The ASCIA Immunodeficiency Strategy for Australia and New Zealand meeting was held on Friday 28th April, to coincide with World Primary Immunodeficiency Week 2023. The 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. The meeting was supported by ASCIA and an unrestricted educational grant from CSL Behring. As a result of this meeting a list of proposed prioritised actions was developed which are outlined below,
We welcome feedback from ASCIA members and stakeholders on the following proposed prioritised actions:
1) Standards of care which includes care by GPs and other health professionals. (Goals 2, 3, 4, 5, 8)
An ASCIA Standards of Care for Inborn Errors of Immunity (IEI), also known as primary immunodeficiencies (PID), will be developed, which will assist in benchmarking and advocating for optimal services and treatment. The format will be similar to the Quality in Primary Immunodeficiency Services document, which was produced by the Royal College of Physicians in UK, but expanded to reflect the Australian and New Zealand situations.
2) Specific working groups, including genetic testing and newborn screening (NBS) clinical implementation. (Goals 1, 2, 3, 8)
ASCIA working groups will be formed to 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 has been funded and commenced or will soon commence to cover all jurisdictions, each region has differences which need to be considered in a national approach for SCID NBS and genetic testing.
3) Education program for transition from paediatric to adult care and advocacy for resourcing of improved transition services based on the Standards of Care (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 Standards of Care for IEI will help address this.
4) Advocacy, including discussions regarding Chronic Disease Strategy, patient/carer support organisations, Rare Voices Australia, 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 Standards of Care document will be important, as will be collaborations with patient/carer support organisations and potential utilisation of the Chronic Disease Strategy.
5) Research initiatives, including an audit of access to testing/care and rejuvenation of ASCIA Immunodeficiency (ID) Register. (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.
Rejuvenation of the ASCIA Immunodeficiency (ID) Register is underway, but we need 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 ID Register will allow documentation of numbers for advocacy and also allow expansion of research.
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/