John Alexander (Bennelong, Liberal Party) Share this | Hansard source

I second the motion. Thank you to my friend and colleague the member for Macarthur for bringing forward this important motion today. As he often does, he reminds us that there are good people on both sides.

Juvenile arthritis is a serious, incurable, debilitating autoimmune disease affecting an estimated 6,000 to 10,000 children and adolescents in Australia. For a condition with such a high prevalence, there is an incredible lack of awareness of this condition. For example, today I learned that shorthand for juvenile arthritis is JA, something I feel I should have known sooner!

The condition is debilitating but also unpredictable: mornings without flare-ups are no guarantee of a pain-free afternoon. And when the condition does flare up, the excruciating pain can leave people unable to walk, move and, importantly, play and socialise. At this age particularly, even temporary disability can leave lasting stigma and depression. With effects like this it would be logical to think that juvenile arthritis would be better known, and yet despite the prevalence being similar to childhood diabetes and epilepsy, and around six times more common than cystic fibrosis, there is hardly any political or community awareness of juvenile arthritis.

Thankfully, there is some movement by the government to address this condition. In 2018 the government commissioned the National Strategic Action Plan for Arthritis, which is an evidence-informed blueprint to guide national efforts to improve the health-care-related quality of life for people living with arthritis, including children living with juvenile arthritis. The action plan was released in 2019 and implementation funding of $4 million has been provided to date, focusing on consumer awareness-raising, educational activities and health professional education and training for arthritis.

In regard to juvenile arthritis specifically, activity being implemented under the action plan includes development and dissemination of guidance on consumer focused care for people with the condition, their carers and families, and support for kids camps run by arthritis organisations. These camps provide an opportunity for children and adolescents to meet others like themselves and to participate in condition-appropriate and fun activities. They include educational workshops and self-management techniques delivered in a fun environment, and provide important opportunities for peer support both for the child and for their families and carers.

For a disease that can limit the amount of childhood that a child can enjoy, camps like this can make a real difference. The emotional and physical therapies for juvenile arthritis are obviously important, but we must also devote time and energy to finding treatments and, hopefully, a cure, so that this condition does not continue to bring pain to people into the future. On October 14 2021 the health minister announced a new grant opportunity through the Medical Research Future Fund's Emerging Priorities and Consumer-Driven Research initiative, targeted at chronic musculoskeletal conditions in children and adolescents and with funding of up to $20 million over four years, from 2021 to 2022. The objective of this grant opportunity is to provide financial support to Australian medical research and medical innovation projects that develop or improve approaches for the early diagnosis of chronic musculoskeletal conditions occurring in children and generate knowledge that supports the development and implementation of improved therapeutic regimes through models of care for chronic musculoskeletal diseases in children. The grant opportunity will target chronic autoimmune diseases that affect the musculoskeletal system, such as juvenile idiopathic arthritis, juvenile system lupus erythematosus and juvenile scleroderma.

The final piece of this puzzle is education. We can't treat these conditions if we can't diagnose it, and early detection is key. There needs to be more education for doctors and clinicians. I understand that work is also underway to develop a living guideline for juvenile arthritis as part of a health professional's education and training via a grant funded by the government, led by the Australia and New Zealand Musculoskeletal Clinical Trials Network and cochrane musculoskeletal— (Time expired.)

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