Allergic disease currently affects more than four million Australians and is rising in prevalence. It negatively impacts on individuals’ and families’ quality of life, especially for those people with multiple or severe allergic diseases. Living with allergies, and in particular the risk of anaphylaxis, can create high levels of anxiety for individuals and their families in everyday life.
It is estimated that allergies and anaphylaxis have been on the rise in Australia over several decades. As there is no cure this has become a significant public health issue. Many Australians have more than one allergic disease state and many families have several family members living with allergic disease. Research suggests that ‘a parental history of both parents having allergic disease equates to offspring having a 60 per cent chance of developing allergic disease.’
Australia is often referred to as the ‘allergy capital of the world’. However, Australia’s allergy rates are probably not dissimilar to other developed countries such as the United Kingdom (UK) and the United States of America (USA).
The term allergic disease covers several disease states, including but not limited to, atopic dermatitis (eczema), allergic rhinitis (hay fever), allergic asthma, food allergy (including mammalian meat allergy), drug allergy, latex allergy, insect allergy (including tick allergy), exercise induced anaphylaxis (often food dependant), idiopathic anaphylaxis (no known cause) and cold urticaria (hives).
This chapter addresses the prevalence rates of allergies and anaphylaxis in Australia, diagnostic methods, costs of living with allergies and theories of possible causes on this significant health issue affecting many Australians.
Definition of allergy
Allergy occurs when a person reacts to substances in the environment that are harmless to most people. These substances are known as allergens and are found in dust mites, pets, pollen, insects, ticks, moulds, foods and some medications.
Food allergies can be divided into two types: IgE mediated and non IgE mediated. Immunoglobulin E (IgE) are antibodies produced by the immune system. If you have an allergy, your immune system overreacts to an allergen by producing antibodies called IgE. These antibodies travel to cells that release chemicals, causing an allergic reaction. A blood test can ascertain levels of IgE that can be used to confirm allergies.
The signs and symptoms of IgE mediated food allergy usually occur within minutes of ingestion and includes hives, redness of skin, vomiting and in some severe reactions anaphylaxis.
Non IgE mediated food allergies are caused by a reaction involving other components of the immune system apart from IgE antibodies. Endoscopies, colonoscopies and biopsies are required to diagnose non IgE mediated allergies.
Atopy is the genetic tendency to develop allergic diseases. When atopic people are exposed to allergens they can develop an immune reaction that leads to allergic inflammation. This can cause symptoms in the:
Nose and/or eyes, resulting in allergic rhinitis (hay fever) and/or conjunctivitis;
Skin, resulting in eczema, or hives (urticaria); and
Lungs, resulting in asthma.
When a person who is allergic to a particular allergen comes into contact with it, an allergic reaction occurs:
When the allergen (such as pollen) enters the body, it triggers an antibody response;
The antibodies attach themselves to mast cells;
When the pollen comes into contact with the antibodies, the mast cells respond by releasing histamine; and
When the release of histamine is due to an allergen, the resulting inflammation (redness and swelling) is irritating and uncomfortable.
Similar reactions can occur to some chemicals and food additives. However if they do not involve the immune system, they are known as adverse reactions, not allergy.
Anaphylaxis is the most severe form of allergic reaction and is life threatening if not immediately treated. Anaphylaxis is an allergic reaction involving more than one body system, for example: skin, respiratory, gastrointestinal and/or cardiovascular.
The most common triggers of anaphylaxis are foods, insect stings and drugs or medications. Anaphylaxis is indicated by any one of the following signs:
Swelling/tightness in throat;
Difficult talking and/or hoarse voice;
Wheeze or sudden persistent cough;
Persistent dizziness or collapse;
Pale and floppy (young children); and
Abdominal pain, vomiting (for insect sting or injected drug allergy).
Adrenaline (epinephrine) is the first line treatment of anaphylaxis and acts to reduce airway mucosal oedema, induce bronchodilation, induce vasoconstriction and increase strength of cardiac contraction. The dosage of adrenaline depends on the weight of the person. Currently there are two doses of adrenaline auto-injectors available in Australia:
EpiPen (0.3 mg) is usually prescribed for adults and children over 20kg; and
EpiPen Junior (0.15mg) is usually prescribed for children 7.5kg – 20kg. Children under 7.5kg are not usually prescribed an adrenaline auto-injector device.
Not all individuals with food allergy will experience anaphylaxis. However understanding risk factors for anaphylaxis among those with food allergy is critical to inform prevention and management strategies.
Australia lacks a structured reporting system to capture data on the incidence of anaphylaxis, therefore the true incidence of anaphylaxis is unknown. An anaphylaxis notification scheme was recently established in Victoria but is only available in that state. Available data indicates that deaths from anaphylaxis have increased.
The Australasian Society of Clinical Immunology and Allergy (ASCIA) is the peak professional body for allergy and clinical immunology in Australia and New Zealand. ASCIA stated that one in five (20 per cent) Australians are affected by allergies and anaphylaxis. This figure includes allergies to food, drugs, insect venom, ticks, environmental allergens such as pollen and grasses, latex and chemical products used in cleaning and cosmetics.
Dr Mullins, allergist and immunologist, recently reviewed all cases of fatal anaphylaxis referred to the coroner in the last 20 years in Australia. The findings showed ‘Unlike the UK and the USA, anaphylaxis fatalities have increased in Australia in parallel with increasing hospital anaphylaxis admission rates.’
