ASCIA Immunodeficiency Strategy - April 2025 update
To coincide with World PI Week (22 - 29 April 2025) and World Immunology Day on 29 April 2025, ASCIA is proud to announce that a new ASCIA Project Officer, Vargha Khosh Aein, has been appointed, to progress implementation of the ASCIA Immunodeficiency Strategy for Australia and New Zealand. Whilst World PI Week is an annual event, this new role will ensure that ASCIA can progress the Strategy all year round.
Since 2019 the Australasian Society for Clinical Immunology and Allergy (ASCIA) has been working together with patient/carer organisations and other stakeholders to develop the ASCIA Immunodeficiency Strategy at a national level for both Australia and New Zealand (the Strategy).
The aim of the Strategy is to improve the health and wellbeing of people living with inborn errors of immunity (IEI) including hereditary angioedema (HAE) and other primary immune deficiency (PID) disorders, and minimise the burden on individuals, carers, health services and the community.
In 2022 the Strategy was launched (virtually) to coincide with the International Day of Immunology (29 April) and World PID Week.
In 2023 an in-person implementation meeting was held in April, where several priorities were identified.
In 2024 the following two Strategy priorities were achieved:
- Newborn Screening for Severe Combined Immune Deficiency (SCID) available throughout Australia and New Zealand (Goal 1)
- Development of the ASCIA Clinical Care Standard for Inborn Errors of Immunity /Primary Immune Deficiency (Relevant to Goals 2, 3, 4, 5, 8)
ASCIA Immunodeficiency Strategy sponsorship opportunities
In 2025 ASCIA is seeking financial support to assist with further implementation of the Strategy to achieve most of the following ASCIA Immunodeficiency Strategy Goals over the next 3-5 years:
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Enable early diagnosis of severe combined immunodeficiency (SCID) by newborn screening
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Enable early diagnosis of other PID/IEI disorders through recognition of early warning signs of PID/IEI disorders, appropriate testing and treatment.
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Improve access to expert genetic diagnosis by using genomic and immune testing for patients with suspected or recently diagnosed PID/IEI disorders, or people with a family history of PID/IEI.
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Ensure equitable access to specialist and multi-disciplinary care for patients with PID/IEI disorders, including those living in regional, rural and remote areas.
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Ensure equitable access to treatments, that are appropriately supported and funded for patients with PID/IEI disorders.
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Increase support for PID/IEI education and training for patients, carers and health professionals.
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Increase support for multi-disciplinary clinical and laboratory PID/IEI research and collaborations.
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Ensure that the priorities of Indigenous Australian and Maori populations are represented in PID/IEI diagnosis, care and research.
What are the priorities for the ASCIA Immunodeficiency Strategy?
As a result of the Strategy meeting in April 2023, a list of priorities was developed which are outlined below,
Priority 1) Clinical Care Standard which includes care by GPs and other health professionals. (Goals 2, 3, 4, 5, 8)
Action completed:
- A new ASCIA Clinical Care Standard for Inborn Errors of Immunity /Primary Immune Deficiency was developed to assist in benchmarking and advocating for optimal services and treatment.
Priority 2) ASCIA Working Parties will develop genetic testing and newborn screening (NBS) information to facilitate clinical implementation. (Goals 1, 2, 3, 8)
ASCIA will further address issues for better access and funding of genetic testing and the implementation of the clinical aspects for severe combined immunodeficiency (SCID) newborn screening (NBS). Whilst SCID NBS laboratory testing is now available in all jurisdictions in Australia and New Zealand, each region has differences which need to be considered in a consistent approach for SCID NBS and genetic testing.
Actions completed:
- ASCIA sent a letter to the Hon Mark Butler MP, Minister for Health and Ageing, Commonwealth of Australia
regarding implementation of newborn screening. Submitted 15 August 2023, and had a subsequent meeting. - ASCIA has developed new resources for NBS https://www.allergy.org.au/about-ascia/info-updates/new-ascia-newborn-screening-resources
Further actions required:
- ASCIA will provide a letter of support for an MSAC submission regarding genetic testing.
- ASCIA will develop a new genetic testing guide for clinical immunology/allergy specialists.
Priority 3) Education Program for Transition from Paediatric to Adult Care and advocacy for resourcing of improved transition services based on the Clinical Care Standard (Goal 4, 6)
It has been recognised that there are many aspects of transitioning from paediatric to adult services that should be improved for complex patients with IEI and their families Programs addressing education and support for patients, families and service providers and advocacy for funding of appropriate supportive multidisclinary resources utilising the ASCIA Clinical Care Standard will help address this.
Action completed:
- The new ASCIA IEI Clinical Care Standard includes information about transitioning from paediatric to adult medical services.
Further actions required:
- Increased PID/IEI education and training resources developed for patients, carers and health professionals.
Priority 4) Advocacy, including discussions regarding Chronic Disease Strategy, patient/carer support organisations, health economics, barriers to access and Indigenous Australian/Maori involving clinicians and patients. (Goals 4, 5, 8). Advocacy will be central to many of our goals. The ASCIA Clinical Care Standard will be important, as will be collaborations with patient/carer support organisations and potential utilisation of the Chronic Disease Strategy.
Actions completed:
- ASCIA PID/IEI information has been updated to link to simplify language and link to patient/carer support organisations. https://www.allergy.org.au/about-ascia/info-updates/updated-ascia-immunodeficiency-patient-and-carer-information
- ASCIA lodged a submission to Public Consultation on the refresh of the National Strategic Framework for Chronic Conditions including requests for primary immunodeficiency diseases and allergic diseases to be considered as chronic health conditions. Lodged 28 April 2024.
ASCIA Submission Framework 2024-04-2846.21 KB
Priority 5) Research Initiatives, including an audit of access to testing/care and rejuvenation of ASCIA IEI Registry. (Goal 7)
An audit of access to testing and access to care was recommended, to better understand the inequities identified and the differences between access in public versus private heathcare systems.
Ways to rejuvenate the ASCIA IEI Registry are being considered, to optimise the entry of data, with recognition of the need for project officer support and the need to change from the existing waiver of consent to a formal consent process. An active ASCIA IEI Registry will allow documentation of numbers for advocacy and also allow expansion of research.
Actions completed:
- Agreement by the ASCIA Board to develop a new ASCIA IEI Registry using REDCap (Research Electronic Data Capture), a secure web application for building and managing online databases.
Further actions required:
- ASCIA will develop a governance structure and draft data fields for a new ASCIA IEI Registry.
- ASCIA will survey members regarding access to care/testing.
Why was the ASCIA Immunodeficiency Strategy initiated?
The ASCIA Immunodeficiency Strategy for Australia and New Zealand was established to address the needs of patients and their families affected by immunodeficiency in a targeted collaborative way. The development of the Strategy was built on the experience from the successful implementation of the National Allergy Strategy.
The first ASCIA Immunodeficiency Strategy meeting was held on Friday 8 March 2019 and was attended by a wide range of stakeholders including clinicians, patient/carer organisations and researchers. Despite the disruptions of the COVID pandemic over the last three years, there has been significant progress in some of these areas, but there are still substantial issues that need to be addressed.
The ASCIA Immunodeficiency Strategy for Australia and New Zealand document was developed from 2019-2021 and launched in April 2022. The Strategy includes eight goals to address key issues, as listed below.
For more information about the Strategy visit https://nationalimmunodeficiencystrategy.org.au/