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

I move:

That this House:

(1) notes that juvenile arthritis affects between 6,000-10,000 Australian children and adolescents;

(2) further notes that of the Australian children living with juvenile arthritis:

(a) 80 per cent will experience pain daily;

(b) 20 per cent develop a vision-threatening inflammation of the eyes; and

(c) many experience lengthy delays in obtaining a formal diagnosis;

(3) commends the work of the Juvenile Arthritis Foundation of Australia and their tireless advocacy for young Australians living with juvenile arthritis; and

(4) recommends that the Government provides funding to establish programs aimed at:

(a) raising awareness of this disease; and

(b) developing a national registry and research package to better understand the extent and impact of juvenile arthritis on individuals and the economy.

I came to this place to provide a voice for my community and for the many patients I've cared for over the years. Some of those patients suffer from juvenile arthritis. One organisation that I've been privileged to work with since I've been in parliament and that I support is the Juvenile Arthritis Foundation Australia. I support them alongside the member for Higgins, who co-convenes the Parliamentary Friends of Arthritis with me. Juvenile arthritis is a serious, incurable and debilitating disease that affects up to 10,000 young children and adolescents around the country, and more than double that number of adults are suffering the side effects of the childhood arthritis. The Juvenile Arthritis Foundation Australia is a wonderful organisation founded by professors Ruth and Stephen Colagiuri. It seeks to advocate for these children and families, and it's doing a fantastic job. But we must help them to provide state-of-the-art treatment for children with juvenile arthritis.

There is no proper Australia-wide program to develop paediatric rheumatologists to treat these children, and many children are missing out on care because of delayed diagnosis and the lack of a comprehensive program to provide multidisability treatment for them. Between five and 10 per cent of these children also suffer from what's called uveitis, which is a chronic inflammatory disease of the eye that can lead to blindness. Some of these children can't get to see an ophthalmologist because of the lack of a comprehensive program for their care. Many of these young Australians have really suffered a lot because of their juvenile arthritis. Before the COVID lockdown we had a meeting in this place where we heard the stories of the children and their families, and they were really harrowing. Juvenile arthritis is not uncommon, but the diagnosis is often missed because of a lack of proper training for general practitioners and other health professionals. One in five children with juvenile arthritis will develop uveitis and 80 per cent of children living with juvenile arthritis have daily pain that's often difficult to manage. One in three people who have suffered from juvenile arthritis will enter later life with a severe disability.

There's a shortfall in specialist services around the country, but particularly in the more populous states such as New South Wales. I've been privileged to work with a close friend of mine Dr Jeffrey Chaitow, a paediatric rheumatologist, who has provided wonderful care for children with juvenile arthritis in New South Wales, but he has severely limited resources because we're not training enough people to deal with juvenile arthritis. There's a shortfall in specialist services in things like paediatric physiotherapy and occupational therapy. As I mentioned, there's a shortfall in ophthalmologists who can assess and treat these children quickly. Unfortunately, although it's so common in a complex condition, the children are waiting far too long for a diagnosis. We must have a comprehensive national plan. The effect of juvenile arthritis on families is severe. Children often struggle to get to school because of pain. They often have physical disabilities because of limitations in joint movement and contractions, and the effect of this is really profound. These children battle every day, and their families battle with them.

We must raise awareness, we must provide comprehensive care plans for them and we must train more people in paediatric rheumatology so better treatment can be provided to these kids. We need to address the shortfall in services around the country. We need to improve affordability and accessibility of care and the quality of care that the children are getting. Whilst I am most familiar with the problems in New South Wales, I know that in places like Victoria, Tasmania, South Australia and Western Australia it's very difficult to get comprehensive multidisciplinary treatment for children with multiple joint abnormalities. Some children have other associated problems, such as heart problems. Some children suffer, as I mentioned, from uveitis and visual impairment. Early treatment and early diagnosis to prevent disability are the key to management, and we must do better as a country. I'll be talking about this more next year, because we are about to start a health committee inquiry into better treatment for juvenile arthritis, but we as a country must do better.