The following figures provided by Dr Mullins demonstrate the increasing hospital admission rates in Australia:
In our most recent publication examining increasing rates of Australian anaphylaxis admission rates, we described food and total anaphylaxis admission rates in children aged 0-4 year to be 7.3 and 9 per 100,000 population in 1999, rising to 30.2 and 34.8 per 100,000 population for the financial year ending June 2012. Our most recent (unpublished) analysis for the year ending June 2018 shows even higher rates of 46 and 53.2 per 100,000 population, respectively.
The Centre for Food and Allergy Research (CFAR) provides a network for collaboration amongst paediatric food allergy researchers, clinicians and communities affected by food allergy.
CFAR researchers have shown that:
Australia has the highest prevalence of IgE-mediated food allergy in the world, with a staggering 10 per cent of infants with challenge-proven food allergies, and of greatest concern, an increasing associated fatality rate. Rates of anaphylaxis have continued to rise over the period 2005-2015, with a second rise in the adolescent age group, and a five-fold increase in hospital admissions for anaphylaxis between 1995 and 2005.
CFAR noted that ‘Hospital admissions data from 1998-2012 showed that food-induced anaphylaxis was the most common cause of hospital admissions for anaphylaxis in Australia. Hospital admissions for food-induced anaphylaxis were highest in young children (under 5 years of age).’
CFAR also found that ‘adolescents with nut allergy were at increased risk of anaphylaxis compared with those with other food allergies.’
Most drug-related anaphylaxis fatalities occur in a medical setting, which triggers an automatic referral to the coroner for assessment. This allows for lessons to be learned regarding the most common triggers, to facilitate the accuracy of medical records and processes to be identified that might reduce the risk of further inadvertent exposure.
Dr Mullins commented that ‘it is highly likely that food related anaphylaxis is underreported or may not even be suspected if it occurs at home away from a hospital or is unwitnessed.’ Dr Mullins emphasised that ‘death may not necessarily be attributed to anaphylaxis as there are no autopsy specific features of anaphylaxis.’
CFAR highlighted the issue of mismanagement of anaphylactic patients:
Across Australia, anaphylaxis continues to be mismanaged with many people treated sub-optimally – including not being given adrenaline (epinephrine) which is the first line treatment for anaphylaxis. Patients are discharged without a prescription for an adrenaline auto-injector (EpiPen) or a referral to see a clinical immunology/allergy specialist for follow up care.
Prevalence of allergic disease
Australian medical professionals agree that allergies and rates of anaphylaxis are increasing; however precise statistics are not available. Prevalence levels for allergic disease are generally collated from a range of National Health Surveys, Census data and hospital admissions data. Prevalence rates of allergic disease are highest in young children but are also increasing in adolescents and young adults.
The figures below break down the prevalence levels for some allergic disease in Australia:
around 10% of infants in Australia are affected by food allergy by the time they are 12 months old;
1 in 9 Australians have asthma and of these 3-10% have severe asthma;
1 in 5 Australians have allergic rhinitis;
around 25% of the population will suffer from urticaria (hives) at some point in their lives and up to 3% will have chronic urticaria;
anaphylaxis is reported to occur on 0.2% of children and 3% of adults, but an increase in incidence has been reported over time; and
around 32% of Australia’s population will have atopic dermatitis at some point in their life.
The increase in allergies in Australia over recent decades has resulted in long waiting lists to see specialists and has put a strain on medical services including allergists, immunologists and allergy nurses in the public and private systems. Access to expert advice and treatment will be discussed further in chapter 3.
Food allergy rates are highest for infants. However, while some infants grow out of allergies, some people develop allergies in adulthood. ASCIA reports that ‘food allergy occurs in around 10% of infants, 4-8% of children, and about 2% of adults in Australia and New Zealand.’
Research shows that while some children outgrow their allergies to cow’s milk, soy, wheat or egg, approximately 75% of children will have persistent allergies to peanut, tree nuts, sesame and seafood.
CFAR called for additional research into factors that predict the risk of anaphylaxis among individuals with food allergy. In order to facilitate further research, the collection of anaphylaxis data is essential:
Data from a National Anaphylaxis Surveillance Unit will be required to achieve this – we envisage a model similar to the Adverse Events Following Immunisation (AEFI-CAN) reporting system.
Dr Mullins commented on the prevalence levels of food allergy increasing over time in the absence of a cure:
The incidence of food allergy (or new cases occurring over a set period of time) is most common in early childhood but as children age, if allergy does not resolve spontaneously, the population prevalence (the proportion of the population currently with disease) will inevitably increase with time.
We are already observing this in Australia in older teenagers and adults who are allergic to triggers such as peanut, nuts, seeds or seafood where allergy rarely resolves, resulting in accelerating rates of hospital anaphylaxis admissions.
In absence of a cure for food allergy, population prevalence will continue to increase steadily even if incidence remains stable. If incidence also increases, then the rates of increase in prevalence will likely accelerate exponentially. Thus, food allergy prevalence will only likely stabilise if an effective cure becomes available allowing the rate of disease resolution to equal the rate of new cases, and only reduce when a greater number of cases are cured than new cases emerge. As health service demand is largely determined by prevalence, it will be vital to identify effective strategies to treat established disease and prevent new cases of food allergy.
