Mike Freelander (Macarthur, Australian Labor Party) | Link to this | Hansard source

On behalf of the Standing Committee on Health, Aged Care and Sport, I present the committee's report entitled Inquiry into childhood rheumatic diseases: Interim report, together with the minutes of proceedings.

Report made a parliamentary paper in accordance with standing order 39(e).

by leave—Today I present the report of the Standing Committee on Aged Care, Health and Sport entitled Inquiry into childhood rheumatic diseases: Interim report. Due to the timing of the 2022 federal election the committee has produced an interim report to outline preliminary findings and recommendations from its inquiry into childhood rheumatic disease. It was referred by the Minister for Health and Ageing on 2 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 to determine whether to complete a final and full report.

Juvenile idiopathic arthritis is the most common childhood rheumatic disease and affects one to two children per 1,000 population under 16. Most Australians think of arthritis as a disease of the elderly and are unaware that it can affect children, but in fact it does. And, when it does affect children, the disease process is such that the diagnosis is often delayed, children are often subjected to months or even years of pain before a correct diagnosis is made and it can cause ongoing disability, affecting not only the joints but other body organs as well. Whilst the most common form, juvenile idiopathic arthritis, affects many children, there are other rheumatic diseases that can be life-threatening, such as dermatomyositis or juvenile lupus erythematosus. They're rarer, but they can certainly be life-threatening, and diagnosis is often delayed.

The impacts of these diseases are not just confined to the children; they also impact their families, and the parents often face a heavy emotional and financial strain to deal with chronic, severe childhood disease. Since these diseases can cause permanent disability, if a diagnosis is not made and the best treatment not offered, long-term and lifelong disability can occur, and about 50 per cent of children with juvenile idiopathic arthritis will still have the disorder in adult life. The problems are of course compounded by lack of access to paediatric rheumatologists, of which there is a chronic undersupply in Australia. There's a lack of access to services in outer metropolitan, rural and regional areas, and this is exacerbated by a lack of multidisciplinary teams, which are required to deal with severe arthritis.

New drugs have become available for the treatment of idiopathic rheumatic diseases of childhood, but unfortunately access to these drugs is often limited by slow approval processes and expensive medications. It is hindered also by a lack of understanding and a lack of access to paediatric rheumatologists. The situation is clearly unacceptable. It's more unacceptable in some areas that don't have a paediatric rheumatologist, such as Tasmania, the Northern Territory and remote and regional areas, and many children are left suffering pain, discomfort and long-term disability because of lack of access to services.

Awareness needs to improve, and the committee has recommended that increased efforts be made to inform the general public about childhood rheumatic diseases and educate our medical workforce to provide support and earlier diagnosis. We've also recommended increased training of paediatric rheumatologists and setting up centres of excellence in our major capital cities so it's not necessary for people to travel overseas to train as paediatric rheumatologists. We have also recommended that schools be better educated about how to help children with chronic arthritis.

There is much more that we could say, and there are many more recommendations in this report, but I would like to thank all the members of the committee that contributed to the report. In particular, I would like to thank the chair, Trent Zimmerman. Unfortunately, he has COVID-19 and couldn't attend today, but I would like to thank him overall for his intelligence, his good humour, his hard work in presenting this report to the parliament and his support of the other members of the committee who undertook this investigation and this report. They did this report, as they have done all their reports over the last three years of this parliament, in a bipartisan, community minded and patient focused way. I'd like to thank the member for Makin, who's beside me here today, for his active involvement in the report. I'd like to thank the other members of the committee, including the member for Robertson, the member for Reid, the member for Moncrieff and others who were involved.

Most of all, I'd like to thank our secretariat, who have really gone above and beyond to make this report available so quickly and, as they have done with our other reports, provide meticulous and high-level research to make sure that our report is the best possible report we could make. I would like to thank in particular Kate Portus, Rebecca Gordon and Peter Richardson for all their hard work.

I'd also like to thank the Juvenile Arthritis Foundation, led by Victoria Allen and Ruth and Stephen Colaguiri. I'd like to thank my colleagues Jeff Chaitow, Davinder Singh-Grewal, Ben Whitehead, Mark Friswell and Rebecca James for all their hard work in presenting the information to our committee. And I'd like to thank all those members of the committee for all their hard work, their diligence, their good humour, their patience and their very bipartisan approach to a disorder that really needs much better support from the wider community and much better support from governments in particular. I move:

That the House take note of the report.

Steve Irons (Swan, Liberal Party) | Link to this | Hansard source

The debate is adjourned and the resumption of the debate will be made an order of the day for the next sitting.