Julie Owens (Parramatta, Australian Labor Party) Share this | Link to this | Hansard source

Is the motion seconded?

John Alexander (Bennelong, Liberal Party) Share this | Link to 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.)

Emma McBride (Dobell, Australian Labor Party, Shadow Assistant Minister for Mental Health) Share this | Link to this | Hansard source

I rise to support the motion moved by my friend and colleague the member for Macarthur. Dr Freelander has had a long and distinguished career as a paediatrician and is passionate about quality health care for all Australians, especially children and young people. I commend him for bringing this motion to the parliament.

As Dr Freelander has said, juvenile arthritis is serious, incurable and debilitating, and it affects between 6,000 and 10,000 young children and adolescents across Australia. While juvenile arthritis is relatively common, about as prevalent as childhood diabetes or epilepsy, it does not receive the same level of attention. This motion aims to help change that, and to raise the profile and prominence of juvenile arthritis in the wider community and, importantly, with decision-makers and funders.

As the motion states, juvenile arthritis can have a profound impact: one in five children with juvenile arthritis will develop inflammation of the eyes, which can permanently impair sight and cause blindness. Eighty per cent of children with juvenile arthritis live with pain each day, impacting their learning, their play and their mental health. There are 30,000 adults in Australia today whose arthritis started in childhood, and one in three of these people will have a severe disability.

As the member for Macarthur mentioned, there is a shortfall of specialist services available to Australian children living with juvenile arthritis, and, as is all too common, this shortfall is even more acute outside of the big cities. A grandparent in the electorate I represent on the Central Coast of New South Wales wrote to me about his granddaughter. He said, 'Our granddaughter suffers from ankylosing spondylitis, a form of arthritis that has a very significant inheritable causative factor.' He goes on to say: 'I myself have suffered a lifelong severe disability, with symptoms commencing in the 1950s. Much less was known of the disease in those days, and most sufferers went undiagnosed for years, leading to a lifelong disability. Better knowledge and management these days will ameliorate these impediments to a successful life.' He goes on to say: 'Unfortunately, these are sadly lacking in New South Wales. The continual pain and disability resulting from these diseases very seriously impair these lives of the sufferers; moreover, the family burden resulting is also significant. Time is lost, financial burden incurred and family relationships are harmed. Affected children such as our granddaughter need the care of a paediatric rheumatologist, a physiotherapist, trained nurses, pain management and psychological counselling. These services are all lacking in New South Wales.' He finishes by saying, 'Much better care should be available to sufferers of juvenile arthritis.'

As is common with a range of complex conditions, children are waiting far too long for diagnosis, which means that that they are waiting even longer for effective treatment and care. The early years of life are critical to our social, cognitive and emotional development. Children and adolescents with juvenile arthritis unfortunately miss out on a lot because of their condition, whether it's time off from school because of pain or because of treatment, the social impact of having to miss out on activities, or the complexities associated with diagnosis, treatment and support.

These children struggle. As the member for Macarthur said, they battle each day. We owe it to them to give juvenile arthritis the attention that it deserves. Juvenile arthritis must receive proper recognition so that these children can access the services they need close to home and when they need them. But we also need to address the delays families experience in obtaining a diagnosis. Ten months is far too long for a child living in pain each day to wait, and, as a society, we must do better.

We also need to address the shortfall in services to manage this condition. In particular, we need to improve the affordability, accessibility and quality of paediatric rheumatology services across the nation, but especially for young children and families living outside of big cities. Early diagnosis and expert care by specialist multidisciplinary teams can significantly reduce permanent joint and eye damage, stop pain and disability, and improve lives. I also support calls made by the Juvenile Arthritis Foundation Australia—and it was a pleasure to meet with them in Canberra earlier this year—to establish a national registry and research package into juvenile arthritis.