A majority of submissions to the inquiry focussed on paediatric allergy; however it is important to note that children grow up to become adolescents and then adults and will continue to experience allergies. As Professor O’Hehir of the Alfred Hospital commented ‘it’s important that we consider the needs of adult patients with allergy and anaphylaxis too.’
Non IgE mediated allergy
As well as rising rates of IgE mediated (rapid onset) food allergy and anaphylaxis, there is also emerging evidence that non IgE mediated (delayed inflammatory) food allergy such as allergic gastroenteritis and eosinophilic oesophagitis (EoE) is also increasing in incidence.
Dr Mullins commented on the rising allergic gastroenteritis admission rates in Australian hospitals:
Our data showed an increase in so-called allergic gastroenteritis admission rates in Australian babies from 6.8 per 100,000 population in 1998 to 26.6/100,000 in 2014.
Professor Douglass of The Royal Melbourne Hospital agreed that the rate of eosinophilic oesophagitis is increasing within the population:
…we are seeing more eosinophilic oesophagitis in the young adult men, which is an area that I think really does need some attention in terms of possible biologics and equitable treatment.
A peak body for eosinophilic oesophagitis, ausEE, commented that ‘EoE affects people of all ages, gender and ethnic backgrounds and in some families, there may be an inherited (genetic) tendency.’
CFAR commented that non IgE mediated food allergy has received far less research attention and as a result, much less is known about how to prevent and treat these disorders:
There are a number of non IgE mediated food allergic disorders (for example, infantile proctocolitis and food induced enteropathy) that are transient and disappear in early childhood. Despite this, they can still have a significant impact on child and family quality of life at a critical stage of early life. By contrast, eosinophilic oesophagitis (EoE) is a delayed inflammatory reaction of the oesophagus affecting children through to adults where resolution is rare. Population prevalence is estimated at 1/1000 and morbidity from difficulty swallowing or choking on food and food impaction significantly impacts on quality of life. Treatment options are limited to medication or trials of dietary restriction.
Dr Mullins estimated incidence of Food Protein Induced Entercolitis Syndrome (FPIES) is around 1/10,000 individuals although the true incidence is likely much higher due to poor recognition and underreporting.
Drug and medicine allergy
Drug and medicine allergy is an important, complex and costly problem. Besides the risk of anaphylaxis, other adverse drug reactions (such as severe cutaneous adverse reactions or SCAR) may cause significant morbidity and mortality. Currently in Australia, there is no systematic way of collecting data about adverse drug reactions.
The NAS commented ‘Up to 25 per cent of patients presenting to hospital report a drug allergy (commonly antibiotics), which has a major impact on antimicrobial stewardship. Many studies have shown that only 10 per cent of those claiming a drug allergy are truly allergic. The importance of a correct diagnosis of a person’s drug allergy status is vital as this allows for the use of the most appropriate medications.’
Some of the statistics on allergies is self-reported from the ABS data collections. In the 2014-15 National Health Survey, 4.7 per cent of Australians reported having a drug allergy. This issue will be discussed further in chapter 3.
Professor Douglass noted the high incidence of drug-related anaphylaxis death in Australia.
…whilst 20 or 25 per cent of deaths are likely due to food allergy, probably over 50 per cent are due to drug allergy—and that's dominantly in adults—and therefore the major cause of anaphylaxis death is actually drug allergy. So, if we're looking at anaphylaxis, we have to think about that as a cause and think what might be done around that.
Eczema (also called atopic dermatitis) affects the skin, causing redness, itching and sometimes infections. Eczema that gets worse is called an eczema flare. Usually there is no single trigger for an eczema flare. Eczema can vary from a mild itch to a debilitating condition that has a huge impact on quality of life.
Eczema is a chronic health problem that affects many people of all ages, but is most common in infants:
infantile eczema occurs in around one in five children under two and usually improves by five years of age;
childhood eczema may follow or starts from two to four years of age. Rashes and dryness are usually in elbow creases, behind the knees, across ankles, or on face, ears and neck; and
adult eczema symptoms also occur in these areas and can cause rough, hard and thickened skin.
Eczema SUPPORT Australia reported the following global statistics of eczema:
20% of children, with 10%-40% having it in the moderate to severe form;
9-15% of adolescents; and
2%-8% of adults, with 40%-45% having it in the moderate to severe form.
Up to 80 per cent of children with eczema will develop asthma later in childhood. Eczema sufferers also tend to have food allergies, asthma and hay fever.
Eczema is not exclusively a childhood disease. It can be severe, and it is a chronic, lifelong condition (where symptoms vary over time). The consensus across Europe, USA and Australia is that the prevalence and severity of eczema is on the increase.
Asthma is a lifelong condition of the airways. About one in nine people in Australia have asthma, which is one of the highest rates in the world. While in many cases it is a manageable condition, asthma leads to the deaths of over 400 Australians each year.
Asthma affects people of all ages and can appear at any stage of life, with symptoms including wheezing, coughing, breathlessness or shortness of breath, and chest tightness. This is due to a temporary narrowing of the airways. People with asthma often experience symptoms at night, early in the morning or after physical activity.
