Thirteen children and teenagers living with juvenile arthritis have travelled from around Australia to spend an afternoon with Anthony Albanese.
The Prime Minister and his partner Jodie Haydon welcomed the children, their families and representatives from the Juvenile Arthritis Foundation of Australia at The Lodge in Canberra on Friday.
The group was the first to have an afternoon tea at the prime minister’s official residence since the change of government in May.
Mr Albanese and Ms Haydon listened to stories about how children are living with daily pain, struggling to keep up at school and having difficulty accessing the medical care they need.
As well as having afternoon tea, Mr Albanese played a game of rugby league with some of the children.
There was excitement among the younger guests at meeting the prime minister’s dog, with one child bringing a tiny shirt as a gift for Toto.
Juvenile arthritis is a serious, incurable and potentially debilitating auto-immune disease which can result in joint deformities and loss of vision if it isn’t diagnosed and treated early.
It affects 6,000 children in Australia, making it one of the nation’s most common chronic childhood diseases.
But a dire shortage of specialist services means many families must travel long distances to attend appointments to get the help they need.
Such is the case for baby Willah, who was Mr Albanese’s youngest guest at just 18 months old.
Willah and her parents live in regional Victoria, meaning they have to make frequent and expensive trips to Melbourne to access specialist care, including monthly blood tests and regular eye checks.
Queensland teenager Addison Sharp also met with Mr Albanese on Friday.
Miss Sharp, 16, has already had multiple surgeries, including a knee replacement and an operation on her jaw.
Her mother said it took the family four years to get a diagnosis after she first starting developing symptoms of the disease.
Miss Sharp wants to become a paediatric rheumatologist to help other children living with the disease, but her own illness means she has to deal with constant pain and has been forced to miss out on a lot of school.
Labor MP and veteran paediatrician Mike Freelander also spoke to the children at The Lodge.
JAFA’s founder, Ruth Colagiuri, said it was time to bring resources for juvenile arthritis up to the same level as other similarly serious and prevalent childhood conditions.
“A diagnosis of juvenile arthritis can occur as early as 12 months of age and can mean a lifetime of pain and disability,” Associate Professor Colagiuri said.
“Much of this burden could be avoided by earlier diagnosis and referral to specialist paediatric rheumatology services.”
JAFA chair Andrew Harrison said Friday’s event would help put juvenile arthritis on the map, adding the condition was still “virtually unrecognised” in Australia despite affecting so many families.
A federal parliamentary inquiry into childhood rheumatic diseases earlier this year made 15 recommendations including tripling the paediatric rheumatology workforce by 2030.