national allergy strategy Improving the health and quality of life of Australians with allergic disease www.nationalallergystrategy.org.au An initiative of The leading medical and patient organisations for allergy in Australia Acknowledgements Lead organisations The leading professional organisation for allergy and The leading patient support organisation for allergy clinical immunology in Australia and New Zealand and anaphylaxis in Australia www.allergy.org.au www.allergyfacts.org.au Members of both of the lead organisations have generously donated their time and expertise to this project, particularly those listed in Appendix F. Steering committee Clinical A/Professor Richard Loh (Chair) Maria Said (Deputy Chair) Professor Katie Allen Professor Dianne Campbell Professor Jo Douglass Merryn Netting Dr Wendy Norton Sally Voukelatos Dr Brynn Wainstein Dr Melanie Wong ASCIA staff: Sandra Vale, Jill Smith Stakeholder organisations To ensure that the consultation process is inclusive, extensive and transparent, representatives from as many key stakeholder organisations as possible were invited to participate in the Allergy Summits and the development of the National Allergy Strategy. These organisations are listed in Appendix G. Supporting organisations It is important to note that the content of both the Allergy Summits and the National Allergy Strategy has been independently developed and has not been influenced by the following organisations that have provided unrestricted educational grants. Major supporters of the Allergy Summits Allergy Summit 2014 support: and National Allergy Strategy: • Nestlé Nutrition • Alphapharm • Merck Sharp Dohme • bioCSL • Nutricia • Stallergenes • Bayer Project coordinator and support Sandra Vale (ASCIA Education Project Officer), with assistance from other ASCIA staff: Jill Smith (ASCIA Executive Officer), Michelle Haskard and Rikki Dunstall. Facilitator of Allergy Summits: Dr Norman Swan Media releases and inquiries: Lanham PR Website: www.nationalallergystrategy.org.au developed by Impagination Graphic design: Rachael Hopkins The structure of the National Allergy Strategy has been based on the format of the National Pain Strategy. 1 Contents Page Acknowledgements 1 Foreword 3 Mission, goals and guiding principles 4 Rationale for the National Allergy Strategy Background 5 The case for change 8 National Allergy Strategy - Strategic Action Plan Strategic Action Plan – Goal 1: Standards of Care Develop standards of care to improve the health and quality of life of people with allergic diseases. 12 Strategic Action Plan – Goal 2: Access to Care Ensure timely access to appropriate healthcare management for people with allergic diseases. 15 Strategic Action Plan – Goal 3: Information, Education and Training Improve access to best-practice, evidence-based and consistent information, education and training on allergic diseases for health professionals, people with allergic diseases, consumers, carers and the community. 19 Strategic Action Plan – Goal 4: Research Promote patient-focused research to prevent the development of allergic diseases and improve the health and quality of life of people with allergic diseases. 25 Strategic Action Plan – Goal 5: Prioritised Chronic Disease n Recognition of allergic diseases as a prioritised chronic disease and a National Health Priority Area. 28 a t i o Appendices n A. Glossary of terms 29 a l B What works – a review of existing evidence 33 a C. How the National Allergy Strategy aligns with existing government initiatives 37 l l e D. Lead organisations 41 r g E. Consultation process 42 y F. Steering committee and working group members 43 s t G. Stakeholder organisations 45 r a H. Public health approach to allergic diseases 47 t e I. References 50 g y 22 Foreword Allergic diseases have become increasingly important chronic disease and public health issues in Australia and other developed countries over the last two decades, contributing to increased demand for medical services, significant economic cost of care and reduced quality of life of people with allergic diseases and their carers. Currently affecting more than 4 million Australians, the rapid and continuing rise of allergic diseases is therefore a serious public health issue that requires action by all levels of government and the community. To address these issues, the Australasian Society of Clinical Immunology and Allergy (ASCIA) and Allergy & Anaphylaxis Australia (A&AA), as the leading medical and patient organisations for allergy in Australia, have developed the first National Allergy Strategy for Australia in collaboration with key stakeholder organisations. ASCIA and A&AA strongly believe that the development and implementation of the National Allergy Strategy is the most effective way to address chronic disease and public health issues and to provide an effective and coordinated plan to guide future actions to optimise the management of allergic diseases in Australia. Cost effective solutions are available and through a coordinated and planned approach many issues can be addressed by collaboration between stakeholders in all regions of Australia. Implementation of these solutions has the potential for significant health and economic gains to be made through prevention, early intervention, community education and awareness as well as better access to diagnostic and therapeutic allergy services. Recommendations contained in the National Allergy Strategy have been developed with extensive consultation involving health professionals, consumers and industry, including an Allergy Summit held in August 2014. The National Allergy Strategy will help to: n A ddress the most important issues in allergic diseases that currently affect patient care. n R ecognise allergic diseases as