ASCIA has significantly expanded its range of information for health professionals and patients on Primary Immunodeficiency (PID) since 2014, including the ASCIA Transplantation and PID (TAPID) Project, development of resources to support the use of subcutaneous immunoglobulin (SCIg) and a dedicated webpage www.allergy.org.au/immunodeficiency
National Immunodeficiency Strategy
Following the success of the National Allergy Strategy, ASCIA is hosting a meeting in early March 2019 to progress the development of the first National Immunodeficiency Strategy for Australia.
The National Immunodeficiency Strategy mission is to improve the health and quality of life for Australians with primary immunodeficiencies and minimise the burden on individuals, carers, healthcare services and community.
The March 2019 meeting will involve representatives from:
• ASCIA - Clinical Immunologists and Nurses
• Patient organisations - AusPIPS, IDFA, IDFNZ, HAE Australasia
• Relevant foundations (e.g. Jeffrey Modell)
• Regulatory bodies (e.g. National Blood Authority, Jurisdictional Blood Committee).
• Supply channels (e.g. Australian Red Cross Blood Service, Pharmacists)
• Allied health professions (e.g. Dietitians, Physiotherapists, Occupational Therapists)
The draft goals on the National Immunodeficiency Strategy are as follows:
1. Develop expert centres throughout Australia to provide early and appropriate diagnosis of primary immunodeficiencies, including newborn screening and genomic diagnosis.
2. Improve access to appropriate medical and nursing specialist care and training for patients (adults and children) with primary immunodeficiencies.
3. Recognise complexity of care required for primary immunodeficiencies in hospital care priorities, funding models, e-health and coding.
4. Improve access to comprehensive multidisciplinary care, including dietitians, physiotherapists and occupational therapists for patients (adults and children) with primary immunodeficiencies.
5. Ensure sufficient supply of Immunoglobulin Replacement Therapy (IRT) and Hereditary Angioedema (HAE) treatments for patients (adults and children) with primary immunodeficiencies.
6. Ensure appropriately supported and funded choices of IRT, including subcutaneous or intravenous immunoglobulin (SCIG or IVIG) and HAE treatments for patients (adults and children) with primary immunodeficiencies.
ASCIA TAPID Project
The ASCIA TAPID (Transplantation And PID) project is an important and ongoing collaboration between clinical immunologists, transplant physicians and international PID experts, facilitated by ASCIA. The main objective of the TAPID project is to have regular collaborations and discussions between immunologists and transplant physicians in major centres that transplant patients with PIDs in Australasia. TAPID meetings enable complex PID and transplantation cases to be discussed in a confidential expert forum.
At the ASCIA PID (APID) Consultants Meeting in May 2013 the concept of the TAPID (transplantation and PID) project was initiated. Since then:
TAPID face to face meetings have been held in February 2014, May 2017 and May 2018
The TAPID project membership has increased from 12 to more than 90 members
TAPID teleconferences are now held each month
The TAPID project has been supported by unrestricted educational grants from CSL Behring.
Current TAPID members
ASCIA Immunodeficiency (ID) Register
The objectives of this project are to:
- Collect data on all patients with primary immune deficiency diseases in Australia and New Zealand.
- Enhance research, therapies and advocacy for primary and secondary immune deficiencies.
This project is supported by unrestricted educational grants from CSL Behring and Octapharma.
Content Updated November 2018