Graham Perrett (Moreton, Australian Labor Party) Share this | Link to this | Hansard source

I move:

That this House:

(1) welcomes the 106 advocates for Juvenile Diabetes Research Foundation (JDRF) Australia who are present with their families in Parliament House this week to advocate for further funding for the Type 1 Diabetes Clinical Research Network (T1 DCRN);

(2) commends these advocates for type 1 diabetes (T1D) on their work with Members and Senators across Australia, explaining why the research undertaken by the T1 DCRN to date has given them enormous hope;

(3) notes that there are over 130,000 Australians living with T1D, who are part of a passionate and articulate community as all who participated in World Diabetes Day on 14 November 2024 would know;

(4) acknowledges the work of the House of Representatives Standing Committee on Health, Aged Care and Sport inquiry into diabetes, chaired by the Member for Macarthur, which made bipartisan recommendations relating to T1D research, early detection and prevention, and to expanding access to diabetes technologies that help in the management of T1D;

(5) congratulates the advocates who have travelled from all over Australia to tell their stories and make the case for funding for the next stage of the T1 DCRN; and

(6) provides cross party assurance to JDRF Australia advocates that their message has been heard, their tenacity is admired, and that it is understood in this House that research holds the key.

The statistics concerning type 1 diabetes are confronting. Today there are over 130,000 Australians living with it. Every year around 3,000 children and adults are newly diagnosed with type 1 diabetes—about eight people per day. In 2021 around 13,200 children and young adults aged zero to 19 were living with type 1 diabetes, and it's great to see some of them in the chamber here today. In 2023 these numbers translated to around 19,000 years of healthy life lost. However, tomorrow and today our focus will not be on statistics; our focus will be on the 106 children with type 1 diabetes and their families who will be visiting Parliament House for the Kids in the House event, kids like Charlotte and her dad, David, who I met previously thanks to the JDRF.

I have been involved with the Parliamentary Friends for the Prevention of Diabetes for my entire time in politics and am currently co-chair with the indefatigable member for Grey, Rowan Ramsey. During this time, I've benefited from a close working relationship with JDRF and learnt about the significant research carried out by the Type 1 Diabetes Clinical Research Network.

JDRF is focused on research, including numerous clinical trials, that addresses two key pillars: finding a cure and improving the day-to-day lives of people with type 1 diabetes. The researchers want to discover how to prevent the condition, to find out what's causing it and to investigate how to stop it developing. What JDRF calls 'precision research' focuses on the differences in presentation of type 1 diabetes and subsequently how to tailor treatment to individuals, and their 'progress research' is aimed at accelerating the search for a cure.

Over the past year, I've had an additional focus for my work: temporary membership of the House of Representatives Standing Committee on Health, Aged Care and Support for its inquiry into diabetes in Australia. This year-long inquiry had nearly 500 submissions and met with stakeholders all around the country. The resulting report on the state of diabetes mellitus in Australia in 2024 recommended the continuation of funding for type 1 diabetes research and clinical trials. I think all in this place, particularly the member for McNamara, would fully support that. The Type 1 Diabetes Clinical Research Network has received over $70 million in funding since 2010. Minister Butler provided a further $6.5 million in this year's budget, reinforcing the funding from the National Health and Medical Research Council and the Medical Research Future Fund.

For people living with type 1 diabetes, the primary concern is, of course, the day-to-day management of the condition. When young Charlotte, hiding down the back there, visited my office, she was proud to show me her continuous glucose monitor. Continuous glucose monitors make the management of type 1 diabetes a little easier. They provide up-to-the-minute analysis of glucose levels, enabling the timely management of glucose highs and lows, leading to fewer low blood glucose emergencies. In June this year, I was one of a group of parliamentarians who wore a continuous glucose monitor for two weeks. I've changed my diet because of that. Who knew that sushi was so bad for you? This experiment was a great one to be involved with. I know people who use CGMs find them to be gamechangers, so I'm happy that the government has subsidised them. We're also committed to the expansion of the eligibility criteria for the separate insulin pump program.

I'd also like to touch on the advocacy work of JDRF. It's why the indefatigable Charlotte is here in Canberra this week, to link politicians with people with a lived experience. It's always powerful to hear directly from those affected, like Charlotte, for their part. JDRF advocates find purpose and positivity through speaking out for their community and pushing their research agenda. Thank you. Today and tomorrow is all about hope for the future; it's about our commitment to further research that makes it easier to manage type 1 diabetes on a daily basis, and it's about a firm focus on working together for a cure.

