Information updates

ASCIA Progress Report - National Allergy Council (NAC) Schools and Children’s Education/Care (CEC) Project

ASCIA’s involvement in the NAC Schools and CEC project includes education and training of staff in schools and CEC services, to improve knowledge about management of allergies and anaphylaxis. 

Gap analysis to determine current allergy education being provided

• Initial scoping research detailing the progress of the gap analysis has been completed.
• The full gap analysis is expected to be completed by 31 December 2023.

Surveys

• A survey for people studying and/or working within the education industry (schools and children’s education/care services) to determine how anaphylaxis training is being provided in undergraduate courses was completed during June 2023 and was available at www.allergy.org.au/schools-childcare which was promoted via newsletters, direct email and social media. Analysis of the survey data is expected to be completed by 31 December 2023. 
• Mandatory evaluation surveys were added to these courses in January 2023 and survey data from January to July 2023 will be analysed. Based on this data, ASCIA will develop a plan by November 2023 to consult with users, which is likely to include conducting focus groups. 
• Data from voluntary post-training evaluation surveys for ASCIA anaphylaxis e-training for Schools and Children's Education/Care (CEC) from December 2021 to December 2022 has been evaluated and results will inform course reviews and updates. Reports are available here: 
  
  Schools 2022 Report629.44 KB   
  
  CEC 2022 Report583.28 KB
  

The results of these surveys will be summarised in reports to:

• Highlight factors influencing the decision to incorporate anaphylaxis training in undergraduate degrees.
• Provide insights into the benefits of including anaphylaxis training for future educators.
• Outline potential improvements in ASCIA e-training courses based on feedback.
• Provide feedback to assist in developing consistent minimum standards/competencies for anaphylaxis training across institutions.

Updating ASCIA anaphylaxis e-training for schools and CEC

Major updates have been made to these courses in June and July 2023 to include the 2023 versions of ASCIA Action Plan for Anaphylaxis (red), ASCIA Action Plan for Allergic Reactions (green), ASCIA Action Plan for Drug (Medication) Allergy (dark green) and ASCIA First Aid Plan for Anaphylaxis (orange). Details of the updates are on the ASCIA website: https://www.allergy.org.au/about-ascia/info-updates/new-2023-versions-of-ascia-action-plans-for-anaphylaxis

ASCIA has developed new 2023 versions of ASCIA Action Plans for Anaphylaxis and ASCIA First Aid Plans for Anaphylaxis, to improve ease of use, which are available from June 2023 onwards. This is the first major formatting change in 20 years, since ASCIA Action Plans for Anaphylaxis were first introduced in 2003. The plans can be accessed on the ASCIA website:

• www.allergy.org.au/hp/anaphylaxis/ascia-action-plan-for-anaphylaxis
• www.allergy.org.au/hp/ascia-plans-action-and-treatment

Increase the uptake of ASCIA anaphylaxis refresher training by schools and CEC 

• ASCIA anaphylaxis refresher e-training courses for schools, CEC and community have been promoted in monthly ASCIA Community newsletters from July 2022 to June 2023. These newsletters are sent to more than 5,000 recipients each month.
• A promotion plan for ASCIA social media has been developed, to be implemented from July 2023 onwards 
• From 1 July 2021 to 30 June 2022 there were 6,028 enrolments for ASCIA Anaphylaxis Refresher e-training of which 681 had not yet completed the course.
• From 1 July 2022 to 30 June 2023 there were 5,277 enrolments for ASCIA Anaphylaxis Refresher e-training of which 653 had not yet completed the course.

Maintain ASCIA anaphylaxis e-training for schools and CEC services

• In addition to the June/July updates, courses have been updated in January 2023 and September 2022 to include addition of mandatory evaluation surveys and product changes (Anapen and EpiPen).
• Once evaluation reports are completed further course improvements will be made.

