THE family of young Goulburn boy Hugh Chinnery is relieved the Federal Government has reversed a decision to cut an allowance which helped them manage his rare metabolic condition.
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The government last week reversed its decision to cut the Inborn Errors of Metabolism (IEM) grant.
In May, the Goulburn Post carried a story about Hugh’s condition. He suffers from Glutaric Aciduria Type 1 (GA1).
The condition basically means that if Hugh eats even small amount of protein he risks brain damage due to the rare condition.
His family had been assisted by the grant up until May. It helped them provide and manage a lowprotein diet to cater to Hugh’s special dietary needs.
But back in May, the family was “devastated” when they learnt the government was going to scrap the assistance to sufferers of the condition as part of a swathe of budget cuts to health.
The grant of $256 a month helped the family offset the costs of providing the low-protein diet for Hugh.
On July 31, Federal Health Minister Sussan Ley acknowledged the government did not have all the information required at the time of making the decision to cut the allowance and that they were re-instating it.
Hugh’s mum Alana Chinnery told the Goulburn Post yesterday that she was ecstatic with the decision.
“It is awesome. It is fantastic that the IEM community now has such relief,” Mrs Chinnery said.
“The Health Minister recognises that they did not have all the information when they made the decision to cut the allowance.
“I am very pleased that she (Minister Sussan Ley) took time to meet with sufferers of the condition from around the country and listen to their needs.
“The fact this happened has also raised awareness of the condition, so I am really happy for the IEM community and glad that government reversed the decision.”
She also acknowledged the support from the Goulburn Post and the Metabolic Dietary Disorders Association (MDDA).
In a statement on July 31, Federal Health Minister Sussan Ley said the Government was to continue Inborn Error of Metabolism Programme.
She said the decision had been reversed after meeting with patients, parents, representatives and parliamentary colleagues about the IEM programme.
“These conversations have highlighted the importance of strict low protein products and the costs associated and the work involved in food preparation,” Ms Ley said.
“The initial evidence relied upon by my department, including that of the MDDA’s own dietary handbook, pointed to patients having cheaper supermarket options and having access to a range of new medicines being available on Pharmaceutical Benefits Scheme since the programme’s introduction in 2001.
“The decision to finish the programme on December 31 this year was based on this evidence from my department available at the time. We now have additional evidence.
“Both my office and I have had conversations with patients, parents and their representatives. It has become clear to me that unlike other food-related illnesses or allergies, this condition cannot be managed using food alternatives you can buy in the supermarket.”
“As a result of these discussions, I have decided that those patients on the Inborn Error of Metabolism programme should continue to have access to the government subsidy into the future,” she said.
Ms Ley said her department was now identifying the $11.7 million over the forward estimates to offset the decision to continue this programme.
The MDDA welcomed news saying it ended the uncertainty for hundreds of families across Australia.
“The Minister for Health has confirmed that after completing their consultation and reviewing all the options available, reinstating the IEM Food Grant was the best way to support families with Inborn Errors of Metabolism,” MDDA president Monique Cooper said.
“The MDDA would like to thank every family, individual, organisation and stakeholder who committed their time and energy to raise awareness of the impact of the initial decision through writing letters to MPs, speaking to the media, sharing their stories on social media and signing petitions.”
