Juvenile Arthritis

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29 November 2021

I rise to support the motion moved by my friend and colleague the member for Macarthur. Dr Freelander has had a long and distinguished career as a paediatrician and is passionate about quality health care for all Australians, especially children and young people. I commend him for bringing this motion to the parliament.

As Dr Freelander has said, juvenile arthritis is serious, incurable and debilitating, and it affects between 6,000 and 10,000 young children and adolescents across Australia. While juvenile arthritis is relatively common, about as prevalent as childhood diabetes or epilepsy, it does not receive the same level of attention. This motion aims to help change that, and to raise the profile and prominence of juvenile arthritis in the wider community and, importantly, with decision-makers and funders.

As the motion states, juvenile arthritis can have a profound impact: one in five children with juvenile arthritis will develop inflammation of the eyes, which can permanently impair sight and cause blindness. Eighty per cent of children with juvenile arthritis live with pain each day, impacting their learning, their play and their mental health. There are 30,000 adults in Australia today whose arthritis started in childhood, and one in three of these people will have a severe disability.

As the member for Macarthur mentioned, there is a shortfall of specialist services available to Australian children living with juvenile arthritis, and, as is all too common, this shortfall is even more acute outside of the big cities. A grandparent in the electorate I represent on the Central Coast of New South Wales wrote to me about his granddaughter. He said, 'Our granddaughter suffers from ankylosing spondylitis, a form of arthritis that has a very significant inheritable causative factor.' He goes on to say: 'I myself have suffered a lifelong severe disability, with symptoms commencing in the 1950s. Much less was known of the disease in those days, and most sufferers went undiagnosed for years, leading to a lifelong disability. Better knowledge and management these days will ameliorate these impediments to a successful life.' He goes on to say: 'Unfortunately, these are sadly lacking in New South Wales. The continual pain and disability resulting from these diseases very seriously impair these lives of the sufferers; moreover, the family burden resulting is also significant. Time is lost, financial burden incurred and family relationships are harmed. Affected children such as our granddaughter need the care of a paediatric rheumatologist, a physiotherapist, trained nurses, pain management and psychological counselling. These services are all lacking in New South Wales.' He finishes by saying, 'Much better care should be available to sufferers of juvenile arthritis.'

As is common with a range of complex conditions, children are waiting far too long for diagnosis, which means that that they are waiting even longer for effective treatment and care. The early years of life are critical to our social, cognitive and emotional development. Children and adolescents with juvenile arthritis unfortunately miss out on a lot because of their condition, whether it's time off from school because of pain or because of treatment, the social impact of having to miss out on activities, or the complexities associated with diagnosis, treatment and support.

These children struggle. As the member for Macarthur said, they battle each day. We owe it to them to give juvenile arthritis the attention that it deserves. Juvenile arthritis must receive proper recognition so that these children can access the services they need close to home and when they need them. But we also need to address the delays families experience in obtaining a diagnosis. Ten months is far too long for a child living in pain each day to wait, and, as a society, we must do better.

We also need to address the shortfall in services to manage this condition. In particular, we need to improve the affordability, accessibility and quality of paediatric rheumatology services across the nation, but especially for young children and families living outside of big cities. Early diagnosis and expert care by specialist multidisciplinary teams can significantly reduce permanent joint and eye damage, stop pain and disability, and improve lives. I also support calls made by the Juvenile Arthritis Foundation Australia—and it was a pleasure to meet with them in Canberra earlier this year—to establish a national registry and research package into juvenile arthritis.

Appropriate recognition and appropriate funding from all levels of government is critical if we are to better understand the disease, better train people working in diagnosis and treatment of the disease, and improve the quality of life for all those who live with it. It will be much better for all Australians, particularly young people, who at the moment are waiting 10 months for diagnosis and waiting even longer for effective treatment. Early diagnosis and early treatment mean that many of these young people might avoid the lifelong disability associated with juvenile arthritis today. So I commend the member for Macarthur for bringing this motion to the House and I support the calls of the Juvenile Arthritis Foundation of Australia for more support.