E&OE TRANSCRIPT

SUBJECTS: Integrating Organ Donor card into the myGov app

BILL SHORTEN, MINISTER FOR THE NDIS AND GOVERNMENT SERVICES: Good morning, everybody. It's fantastic to be at Services Australia Newmarket offices in the electorate of Maribyrnong. We've got a great announcement to make, but before I do that, just introduce some people, with me is the new Labor candidate for Maribyrnong, Jo Briskey. Also, we have Assistant Minister for Health, Ged Kearney, who's got some exciting news to talk about organ and tissue donation. And we've also got Kristy, who's got an amazing story to tell us all. So, I might hand over to Ged, then I'll say some words about new developments with Services Australia and organ donation, and then we might hear from Kristy and then take questions. Ged?

GED KEARNEY, ASSISTANT MINISTER FOR HEALTH, AGED CARE AND INDIGENOUS HEALTH: Thanks, Bill. Good morning, everyone I'm Ged Kearney. I'm the Assistant Minister for Health and Aged Care, I'm the Assistant Minister for Indigenous Health, and we are here on Wurundjeri land, and I pay my respects to elders, past and present. This is an exciting day. Organ donation is such an incredibly important thing. It saves lives. It gives life back to people who need organ transplants. And we know that the vast majority of Australians agree that organ donation is important, but just over 30% of Australians actually register as organ donors. We need more Australians to register as organ donors, and it's really easy right now to do that. You can go to myGov and it's three quick clicks on there, or you can go to DonateLife.gov.au and register to be an organ donor. It's very important. One organ donor can save up to seven lives. So, it's great to have Kristy with us today who is a transplant recipient.

But I'm extremely excited to be here with Minister Shorten as the Minister for Services Australia. He has done an amazing thing in that he has allowed us to have a digital ID card. A digital card that will go in your myGov Apple Wallet, to let everybody know that you are an organ donor and that you have registered. For the first time ever in Australia, we will have that available quick and easily as a digital ID card so that everybody knows that you have you intend to be an organ donor. It's easy to identify, easy to find, easy for you to show people. Because even though you register as an organ donor, what we know, the most successful thing, the thing that is the most enabling for organ donation at that, if indeed you are in a position where you can donate your organs, is that your family knows. If your family doesn't know that you intended to be an organ donor, they are less likely to give that all important consent at that very difficult time. If they do know that you want it to be an organ donor, they are vastly more likely to give consent, and that's important. So, this is a great development for organ donation. I congratulate Minister Shorten for this development and it’s very exciting news. Back to you, Bill.

SHORTEN: Thanks, Ged. You can't overstate how important today's announcement actually is. Organ and Tissue Australia are doing a great job encouraging people to be organ donors. I've seen close hand, a family friend, when she suffered a traumatic road injury, because she was an organ donor there's three other people who had valuable lifesaving surgeries as a result of my friend's passing, so it really does make a difference. Four in every five Aussies say that they are up for donating their organs, but only one in every three Australians is actually registered to do it. So, what's really great is that the Albanese government, through Services Australia, and I thank Services Australia for working with Organ and Tissue Australia, what we've done is that you have a myGov app, 6 million Australians have already downloaded the app, and you have a digital wallet. And you know, at the moment you can link it with your Medicare card, or your pension card, or your health card. Now, what you can do is it's a very simple, very quick process to be able to link it to an organ donor card.

What that means is, it's going to change lives, literally, the ability to save lives. And so, it is really super, super easy. And what we want to do is encourage Australians, through the use of our myGov app, to be organ donors, just to close the deal between a good intent and a good act. Now we're really privileged today to be able to hear from Kristy. Kristy has got an amazing story about the importance of organ donation and how that changes lives and, and the ripples of the generosity of organ donation that give life to other people. So maybe let's hear from Kristy and then we could answer some questions.

KRISTY, TRANSPLANT RECIPIENT: Hi, I'm Kristy. I'm a kidney recipient. And like what the Minister said, this is a bit about my journey that saved my life and changed my life. I was 14 when I was diagnosed with kidney disease, and throughout high school I had to go through a lot of hospital visits. By the time I was 22, I was in hospital and my doctors have told me my kidneys failed. And being 22, I wasn't sure what that really meant. And then, everything moved so quickly. All I remembered was having tubes in me, and I was going through this machine, and this machine made me feel so cold. And I quickly learned that means it's dialysis. So, you have to wash your blood through this machine. And that's why your body feels so cold. And I had to do this three times a week, and it's from 4 to 5 hours. But my body is so little, and every time after a session, I feel so washed out. My day, I would be at home, I couldn't stand, I couldn't walk just because I felt so dizzy.

Then they moved me into peritoneal dialysis. It's when you have this tube called the Tenckhoff, inserted into your belly. So, I had another operation, and they removed my Permacath, which was for haemodialysis, the taking of the blood. And then to suit my lifestyle style, I had the peritoneal dialysis, and I was able to do dialysis at home, which felt a lot nicer than being in the hospital. I was able to do that for a year. I even went overseas with my dialysis machine for a week. And then later I learned that it wasn't for me. I went back into hospital. I was in intensive care. My heart was failing. My lungs were failing. I had blood clots in my lungs. It was so because this dialysis wasn't working for me. And, um, then they put me on haemodialysis again, washing through the blood and this time in a hospital. And I had to stay overnight, and I did it for eight hours, three times a week as well.