People with asthma are likely to also experience allergies or anaphylaxis throughout their lives, with the Murdoch Children’s Research Institute finding that teenagers with food allergy are four times more likely to report having asthma.
ASCIA stated ‘asthma, food allergy and high risk of anaphylaxis (severe allergic reaction) frequently occur together and asthma increases the risk of fatal anaphylaxis.’
Allergic rhinitis (hay fever)
Allergic rhinitis is more commonly known as hay fever. It is caused by the nose and eyes coming into contact with environmental allergens such as pollens, dust mite, moulds, and animal dander. The National Health Survey suggests 4.6 million Australians (19.3 per cent of the population) are affected by allergic rhinitis.
The connection between tick allergy and anaphylaxis is a relatively new discovery and is the only allergy where the trigger (tick bite) is known. Mammalian Meat Allergy after tick bite (MMA) was first reported in 2007 in Australia by Professor van Nunen et al. MMA has been identified in 17 countries around the world.
The Tick Induced Allergies Research and Awareness (TiARA) organisation informed the Committee that tick induced allergies comprise:
food carbohydrate induced enterocolitis syndrome (FCIES); and
large local reactions to ticks.
The allergen in the mammalian meat has been found to be a carbohydrate molecule called galactose-alpha 1, 3-galactose (“alpha gal”). Tick anaphylaxis, on the other hand, is due to the development of an allergy antibody to tick salivary protein.
Worldwide, Australia has the highest prevalence of mammalian meat allergy and tick anaphylaxis. The prevalence rate for MMA is 113/100 000. TiARA commented that ‘modelling the effects of global warming indicates that higher tick exposure will occur in the future.
More than 50 per cent of Australians live in regions where the Australian paralysis tick is endemic and a second tick species in Western Australia has been described as a cause of MMA, increasing the exposure of the Australian population to around 60 per cent.
TiARA stated that tick anaphylaxis has caused four fatalities between 1997 and 2013.
Exposure to latex can lead to generalised and serious allergic reactions, including anaphylaxis. Latex is most often associated with disposable gloves, but other common items that may contain latex include balloons, bandages, rubber bands, paint, swimming caps, condoms and syringes.
Latex allergy is a well-recognised occupational allergy and regular use of latex gloves can trigger sensitisation and allergy in up to 30 per cent of healthcare workers.
Most adverse reactions to latex are irritant dermatitis, which is not an immediate allergic reaction. It results in rough, dry, scaly skin, sometimes with weeping sores. Some proteins in latex are also present in foods and some people with latex allergy find certain foods cause itchy mouth or throat swelling, such as banana, avocado, kiwi fruit, passionfruit, plums, strawberry and tomato.
The following insect stings are known causes of anaphylaxis: bees, wasps, Jack Jumper Ants and Green Ants. Allergies to venoms from stinging insects are one of the most common causes of severe allergic reactions (anaphylaxis) in Australia.
Allergy to Jack Jumper Ant is problem that is unique to Australia. The ants are only found in the cooler areas of south-western and south-eastern Australia. Jack Jumper Ant ‘hotspots’ are found in the Adelaide Hills, rural and semi-rural areas around Melbourne and widely spread throughout Tasmania. Jack Jumper Ant stings are the second most common cause of sting anaphylaxis in Southern and South-Eastern Australia.
The Royal Adelaide Hospital noted that in 1149 consecutive cases presenting with anaphylaxis to Royal Hobart Hospital, Jack Jumper Ant venom was dominant amongst all potential causes of anaphylaxis, including penicillin and nut allergy:
In South Australia, a state with the highest prevalence of hospitalisation for allergy to honey bee stings in Australia, it accounts for around 30% of insect sting allergy referrals, far outnumbering the combined total for "European" wasps, paper wasps and other stinging ants. There have been at least 4 deaths in Australia due to JJA anaphylaxis prior to the introduction of JJA venom immunotherapy treatment.
The Department of Industry, Innovation and Science told the Committee that new and novel foods made from insect protein have the potential to introduce new allergens to the Australian diet:
The allergens may be introduced either as new foods, or by modification of familiar foods, which become more allergenic to unsuspecting consumers. For example, insect proteins are likely to be highly allergenic to sensitive individuals. Phylogenetically, insects and crustaceans (including shellfish) are closely related and the muscle proteins that shellfish allergic individuals react to (tropomyosins) are known to be very similar to those in insects. Severe allergic reactions, including anaphylactic shock, appear to have affected people with a known shellfish allergy after they have ingested insect-based proteins.
The terms ‘allergy’ and ‘intolerances’ are frequently misused within the community and it is important to distinguish true immune mediated allergy from intolerances.
Diagnostic tools include measures of sensitisation such as skin prick tests and blood tests for specific IgE mediated food allergy for some foods. However these tests only determine sensitisation and many patients still require a food challenge to confirm clinical food allergy status. Skin prick testing reagents are of variable quality and are not available for all allergens such as some tree nuts, fish and shellfish.
While skin prick tests and blood tests (serum specific IgE) suggest the probability of a patient having a food allergy, they do not definitively confirm food allergy, nor are they the most reliable way to see if a patient has outgrown their food allergy.