Provide support for users of the ASCIA anaphylaxis e-training for schools and CEC

• ASCIA provides ongoing email and online support for ASCIA anaphylaxis e-training for schools and CEC services.
• ASCIA responds to approximately 300 inquiries regarding the courses per month.

Nestlé Health Science has advised that they will be out of stock of the current recipe of Alfamino® 400g specialised formula for infants with cow's milk allergy  from around mid-July until the end of August 2023. They expect that it will be available again in pharmacies around early September.

Alfamino stock notification for parents and carers114.08 KB

Nestlé Health Science is aware of the difficulties this will pose for some parents and caregivers, and apologise for this situation.  

Alfamino® infant formula has a new recipe. Nestlé Health Science awaits PBS listing confirmation for this product to be able to supply it through pharmacies at the PBS subsidised price. In the interim period, the new recipe Alfamino® will be available to parents and caregivers through the online Nestlé Baby Store Products – Nestlé Baby Store (nestlebaby.com.au). The new recipe Alfamino® continues to be an amino acid based infant formula for infants (0-12 months) with severe cow’s milk protein allergy, eosinophilic oesophagitis, intestinal malabsorption and/or multiple food intolerances. Parents and carers should speak to their healthcare professional for advice. For more information, contact Nestlé Health Science Consumer Services on 1800 671 628.  

ALFAMINO® is an infant formula product for special dietary use and must be used under medical supervision. It is not suitable for general use.

The ASCIA Guide for Milk Substitutes in Cow’s Milk Allergy provides information about safe, nutritionally equivalent alternatives for infants with cow’s milk allergy, if a particular specialised formula is not available due to supply issues.. The ASCIA Guide is available at https://www.allergy.org.au/hp/papers/guide-for-milk-substitutes-cows-milk-allergy 

IMPORTANT NOTICE: Breast milk is best for babies and provides ideal nutrition.  Good maternal nutrition is important for the preparation and maintenance of breastfeeding.  Introducing partial bottle feeding could negatively affect breastfeeding and reversing a decision not to breastfeed is difficult.  Professional advice should be followed on infant feeding.  Infant formula should be prepared and used exactly as directed or it could pose a health hazard.  The preparation requirements and weekly cost of providing infant formula until 12 months of age should be considered before making a decision to formula feed. Mothers should be encouraged to continue breastfeeding even when their infants have cow’s milk protein allergy. If a decision to use an infant formula for special dietary use is taken, it must be used under medical supervision.

ASCIA Fast Facts have provided concise, reliable and easy to read information about allergies and other immune system disorders since they were first developed in 2019. ASCIA Fast Facts are the first online resources for patients and carers that have been reviewed and updated in 2023 to ensure that plain language is used where possible, and links to patient and carer support organisations are included at the top of each document. These updates have been made by ASCIA as part of the National Allergy Council Shared Care for Allergy project. 

The updated ASCIA Fast Facts are available online at www.allergy.org.au/patients/fast-facts on the following on 20 topics.

•   Adrenaline (Epinephrine) Injectors
•   Allergic Rhinitis (Hay Fever)
•   Allergy Testing
•   Allergy Treatments
•   Anaphylaxis
•   Asthma and Allergy
•   Autoimmune Disease
•   Cow’s Milk (Dairy) Allergy
•   Drug (Medication) Allergy
•   Eczema (Atopic Dermatitis) 
•   Eczema and Food Allergy
•   Evidence-based Allergy Tests and Treatments
•   Food Allergy
•   Immune System
•   Immunodeficiencies
•   Infant Feeding and Allergy Prevention
  
•   Insect and Tick Allergy
  
•   Peanut Allergy
•   Seed Allergy
•   Tree Nut Allergy

ASCIA has been progressing work on the following National Allergy Council projects since July 2022:

• Shared Care for Allergy project - The aim of this project is to improve access to quality healthcare for people with allergies, particularly in regional, rural and remote areas. The latest updates are available at https://www.allergy.org.au/about-ascia/info-updates/ascia-progress-report-nac-shared-care-for-allergy-project