Appropriate recognition and appropriate funding from all levels of government is critical if we are to better understand the disease, better train people working in diagnosis and treatment of the disease, and improve the quality of life for all those who live with it. It will be much better for all Australians, particularly young people, who at the moment are waiting 10 months for diagnosis and waiting even longer for effective treatment. Early diagnosis and early treatment mean that many of these young people might avoid the lifelong disability associated with juvenile arthritis today. So I commend the member for Macarthur for bringing this motion to the House and I support the calls of the Juvenile Arthritis Foundation of Australia for more support.

Tony Zappia (Makin, Australian Labor Party) Share this | Link to this | Hansard source

It is difficult to contribute to this debate without repeating some of the matters and discussion points that have already been raised by other speakers. I commend the member for Macarthur for bringing this matter to the attention of the House, because it is indeed a serious matter. I for one have always looked at arthritis as being an adult's disease or illness or ailment. But the reality is that, as the member for Macarthur quite rightly points out in the motion, arthritis can affect anywhere between 6,000 and 10,000 young people. Indeed, even those numbers are questionable, because we don't have either a register or adequate research to establish what the real rate is of young people that are affected by the disease.

Nevertheless 6,000 to 10,000 young people are affected that we know of. For them, life can be incredibly debilitating. I can only imagine what it would be like for a young person, each and every day to deal with joint stiffness, pain, swelling, joint tenderness and possibly bone growth problems, which in turn affect the whole development of the young person. As a result of all that, it is more than likely the young person will be excluded from a whole range of daily activities that other kids would be able to participate in. Whilst there might be a little bit of support already in the form of perhaps a bit of guidance from their GPs and other health professionals, the reality is that it is a disease that is not curable at this point in time. Yes, there is support that can be provided to them. Certainly, by way of nutrition and maybe some forms of exercises, their life can be made a little better—in particular, exercises such as swimming and bike riding, which are not stressful on the joints and which can help with muscle strengthening aspects of it all. But, ultimately, they will not fix up the disease itself. That is something we should be focusing on, and this motion talks about that by talking about research and also establishing a register.

As a member of the Parliamentary Standing Committee on Health, Aged Care and Sport, having to confront parents of young children with any kind of debilitating disease is something that breaks your heart. I have said it in this place before and I will say it time and time again: it disappoints me that every time we see these young people, particularly if they have a rare disease that has not been properly researched, we can never find the money to carry out the research, to set up the registers or to give them the same support we do when it comes to other diseases, and yet we can, in the blink of an eye, find billions of dollars for defence equipment. I'm not saying defence equipment is not important; I am simply making the point that sometimes the amount of money that is being asked for is absolutely minuscule and it will change lives and even sometimes save lives. We can't find money for that but we can find it for other purposes.

One of the concerns I have about this particular disease, from the research I have been able to put together, is that, as other speakers have quite rightly said, it sometimes takes a long time for the diagnosis to be verified. That means that, for all of that time, the child goes undiagnosed, untreated and unsupported, and therefore has a much worse lifestyle than would otherwise be possible. One of the reasons for that, from what I understand and according to one publication, is that in Australia we only have 22 paediatric rheumatologists. That in itself highlights a shortfall in the medical profession. I'm not sure how well a normal GP would understand this condition or what sort of advice or treatment they should be providing, so one of the first things we need to do as a nation is to try to ensure that we have enough professionals in the medical field who are able to provide the advice and support that these children need so that they can, in turn, impart that advice to the GPs and so on. That's because without their support, obviously, we can't find those cures and treatments.

It's a disease which is quite often—in fact, too often—misunderstood and therefore neglected. So this motion goes straight to the point of having the register and carrying out the research, which I strongly believe we need to do, so that at least we give these kids a chance and, hopefully, one day find a cure for what is indeed a very debilitating disease.

Andrew Leigh (Fenner, Australian Labor Party, Shadow Assistant Minister for Treasury) Share this | Link to this | Hansard source

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 remarked to me how 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 & 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.

Debate adjourned.