An increase in skin prick tests and blood tests for allergy screening has potentially lead to an over diagnosis of food allergy. Dr Joanne Smart, Director, Department of Allergy and Immunology, Royal Children's Hospital commented that this is problematic and requires further research as it may lead to an increased risk in the development of food allergy if certain foods are avoided in infancy:
What has happened over the last 20 years is that there has been a significant change in clinical practice that has been adopted by some practitioners faster than others. Conventional allergy testing, which is generally robust for confirmation where there has been an allergic reaction, has occurred, but when it's used indiscriminately to screen for food allergy, in particular in infants under the age of two, it can lead to over diagnosis and unnecessary dietary restriction. Evidence shows that this may even increase the risk for the development of food allergy in that infant.
Accurate identification of the individual foods to which a patient is allergic is critical for the management of food allergy and prevention of allergic reactions. The current gold standard for diagnosis of food allergy is an oral food challenge (OFC), which requires specialist medical supervision. OFCs are used to determine whether:
a suspected food allergy is an actual allergy (where clinical history/allergy tests are unclear);
individuals with a confirmed food allergy can safely eat alternative but related foods (such as other types of nuts); or
a child has outgrown an existing confirmed food allergy.
CFAR discussed the importance of the research it is undertaking in relation to food desensitisation, also called food based oral immunotherapy:
Despite excellent gains in our understanding of food allergy, there is much work to be done. We have major gaps in evidence of the efficacy, safety, cost-effectiveness and impact in the short and long term of desensitisation treatments (e.g.: oral immunotherapy). We need to better understand the various options for treatment through head-to-head trials in Australian children. In order to develop appropriate decision-making tools to allow evaluation of which treatment (if any) is most suitable for which patient, we need to better understand the prevalence, risk factors, immune mechanisms and genetics of food allergy, and to improve biomarkers for diagnosis and prognosis.
CFAR has developed diagnostic tools for improving the accuracy of peanut and egg allergy diagnosis using allergen component resolved diagnostics (CRD). However these promising findings require further research and validation before they can be used in a clinical setting.
Correct therapy for asthma, which can be life threatening, and other allergic diseases relies on accurate diagnosis to inform effective treatments, preferably by combining the clinical history with confirmation by detection of allergen specific IgE.
Non IgE mediated food allergies such as EoE and FPIES, infantile proctocolitis and food induced enteropathy require endoscopies, colonoscopies and biopsies into order to make a diagnosis.
The NAS stated that:
Better diagnostic tools for food and drug allergies are required as this may allow doctors to distinguish between food/drug tolerant and allergic patients without the need for skin testing and potentially harmful challenges; this would be a huge cost saver and make assessment of allergies a lot safer.
Costs to individuals and the Australian health system
Allergies come at a significant cost to individuals with allergies, families of allergy sufferers, and the community.
Food allergies are estimated to cost the Australian economy $7 billion each year, with the greatest contributor being lost productivity (71 per cent of total cost). In the context of anaphylaxis it is important to remember that the cost of the hospital presentation, treatment and health care follow up are only a small part of the economic impact. The impact on carers and their time is likely to be profound. There is a paucity of data on health-related quality of life associated with food allergy and anaphylaxis in children and adolescents, and their carers.
Financial burden was a significant issue that was raised frequently by individual submitters who have allergies themselves or care for someone who does. The costs of living with allergies can include: specialist fees, repeat appointments with General Practitioners (GPs) and specialists, creams and ointments, inhalers, skin treatments, alternative foods and dietician and counselling appointments. These costs could be exacerbated by having multiple children with allergies or having several comorbid allergic conditions.
The NAS reinforced that allergies create a financial burden on families:
Besides the cost of emergency medication, people with multiple food allergies need to buy special, more expensive foods and often spend disproportionate amounts of time in food preparation. Further to this, some treatment options (such as allergen immunotherapy) can have a significant positive impact on quality of life and may improve the course of disease but are expensive.
A large part of these costs were associated with buying speciality food which did not contain allergens. One submitter stated that her grocery bill exceeds her mortgage repayments largely due to having to buy speciality food and shop at health food stores.
Many people reported making food and household products from scratch in order to ensure there were no allergens present in their homes.
My Food Allergy Friends commented that:
…there is a huge cost ﬁnancially to families, we travel up to four hours return to see an allergist and our medical bill, food bill and lost time from work has a huge impact on us. It would be great to see data collected on the average cost of allergies on families.
One witness estimated that the cost of their allergies ‘ranged from $7000 - $8000 annually, these were out of pocket expenses when accessing the private system to enable regular treatment and assessments.’
The parents of a four year old who was diagnosed with FPIES at the age of 7 months, estimated the costs so far to treat their child would be ‘in excess of $20 000 on privately funded feeding therapy, access to allergy specialists, medical professional consultations and infant formula’.
Food challenges in the private system are expensive, at approximately $400 per allergen. If someone has multiple allergies then the cost of going private is prohibitively expensive for some families:
The point of my example is to highlight the deficiency in the availability of food challenges, which are really heralded as the gold standard in diagnosing food allergies. As I said, if I had chosen to access a private allergist it would have cost me over $400 per allergen, and my child—and this is just my daughter I'm talking about—is allergic to more than 10 foods. And then I have my three-year-old, who is also allergic to multiple foods.