important chronic disease and public health issues by all levels of government. n Provide direction to government agencies. n P revent allergic diseases, the most cost effective way to address the current allergy epidemic. n P romote and expand existing best practice healthcare management. n E nsure consistency in education, training, preventative measures and healthcare policies throughout Australia. n R educe unnecessary duplication of effort within and between different regions. n F ocus attention and research efforts on key allergic disease issues. The National Allergy Strategy is the first comprehensive initiative in Australia that sets out to improve the assessment and treatment of all forms of allergic diseases. It is intended to be a national response to the rise in allergic diseases and will provide a long term plan with realistic directions for short to medium term actions. Our intention is for this document to be used by state and federal governments, healthcare funders, medical practitioners, other healthcare professionals, consumers, researchers and research funders, to guide future policies and actions relating to allergic diseases in Australia. We look forward to working with all stakeholders in the implementation of the National Allergy Strategy. A/Prof Richard Loh Maria Said Chair Deputy Chair National Allergy Strategy Steering Committee 3 Mission, Goals and Guiding Principles Mission The National Allergy Strategy mission is to improve the health and quality of life of Australians with allergic diseases and minimise the burden of allergic diseases on individuals, their carers, healthcare services and the community. Goals 1. Standards of Care D evelop standards of care to improve the health and quality of life of people with allergic diseases. 2. Access to Care E nsure timely access to appropriate health care management for people with allergic diseases. 3. Information, Education and Training I mprove access to best-practice, evidence-based and consistent information, education and training on allergic diseases for health professionals, people with allergic diseases, consumers, carers and the community. 4. Research P romote patient-focused research to prevent the development of allergic diseases and improve the health and quality of life of people with allergic diseases. 5. Prioritised Chronic Disease Recognition of allergic diseases as a prioritised chronic disease and National Health Priority Area. Guiding principles The following principles have guided the development of the National Allergy Strategy: n A ll goals need to be ‘SMART’: 3 Specific 3 Measurable 3 Achievable n 3 Realistic a 3 Targeted and timely t i n P atients and consumers must be at the centre of everything we do, including taking into account quality of life o issues, equity of access, optimal care and consideration of carers. n n A ll remedial actions should be evidence-based (where possible). a l n A national collaborative and consistent approach should be taken to identify opportunities. a n T here should be a provision of optimal care over efficiency of care. l l e In understanding the impact of allergic disease in the community it is important to be aware of some important principles: r n P eople with allergy are not always sick and therefore are not always patients. g n Patients are people who are currently accessing care for their allergic disease. y n Consumers are people who are not currently accessing care for their allergic disease, but may do so in future. s n Carers (including parents/guardians, families and other carers) also need consideration as they are not patients, but t r differ from consumers. a t For a full glossary of terms, refer to Appendix A. e g The Strategic Action Plan is not an exhaustive list of strategic actions, but rather aims to provide a guide for the y implementation phase. 4 rA tionAle For the nA tionAl AllerGy strA teGy Background Allergic diseases occur when a person’s immune system n A ccess to appropriate and timely medical care for reacts to substances that are normally harmless to most allergic diseases is difficult, even in metropolitan people. These substances are known as allergens and areas, and particularly in rural and remote areas, due can be found in foods, airborne particles (e.g. dust mites, to the high number of patients and low number of pollens or moulds), insect venoms and drugs. appropriately trained healthcare professionals, resulting in long waiting times to see a specialist. Allergic diseases are amongst the fastest growing chronic disease and public health issues in Australia. They The impact of allergic diseases and the wide ranging include food, insect and drug allergies (including life issues in the current management of allergic diseases threatening severe allergic reactions called anaphylaxis), support a case for change relating to epidemiology, asthma, allergic rhinitis (hay fever) and eczema. Allergic standards of care, access to care, training, education, diseases, particularly food allergy and drug allergy, are research and health policy. The National Allergy Strategy increasing in prevalence, complexity and severity. These is intended to provide an overarching framework for a issues are highlighted by the following facts: national response to the rise in allergic diseases, including short, medium and long term objectives. n A lmost 20% of the Australian population has a confirmed allergic disease and this prevalence is The rise of allergic disease increasing1. We currently have an incomplete understanding of why n H ospital admissions for anaphylaxis have increased allergy, especially food allergy, has increased so rapidly 5-fold in the last 20 years2. in recent years, particularly in young children. It appears n H ospital admissions for food allergy