Carol Brown (Tasmania, Australian Labor Party, Shadow Parliamentary Secretary for Families and Payments) Share this | Link to this | Hansard source

I rise to speak about Arthritis Awareness Week, which started on Sunday. The theme of arthritis week is 'Kids get arthritis too'. Most people think that arthritis is a condition that only affects older people, but kids arthritis is as common as childhood diabetes. Juvenile idiopathic arthritis, JIA, is a painful autoimmune form of arthritis that affects around 6,000 Australian children. These often children face long delays in diagnosis and there is a serious shortage of treatment and support services available to them. Often the pains these children suffer are dismissed as growing pains.

Yesterday, I was privileged to listen to a panel led by the 2013 Australian of the Year and emeritus director of Arthritis Australia Ita Buttrose AO, OBE, at a special Parliamentary Friends of Arthritis function, where children and families living with juvenile arthritis shared their stories. Their stories of constant pain and suffering was a real eye-opener.

Ben Hogan was diagnosed at two years of age—that was 42 years ago. When he was four years old, doctors told his mother he would not live past 10. Despite spending many years in a wheelchair, Ben has proven the doctor is wrong—he is married, he has two children and a job in the health sector that he loves. He gave a wonderfully insightful and determined story on his journey.

Twenty-one-year-old Annie Grynwood was diagnosed when she was eight years old. In her own words, she went from being a happy, active and normal child to a very sick little girl, spending weeks in hospital and three years in a wheelchair. Annie says she missed 70 per cent of school and found it hard making friends and adolescence was tough. She dealt with depression from the chronic pain and loss of mobility.

Bright-eyed six-year-old Rowan Milne was diagnosed with juvenile arthritis when he was two years old. His father Scott said his son had been unwell and in pain since he was born. He would wake up screaming six times a night and had fevers and a rash. When Rowan's parents took him to the doctor they were told he had a virus. But they persevered and after many, many months, they were told it was JIA and his immune system was attacking his joints. Rowan takes pain medication every day, a chemotherapy drug once a week and has injections every four days. His mother Belinda says the medications can make him tired and irritable, and having juvenile arthritis has already had an impact on his schoolwork and also his participation in sport.

Arthritis Australia says these stories are all too common. The national policy manager of Arthritis Australia Franca Marine said: 'We know that the sooner JIA is diagnosed and treated the better. But our research has shown that many children with JIA have their symptoms a long time before they are diagnosed and during that time the joints can be seriously damaged.' To raise awareness of this painful and disabling condition, Arthritis Australia have released a five-point plan to address what they believe needs to be done about childhood arthritis. Arthritis Australia is seeking funding for paediatric rheumatology training in Australia, public paediatric rheumatology services to be expanded, JIA information and educational materials for healthcare professionals to be developed, comprehensive JIA consumer resources to be developed and funding for research into a cure.

One of Australia's very small band of paediatric rheumatologists Associate Professor Davinder Singh-Grewal of the University of Sydney has welcomed the five-point plan. If it is implemented, it will make a big difference in treating kids with arthritis. Professor Singh-Grewal says JIA can look quite different from child to child and it can be hard for GPs to detect it early, and even when it is detected it can be hard to get in to see a specialist to start treatment. He says that most states only have one or two paediatric rheumatologists and in some states there are none, such as in my home state of Tasmania and also the Northern Territory. The professor says it is a tragedy that children wait so long to be seen by a specialist because that there are effective treatments for JIA and the sooner the treatment is started the more likely it is that the condition can be controlled and severe joint damage can be avoided. Research is vitally important to help develop better treatments and hopefully one day to find a cure for juvenile arthritis, which has also been described as an invisible condition. While it may seem an invisible condition, it is all too visible for kids with arthritis and their families. We must do all we can to ease their burden.