Dr Mullins raised the issue of the high cost for FPIES:
Cost of care can at times be substantial with the need for use of expensive hypoallergenic infant formula (subsidised by Medicare) for one or two years, the need for medical review and at times, hospital challenge to prove resolution if symptoms have been severe.
Jack Jumper Ant immunotherapy is only available in Tasmania, Victoria and South Australia despite the ants being present in other states and territories. The cost of immunotherapy is funded by the state governments in Victoria and Tasmania but not in South Australia. The treatment cost for immunotherapy in South Australia is very high:
The cost currently is about $3,500 for the first year during the build-up phase, where you use more venom because you give it more frequently. Thereafter it is about $2,500 per year for the next five years. It has already been said about the quality-of-life issues and the constant fear that people live in.
A member of the eczema support group made the following comment about the costs of living with eczema:
Thousands of dollars spent on doctors’ fees, prescription creams, moisturisers, different specialists & treatments, inability to work full time due to severe eczema. Not just a financial burden, but also costly in terms of just living a full life - loss of quality time with friends and family during flare-ups, being unable to travel to particular destinations with poor water hygiene due to high risk of bacterial skin infections, problems undertaking sweaty exercise because it triggers a flare, etc. there are so many costs to eczema.
In addition to financial costs other costs of allergies include absenteeism at work and school and giving up work/careers to look after children including home schooling children with severe and multiple allergies.
Asthma Australia stated that the cost of anaphylaxis to Australian society is increasing. In a study commissioned by ASCIA in 2007, it found that anaphylaxis cost Australia upwards of $7.78 billion.
Asthma Australia commented that asthma, food allergy and anaphylaxis often occur together:
It was found that the combined cost of anaphylaxis and asthma in Australia cost $30 billion. Medication costs alone related to allergic rhinitis (a condition linked with asthma) is itself estimated to cost Australia $226.8 million in 2010. Currently 11.2 per cent of Australians have asthma and 18 per cent have allergic rhinitis, with a forecast 70 per cent increase in allergic disease in Australia by 2050.
People living in regional and rural Australia highlighted their additional travel costs and loss of productivity in addition to the direct financial burden of allergies:
As our family lives in a rural area in NSW we have found that access to food allergy services are lacking. We have to travel three hours one way to receive services in relation to diagnosis, testing, management and treatment of food allergy for our daughter. This has a significant cost factor involved as it requires loss of work days, travel expenses and accommodation costs.
Pharmaceutical Benefits Scheme (PBS) and accessibility
The treatments for multiple allergies and non-food allergies can be expensive. The Committee received evidence that believed these high costs could be alleviated by adding more allergy treatments to the Pharmaceutical Benefits Schedule (PBS).
Professor O’Hehir stated:
…we're really fortunate that there are lots of excellent treatments for patients with allergic diseases, but relatively few of those are accessible on the Pharmaceutical Benefits Scheme, and financial constraints often force patients to choose only what they can afford, which may put them at significant risk.
ASCIA commented that many established, evidence-based treatments for allergic disease are registered with the Therapeutic Goods Authority (TGA), but are not listed on the PBS. Improving access to these treatments can improve the course of a person’s disease and greatly improve quality of life. Many new treatments are emerging in this field and expert representation is needed for their evaluation.
Professor O’Hehir suggested that expanding the availability of some allergy medications on the PBS would lead to improvements in health and would have long term economic benefits:
New biologics have the potential to offer excellent treatment for patients with disabling allergic conditions—such as eosinophilic oesophagitis, chronic sinusitis with nasal polyps, systemic mastocytosis, severe allergic eczema—and yet none of these is available to us at present on the Pharmaceutical Benefits Scheme, unlike the biologics that are available for qualifying patients with asthma and chronic hives. Expanding availability would not only improve health but also lead to educational and economic benefits. I do recognise the constraints on the Pharmaceutical Benefits Scheme, but with some health and economic evaluation I think there are opportunities there.
The Western Australia Child and Adolescent Health Service commented that the costs associated with accessing certain treatment can also restrict access. Patients within the public system may receive subsidised treatment options, however access is limited and there are long waiting lists. It called for some allergy related medications to be listed on the PBS:
We would support Pharmaceutical Benefits Scheme listing of immunotherapy for aeroallergens and allergy related medications (e.g. antihistamines, asthma preventers, nasal sprays, dupilumab).
A&AA highlighted the high financial cost of treatments for allergies:
Many disease states require multiple medications and daily treatments for optimal management, the financial cost of which is significant. The majority of medications for allergic disease are not PBS-listed and immunotherapy for environmental allergens such as house dust mite and pollens, which can cause severe allergic asthma, allergic rhinitis and eczema, are not within reach for many people, as they are too expensive.
Dr Melanie Wong, from the Children’s Hospital Westmead, Sydney, raised the issue of high cost of treatment and the lack of access to newer therapies:
Even old treatments such as antihistamines, nasal steroids and immunotherapy—none of them are covered under PBS. So, again, low-income families who might otherwise be subsidised for payment of medications suffer. They may not be able to afford these medications, so that's an issue. Moving on to the newer therapies, there are great therapies such as dupilumab—which is a good treatment for kids with severe eczema and asthma, and is recognised around the world as something that should be used as treatment—that we do not have access to in Australia. That needs to change.
