Ashley has anaphylaxis – a severe allergic reaction to a range of common foods – and eosinophilic esophagitis, a chronic, allergic inflammatory disease of the oesophagus, which is also triggered by food allergens.
She is among 4 million Australians with a chronic allergy.
Despite missing large chunks of her schooling due to illness, the Sydney teen managed to complete the higher school certificate and is studying psychology at university.
To avoid a life-threatening allergic reaction caused by one of the conditions, she must not consume dairy, eggs, peanuts, tree nuts, wheat, corn, barley, shellfish or sesame, and uses a mixture of prescription medications – not all of them covered by the Pharmaceutical Benefits Scheme – and over-the-counter treatments to keep her symptoms at bay.
Allergy and Anaphylaxis Australia chief executive Maria Said said for the many families with more than one child suffering an allergic disease, the costs were “astronomical” – and called on the government to “expedite” the listing of key medicines on the PBS.
A major cost burden for the Wongs is in the steroid medication Ashley takes for her eosinophilic esophagitis, Pulmicort, which helps control the inflammation in her throat and costs $50 for every two weeks because it is only available on the PBS for asthma.
The cost of buying the drug does not count towards the family’s Medicare safety net threshold, which only applies to PBS medications.
The Wongs also have multiple EpiPens on hand – two at a time covered by the PBS costing $6 each, as Ashley has a healthcare card, plus $80 for an extra EpiPen not covered by the PBS, of which they claim half back from their private health insurer.
Mrs Wong said families with allergies had to invest in more expensive household products and furnishings – including HEPA (high-efficiency particulate air) vacuum cleaners, leather coaches, expensive dust covers and polished floorboards.
“Ashley can’t put her clothes outside to dry on the washing line because they could get allergens on them,” she said.
Allergist Connie Katalaris, a professor of immunology at the University of Western Sydney, said allergy sufferers “need some assistance” with meeting the high cost of treatment, suggesting a special scheme be enacted, potentially through the Department of Human Services.
Professor Katalaris said Dupilumab, an expensive steroid cream effective in treating the worst cases of atopic dermatitis – a red and itchy skin condition – should be prioritised for PBS listing. Currently, patients are only able to access the cream on compassionate grounds as it costs $16,000 a month.
The allergist, who was appointed to the Order of Australia this year for her contribution to allergy and clinical immunology, said it was not clear why Australia had such high levels of allergic disease, but that processed food consumption and high caesarean birth rates were possible contributors.
A spokesman for Health Minister Greg Hunt, who spearheaded the anaphylaxis inquiry, said the Morrison government “acknowledges the significant effect of allergy and anaphylaxis on the quality of life and overall health of individuals and their families and is committed to addressing [their] impact”.
The spokesman said “a range of medicines” were available on the PBS to treat and manage anaphylaxis, along with “medicinal foods … to assist with the management of eosinophilic esophagitis”, and that further listings would be made “as a matter of priority” if recommended by the Pharmaceutical Benefits Advisory Committee.
The government has provided more than $2 million to the Australasian Society for Clinical Immunology and Allergy to implement a national allergy strategy since 2016, with a further $2.2 million to be provided by June 2023.
Dana is health and industrial relations reporter for The Sydney Morning Herald and The Age.