NACE appoints Consumer Advisory Group to help tackle one of Australia’s greatest health challenges

Published

Tuesday, September 5, 2023 - 12:00 PM

The National Allergy Centre of Excellence (NACE) has announced its inaugural Consumer Advisory Group (CAG) to help address Australia’s allergy epidemic.

Australia is considered the allergy capital of the world with one in five Australians impacted by allergic disease. The exact cause of Australia’s rise in allergies in recent years is unknown, but local researchers are leading the way in efforts to uncover new ways to prevent, treat and manage these life-threatening diseases.

To help advance allergy research and healthcare, Professor Kirsten Perrett, NACE Director and paediatric allergist and vaccinologist, said partnering with consumers had become a foundational priority.

“Now – more than ever – consumers, community members, clinicians, researchers and organisations must work together to improve the health and wellbeing of Australians living with allergic disease,” she said.

“Our consumers will play a pivotal role in advising on the development of NACE tools and resources to help accelerate allergy research, as well as individual research projects to ensure we are asking the right questions and addressing the issues that matter most to people living with allergies.”

Up to 10 per cent of infants and four per cent of adults have a food allergy, 10 per cent of Australians report having a penicillin allergy, 12 Australians die of bee and wasp sting each year, and almost 20 per cent are affected by allergic rhinitis (hay fever), according to the latest allergy research.

To help reduce the burden of allergic disease and address recommendations from the 2020 Australian Government’s Walking the Allergy Tightrope report, the NACE launched one year ago at the annual ASCIA Conference of Australia’s top allergy researchers and clinicians.

This week, ASCIA 2023 takes place in Sydney where experts will discuss the latest allergy and clinical immunology practices and research findings. CAG Co-chair Kylie Gwynne will meet with the NACE Leadership Group on the eve of the Conference.

Lisa Gamble, CAG Co-chair and a South Australian lawyer, who has respiratory and drug allergies and is undertaking immunotherapy to improve allergic rhinitis symptoms, said this week was an opportunity to strengthen the consumer voice.

“We look forward to these opportunities for the NACE Consumer Advisory Group to help make allergy research more relevant, inclusive and effective in addressing patient needs and improving healthcare outcomes,” she said. “My son and husband also have multiple allergies so our family is impacted daily by these diseases – I have many lived experiences I can share to help inform allergy research.”

Dr Andrew Fong, CAG member and a New South Wales paediatric registrar, also has a lifelong history of severe food allergies, as well as eczema, asthma and allergic rhinitis.

“I have experienced multiple life-threatening anaphylactic reactions and continue to be highly allergic and at risk of anaphylaxis to dairy,” he said. “This Group will have a positive impact on people’s lives because consumers will be more involved in the conception, design and implementation of allergy research from the start.”

Janelle Williams, CAG member and a New South Wales marketing consultant, is allergic to tick bites and was diagnosed with Mammalian Meat Allergy (MMA) in a life-threatening anaphylaxis episode in 2013.

MMA is an allergic disease on the rise globally. However, Australia has the highest proportion of its population affected by MMA and tick anaphylaxis in the world, with an estimated 113 people out of 100,000 developing the allergy.

“I want to help advocate for research that will shed more light on how to keep myself safe to help stop others acquiring insect and other allergies,” the co-founder of tiara.org.au said.

The inaugural NACE Consumer Advisory Group includes:

• Co-chair Kylie Gwynne, NSW, academic, lives with respiratory allergy and a child who has respiratory allergy, mast cell activation syndrome (MCAS) and eosinophilic oesophagitis(EoE)
• Co-chair Lisa Gamble, SA, lawyer and consultant, lives with respiratory and drug allergy and a child who has respiratory and food allergies
• Janelle Williams, NSW, marketing consultant, lives with tick allergy and Mammalian Meat Allergy
• Eleanor Jenkin, VIC, senior policy consultant, lives with a child who has food allergies
• Wendy Lo, WA, school operations offer, lives with respiratory and food allergies and two children who have food allergies
• Dr Andrew Fong, NSW, paediatric registrar, lives with respiratory and food allergies
• Phillippa Hamilton, WA, paramedic and student, lives with a child who has food allergies
• Debbie Sevels, VIC, clinical trials project manager, lives with a child who has food allergies
• Candace Guile, WA, practice manager, lives with two children who have respiratory and food allergies
• Micaela Diaz, QLD, lawyer, lives with respiratory and food allergies

People living with allergies can also share their experiences by joining the NACE Consumer Engagement Register.