• Schools and Children’s Education/Care (CEC) Services project - The aim of this project is to provide consistent guidelines and improve knowledge about management of allergies and anaphylaxis in schools and CEC services. The latest updates are available at https://www.allergy.org.au/about-ascia/info-updates/ascia-progress-report-nac-schools-and-cec-project

Increased Staff Capacity

• ASCIA employed two project officers to work on the National Allergy Council projects who commenced work on 1^st March 2023, as listed on the ASCIA website  www.allergy.org.au/members/committees#d
• In addition, existing ASCIA staff and contractors are working to progress work on the National Allergy Council projects.  

Registration is still open for the ASCIA 2023 Conference, to be held at the International Convention Centre (ICC) Sydney from Tuesday 5th to Friday 8th September 2023. This is a hybrid conference, which enables virtual registration for delegates who cannot attend in-person, and on-demand viewing of sessions for all registered delegates after the conference.

To register go to https://ascia2023.com/registration.html

The ASCIA 2023 Conference Program Book is available at https://www.allergy.org.au/conferences/ascia-annual-conference

Delegates may also wish to register for the CIRCA meeting at the Garvan Institute, Darlinghurst on Monday 2nd September - Register here 

The Practical Rhinoscopy workshop at St Vincent’s Hospital, Darlinghurst on Saturday 9th September is now full.

The ASCIA 2023 Conference program includes current allergy and clinical immunology clinical issues and research findings, which will be presented by more than 60 speakers, including five international speakers - A/Prof Edmond Chan (Canada), Prof Anna Nowak-Wegrzyn (USA), Prof Anne Puel (France), Dr Lluis Quintana-Murc (France) and A/Prof Elizabeth Tham (Singapore).  

We have received a record number of 162 abstracts, comrpising 25 Clinical Grand Rounds (CGR) cases and 137 Posters, which is around 30% more submissions received compared to previous ASCIA Conferences. 

The ASCIA 2023 Conference program will include main sessions from 9am to 6pm AEST each day, with a focus on:

• Clinical Grand Rounds (CGR) Cases and selected Poster Presentations on Tuesday 5^th September
• Food Allergy and Anaphylaxis on Wednesday 6^th September
• Drug, Insect, Animal and Respiratory Allergy on Thursday 7^th September
• Immunodeficiency, Autoimmunity and Autoinflammatory Disorders on Friday 8^th September

On Thursday 7^th September an inaugural ASCIA Immunodeficiency Update for Nurses will be held.

On Friday 8^th September there will be three concurrent Allergy Update meetings, which include some shared sessions:

• ASCIA Allergy Update for Medical Practitioners
• ASCIA Allergy Update for Nurses
• ASCIA Allergy Update for Dietitians

To improve sustainability, the ASCIA 2023 Conference will feature:

• A living, digital Program Book, which can be kept up to date and reduces waste associated with printing. 
• Online posters, which reduces production costs and waste associated with printing and transporting of posters.
• Namebadges that do not include a plastic holder and reusable lanyards.

The ASCIA 2023 Conference will provide an international standard of continuing professional development (CPD) for ASCIA members and other health professionals working in allergy and clinical immunology, as well as an opportunity for in-person interactions with colleagues.

To coincide with World Primary Immunodeficiency Week, 22-29 April and the  International Day of Immunology, 29 April 2023, ASCIA has issued the following media release, which is distributed by Lanham Media.

Media contact: Greg Townley | This email address is being protected from spambots. You need JavaScript enabled to view it. | 0414 195 908

AAP have covered the story on Friday 21 April which has been published by 60 outlets including Daily Mail, West Australian, Canberra Times and others:  Calls for national rules on genetic testing - The Canberra Times

Sydney Morning Herald also covered the story on Monday 24 April: Archie waited 32 years for a diagnosis. His nephew waited two months - Sydney Morning Herald

Urgent Need for Access to Genetic Testing for Immune Deficiencies

The Australian immunology community is united in urging policymakers and healthcare providers to ensure fair access to genomic testing for primary immunodeficiencies (PIs) in Australia. PIs are a group of over 400 rare and serious genetic disorders that significantly compromise the immune system's capacity to defend the body against infections and diseases. As a result, people with PIs are highly vulnerable to a wide range of infections and are at a heightened risk of having severe and life-threatening complications. This can lead to recurrent and persistent infections that can be difficult to treat, as well as an increased likelihood of developing serious health conditions.

