Governor-General joins fight against juvenile arthritis, spotlighting urgent need for early diagnosis

Her Excellency the Honourable Ms Sam Mostyn AC, Governor-General of Australia, is stepping forward to shine a much-needed spotlight on an often-overlooked childhood disease. As Patron of the Juvenile Arthritis Foundation Australia (JAFA), she is taking action to raise awareness during this year’s Juvenile Arthritis Week (16-23 March), hosting families affected by the condition at Government House in Canberra.

“As Patron, I stand alongside these brave and resilient children and their families. I look forward to supporting JAFA as they raise greater awareness to support earlier diagnosis to achieve better outcomes,” said the Governor-General, reinforcing her commitment to tackling this challenge head-on.

Despite affecting an estimated 30,000 children and young adults under the age of 24 in Australia, juvenile arthritis (JA) remains an under-recognised condition. The pain and restrictions it imposes on everyday activities often lead to social isolation and educational setbacks, all while slipping under the radar even for healthcare professionals. Tragically, many children are diagnosed too late, by which time they have already suffered permanent joint and eye damage.

The first oral Janus kinase (JAK) inhibitor, Pfizer’s Xeljanz (tofacitinib), was listed on the Pharmaceutical Benefits Scheme (PBS) in December 2023 for children with juvenile idiopathic arthritis who have responded inadequately to traditional therapy with disease-modifying antirheumatic drugs (DMARDs).

Alice Hill, mother of seven-year-old Charlie Walter, who was diagnosed with JA at just four years old, shared her family’s frustrating journey.

“The road to diagnosis for Charlie was painfully slow. Our experience highlights the desperate need for more funding to train healthcare professionals in recognising the signs and to provide more rheumatology teams to deliver the specialised care that children with this condition deserve.

“For Charlie, diagnosis was the beginning of a significant improvement in quality of life, for him and the rest of the family. There are still many ups and downs, but we are reassured knowing that he is now receiving specialist care,” she explained.

Dr Jeff Chaitow, paediatric rheumatologist and Chair of JAFA’s Medical and Scientific Panel, explained the urgency of early intervention, saying “The first reason is that it does not prolong the pain and suffering of the child with undiagnosed disease. The second is that with the major advances in treatment, early diagnosis and treatment minimises potential long-term damage to the joints and has an improved long-term outcome for the child.”

Federal Health Minister, Mark Butler, revealed the government’s first major investment in juvenile arthritis in a landmark announcement last year. The nationwide program Juvenile Arthritis: Early Diagnosis – Early Intervention Changing Children’s Lives aims to equip general practitioners (GPs) and other healthcare professionals with the knowledge and tools to identify JA sooner, improving diagnosis rates and treatment outcomes.

Professor Ruth Colagiuri AM, founder of JAFA, echoed the critical importance of early action through the federally-funded early diagnosis program to reduce the current diagnosis delay from 10 months to just 10 weeks.

“We must rescue these children, and their distressed parents, from the misdiagnosis merry-go-round and get them onto treatment early to give them the best possible chance at living their best possible lives,” Professor Colagiuri emphasised.

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