Ben and Tamara McKenzie tragically lost their 15-year-old son Max to anaphylaxis a year ago.
Max had anaphylaxis his whole life and managed his condition extremely carefully. Yet despite this and having a father that is an emergency physician and a mother with a background in health, he died suddenly from anaphylaxis in metropolitan Melbourne.
Max’s father Ben said, “Max ate some walnuts and he developed sudden asthma as his main symptom. He used his EpiPen and his Ventolin, and he entered health care with 100% oxygen levels. Despite this, he deteriorated and did not receive the care from health professionals that he should have. His brain did not get enough oxygen and he died suddenly in intensive care 13 days later. Our pain is unimaginable, and it has not lessened. Sadly, we are not the only family who have had their child die in Melbourne in this way last year.
“There are so many facets to reducing allergy-related disease. All levels of government and all parts of our community need to play a part. Allergens are everywhere in everyday life and this means that the solutions will not be simple. We need to make sure that our emergency medical systems have world-class standards for when accidents inevitably occur. We need an allergy system that brings together all of these elements in a coordinated strategy that is robust and well-funded. It is important to recognise that different groups in the system need different information and different tools to play their role in managing allergy effectively,” Ben said.
Combined action to improve outcomes
With a hope to improve outcomes and address Australia’s big allergy problem, Ged Kearney MP, Assistant Minister for Health and Aged Care, alongside allergy experts, is launching two health organisations — The National Allergy Council (NAC) and National Allergy Centre of Excellence (NACE).
Backed by $26.9 million in federal government funding, the initiatives will likely help accelerate allergy research and clinical care to improve the lives of five million Australians living with allergic disease and prevent anaphylaxis, including needless deaths.
“Serious allergies impact the lives of individuals and families in a massive way. That’s why this $26.9 million funding boost is so important. It’s so critical to bring together all of our nation’s peak allergy organisations, clinicians, researchers, policymakers and crucially, patients and carers,” said Assistant Minister Kearney.
Maria Said AM, NAC Director and Co-chair, Allergy & Anaphylaxis Australia CEO, said, “Allergic disease impacts significantly on a person’s health and wellbeing and can be life threatening. Allergy is among the fastest growing chronic conditions in Australia, affecting approximately 1 in 5 Australians.1 I can’t emphasise enough how the government’s significant investment will transform the lives of these Australians through improved allergy research, clinical care, education, prevention and support.”
Rates and deaths
Dr Preeti Joshi, NAC Director and Co-chair, Australasian Society of Clinical Immunology and Allergy (ASCIA) representative and paediatric clinical immunology and allergy specialist, said, “We know from our work and the House of Representatives’ Walking the allergy tightrope report, that it is critical we reduce the alarming trend of anaphylaxis rates and tragic deaths due to allergic disease. Establishing these organisations will ensure the findings from quality research will be implemented effectively to improve and save lives.”
Associate Professor Kirsten Perrett Director, NACE and Group Leader, Murdoch Children’s Research Institute, added, “Sadly, our country is considered the allergy capital of the world. As Australia’s leading allergy research body, we want to change that by expanding our evidence base for the prevention and management of drug, food, respiratory and insect allergic disease. To do this, the NACE will oversee a Clinical Trials Network, a National Allergy Repository, an Evidence and Translation Centre and training the next generation of allergy experts. I believe this national plan of action will have a life-changing impact.”
The NAC and NACE will together deliver the following:
- A shared care program to significantly cut wait times to see a specialist by at least 50% and improve access to quality allergy care for all Australians, especially in rural and remote areas.
- The digital infrastructure for a National Allergy Repository to facilitate precision medicine, allowing individualised allergy health care for children and adults. This would include a live anaphylaxis reporting system.
- A National Allergy Clinical Trials Network to provide Australians with accelerated access to safe and effective allergy treatments.
- Continued public health guidelines and prevention programs such as the successful food allergy prevention program ‘Nip allergies in the Bub’, which includes practical resources for parents and educational support for healthcare providers.
- New clinical and research capabilities to enable Australia to maintain its world-leading status in allergy research and to answer the most important questions in allergy that will guide the way forward to help decrease the burden on individuals, families, the healthcare system and the community at large.
The NAC is a natural progression of the National Allergy Strategy and will continue to be a partnership between the Australasian Society of Clinical Immunology and Allergy (ASCIA) and Allergy & Anaphylaxis Australia. The Centre for Food & Allergy Research has expanded to become the NACE, which will generate and synthesise the evidence base that underpins the activities of the NAC to ensure Australia remains at the forefront of evidence-based management of allergic disease.
Professor Michaela Lucas, President of the Australasian Society of Clinical Immunology and Allergy (ASCIA), said, “It is important the government has listened to the recommendations of the Parliamentary Inquiry. This funding will improve the health outcomes for patients with allergic disease and enable Australia’s allergy organisations to provide world-leading allergy management and research.”