Crisis in the Care of Allergic Patients in Australia

NAS advocacy5 April 2019

  • Australia has among the highest allergy rates in the world[i]
  • Life threatening food allergy rates have doubled in ten years[ii]
  • Allergy deaths have increased by 42% over six yearsii
  • Australia has a shortage of allergy specialists and health professionals with allergy expertise, particularly in rural or remote areas
  • Children are being sent home from health facilities inadequately treated after severe allergic reactions (anaphylaxis)
  • In one state alone there have been close to 1000 cases of anaphylaxis since November 2018[iii]

pdfCrisis in the Care of Allergic Patients in Australia154.34 KB

“We are talking about young people dying and going into emergency departments, in most cases due to anaphylaxis that could have been avoided,” claims Associate Professor Richard Loh, a leading children’s allergy specialist.  “And the irony is that allergy specialists, GPs, families and consumers who live with allergy have developed a comprehensive solution. It just needs the political will and commitment from all parties, and at all levels of the health care system, to provide leadership to implement the strategy. We must also have adequate funding or else we will progress slowly or not at all and Australians will continue to be at risk.”

“The National Allergy Strategy was developed using the best available evidence and aligned with the experience of consumers,” says Maria Said, CEO of Allergy & Anaphylaxis Australia and a parent of a young adult with severe allergies who has been advocating for people with allergic disease for more than 25 years.  “Families living with a child or young adult with food allergy, live life being fearful. They don’t trust food labels and they don’t trust the health care system to do the right thing, and that’s just food allergy. There are many thousands of people who are unsure whether they have a drug allergy, who can either be wrongly denied medication or be given it unknowingly.”

“The increased allergy rates amongst children and adults have put an enormous burden on the health care system. Many doctors have not had enough support or allergy training,” says Associate Professor Loh. “This means that allergy specialists like me see young people who should be managed by their GP, and could be, if GPs felt more confident. Others who should see an allergy specialist for severe allergies are left to manage themselves leaving them at even greater risk. Many people in rural and regional areas are travelling unacceptable, costly distances for health care at huge costs to both the family and the health system.”

“With relatively small investments we could take a ‘whole of health’ approach from the ground up, because it needs comprehensive action to avoid delays in accurate diagnosis and best practice treatment,” says Maria Said, who is also a registered nurse. “People can either have unnecessary food restrictions or insufficient restrictions because they are poorly diagnosed.”

“On top of that, patients are put at risk because we do not have standards of care for anaphylaxis in Australia - these need to be developed and implemented. When children have a severe allergic reaction, many don’t receive the right emergency care and are often sent home without self-injectable adrenaline. These people need food to sustain their life but without appropriate care and ongoing management it could be food that actually kills them. It is not a lifestyle choice,” continued Ms Said.

“The National Allergy Strategy calls for a top to bottom approach,” says Associate Professor Loh.  “That includes a system such as an anaphylaxis register or notification scheme, which collects better data on things such as unsafe foods which don’t have accurate ingredient labels. It also includes training of health professionals and food service providers so that more people can receive quality care, better training in the food service industry, better access to emerging treatments for food allergies, immunotherapy for insect sting allergy, better diagnosis of drug allergies, and much more.”

“While there is no cure for food allergy, continued funding to help prevent allergies is critical, such as implementing infant feeding guidelines,” continued Associate Professor Loh.

“All political parties have publicly endorsed their commitment to the strategy, but serious funding is required to do what needs to be done. An investment of just $20 million would go a long way to getting some of this off the ground,” says Maria Said.

“That’s less than the cost of some of the cancer medications that have been approved in recent years. We applaud those approvals and hope that political parties also provide funding to prevent the development of allergic diseases and to improve care of those with allergic diseases.  Allergic disease is one of the fastest growing chronic diseases in Australia and must not be the poor cousin. The impact on quality of life is greater than that of diabetes or rheumatoid arthritis,” finished Ms Said.  

Read more: Crisis in the Care of Allergic Patients in Australia

First youth camp by National Allergy Strategy to support teens and young adults with food allergies

16 January 2019

  • Teens and young adults with food allergy are at highest risk of fatal anaphylaxis1
  • National Allergy Strategy conducts first youth allergy camp

 “Australia leads the world when it comes to the number of people with food allergy, with 10% of infants and 5% of 10-14 year olds affected,” explains Associate Professor Richard Loh, Co-chair of the National Allergy Strategy and past President of the Australasian Society of Clinical Immunology and Allergy (ASCIA). ”While food allergies are often seen as a condition of early childhood, research shows that not as many children are outgrowing their food allergy until their teens or young adult years and many children have an allergy to foods such as peanut, tree nuts, sesame, fish and shellfish for life.”

School and youth camps provide a great opportunity for young people to get away with friends and try new things. For young people with food allergy and their parents, camps can be a stressful experience as they rely on the knowledge of others to manage their food allergy and respond in an unlikely emergency.

“Some teens and their families choose not to go on camps as they are worried about how their food allergy will be managed, but young people need to feel confident about being away from home. Like anyone else, they need to engage and enjoy the experiences provided by camps with their friends”, explains Maria Said, Co-chair of the National Allergy Strategy and CEO of Allergy & Anaphylaxis Australia.

The youth camp is the first camp to be conducted specifically for teens and young adults living with food allergy, with 30 young people from across Australia participating in the camp as part of the National Allergy Strategy’s 250K Youth Project funded by the Australian Government Department of Health.

“In Australia and internationally, camps have been used to assist teens with managing their chronic health condition, but this is the first camp to be held in Australia specifically for young people living with food allergy”, explains A/Prof Richard Loh. 

“The aim of the camp is to bring teens and young adults with food allergy together to share their experiences and reduce social isolation and allow them to develop autonomy in managing their condition”, stated Maria.

“Health related camps provide an opportunity to have fun whilst still learning about managing their health condition.  Camp participants can develop a sense of community, free of judgement without feeling like they are being singled out.  The camp can also help them to learn how others deal with managing their health condition and provide positive experiences about navigating unfamiliar social situations”, commented Maria. “These camps also provide an opportunity for us to learn from young people so that we can engage more effectively with young people who live with potentially life threatening allergies,” added Maria.

Pete Griffiths, CEO of the Australian Camps Association said, "The Australian Camps Association works closely with the National Allergy Strategy to help ensure that people with food and insect allergies can enjoy the many wonderful benefits of the camp experience.  All residential camps need to be fully aware of what's required to safely host all people impacted by food and insect allergies and the ACA is delighted to be working with A & AA to co-deliver specific training and workshops in this area for the camps sector.  We fully support this camp for young people and congratulate National Allergy Strategy on this initiative."

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pdfMR: First youth camp by NAS to support teens and young adults with food allergies245.46 KB

Read more: First youth camp by National Allergy Strategy to support teens and young adults with food allergies

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National Allergy Strategy Rationale

Allergic diseases have become an increasingly important chronic disease and public health issue 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.

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Funded by the governments of Australia

Lead organisations

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Australasian Society of Clinical Immunology and Allergy (ASCIA) is the leading medical organisation for allergy in Australia. 

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Allergy & Anaphylaxis Australia (A&AA) is the leading patient support organisation for allergy in Australia. 

The National Allergy Strategy has received funding from the Australian Government Department of Health for the following projects:
Food allergy prevention | 250K Youth Project | Food service | Drug allergy | Shared Care Model

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