A Hunter family that travelled to the United States to find a solution to their son's crippling allergies say a parliamentary inquiry into the issue is overdue, but a step in the right direction.
As previously reported in the Newcastle Herald, Liesel Allen flew with her severely allergic son Isaac to Utah last year to try a potential new treatment called oral immunotherapy (OIT), which is not yet available in Australia. It involves planned and managed incremental exposure to an allergen under controlled clinical conditions, using either allergenic food or a solution that includes the food.
The Allens had avoided Isaac's allergens - tree nuts, eggs and cow's milk - but at just six he had been hospitalised six times with life threatening and anaphylactic reactions. "It's not as simple as 'Have an EpiPen'," Mrs Allen said. "It might buy you four minutes until the ambulance comes but it is not a cure - there is no cure. It can work, it may not work. There are cases where people need three or six EpiPens."
The House of Representatives Standing Committee on Health, Aged Care and Sport commenced an inquiry last month into allergies and anaphylaxis in Australia and is welcoming submissions to October 24. Committee chair Trent Zimmerman said more than four million Australians were affected by allergies.
"Some will experience a life threatening allergic reaction known as anaphylaxis," he said. "Over the last 20 years hospital admissions for anaphylaxis has increased five-fold and has a major impact for so many families, schools and child care centres.
"Severe allergies can be life threatening and this will be an important opportunity for the Parliament to shine a light on how we can better support those at risk.
"The committee will be taking a broad look into the potential and known causes of allergies and anaphylaxis, food and drug allergy management, access and cost of services, as well as treatment and support services."
The inquiry will also investigate developments in research and prevention; the impact of unnecessary drug avoidance due to unconfirmed drug allergies, as well as unscientific diagnosis and treatments being used by some consumers.
"I want the inquiry to realise the genuine need," Mrs Allen said, "and that people are suffering and want change".
Meanwhile a petition before the House of Representatives that has been signed by more than 6600 people calls for the Minister for Health to "facilitate all necessary policy initiatives, legislation and administrative action required to establish an Australian trial of food immunotherapy".
"Trials of food immunotherapy are not commercially funded as the treatment does not utilise pharmaceuticals," the petition said. It closes October 16. Mrs Allen said families were desperate for results and shouldn't have to fly overseas for food immunotherapy, although those that did have the time and money to do so had no regrets.
"We're proving it works," she said. "The evidence is there and the mood is shifting. People are going to their specialists and saying 'Why can't we do this?'" She said even doctors who had previously opposed OIT now wanted to know more.
The Australasian Society of Clinical Immunology and Allergy continues to recommend avoidance of allergens. "It is important that people with food allergy and their families are aware that OIT methods are not currently standardised or approved for routine treatment of food allergy globally [including the USA]," it said.
"Currently there are several clinical trials of [pharmaceutical-based] OIT and other treatments for food allergy underway in Australia and other countries. Until these trials are completed, with methods, safety and effectiveness determined, ASCIA recommends that OIT for food allergy should not be performed outside of clinical trials." Mrs Allen said these trials weren't always open to those with multiple allergens, who were most at risk. "Plus if you're in a trial for a pharmaceutical you're potentially on that for the rest of your life, versus me buying a bag of cashews."
Mrs Allen said OIT had been "absolutely life-changing," for Isaac. "We were on high alert, anxious and worried all the time. I feel sorry for the old me - we should not have had to live like that when there are other options available, it's cruel."
Isaac now has doses of his allergens every morning and eats largely what he wants. For the first time, he can travel to friends' houses for play dates, stay overnight with relatives and eat out. "Now he can be a normal kid."
Dr Douglas Jones, who guided Isaac through OIT in Utah, and Mrs Allen, will speak at the October 19 Elite Food Allergy Seminar on the Gold Coast.
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