I'd like to thank Charlotte and the other impressive young advocates and their families for the work that they do to accelerate progress on the research targets of prevention, precision and progress. I extend a warm welcome to all the children and families coming to events and look forward to meeting many of you over today and tomorrow. Sadly, I think this will be my last JDRF event, so thank you for all the great work that you do, and I will follow from a distance outside the chamber.

Rebekha Sharkie (Mayo, Centre Alliance) Share this | Link to this | Hansard source

Is the motion seconded?

Rowan Ramsey (Grey, Liberal Party) Share this | Link to this | Hansard source

The motion is seconded. To the JDRF kids and the Kids in the House program, I've got to say, that in the 17 years I've been here, I think this is the most effective lobbying campaign we've seen. Congratulations JDRF and Mike Wilson on this program. All those blue shirts and those little kids actually tear at your heartstrings, because you know what diabetes is doing to them but also to their families and how difficult it is to cope with on every level. Welcome to Parliament House, and thank you, member for Morton, for putting this motion up.

The member for Morton and I have become very firm friends after our 17 years together in parliament. We're leaving at the same time, and I'm looking to hand over the reins of the coalition's side of being the co-chair of—I don't actually call us the Friends of Diabetes. I say we're the enemies of diabetes in this place, and long may that tag live! The member for Lindsay, alongside me here, has her own personal story about diabetes. I look forward to this group. It is the longest-serving group—the first friendship group formed in this place and the longest surviving. What I'd like to see is the group abandoned because we've solved all the problems with diabetes, but I suspect that's a little way away yet.

There is a special mention for Fletcher Buchanan, who's momentarily distracted, and his mum, Alex. His dad, Luke, can't be here today. He's a principal. Oh, there we go—actually, there's an update. Welcome. All of you have your own personal story. Fletcher is only two years old. I went down to Yorketown two or three weeks ago to introduce myself to him, and he's a delightful young fellow who is looking forward to taking advantage of the advances in the treatment of diabetes.

When I think back over what we've achieved over the 17 years in parliament, there weren't any constant glucose monitors around, then. They didn't link up to pumps. That has made such a vital change to people with diabetes, but we're not happy. We want a cure. That's the answer. We can't do that unless we keep up on the scientific front. I normally start my speeches about diabetes by saying it's the leading cause of heart disease, the leading cause of blindness and the leading cause of amputation. I should add that it's also one of the leading causes of kidney disease, dementia, stroke, mental stress, cancer and liver disease. There are very good reasons for Australia to make a concerted effort to play its part in the international scene to see this cursed disease off, quite frankly. None of you choose to have it. You just have to wear it and live with it. So thank you so much for your stoicism.

I'd also like to make a special mention of Mike Wilson OAM, who has led this organisation for 20 years. You stepped down mid-year, but it's good to see you back in here, Mike. I think we were due to have lunch today somewhere, but the cafe wasn't open or something. We look forward to working with Sydney in your place.

There are so many things about diabetes. It's not just type 1, of course; there is type 2 diabetes as well. Sadly, I have reported to this House many times that the electorate of Grey is the world champion or the Australian champion when it comes to the incidence of diabetes full stop. There are 1.4 million Australians diagnosed with diabetes, and type 2 diabetes is creating havoc.

So we need to keep going on all those fronts. I think it less likely that we will find a cure for type 2, but I think we will continue to find better and better treatments. But I do think the future is bright from the point of view of finding that long-term cure. I don't know who the smart lady or smart man will be that will suddenly say, 'Eureka, we've got the answer here!' Maybe it will happen incrementally. But I do know that in this place, in this parliament, that both sides of parliament and the crossbenches—all of us—are united in the cause of trying to support juvenile diabetes research.

I back the calls from the member for Moreton, that we need to see a continuation of that funding—I think you're looking for $30 million at the moment. It originally came from Greg Hunt. There was an extension last year. We need it to be locked into the budget on an ongoing basis until it's done.

Tracey Roberts (Pearce, Australian Labor Party) Share this | Link to this | Hansard source

I thank the member for Moreton for this motion. I acknowledge the 106 advocates for the Juvenile Diabetes Research Foundation, JDRF, and the advocates in the chamber this afternoon. It is a privilege to recognise this significant occasion as we unite to advocate for a cause that touches the lives of more than 130,000 Australians living with type 1 diabetes. This includes my beautiful grandson, who was diagnosed at age 10. His treatments continue to be monitored and amended with his growth, so this is very close to my heart. I am very proud to wear the blue JDRF T-shirt.