induced to be a complex interplay between a western lifestyle, anaphylaxis have increased 4-fold in the last 14 years2. environment and a genetic predisposition with no single trigger factor identified. However, the following risk factors n R ecent studies show that 10% of infants have an are starting to emerge from epidemiological and controlled immediate food allergy3. studies8-11: n A lthough 5% of adults may be allergic to one or more n D evelopment of food allergy due to skin exposure drugs, up to 15% believe that they have drug allergy, to allergens (e.g. use of nut oil based moisturisers in and therefore are frequently unnecessarily denied infants with eczema). treatment with an indicated drug4. n F ilaggrin loss of function gene mutations. n D rug allergy induced anaphylaxis deaths have increased by 300%5 and drug allergy induced n D elayed introduction of allergenic foods (e.g. egg anaphylaxis presentations have trebled over the last and peanut). 14 years2. Other proposed risk factors (with only indirect evidence of n C onditions related to allergy such as food protein- an association) include12-15: induced enterocolitis syndrome (FPIES) and n T he hygiene hypothesis, which proposes that less eosinophilic oesophagitis (EoE) are increasing6,7. exposure to infections in early childhood, is associated n T here are often misunderstandings about “allergy” with an increased risk of allergy. A more recent version and a temptation to label many medically unexplained of the hygiene hypothesis proposes that the type of illnesses as being due to an “allergy”. This lack of microorganisms to which the mother, baby and infant public awareness about the impact and appropriate are exposed to and colonised with may alter their risk management of medically confirmed allergic diseases of developing allergic diseases. can result in the use of potentially unsafe alternative n M ethods of food processing (e.g. roasting versus tests and therapies. boiling of peanuts). 5 n V itamin D status (e.g. deficiency has been linked to Confirmed allergic disease higher risk of developing allergic diseases). Some people consider themselves to be allergic, but n R isk factors linked to socio-economic status, city do not have confirmed allergy. This may be related to versus rural residence, or “western lifestyle”. confusion between food allergy, metabolic conditions (e.g. lactase deficiency or fructose intolerance), food aversion, There are many studies regarding allergy prevention being so-called food intolerance or iatrogenic disorders undertaken, however, to date there are no clear guidelines introduced in individuals undertaking unproven forms of on how to prevent food allergy. The following infant “allergy testing” or following consultation with alternative/ feeding advice is currently provided by ASCIA16: unorthodox practitioners. The result can be unnecessary n Breastfeed for at least 6 months. dietary restrictions which impact on quality of life, increase the risk of developing new allergies and increases the n T here is no evidence that restricting a mother’s diet possibility of malnutrition, particularly in children. during pregnancy or during breastfeeding reduces the risk of developing food allergy. Such restrictions While up to 5% of adults may be allergic to one or can adversely affect growth in babies and is not more drugs8, there is common confusion regarding recommended. the differences between drug allergy, side effects or symptoms (e.g. rashes) that may occur due to the n C ontinue to breastfeed whilst introducing solid foods condition being treated, rather than the drugs. Some from 4-6 months when the infant is ready. individuals also unnecessarily avoid certain drugs n Do not smoke during pregnancy. because of an alleged family history of adverse reactions. Within the medical community, there is a low threshold to n Avoid exposure to tobacco smoke in the home. label any adverse reaction as “allergy”, with many patients inadequately assessed at the time of the incident. This In some cases there are inconsistencies between other has resulted in a significant proportion of the population Australian guidelines and ASCIA guidelines, particularly in (up to 15%) believing that they have “drug allergy”, and relation to infant feeding, which may result in: therefore they may be unnecessarily denied treatment n Confusion regarding infant feeding advice. with the preferred drug17. Failure to accurately diagnose drug allergy may result in sub-optimal treatment with less n n U se of alternative/unorthodox practitioners for advice effective and/or more expensive drugs. In people labelled a which is frequently not evidence-based and can result as having penicillin allergy this can result in the use of t in unnecessary dietary restrictions. i more broad-spectrum antibiotics increasing the risk of o n D elayed introduction of solids which can result in antibiotic resistant strains, increased morbidity with more n ICU admissions and longer hospital stays18. a missing developmental milestones and increase problems with growth, texture acceptance and l Some consumers and health professionals without a speech. training in allergy have a poor understanding of the l indication for and limitations of an “allergy test”. l n U nnecessary dietary avoidance to siblings of food e Clinical history along with allergy testing is used in the allergic children for fear they will be “allergic” r identification of allergen triggers, including foods, dust g (based on recent evidence, this may increase the risk). mites, pollens, moulds, insect venoms and drugs. Tests to y identify IgE sensitisation to an allergen include skin prick s testing and serum specific IgE (blood testing). Medically t supervised allergen challenges may also be undertaken