Thirteen children and teenagers living with juvenile arthritis traveled from Australia to spend the day with Anthony Albanese.
The Prime Minister and his partner Jody Haydon welcomed the children, their families and representatives of the Juvenile Arthritis Foundation of Australia to The Lodge in Canberra on Friday.
The group was the first to drink afternoon tea at the prime minister’s official residence since the change of government in May.
Mr. Albanese and Ms. Haydon listened to stories of children living with daily pain, struggling to keep up in school and having difficulty accessing the health care they need.
In addition to afternoon tea, Mr. Albanese played rugby league with some of the children.
The younger guests were delighted to meet the prime minister’s dog: one child brought a tiny shirt as a gift to Toto.
Juvenile arthritis is a serious, incurable, and potentially debilitating autoimmune disease that can lead to joint deformity and vision loss if not diagnosed and treated early.
It affects 6,000 children in Australia, making it one of the most common chronic childhood diseases in the country.
But a severe shortage of specialist services means that many families have to travel long distances to see a doctor to get the care they need.
Such is the case with baby Willa, who was Mr. Albanese’s youngest guest when she was only 18 months old.
Willa and her parents live in Victoria, which means they have to make frequent and expensive trips to Melbourne to access specialist care, including monthly blood tests and regular eye exams.
Queensland teenager Addison Sharp also met with Mr Albanese on Friday.
Miss Sharp, 16, has already undergone several surgeries, including a knee replacement and jaw surgery.
Her mother said it took the family four years to make a diagnosis after she first developed symptoms of the disease.
Ms. Sharp wants to become a pediatric rheumatologist to help other children living with the condition, but her own illness means she has to deal with constant pain and miss most of school.
Labor MP and veteran pediatrician Mike Freelander also spoke to children at The Lodge.
JAFA founder Ruth Colagiuri said it’s time to bring resources to treat juvenile arthritis to the same level as other equally serious and common childhood diseases.
“A diagnosis of juvenile arthritis can be made as early as 12 months of age and can mean lifelong pain and disability,” Associate Professor Kolagiuri said.
“Much of this burden could have been avoided by earlier diagnosis and referral to specialized pediatric rheumatology services.”
JAFA Chairman Andrew Harrison said Friday’s event would help bring attention to juvenile arthritis, adding that the condition is still “virtually unrecognized” in Australia despite it affecting so many families.
A federal parliamentary inquiry into childhood rheumatic diseases earlier this year made 15 recommendations, including tripling the staff of pediatric rheumatologists by 2030.
Originally published as PM Hosts Afternoon Tea at The Lodge with Children Living with Juvenile Arthritis