I have joined my grandson on JDRF walks, and would like to give a special shout-out to the amazing WA team of Dakota Edmiston, Louise and Sabine Murray, Scott and Digby Price, and alsoto the hardworking Mel Eveille and Sydney Yovic for their excellent work and their Kids in the House initiative. Together with their families, these advocates have travelled from around the nation to share their stories to make a compelling case for the Type 1 Diabetes Clinical Research Network. I want to commend each and every one of you for your unwavering dedication and tireless efforts in working with members and senators across Australia. Your advocacy has not gone unnoticed.

The research conducted has provided hope—a beacon in what can often feel like a daunting journey. The advances made through this research are not just numbers or statistics; they represent real lives, real families and real futures that are being transformed through science and innovation.

Thursday 14 November marked World Diabetes Day—a day when a passionate and articulate community raised awareness about diabetes and stressed its advocacy for research that will lead to better treatments, early detection methods and ultimately a cure.

I'd also like to acknowledge the valuable work in the House of Representatives Standing Committee on Health, Aged Care and Sport. Under the leadership of the member for Macarthur, this committee has conducted an inquiry into diabetes that yielded bipartisan recommendations. These recommendations focus on critical areas such as research, early detection and prevention strategies, and expanding access to essential diabetes technologies. The commitment shown by this committee reflects a growing recognition that addressing type 1 diabetes is not just a health issue; it is an absolute imperative for our society.

To the advocates who have travelled great distances to be here today: your courage in sharing your personal stories is inspiring. Each narrative adds depth to our understanding and reinforces the importance of collective advocacy efforts. You are not just representatives of your own experience; you embody the hopes and dreams of countless others affected by this condition.

We understand that research holds the key to unlocking new possibilities for those living with type 1 diabetes. It is through continued investment in research that we can pave the way for innovative treatments that will enhance the quality of life throughout your life, and your message has been heard loud and clear.

Diabetes Australia has expressed strong support for the recent federal budget measures that will significantly benefit individuals who are living with type 1 diabetes. Key highlights include investment of $3.7 million to subsidise insulin pumps for financially disadvantaged Australians under the age of 21. This initiative aims to enhance access to vital diabetes management technologies to ensure that young people can effectively manage their condition without facing financial hardship. Additionally, the budget allocates $6.5 million to support the type 1 diabetes clinical research network, facilitating a number of research projects that are crucial for advancing treatment options and improving health outcomes.

The Albanese Labor government budget provisions represents a significant commitment to supporting Australians with type 1 diabetes, addressing both immediate needs and long-term health outcomes to enhance access to essential medical devices and research funding.

In closing: let us remember that our fight is far from over. The path ahead may be challenging, but together with advocates, families and researchers we can forge a future where diabetes no longer dictates the lives of those affected by it. Thank you once again for being here today. It's so incredibly important. Thank you for your advocacy and for your unwavering commitment to making a difference in the lives of those living with type 1 diabetes. Together we can create lasting change. It's so important, and it needs to be done. The sight of blue T-shirts with JDRF on them is absolutely heartwarming, and it's great to see each and every one of you. Thank you so much.

Melissa McIntosh (Lindsay, Liberal Party, Shadow Minister for Energy Affordability) Share this | Link to this | Hansard source

There'll be 106 young people with type 1 diabetes in parliament tomorrow for JDRF Kids in the House—and here today. That's 106 young people and their families who have a harrowing story of being everyday kids one day and on a roller-coaster that never ends the next. That is the story of type 1 diabetes. Every family that will be here tomorrow wishes medical research had progressed enough so that their child did not end up in hospital on diagnosis and that it could be prevented.

On diagnosis, my son Byron was rushed to hospital with blood like syrup, as we were told, and blood sugars above 40. He had been training and studying hard, which made us think it was just fatigue. Hindsight tells us differently. There were so many factors that led us there, and every family has many factors going on in their lives that lead to their own dramatic story. There are 1,161 dramatic stories in Lindsay.

More than that, we wish for a cure. The great Swans athlete Patty McCartin said to me right here in parliament last week that type 1 is the most 'unknown known' disease in the world. So many people still don't know what type 1 is, and many of the young people who are coming into this House have probably met someone who has asked them, 'Do you have too much sugar?' Or perhaps they have said to them, 'You don't look like someone who has diabetes.' They probably also didn't want everyone to know they had type 1 at first, because of the stigma. Then, somewhere along the way, that feeling of wanting to hide type 1 changed, and they become type 1 advocates, and now they want the whole country to know—and we're listening.

