HOUSE OF REPRESENTATIVES, 29 NOVEMBER 2021
In 2016 I got a call from my friends Macgregor Duncan and Tanya Dmitronow about their one-year-old son, Leo. They told me that he had been diagnosed with juvenile polyarticular arthritis. This meant that he had many severely swollen joints, including his ankles, knees and fingers. Leo was in a lot of pain, and a little boy who had been crawling had now ceased crawling after weeks of testing in hospital. My friends knew that if his arthritis went without proper treatment it would probably mean permanent disability, a life of pain and possibly even blindness.
Soon after he was diagnosed my friends returned to Australia from the United States, where they had been living, and they were struck by the lack of attention to or resources for juvenile arthritis sufferers in Australia compared to the United States. As others have mentioned, juvenile arthritis affects just as many children as does juvenile diabetes, and many times more than have cystic fibrosis, and yet across the nation there are only 22 paediatric rheumatologists, limited community awareness and support, and little research funding.
My friends Mac and Tanya are lucky. They live in a city and they have a great paediatric rheumatologist. Leo's illness is so well dealt with that they tell me he is now the fastest runner and swimmer in his class. But that might not be the case if he lived in a rural or regional area. So we do need to do better for Australian kids with arthritis. I commend the member for Macarthur for bringing this motion forward and the Juvenile Arthritis Foundation Australia for their advocacy on this issue.
In March this year I was really pleased to meet with JAFA's representatives as part of their launch of the national campaign to stop pain and disability in kids with arthritis and to meet with Associate Professor Ruth Colaguiri and other experts on juvenile arthritis. It's a disease which afflicts between 6,000 and 10,000 Australian children and adolescents, 80 per cent of whom experience pain daily. In the ACT, Rebecca Davey of Build a Better Me: Arthritis Pain Support & ME/CFS ACT, told me the stories of two Canberra children who are affected by juvenile arthritis. There is Julia, an eight-year-old who is legally blind from the disease; it affects her eyes and other organs. She travels from Canberra to Sydney every month for injections and drainage from some of her larger joints since there is no paediatric rheumatologist in the ACT; her parents have to take time off work. She does hydrotherapy to assist with pain relief and improve joint mobility, but she can't always get into the pools. The medicine she takes reduces her immune response, which means that her parents are constantly worried about the fear of contracting COVID in school or about a family member bringing it home. She has some NDIS funding, but the interstate trips are also a burden on the family.
And there is Sam, a 13-year-old who attends school in the ACT. His juvenile arthritis took five years to diagnose. He misses up to half of his schooling due to joint swelling and stiffness unless he gets up really early and gets moving in order to allow the stiffness to settle. Sometimes Sam needs to use a wheelchair, sometimes he doesn't need to use a wheelchair, and that in itself generates a stigma because sometimes people in authority question whether he's really sick or disabled, or just ‘seeking attention’—and that only makes it harder. He has regular blood tests, fortnightly injections and regular X-rays and MRIs to try and track his disease. Some days he gets out with his mates, other days he's in bed with incredible pain, and he hates not knowing what the day will bring. That affects his schooling outcomes and his social outcomes, and it may well affect his work and his lifelong earning capacity. There is the concern, as well, that he might pass the disease on to his children, since it is a definite familial trait.
I commend those who are working with children with juvenile arthritis. It does deserve more attention. We need a national registry and a research package to better understand the extent and impact of juvenile arthritis on individuals and on the Australian economy.
Authorised by Paul Erickson, ALP, Canberra.