Genomic testing is a type of medical testing that is used that examines a person's DNA to look for changes or variations that may cause or increase the risk of certain health conditions. This can help doctors diagnose and treat diseases, predict a person's risk of developing certain conditions, and personalise medical care.

Currently, specific children with cancer in Australia have access to in-depth genomic analysis through the Zero Childhood Cancer Program. The program's success in improving outcomes for these children has led to its expansion. This ability of early diagnosis is vital in people receiving precision treatment early in life.

The peak professional immunology and allergy organisation the Australasian Society of Clinical Immunology and Allergy (ASCIA), and patient/carer support organisations, Immune Deficiencies Foundation Australia (IDFA) and AusPIPS, are calling for a similar program to be established for people with PIs, who also require early and accurate diagnoses and targeted medical treatment.

“Unfortunately, access to genomic testing for primary immunodeficiencies is not currently equitable across Australia, which means that many people are not receiving the potentially life-saving care and treatment they need. It is truly devastating to lose patients, especially young ones, due to delayed diagnosis or the inability to control severe infections. We urge the Australian Government and state and territory governments to establish a jointly funded national genomics testing program, as recommended in the Parliamentary Inquiry into new drug and medical technology approval processes to ensure that genomic testing is accessible to all," says Dr Melanie Wong, a paediatric clinical immunology/allergy specialist and co-chair of the ASCIA Immunodeficiency Strategy.

Although individual cases of primary immunodeficiencies are uncommon, when considered collectively, they are estimated to affect 1 in 25,000 people. It is alarming to note that 70-90% of individuals with PI remain undiagnosed worldwide. In Australia (Victoria), research reveals that the average time taken for adults to receive a diagnosis after symptom onset is 8 years, and each year of delay in diagnosis results in a decrease in life expectancy.

54-year-old Pearl Sims, despite recurrent illness her whole life, was only diagnosed with Immunoglobulin G subclass deficiency at 31, which progressed to Common Variable Immunodeficiency (CVID) at age 41.

"I've been through so much because of my delayed diagnoses – missed school and work days, strained relationships, social isolation, and even the inability to have children of my own. It's been a constant struggle to fight for testing and a deeper understanding of my condition, and it breaks my heart to think that early detection could have made a huge difference. I firmly believe that knowledge is power, and genomic testing could have given me the answers I needed years ago, potentially sparing me from years of pain and missed opportunities. I also want to be able to provide information to my family for their own knowledge, but I am still on a long waitlist to get tested," says Ms Sims.

Carolyn Dews, CEO of IDFA, believes that access to genomic testing is vital for people living with PIs to enhance their quality of life and make meaningful contributions to society.

“Living with a PI can be incredibly challenging, with frequent hospitalisations, severe symptoms, and limited social interactions. This often leads to social isolation and mental health issues. Access to genomic testing will provide people with a chance to live a productive life free from the constraints of their illness,” says Ms Dews.

Genomic testing can help in the following ways:

1. Accurate Diagnosis: Genomic testing can identify the genetic mutations that cause primary immunodeficiencies, which helps doctors accurately diagnose the specific type of PI a person has. This is important for selecting appropriate treatments and managing the condition.
2. Family Screening: Genomic testing can identify if family members of an affected individual also carry the same genetic mutation, which can help with early diagnosis and treatment.
3. Precision Medicine: Genomic testing can help doctors tailor treatment plans to an individual's specific genetic makeup. For example, some primary immunodeficiencies can be treated with gene therapy, which involves introducing a healthy copy of a mutated gene back into a person's cells. Genomic testing can identify the specific genetic mutation that needs to be targeted with gene therapy.
4. Research and Development: Genomic testing can provide important insights into the underlying biology of primary immunodeficiencies, which can inform the development of new treatments and potential cures.