We listened during the House of Representatives Health Committee inquiry into diabetes—Dr Freelander is here in the chamber—where we made a number of recommendations related to type 1. We recommended that subsidised access to continuous glucose monitors be further expanded and, in the first instance, all access limitations, including age, in relation to patients with type 1 diabetes be removed. We recommended that the government explore expanding subsidised access to insulin pumps for all Australians with type 1 diabetes, as well as increased funding for type 1 diabetes research and clinical trials, and an increase in diabetes educators; there was only one looking after adults in Nepean Hospital when Byron was diagnosed. And we made a recommendation around better mental health support for people with type 1 and also recommended that the government undertake a review of the price and choice of insulin pumps in Australia.

I'm so proud that we ensured that type 1 was heavily on the agenda and made those recommendations. Lindsay's very own JDRF advocate, Emily Klimek, who's here today, was the very first witness who gave evidence at the inquiry. She said:

I am speaking on behalf of the 130,000 with type 1 and also the eight more that will be diagnosed tomorrow. I think T1D is very misunderstood, and it absolutely sucks having it.

Emily is one of the advocates here in parliament this week, and I couldn't be prouder as her local MP. It is Emily's advocacy—along with that of her mum, Julie—for choice in pumps that was really important as we went through the diabetes inquiry. Kids with type 1 shouldn't be forced onto only one type of device. Everyone's body is different, everyone's needs is different, and choice is paramount for the successful management of type 1 and keeping blood sugars under control. Access to technology—the right technology for the individual—is the difference between a long and healthy life and one that might be filled with complications. It can be the difference between life and death because, as we know with type 1, the high blood sugars can give you long-term complications and the lows can kill you.

But this week, we are not going to be down. This week is about reminding all the Kids in the House that they can do anything. I'm super proud that my son, Byron, who was diagnosed two years ago, has since represented Australian judo. He has changed the International Judo Federation rules—when the rules said you couldn't wear a device on the mat—so that kids all across the world with type 1 can now step onto a judo mat with a CGM or a pump. Tomorrow, he will also be in the House, giving presentations to families and reminding the kids that they can do and be anything they want. They can quite literally climb Mount Everest. I wish you all the luck over the next couple of days.

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

I'm a cranky, old paediatrician, and I have seen many kids with diabetes in my time, but I just want to tell you all—and Byron, as well—just how important your advocacy is. I've seen dramatic changes in diabetes management in the half a century that I have been working as a doctor and as a paediatrician, in particular. My very good friend, Helen Woodhead, who is a paediatric endocrinologist and a diabetic herself, has really changed the face of paediatric diabetes in Australia. The advocacy that you are giving us is remarkable. Everyone knows the blue T-shirts; everyone knows the JDRF, and you're changing the narrative.

We know from our diabetes inquiry that the best practice these days is a closed-loop, artificial pancreas type system with better control, fewer side effects and fewer complications. We are aiming to get this for everyone who is eligible, but it takes time, effort, money and commitment from government—and our government is committed to this. But we need to make sure that that treatment is available not just in the inner cities but all around Australia, in rural and regional areas and remote areas as well. We need better Indigenous trained health workers who can manage type 1 diabetes in their communities.

What you are doing is spreading your message all around the country, and it is just so important. We've seen how important not just education but resources are. We need diabetes educators in all areas, not just in the major teaching hospitals. We need people to be able to access diabetes educators and podiatrists and ophthalmologists and a whole range of people who can help manage their diabetes.

There are some really exciting things happening in type 1 diabetes with prevention and treatment before diagnosis. We know that diagnosis can sometimes be difficult—some people struggle to get a diagnosis. Our GPs, our health professionals, need to be better trained in diabetes, and our government is committed to this, to making sure that people can get early diagnosis—in fact, diagnosis or potential diagnosis before presentation with symptoms. This is very important. We know there are some really exciting things happening with the genetics of diabetes, and we hope one day there will be a world where people with diabetes will not have to inject themselves, where they will have lives without the need for devices et cetera.

I think that will come. I've seen such dramatic changes in my time as a paediatrician, from the use of multiple injections a day of beef and pork insulin to human insulin and the closed-loop system. It is making a dramatic difference. We now know that people with diabetes can do the things that everyone else can do. We've seen first-grade footballers, cricketers and people like Byron competing at the highest level with type 1 diabetes. The use of a closed-loop system has been dramatic. As I've said, there are other rapid advances happening in the immunology and genetics of diabetes, and our government is committed to making sure that these advances are available to all Australians.

