Listing of Pharmaceutical Benefits) Instrument 2012 (the Listing Instrument), which commence on the same day (section 1). The Instrument is made under subsection 100(2) of the National Health Act 1953 (the Act) (section 3). The amendments to the Special Arrangement, detailed in Schedule 1, include the addition of a form of the listed drug elexacaftor with tezacaftor and with ivacaftor, and ivacaftor, and the alteration of circumstances in which a prescription may be written for the listed drugs elexacaftor with tezacaftor and with ivacaftor, and ivacaftor, and ustekinumab (Schedule 1). These changes reflect the amendments to the Listing Instrument and are designed to ensure that the Special Arrangement remains current and consistent with the Pharmaceutical Benefits Scheme (PBS). The Instrument imposes obligations on the parties and entities it governs, primarily through the Special Arrangement. The Minister, under subsection 100(1) of the Act, has the authority to make special arrangements for the supply of pharmaceutical benefits. Under subsection 100(2) of the Act, the Minister may vary or revoke a special arrangement made under subsection 100(1). Subsection 100(3) of the Act provides that Part VII of the Act, and instruments made for the purposes of Part VII, have effect subject to a special arrangement made under subsection 100(1). The amendments to the Special Arrangement are made in accordance with recommendations by the Pharmaceutical Benefits Advisory Committee (PBAC), an independent expert body established by section 100A of the Act, which makes recommendations to the Minister about which drugs and medicinal preparations should be available as pharmaceutical benefits. The Instrument also incorporates relevant documents, such as the Approved Product Information and the Mayo Clinic Score, to provide health professionals with the necessary information to prescribe these drugs safely and effectively. The Instrument does not explicitly state any offences, penalties, or civil/criminal consequences for breach. However, the authority granted to the Minister under the Act to vary or revoke a special arrangement implies a regulatory oversight role. Any failure to comply with the terms of the Special Arrangement, as amended by this Instrument, could potentially lead to enforcement actions under the Act, which may include penalties or other regulatory consequences. The precise nature and extent of these consequences would be determined in accordance with the provisions of the Act and any applicable regulations or guidelines. In summary, the National Health (Highly Specialised Drugs Program) Special Arrangement Amendment (May Update) Instrument 2023 updates the Special Arrangement to reflect changes in the Listing Instrument, ensuring that the Highly Specialised Drugs Program remains aligned with the PBS. The Instrument imposes obligations on the Minister and relevant entities to ensure that the Special Arrangement is implemented in accordance with the Act and any applicable recommendations from the PBAC. While the Instrument does not explicitly outline penalties for breach, the regulatory framework provided by the Act allows for enforcement actions to address any non-compliance with the Special Arrangement.

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