“Many people with immune deficiency experience a long journey, often years, between developing symptoms and obtaining a clear diagnosis. Genomic testing increases the speed and accuracy of diagnosis, thereby enabling targeted treatments that can greatly improve health and prevent complications. Genomic testing and interpretation for primary immune deficiency offers so much promise that it should be fairly available to all,” finished Professor Jo Douglass, clinical immunology/allergy specialist and co-chair of the ASCIA Immunodeficiency Strategy.

Available for interview:

• Dr Melanie Wong (NSW) - paediatric clinical immunology/allergy specialist and co-chair of the ASCIA Immunodeficiency Strategy
• Professor Jo Douglass (VIC) - clinical immunology/allergy specialist and co-chair of the ASCIA Immunodeficiency Strategy.
• Carolyn Dews (NSW), CEO of Immune Deficiencies Foundation Australia (IDFA)
• Associate Professor Theresa Cole (VIC) - ASCIA President and paediatric clinical immunology/allergy specialist 

ASCIA Oral Immunotherapy (OIT) for Food Allergy Position Paper for health professionals has been updated in April 2023 and is available open access on the ASCIA website: www.allergy.org.au/hp/papers/ascia-oral-immunotherapy-for-food-allergy

The ASCIA OIT for Food Allergy Position Paper includes the following current ASCIA recommendations for management of food allergy:

• Currently, ASCIA does not recommend food OIT as a routine clinical treatment for patients with food allergy. For most patients, with the exception of patients with egg and milk allergy who tolerate those foods in baked forms, strict avoidance of confirmed food allergens remains the standard of care. This recommendation will remain in place until the long-term efficacy and safety of food OIT is optimised, and long-term patient-important and other clinically relevant outcomes are shown to be improved by OIT.

• There remains potential for OIT to provide long term benefits for patients with food allergy. ASCIA strongly supports the provision of clinical trials to address this data gap and increased access to OIT in clinical trials for those patients and families who wish to undertake OIT.

• While ASCIA recommends that food OIT should be undertaken in the context of a clinical trial, these opportunities may not always be available to patients. If food OIT is being considered outside of a clinical trial, ASCIA recommends a shared decision-making process with appropriate expert consultation and documentation of informed consent, and that OIT is provided under the supervision of a clinical immunology/allergy specialist, as part of a multidisciplinary team with expertise in food OIT. In these circumstances, ASCIA recommends that standardised measures of safety, effectiveness and patient-reported outcomes are collected to address the current gaps in knowledge.

• If such therapy is undertaken, OIT should be performed using published peer reviewed treatment protocols. Dose increases must take place with qualified staff in a facility that has the necessary equipment to treat anaphylaxis. Prior to commencing OIT, a clinical diagnosis of allergy to the food in question must be established; a diagnosis cannot be based on skin tests or blood tests in isolation. A supervised oral food allergen challenge in an appropriate setting may be needed to confirm the diagnosis or to establish a reaction threshold.

• Any patient receiving OIT should have an adrenaline injector available at all times. Comprehensive anaphylaxis education regarding the recognition and management of anaphylaxis should be provided for the patient and/or their carers and a written management plan should be provided. Clear written information about when to avoid a dose (for example, prior to exercise) should be provided.

This is an important ASCIA document which will next be reviewed and updated in 2024, once a systematic review on food allergy treatments is completed, which we expect will be in late 2023.

ASCIA OIT for Food Allergy Frequently Asked Questions (FAQ) for patients and carers is also available on the ASCIA website:

www.allergy.org.au/patients/allergy-treatments/oral-immunotherapy-for-food-allergy