Due to the timing of the upcoming 2022 Federal election, the Committee has produced an interim report to outline preliminary findings and recommendations from its inquiry into childhood rheumatic disease, that was initiated in December 2021. It is hoped this report will lead to changes that will improve the lives of many Australian children and their families living with childhood rheumatic diseases as the case for action is pressing and should not wait until the next Parliament has determined whether to complete a final and full report.
Juvenile Idiopathic Arthritis (JIA) is the most common childhood rheumatic diseases and affects 1-2 children per thousand under 16 years of age. Most Australians probably think of arthritis as a disease of the elderly and are unaware that it can affect children too.
Yet inflammatory autoimmune conditions do affect children, targeting their joints, bones, and muscles as well as other organs such as the eyes. The most common is Juvenile Idiopathic Arthritis (JIA), which affects as many Australian children as Type 1 Diabetes. Children with JIA suffer bouts of intense joint pain, sometimes so bad that they cannot walk; they miss long periods of school and can struggle socially; and often develop severe anxiety and depression. Their treatment involves regular traumatic injections into joints, and they are prescribed drugs with serious side effects. Almost half the time the condition continues into adulthood, and one in five patients enter adulthood with disfigurement or a disability.
The impact of these diseases is of course not confined to the children themselves. Parents face heavy emotional and financial strains, and often must give up full time work to care for their child; the child’s siblings may be distressed, confused and sometimes angry. Moreover, since these diseases can cause permanent disability if not properly treated, it has significant social and economic costs affecting individuals and families.
The Committee heard that at present too few Australian children with childhood rheumatic disease are receiving the care they need as a result to two main issues – first, the lack of awareness of the disease including early diagnosis, and second, the shortage of paediatric rheumatologists throughout Australia. This results in children not receiving appropriate treatment in a timely manner that may prolong living with a painful and debilitating disease. There is a chronic shortage of medical staff to treat these diseases, and on a per capita basis Australia has a third as many specialist doctors as the UK, and a quarter as many specialist nurses. Best practice care requires a multidisciplinary team that also includes physiotherapists, psychologists, and other allied health professionals, but we heard that such teams are basically non-existent in Australia.
These problems are compounded in regional and rural areas, where specialist care is confined to a few occasional clinics. The Committee heard of patients from places like Bourke, having to travel days for treatment every few months. In Tasmania and the territories, there is no specialist care at all.
Revolutionary new drugs have become available for these conditions in the past few years, but access is hindered by outdated PBS restrictions and the commercial challenges for drug companies servicing such a small market size in Australia.
This situation is clearly unacceptable, and the Committee’s recommendations aim to start improving it. To improve the care patients receive, we recommend that Commonwealth and State governments provide more funding for specialist staff, particularly for training more paediatric rheumatologists, and establish multidisciplinary teams in children’s hospitals. The Commonwealth should fund outreach clinics for regional and rural children and should provide more support to all families through the NDIS and social security.
To improve access to medicines, we recommend that the Department of Health conduct a review in consultation with relevant parties. A national registry for childhood rheumatic diseases should also be established to facilitate better data collection and research.
To improve awareness, the Committee recommends that increased efforts be made to inform the general public about childhood rheumatic diseases, but especially to educate and provide training for GPs and staff working in schools. The Committee recommends that schools should allow students with rheumatic disease affecting joints in the hands to use laptops to take exams, as handwriting or dictating can cause pain and fatigue.
Finally, to consider these and other issues fully, we urge the Health Committee in the 47th Parliament to resume this inquiry and produce a final report.
Rheumatic diseases have a significant impact on children and their families that has too long been overlooked. We hope that this report is a turning point for them and will be the first step towards giving them the care and support they deserve.
I would like to thank everyone who gave evidence to the Committee, including the medical specialists who took time out of their busy schedules and all the families and child and adult patients who shared their stories. The commitment displayed from medical specialists and the resilience from patients was truly inspiring.
I would also like to thank my fellow Committee members for their work on this inquiry, particularly the Deputy Chair for assisting in ensuring we have a bipartisan interim report. I also thank the always professional secretariat staff of the Committee who have continued their excellent work in the delivery of this interim report.