PARLIAMENT OF THE COMMONWEALTH OF AUSTRALIA Walking the allergy tightrope Addressing the rise of allergies and anaphylaxis in Australia House of Representatives Standing Committee on Health, Aged Care and Sport May 2020 CANBERRA © Commonwealth of Australia ISBN 978-1-76092-094-4 (Printed Version) ISBN 978-1-76092-095-1 (HTML Version) This work is licensed under the Creative Commons Attribution- NonCommercial-NoDerivs 3.0 Australia License. The details of this licence are available on the Creative Commons website: http://creativecommons.org/licenses/by-nc-nd/3.0/au/. Foreword Australia has been called the world’s ‘allergy capital’ because of the increases in rates of allergies and anaphylaxis over the last twenty years. Over four million Australians live with allergies, and for many it is a tightrope to walk every day. As there is essentially no cure for allergies, it has become a significant public health issue - highlighted by the long waiting lists for patients to see allergy specialists throughout Australia. An allergy occurs when a person reacts to a substance in the environment that is harmless to most people. Humans can be allergic to any protein, but some of the more common allergens are found in dust mites, pets, pollen, insects, ticks, moulds, foods and medications. Anaphylaxis is the most severe form of allergic reaction and is life threatening if not immediately treated. Prevalence levels for allergic disease are collated from a range of National Health Surveys, Census data and hospital admissions. However, there is no nationwide data collection to provide accurate statistics on allergic disease to assist future research. To understand allergies better, this report recommends the establishment of a national centre for allergies and anaphylaxis to undertake research on current and emerging allergies and to establish a national register for anaphylaxis and drug allergies. Australia is currently a world leader in allergy research, but further research is necessary to understand and treat allergic disease. For example, vital work on the treatment of insect allergy has happened in Australia, including the breakthrough development of Jack Jumper Ant venom immunotherapy in Tasmania, as well as work on tick allergies. While there has been progress in understanding food allergy, with hospital admissions for food allergy increasing four fold over the past 10 years, it is crucial that further research be undertaken to assist with prevention, diagnosis, treatment and ultimately a cure. The Committee’s recommendation to establish a national centre for allergies and anaphylaxis will facilitate long term research into allergies. iii iv Australia has a ten per cent rate of food allergies for infants up to 12 months. This makes infant feeding particularly stressful for many Australian parents and long term it can have an overall negative impact on the quality of life for the individual and the family. The Committee received evidence from many parents who vigilantly manage their child’s severe and sometimes life-threatening food allergies. Daily life, including activities such as attending school or work and social engagements, is stressful for many people living with allergies. In some severe cases, it is extremely debilitating. Food is not only vital for life; it plays a large part in our social lives. Many people – both children and adults – told the Committee how their food allergies left them feeling excluded from social occasions. For many people with food allergies, food labels cause daily challenges. The Committee heard that improvements to Plain English Allergen Labelling are currently underway that will make allergen labelling clearer and more consistent. The Committee recommends that these improvements be expedited to assist people living with food allergies. Precautionary Allergen Labelling is an issue that causes frustration and anxiety for people with food allergy. This type of labelling informs food consumers of the possible presence of food allergens in a product when the allergen was not intentionally added but may have occurred due to cross contact. Most people would have read on the back of a food package words like “may contain tree nuts”. Up to sixty-five per cent of processed foods have a precautionary allergen label. This report recommends the development of a label to demonstrate that a food product has been assessed for certain allergens. This will lead to improved consumer confidence for some food products and will reduce the risks for people with food allergies every time they consume packaged food items. As there is no cure for allergies, the current expert advice is to avoid the allergen if it is known. In the event of an anaphylactic reaction, an adrenaline auto-injector or EpiPen is required to treat patients and hospital admission is required. It was concerning to hear that Australia experiences shortages of EpiPens when a manufacturing fault or contamination occurs within the production line. Currently, there is no alternative adrenaline auto-injector available in Australia. This report recommends that the Australian Government respond to this problem to encourage an alternative supplier in order to keep Australians living with allergies safe. Many individuals, especially parents of children living with food-related allergies, advocated for the increased availability of food immunotherapy. Currently food immunotherapy is not offered in Australia and several families told the Committee they had travelled overseas to receive immunotherapy for their children. This is an v area that will benefit from further research in Australia and this report recommends that clinical research be undertaken with the aim of being able to offer safe and well understood food immunotherapy in the future. Data on drug allergy is needed to improve the way Australia understands allergies. Drug and medicine allergy is a complex and costly problem. Besides the risk of anaphylaxis, other adverse drug reactions may cause significant morbidity and mortality. Australia currently has no systematic collection of data about adverse drug reactions. The Committee’s recommendation to establish a national centre for allergies and anaphylaxis will be important for managing a national register for drug allergy. Australia lacks a consistent approach to allergy and anaphylaxis management. Many people reported difficulties in accessing and receiving a diagnosis, often having to see several doctors and specialists before their or their child’s symptoms could be diagnosed. Timely access to specialists is a concern that was brought to the Committee’s attention. Australia has a limited number of allergists and immunologists and waiting lists for both public and private specialists are between six months and two years across many parts of Australia. Most of these specialists are in or near major cities so patients in rural and regional areas must travel long distances to see allergy specialists. The Committee has recommended providing telehealth funding support for doctors and allied allergy health workers to support allergy patients in rural, regional and remote Australia. The Committee heard there is a lot of misinformation available on the internet and this lack of consistent advice combined with long waiting times to see specialists results in people getting desperate for solutions and treatments to allergies. This report recommends a national framework be developed for allergies and anaphylaxis including a Shared Care Model for allergies and the development of Clinical Care Standards for anaphylaxis. Medical experts informed the Committee that medical education in relation to allergies and anaphylaxis was inadequate in Australia. This was the case for many General Practitioners, Paediatricians and other medical and health professionals. The incidence of drug-related anaphylaxis is high in Australia and accounts for fifty per cent of anaphylactic deaths. This is an area of concern that gets little attention despite significant health issues that arise from drug allergy mismanagement. This report highlights the need to improve education and training in allergies and anaphylaxis for all medical and health practitioners. In addition to the medical and health profession, the Committee recognises that a majority of the population lacks a good understanding of allergies and anaphylaxis. I hope that this report assists in educating the general community and vi other important industries such as food service, schools, hospitals and airline industries on allergies and anaphylaxis. Finally, I would like to thank the individuals and organisations who took the time to write submissions and appear at public hearings. I am grateful to the people who live with allergies who shared their unique circumstances and experiences. I particularly want to thank those who discussed their traumatic experiences of losing loved ones to anaphylaxis. I hope that the recommendations in this report will lead to changes that assist people living with allergic disease to have a better quality of life in the future. My sincere thanks to all Committee members for their engagement with this inquiry. I am especially grateful to several Committee members who contributed their own medical expertise and knowledge of this topic, which assisted the Committee to be well informed and to understand the more technical issues of the inquiry. I also extend the Committee’s thanks to the secretariat who brought their professionalism and dedication to the conduct of the inquiry. Mr Trent