The EACCI Patient Organising Commitee (POC) continues to work to improve the management of allergic diseases through active engagement in initiatives and sharing of best practices. Below we feature just three important initiatives involving the EAACI POC and other patient organisations around the world: working to improve food allergen labelling; contributing to PAAM 2021; and making progress with Australia’s National Allergy Strategy.

After delays due to the pandemic, the Codex Committee on Food labelling (CCFL) – part of the Codex Alimentarius, and the global body that sets the framework for food safety and labelling – met in September 2021. Several food allergy patient organisations, also members of EAACI’s POC, raised the patient voice in Codex discussions by providing feedback through national contact points and letters to the CCFL. Since October 2019, the European Federation of Allergy and Airways Diseases Patient Organisation (EFA) – an umbrella organisation of European patient organisations – has had Observer status with the CCFL, allowing them to make official contributions. POC members Sabine Schnadt (German Allergy and Asthma Association) and Marcia Podesta (Food Allergy Italy) have represented the EFA in electronic working groups (eWG) and meetings of the CCFL, where the new framework for allergen labelling is discussed.

Currently under review are the list of allergens that must be declared and various aspects which are intended to improve the labelling of allergenic ingredients. Of particular importance to patients is the regulation of unintended allergen presence and precautionary allergen labelling (PAL). The EFA, in consultation with many other patient organisations around the globe, is campaigning for a mandatory regulation of PAL based on a quantitative risk assessment. The next CCFL meeting will be in Spring 2023. Until then, engaged patient organisations will continue to raise the patient perspective on all allergen labelling related discussions.

Another effort to elevate the patient voice was offered when organisers of PAAM Digital 2021 invited POC members to participate in chairing sessions and contributing to on-demand content. Our members co-chaired six sessions and provided two on-demand lectures: “Psycho-social impact of food allergies” and “Empowering allergic patients and their families through education” delivered by Jennifer Gerdts, Food Allergy Canada. Thank you to Dr Helen Brough, PAAM Chair, and Dr Stefania Arasi, PAAM Co-Chair, and to the organising committee for initiating this engagement, for continuing efforts to highlight the patient perspective and for promoting collaboration between clinicians, researchers and patient organisations.

Australia’s National Allergy Strategy provides a success model for engaging government through clinician and patient collaboration. Launched in 2015 and supported by government funding, this initiative is co-led by Allergy & Anaphylaxis Australia and by the Australasian Society of Clinical Immunology and Allergy (ASCIA), as the leading patient and medical organisations for allergy in Australia. Two very recent milestones are:

A new Acute Anaphylaxis Clinical Care Standard (CCS) by the Australian Commission on Safety and Quality in Health Care (ACSQHC). The CCS guides all health professionals, whether in health settings or in the community (such as first responders, including paramedics), to treat anaphylaxis following the evidence-based guidelines of ASCIA. This addresses the variety of emergency responses to anaphylaxis between hospitals, providing one CCS for acute anaphylaxis that should be followed;

New national Best Practice Guidelines for Anaphylaxis Prevention and Management in Schools and Children’s Education and Care The Best Practice Guidelines allow for a national approach to the prevention and management of anaphylaxis in school and childcare settings. A new Allergy Aware Resource hub houses the Best Practice Guidelines and many other resources to help school and childcare staff, students, young children and parents to manage the risk of anaphylaxis.

Both Canada and the UK are taking similar steps to engage government and POs are following the progress in Australia for shared learning and reapplication.

Maria Said / Mary Jane Marchisotto / Sabine Schnadt

EAACI Patient Organisation Committee