Theories on what causes allergies
Research suggests that food allergy arises from a complex combination of genes and environmental factors that affect the normal maturation and development of the immune system.
The Committee asked many of the expert witnesses what they thought might be causing the increasing rate of allergies and anaphylaxis. Some of the hypothesis were put to the Committee with the proviso that a lot more research was needed in order to understand possible causes. Overwhelmingly, the Committee heard that the links to allergies were multifactorial.
Dr Rachel Peters from CFAR commented that the risk factors for food allergy include having eczema. There are studies underway looking at whether, if skin barrier function can be improved and eczema can be prevented in infancy, there would be a follow-on effect in preventing food allergy.
Professor Connie Katelaris of Campbelltown Hospital explained:
If you have a child with early onset eczema, we know that an emollient treatment to repair the skin barrier is essential to stop the ingress of allergens and the secondary setting up of allergic responses to those allergens.
Dr Mark Hew of Alfred Hospital in Melbourne discussed the gene and environmental interaction that has been observed in relation to allergies:
There is a gene-environmental interaction that is identified in the work on asthma and also mirrored by the work in food allergy. Twenty-five per cent of Melbourne is Indian or Asian in origin. Forty per cent of Emergency Department presentations for thunderstorm asthma were Indian and Asian. So there was a markedly higher proportion of Indians and Asians for thunderstorm asthma. Of the patients who came to emergency, there were people who were sent home with milder disease and people who were admitted with more severe disease. The ones who were admitted were more likely to be second-generation Asian.
So we think there is not just an environmental problem but a combination between genetics and environment interacting explaining part of the increase in allergy rates in Australia and mirrored by the food story as well.
This theory is also called the ‘Asian migration hypothesis’. Dr Peters from CFAR commented:
We've shown in several different studies coming out of Melbourne that infants who live in Australia but have parents who were born in Asia have a higher risk of food allergy. Children who were born in Asia and subsequently moved to Australia have the lowest prevalence of food allergy. This finding has recently been replicated in the US as well, so they are seeing the same associations between migration from Asia to America that we are seeing in Australia.
At this stage there is a loose hypothesis referred to as the ‘Five D theory’, about why severe allergies and anaphylaxis might be occurring. Dr Peters continued:
We sometimes refer to it as the 'five Ds'. These would be diet, dry skin—dry skin being eczema; diet being timely introduction of allergenic foods—dogs, dirt or dribble, which relate to the external microbial environment, and vitamin D deficiency. These are all the factors that we know are related to the rising epidemic of food allergy.
Professor Katelaris commented that research is pointing to a common factor that there has been a change in Australian diets which has changed the gut microbiome:
One of the basic ones that we're now coming back to is that there are things that have impacted our gut microbiome. Instead of having a varied and healthy gut microbiome from eating whole foods, grains, fruits and vegetables, we've had a restriction in the variety of foods and a lot of highly processed foods creeping into our diet, and that then has an impact on the development of the gut microbiome.
This probably starts with the mother and fetus interaction and carries through to early infancy. The other things that impact are the increased use of antibiotics, the so-called clean society, living in a very clean environment and the lack of contact between large animals and human beings now.
The prevalence levels of allergies and anaphylaxis are estimated using a range of sources from various national surveys, research studies and hospital admission data from different states and territories. There is no central agency collating data on allergies and anaphylaxis.
The NAS commented on the lack of data for anaphylaxis and food and drug allergy:
The incidence of many allergic diseases in Australia, including anaphylaxis and confirmed severe drug allergy is currently unknown. There are no national mechanisms to alert consumers of potentially lethal allergen contamination in foods in a timely manner. Models for drug allergy registries exist globally.
CFAR suggested that reporting of allergic reactions and anaphylaxis needs to be done in every state and territory. Currently only Victoria collects this data:
We would definitely recommend that an improved registry is commenced in all states of Australia, and we believe that needs to be identifiable data so that we can understand who is getting anaphylaxis. And it needs to encompass not only the emergency department but within the hospital; if they have anaphylaxis, or if they present to any other healthcare professional such as the GP, it needs to be linked on from there. And then we can understand more about who is getting it and what the risk factors are for anaphylaxis. We can use that data to link to other databases to understand more about how to prevent, how to treat and how to predict severe reactions—and potentially who to target for our treatment programs, because we will target those who are at high risk.
Many witnesses and submissions called for a national register for anaphylaxis. A national register would assist with research being undertaken to find out what might be causing the increasing rates of anaphylaxis in Australia.
A&AA supported the need for a national register to capture anaphylaxis data:
There is much that we can learn from a register that captures anaphylaxis events and fatalities. Deaths from anaphylaxis or suspected anaphylaxis need to be reported to the state coroner. The small number of coronial investigations and inquests have assisted A&AA, ASCIA (and therefore the NAS) in better supporting, informing, educating and guiding individuals, families, schools, camp facilities, food service establishments, sporting clubs and institutions, such as hospitals, in improving care and safety.
In the past 12 months, Western Australia (WA) has documented its first two paediatric food allergy anaphylaxis fatalities. The Government of WA’s Child and Adolescent Health Service commented:
We are not aware of previous recorded paediatric fatalities in WA but as there is no anaphylaxis register, we cannot confirm this.
The Royal Hobart Hospital commented that Australia needs to ‘support design, development and implementation of a nationwide allergy information system to improve data collection and patient alert notifications.’