r a to confirm a diagnosis or determine if a patient has t outgrown an allergy. e g y 6 Complexity of allergy n E fficient communication can be difficult due to the complexity and change in food allergies within the Allergic diseases commonly occur together in the same individual over time. individual and frequently affect several organ systems. The genetic influence of allergic diseases frequently There has been a significant increase in the complexity results in the clustering of a number of affected individuals and severity of a range of allergic diseases: in the same family. The so-called “allergic march” may n W ithin the acute healthcare sector, there is a lack progress from early onset atopic eczema and food allergy, of direct referral or consultation with a clinical to the development of allergic rhinitis and allergic asthma immunology/allergy specialist when drug allergy in an individual. impacts on first line medical management. There Allergic diseases also vary in severity and complexity. For is a need for a national drug allergy alert system to example, allergic rhinitis: register proven drug allergy. Pharmacists, if up-skilled in drug allergy, could make a significant contribution n C an range from mild symptoms responding to self- to antibiotic surveillance and appropriate medication management to severe symptoms unresponsive to first prescribing for people with proven drug allergy. line treatments and symptoms profoundly affecting work, school performance and quality of life. n M ore severe cases of anaphylaxis in infants are now being seen in hospital emergency departments, with a n I f poorly treated, may at times be complicated by 3-fold increase in anaphylaxis admissions in children higher rates of middle ear and sinus infections, aged 0-1 year from 38 cases in the financial year requiring medical or surgical intervention. 1998/99 to 115 in 2011/12, equivalent to a change from 15 to 100 cases per 100,000 population in that age Food allergies can also range from mild symptoms to life group19. Comparable data for those aged 1-4 years threatening allergic reactions (anaphylaxis) and nutritional shows an increase from 7 to 34/100,000 population in compromise, particularly if the individual has multiple that age group over the same time period. This does food allergies. not take account of the cases treated and discharged With the increase in multiple allergies and allergic diseases without being admitted. In the past, children under in individual patients and the increase in food allergies, one year of age have not been prescribed adrenaline anaphylaxis and severe asthma, the impact of severe autoinjectors as the likelihood of fatal anaphylaxis and complex allergies is considerable. Issues arising from was rare. With an increasing number of infants now this include: requiring adrenaline for anaphylaxis, adrenaline autoinjector prescribing practices need to n P atients are often referred to a succession of different be reviewed. medical specialists, potentially resulting in confusion. n T he relationship between food allergy and other n O ther medical specialists often fail to recognise and co-morbid conditions such as asthma and eczema respect the significance of allergic triggers in the also have implications on management and possibly overall management of complex allergic disease. prevention of allergy progression and/or poor For example: patient outcomes. - A child with peanut allergy will often also have eczema, allergic rhinitis and asthma, so-called n W hile identification of risk factors (both genetic and ‘multi-system allergic disease’. environmental) for allergy development are starting to emerge, our ability to prevent the risk of new allergic - Poorly controlled asthma in a patient with food diseases or intervene in established allergic diseases is allergy is a risk factor for life-threatening and fatal currently limited. allergic reactions. 7 the Case for Change Allergic diseases are amongst the fastest growing chronic n F ood allergies and eczema disproportionately affect disease and public health issues in Australia, currently children and teenagers, impacting on their school affecting more than 4 million Australians. The rapid and performance, social life and general quality of life24. continuing increase in the prevalence and impact of Some allergies, particularly food and insect allergies, allergic diseases on the health system and the quality of result in anaphylaxis, which more frequently occur life of patients and carers demands an urgent response. outside the home (e.g. school). Despite this, school Development and implementation of a National Allergy staff are often not prepared when facing a child with a Strategy for Australia is the most effective way to address severe allergic reaction during school hours. these issues. n A llergic diseases affect not only the patient but also There have been significant efforts and advancements in their families in many ways (e.g. time off from work some areas such as the food industry who have worked to attend medical appointments, cost of allergy both with and without government support. However, medications many of which are not PBS subsidised, there are still many areas where improvements are needed. extra time caring for the child with allergic disease). n A llergic diseases may affect career choices, including Impact of allergic diseases those pursuing careers within the Australian Defence n A llergic diseases have a significant economic impact, Forces, where the presence of food, drug or insect estimated at ~AU$30 billion in 20051 with medication allergy precludes enlistment according to current costs related to treatment of allergic rhinitis alone policies. Allergies to natural latex rubber or food allergy estimated to