Implementation is progressing in 2024 for the ASCIA Immunodeficiency Strategy for Australia and New Zealand, following an ASCIA PID/IEI resources working party meeting held on 10th May 2024 and an implementation meeting on 28th April 2023. The 2023 meeting was attended by a range of stakeholders including clinicians (clinical immunologists, specialist nurses and allied health), patient/carer organisations (AusPIPs, IDFA and IDFNZ), and researchers. As a result of this meeting 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)
An ASCIA Clinical Care Standard for Inborn Errors of Immunity (IEI) will be developed to assist in benchmarking and advocating for optimal services and treatment.
ACTION:
- A new ASCIA IEI Clinical Care Standard has been drafted at the ASCIA PID/IEI resources working party meeting on 10th May 2024. The draft Standard will be be sent for wider review from late-May 2024 onwards.
Priority 2) ASCIA Working Parties will develop genetic testing and newborn screening (NBS) information to facilitate clinical implementation. (Goals 1, 2, 3, 8)
An ASCIA working party 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, each region has differences which need to be considered in a consistent approach for SCID NBS and genetic testing.
ACTIONS:
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:
- The new ASCIA IEI Clinical Care Standard will include a Quality Statement about transitioning from paediatric to adult medical services.
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:
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:
- 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 after the Clinical Care Standard has been established.
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.
ASCIA Immunodeficiency Strategy Goals
Goal 1: Enable early diagnosis of severe combined immunodeficiency (SCID) by newborn screening
Goal 2: Enable early diagnosis of other PID/IEI disorders through recognition of early warning signs of PID/IEI disorders, appropriate testing and treatment.
Goal 3: 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.
Goal 4: Ensure equitable access to specialist and multi-disciplinary care for patients with PID/IEI disorders, including those living in regional, rural and remote areas.
Goal 5: Ensure equitable access to treatments, that are appropriately supported and funded for patients with PID/IEI disorders.
Goal 6: Increase support for PID/IEI education and training for patients, carers and health professionals.
Goal 7: Increase support for multi-disciplinary clinical and laboratory PID/IEI research and collaborations.
Goal 8: Ensure that the priorities of Indigenous Australian and Maori populations are represented in PID/IEI diagnosis, care and research.
For more information about the Strategy visit https://nationalimmunodeficiencystrategy.org.au/
Each of the following webpages include a QR code directly below the instructions "Scan the QR codes below to view ASCIA information on a mobile phone:"