The Australian and New Zealand Anaesthetic Allergy Group (ANZAAG) stated that the development and maintenance of a perioperative anaphylaxis database would provide essential information to help answer the following questions to help optimise patient care. It suggested that an anaphylaxis database would be useful in collecting data on the following questions:
What is the incidence of perioperative anaphylaxis in Australia and New Zealand?
Which agents (drugs, antiseptics, surgical materials) are the common causes of perioperative anaphylaxis associated with surgery in Australia and New Zealand?
Are particular agents associated with more profound anaphylaxis or death?
Are there measures that could reduce the rate of intraoperative anaphylaxis such as the restriction of sale of pholcodine?
Which treatments are most effective for the acute management of perioperative anaphylaxis?
What is the most effective way to identify the cause of an episode of perioperative anaphylaxis?
The NAS suggested that the Australian Government develop and implement an anaphylaxis register/notification scheme in every jurisdiction. NAS stated this register should:
capture fatalities and near misses as a result of anaphylaxis;
enable the swift removal of foods with incorrect allergen labelling from the market place;
allow prompt investigation of food premises with unsafe food allergen management practices; and
allow for pooled de-identified national data.
The Committee is concerned to learn that Australia’s already high rates of food allergies and anaphylaxis are continuing to rise and that without an understanding of what is causing this, the numbers will continue to increase. The inquiry brought to the Committee’s attention the social and economic burden that allergies and anaphylaxis are having on individuals and families.
The Committee notes the strain on the health care sector in terms of long waiting lists to access allergy specialists, the high financial cost of allergies to individuals, families and the economy and the enormous impact that allergies have on people’s quality of life and mental health, especially for those living with severe allergy such as eczema and anaphylaxis.
The Committee acknowledges the high financial costs for people living with one or more allergies. The Committee is concerned that allergies are costing thousands of dollars each year for multiple medical appointments, scripts, skin barrier creams, inhalers and specific non-allergen foods. In addition, the Committee notes the common occurrence of loss of income due to the need for many parents to oversee their child’s allergy management and safety. The Committee believes the Australian Government should consider the best way to provide financial assistance to people and families living with allergies, with consideration given to providing carers with a carers allowance or assessing the eligibility for a healthcare card.
It is evident that significant health and economic gains can be made by improving research into the prevention, diagnosis, treatment and management of allergies. However the first step is to ensure that Australia has a robust national data collection for anaphylaxis, to better understand the extent of the issue.
The Committee is concerned that deaths and near misses continue to occur due to the mismanagement of anaphylaxis. Data collection is clearly an issue that needs to be addressed immediately if Australia is to continue to conduct meaningful research into allergies and anaphylaxis. The lack of a national data collection for the presentation of, near misses and deaths from anaphylaxis should be addressed immediately.
The Committee believes that the Australian Government should consider the expansion of the Centre for Allergy and Research (CFAR) to establish a National Centre for Allergy and Anaphylaxis. The National Allergy Strategy (NAS) and the Australasian Society of Clinical Immunology and Allergy (ASCIA) would be able to assist the Australian Government for advice in establishing the national centre.
The National Centre for Allergy and Anaphylaxis would ensure there was a national standardised approach to allergy management by developing and implementing a Shared Care Model and a Clinical Care Standard for anaphylaxis. This clinic would be funded to carry out clinical research trials into food allergy treatments in addition to research to find a cure for severe allergies and anaphylaxis.
Consideration should be given to expanding the current work being undertaken by the Centre for Food and Allergy Research. Establishing a National Centre for Allergy and Anaphylaxis would require ongoing funding from the Australian Government.
The collation of data for anaphylaxis episodes and deaths should be provided to the national centre. This would require cooperation from all hospitals including data input and shared data from coroner’s findings from all states and territories.
The collection of data for drug allergies including perioperative allergy in Australia would also require funding and cooperation from all hospitals in all states and territories. The benefits would greatly outweigh the costs in the long term.
The Committee was impressed to hear of the excellent research that has been undertaken on ticks, in particular, the research carried out by Professor van Nunen and colleagues on Mammalian Meat Allergy (MMA). The Committee considers it a priority for further funding to be allocated for research into tick allergy, anaphylaxis and cross sensitivity.
The Committee recommends that the Australian Government work with the states and territories to establish a National Centre for Allergies and Anaphylaxis in Australia, to ensure there is a national standardised approach to allergy management.
The Committee recommends that the Australian Government dedicate additional funding into food allergies and anaphylaxis research, in particular funding for:
the Centre for Food and Allergy Research (CFAR) so it can continue its work past 2022 (if Recommendation 1 has not been implemented by expanding CFAR to become a National Centre for Allergies and Anaphylaxis);
clinical research into food allergy treatments (including allergies outside of peanut allergy) in particular into food based oral immunotherapy, including head-to-head trials (trials with no placebo);
research into emerging allergic diseases such as eosinophilic oesophagitis and food protein-induced enterocolitis syndrome (FPIES);
research into the social and psychological effects of allergies and anaphylaxis; and
establishing a national register for anaphylactic episodes and death.
The Committee recommends that the Australian Government consider providing a healthcare card to people with severe and chronic allergic conditions and a carers allowance for their carers where appropriate.