be $226.8 million in 201020. may limit or restrict ongoing careers in nursing, medical or food catering services, respectively. n C urrent public health policies overlook allergic diseases, causing great cost to society through hospital Access to care issues admissions and lost productivity, and to individuals by diminishing their quality of life. It is essential that people with allergic diseases are able to access appropriate care by trained and knowledgeable n E ven non life-threatening allergic diseases can lead to health professionals. Whilst there are existing issues absenteeism or lost productivity by those attending with access to care, these are likely to worsen with work when ill (‘presenteeism’), poor academic n the increasing prevalence of allergic diseases. Existing performance and restricted social interaction due to the a issues include: symptoms and the need to avoid certain allergens21. t i n A ccess to appropriate care is often delayed with o n M any patients have increased visits to their primary long waiting times to see medical specialists such as n health care provider, if their allergic diseases are not clinical immunology/allergy specialists, dermatologists, a being managed effectively. paediatric gastroenterologists and allied health l n A llergies to food, insects and drugs can be life- professionals (e.g. allergy dietitians). a l threatening and particularly for food and insect allergy, n L ong waiting times for clinical immunology/allergy l e this can impact greatly on a person’s quality of life22,23. specialist appointments has resulted in patients r Those at high risk of anaphylaxis live with the very real seeking advice from alternative/unorthodox health g daily fear of a life-threatening severe allergic reaction. practitioners. In a NSW coronial enquiry, the coroner y n O ptimal management of allergic diseases can help made a recommendation that an awareness campaign s to reduce the likelihood of further development of regarding the dangers of food and other allergies t associated allergic diseases and complications. (e.g. and anaphylaxis should also target practitioners of r a optimal management of allergic rhinitis may reduce the homeopathy and naturopathy25. t risk of developing asthma or obstructive sleep apnoea). e g y 8 n A bsence of appropriate care carries a significant n O ther conditions such as FPIES and EoE are at times risk of serious adverse events in a relatively well difficult to diagnose and may require management by a population and increases healthcare encounters and number of subspecialties and a team approach. associated costs. Standards of care issues n T here is a lack of allergy and clinical immunology standards related to what a tertiary hospital should be Untreated or poorly managed allergic diseases result providing as “core business”. in preventable morbidity and unnecessary hospital admissions. Optimal clinical care is essential for the n P atients are not being referred by primary health care diagnosis and management of allergic diseases and to providers for assessment by a clinical immunology/ ensure optimal patient outcomes. Current issues relating allergy specialist, who can accurately diagnose, to standards of care include: educate and initiate best practice management (including allergen immunotherapy where indicated). n I nconsistencies in the prevention and management of allergic diseases across Australia, including gaps in: n A ccess to care in rural and remote areas is inequitable, - Knowledge of allergic disease management of many particularly as most specialists are based in cities. health professionals. n P atient access to prompt specialist follow up after - Anaphylaxis management staff education and anaphylaxis is currently sub-optimal. policies in schools and childcare. n I ndividuals at risk of food allergy induced anaphylaxis - Anaphylaxis management pathway within the acute and their carers have higher than average rates of healthcare setting, inclusive of acute anaphylaxis anxiety26-28. Some studies regarding post-traumatic protocols, discharge planning, provision of an ASCIA stress29 indicate that some patients may require Action Plan for Anaphylaxis, adrenaline autoinjector psychological assessment and support after prescription and direct referral to a clinical experiencing anaphylaxis. immunology/allergy specialist from emergency departments. n W ithin allergy services there are resource bottlenecks that can undermine the efficiency of service delivery. n E ffective transitioning of patients transferring from paediatric to adult care is required. n U se of media to promote evidence-based consumer information on all aspects of allergic diseases is n W ork with food industry to improve communication of suboptimal. risk for packaged food needs to continue. n W hile many allergy services are provided outside of n I nconsistent food recall processes across regions that hospital ambulatory care settings (e.g. private practice can place individuals with food allergy at increased risk. or privatised hospital clinics), tertiary hospital based n A need to continue working with the food service services are essential to provide: industry to improve education and work practices to - Care for some very complex cases. enhance the safety of food allergic customers. - Inpatient consultation services. n L ack of awareness and understanding of legislation - Food or drug challenges. surrounding food, particularly in some parts of the - Education for medical students, nursing and food service industry, consumers with food allergy and medical staff. carers of children with food allergy. - Centres of research from which new interventions n L ack of standardised protocols for the diagnosis and may arise. management of suspected drug allergy. 9