The Juvenile Arthritis Foundation of Australia (JAFA) has launched the `Stop Pain & Disability in Kids with Arthritis’ campaign in Parliament House this week to advocate for earlier diagnosis, better care and support services.
JAFA’s message is simple: the right services in the right place; the right drugs at the right time and research for better treatments, prevention and cure. However, the fight to get there is not.
Paediatric rheumatologists say delays in diagnosis and treatment of the common autoimmune disease Juvenile Arthritis (JA) is propelling Australian children into avoidable disability and even blindness. What’s more, recent research indicates that Australia lags well behind international standards of care for these children.
The research was led by paediatric rheumatologist and Chair of the Australian Paediatric Rheumatology Group, Professor Davinder Singh-Grewal who says “despite being one of the most common chronic childhood diseases, for some children with juvenile arthritis, it can take six to 12 months or more from the onset of symptoms to diagnosis. Sadly, I’ve seen many children with permanent joint deformities, and loss of vision caused by inflammatory eye disease by the time they were referred to me.”
The reality for those affected
According to JAFA, not only are there unacceptable delays in diagnosis but access to treatment is limited. There are fewer than half of the required paediatric rheumatologists throughout Australia, a lack of nurses and allied health professionals, and no specialist paediatric rheumatology services in Tasmania, the Northern Territory and ACT. Outreach services are scarce with some families traveling hundreds of kilometres for their child’s care.
“We drive six hours each way to the city at least every three months for check-ups. We’re lucky to have family there we can stay with but there is a financial and emotional burden attached to these trips,” says Roz Everson whose 11-year old daughter lives with JA.
JA affects an estimated 6,000 children in Australia with 80% of these children experiencing pain on a daily basis and therefor accounting for lost educational opportunities and limited participation in social and physical activities. Further, says Melbourne paediatric rheumatologist Associate Professor Jane Munro, “in 50% of affected children, the pain and the arthritis continue into adulthood accounting for thousands of young adults having a disability.”
Progression to disability can be largely avoided through early diagnosis and prompt treatment with approved medications and multi-disciplinary care. But, when their nine-year-old granddaughter was diagnosed, Ruth and Stephen Colagiuri – respectively Professors of Public Health and Medicine at the University of Sydney – say they were “astounded by the lack of services and support for children and families” prompting them to establish the Juvenile Arthritis Foundation of Australia.
Taking their campaign to MPs in Parliament House Canberra this week, JAFA outlined the issues confronting families at an event hosted by co-chairs of the Parliamentary Friends of Child and Adolescent Health Dr Mike Freelander MP and Dr Katie Allen MP.
“Dr Freelander and Dr Allen are kindly leading the launch of this campaign and we thank them most sincerely for devoting their time and expert knowledge to helping our kids,” says Associate Professor Ruth Colagiuri.