I also have particular interest in countries around us—our near neighbours in the South Pacific. We need to make sure they have the resources to manage diabetes as well. Last year, on our trip to New Guinea, we saw there were difficulties in getting access to treatment for type 1 diabetes—in the highlands of New Guinea, in particular—and we must make sure that our Pacific neighbours have the potential to treat type 1 diabetes like we have been doing.

The Australian government is also looking at how we can deliver long-term management for people in rural areas so that they don't have to travel to different level 3 centres for management of their diabetes. We are looking at improved research into diabetes and longer research programs, lasting years rather than one or two years. This is very important if we are going to look to the future with forward-facing management for type 1 diabetes. JDRF has been very important in getting that message around the parliament and to people who can influence government policy.

I'm very proud of our diabetes report that we completed last year with the help of the member for Lindsay, the member for Kooyong and many other of our parliamentarians. We hope that this will help provide solutions for the future. Thank you for everything that you do. You are making a huge difference in our parliament for people with type 1 diabetes and for those in the future. I thank you so much for your efforts and I'm really looking forward to hearing your stories tomorrow about type 1 diabetes and your progress. Thank you.

Rebekha Sharkie (Mayo, Centre Alliance) Share this | Link to this | Hansard source

First of all, welcome everybody who's here from JDRF. Many of your faces look very familiar to me. Thank you for being so attentive during the speeches. That has been a hard slog. You will be thankful to know that I am the last speaker on the JDRF motion, and then you can relax and do other things. But it really is a delight to have you here. I would echo many of the other members' words. The advocacy that the JDRF network does, in sharing your stories and spending time with members of parliament, is very powerful. Stories are very powerful.

I thank the member for Moreton, who put forward this motion, because it is so incredibly important. I know that kids in the House—I've seen many white trench coats over the years. Do you have the white trench coats here? Excellent. Very good. It's spectacular to see. Over the years in my electorate, I have met with many children and young people who are living with type 1 diabetes and I have heard their stories. That has been a real driver for me as the federal member to then, over the years, go and advocate to various health ministers about the needs of people who are living with type 1 diabetes, what we can do to make life better for them and, as the member for Grey said, not give up until we find a cure.

I'd like to mention a family from my electorate of Mayo: Dwayne, his wife, Belinda, and their gorgeous daughter Emily. I met Emily, who is living with type 1 diabetes, around her second birthday. She was about 2½, and that was in July 2021. I recently met with Emily again, and now she's six years of age. She is just doing so fabulously well. She's loving school and loving life.

Emily's story and stories like hers are what made me go and meet with Greg Hunt, the former health minister, who was incredibly supportive of making sure that we could make constant glucose monitoring affordable. To me, it was a game changer when we were able to get that, particularly for children, and then have it expanded. At that time, the NDSS subsidy for constant glucose monitoring was only available to young children and there was a real concern when people aged out about what that affordability would look like. I was pleased to see that the then minister and the then government said that they would be looking to make it accessible for everyone. When Labor was in opposition, they agreed to that, and now we have that as policy.

That's powerful. Your work did that, not us in this place. It's your work and advocacy that made that happen. As Emily's father said to me:

'Affordable access to diabetes technology will truly change lives. Type 1 diabetes is a challenging and relentless lifelong disease that requires constant management. Committing funds to CGMs and technologies will positively impact thousands of Australians in both the short and long term.'

As the member for Macarthur mentioned, I too look forward to the government's response to the report of the Standing Committee on Health, Aged Care and Sport, ably chaired by that member. I note the member for Lindsay's great work in this space too.

We need to make sure that we are constantly looking forward and working with you on new projects—that we don't ever give up. We have to make sure that there is research and funding, because that's how we're going to see change. We can't just assume it's not going to happen, and we can't, as a nation, just expect the rest of the world to do this lifting. In particular, I lend my support to recommendation 21, which is:

… that the Australian government takes steps to manage diabetes research efforts through the Australian Centre for Disease Control (CDC) by coordinating with the peak bodies such as JDRF and Diabetes Australia research priorities with an emphasis on equitable access and prevention … and considers increasing funding for Type 1 diabetes research and clinical trials.

I thank all of the people who are here today in the Chamber for coming to parliament, particularly at this busy time, as we're coming up to Christmas, and during this crazy week which is the last week of parliament. You will always be so very welcome here, and I look forward to joining you tomorrow.

Terry Young (Longman, Liberal National Party) Share this | Link to this | Hansard source

The time allotted for this debate has expired. The debate is adjourned, and the resumption of the debate will be made an order of the day for the next sitting.