Then one day, I got a call after work. I was at McDonald's eating, eating my meal, getting ready for dialysis. I had my sleep pack. And the call was, we found your kidney, and everything just stopped for me at that moment. And then, they told me the kidney is from a young man from Perth. And I had a minute to decide if I want this or not. And you know what's there to lose? I said yes, and I was so excited about the news that I kept crying, and on my way home to put my dialysis bag away and go into hospital, I was crying on the tram. Then I realised I took the wrong tram. People were eavesdropping, but after I got off the phone, people were congratulating me. Then I took the taxi to my hospital, Saint Vincent's hospital. They had nurses waiting for me downstairs because they've known me since I was 16, and it just felt like a royal treatment from then.

I had my last dialysis session before I had my transplant, because they want your body to be in good shape before you have your transplant. And it took two weeks for my kidney to start. It didn't start straight away, so I was feeling a little bit glum. But once it started working and I was doing my last half an hour of dialysis, I asked them to stop it because I felt like I needed to wee, which was the first time I would have weed in the past four years. It's very, very weird. When you're on dialysis, you don't go to the toilet anymore. So, something so small I felt like I took for granted, just going to the toilet. And that's what I felt like I really needed to do, first thing, when my kidneys started working. Um, and that also meant I didn't need to drink water - I limited my water intake to one litre, so that was really hard for me when I was on dialysis during summer and being in Australia, we have very harsh summers and yeah, and just drinking up to one litre, that was my limit. And I'm aware some dialysis patients, but they can't really drink up to half a litre, so I can't imagine what they had to go through. But for me, one litre was very hard.

So, a year after my transplant, nothing was wrong with my transplant. I told my doctors I'm ready to start a family because I wasn’t, I couldn't - my body was not able to prior to transplant. So, post-transplant, we've changed my medication. I got the okay. And now I have two beautiful children. They're 18 months and four years old. And I think that's the biggest gift from the donors - giving me my life back, giving me a career back and letting me have a family.

SHORTEN: Are there any questions for Kristy or Jed or myself?

JOURNALIST: I'm wondering how the process works. Obviously, if someone's passing away and could potentially donate their organs, will the hospital be able to access the myGov record? How does that process sort of work, to notify someone? And will that make things smoother now rather than just having a card in a wallet?

SHORTEN: Yeah, What you’ll to be able to do is the family will be able to tell. I mean, making these decisions at the time where they're there's been a death or the organ’s available is very difficult. This will just provide easily accessible information for the authorities to be able to understand the intent of the donor. The best reasons to upload your myGov app and connect it to your Medicare and then get your organ donors cards, the best reasons really, I've heard, are 18 months and four years old. Kristy’s children. And so, yes, this just makes it a heck of a lot easier for everyone to identify the intent and the action.

JOURNALIST: Minister, do you expect organ donation numbers to increase following this policy change? Have you got any research on that or expectations?

SHORTEN: I'll get Ged to supplement this, but yes, I do expect numbers to increase. Australians are a pretty generous bunch of people, but sometimes we have an idea, but we don't get around to doing it. What we want to do is take the degree of difficulty out of the process of converting your general aspiration to be an organ donor into a reality. When people go on the myGov app and as I said, 6 million people have the app, they'll realise, and when they've connected their Medicare card up, it is really, really quick. It is just a couple of steps and you're done.

So, what we are doing is taking the red tape and the bureaucracy out of it. By the way, if you still want a physical card, you can still get a physical card. But once you've got it on your digital wallet, you just - life's just that much easier. We're all used to tap and go, and what we do with the organ donor card is going to just be a lot quicker. So, I expect there to be an uptake and we will of course be promoting it. Maybe Ged might have some comments she'd like to make.

KEARNEY: Sure. Thanks, Bill. I think the beauty of this is that it will be a prompt. You have your myGov app there. It might be a prompt for people to say who've always intended to donate or to, to register as a donor, to say, oh yeah, I should do that. And it makes it really quick and easy. So that's the first step, is that we hope that more people will register by that, that simple prompt that the app might give them. But the most important thing, the thing that we know increases our donation, is your family knowing. Because it doesn't matter what. It doesn't matter how many people actually register as donors, at that time when there's the possibility that you could be a donor, your family or your next of kin will be the ones asked to give consent. And your family are the ones that have to say yes.

So, we know all the data shows that if your family knows that you wanted, that was your intent to donate your organs, they will say yes, and it increases the donation rates dramatically. So, having the evidence there for the family to see loud and clear every, every now and then when you open up your myGov app, you'll say, oh, remember mum, remember dad, remember to your wife, that I'm registered. It might be a little prompt for that all important conversation. I think that is the beauty of having it right there all the time on your phone for everyone to see. It might just prompt that conversation. It's not an easy conversation to have, but it's an important conversation to have. So yeah, I think that this will go a long way, hopefully to increasing donation rates. So, thank you.