LUCINDA BARRY AM, CEO ORGAN AND TISSUE AUTHROITY: Good morning, everyone. It's a pleasure to be here. Firstly, I'd like to acknowledge the lands on which we are gathering today, the Ngunnawal people, and also pay my respects to other families with connections to the waterways and lands on which we're here today, and importantly, also acknowledge any other First Nations people here at the Parliament House.
We're here today to launch the 2023 activity report on organ donation in Australia. It’s great to have the Minister here with us to do that launch as well as a number of special families, two special families, with us today who are going to share their personal stories on their journey with organ donation. Firstly, I'd like to introduce the Assistant Minister for Health and Aged Care, the Honourable Ged Kearney, who's going to launch the report for us. Thanks, Minister.
GED KEARNEY, ASSISTANT MINISTER FOR HEALTH AND AGED CARE: Thanks, Lucinda, and thanks everybody for coming. As you heard, I'm Ged Kearney. I'm the Assistant Minister for Health and Aged Care, and I'm absolutely delighted to be here today to launch this report, because there is good news in this report. We know that giving the gift of organ donation is one of the best and biggest gifts that you could ever give. And I'd like to start by thanking all of the donor families out there who have donated their loved one's organs at a very difficult and tragic time, and we're going to hear two amazing stories from people with lived experience of that shortly.
But the report does have some good news. During COVID, transplant rates fell dramatically, and that is understandable. And we've been working incredibly hard with the Organ and Tissue Authority to get those donation rates back up again. It is incredibly important for every person that tragically passes away but agrees to donate their organs. They can save up to seven lives through that process, and we know that there are around 1800 people waiting for organ donations. Over the year 2023, we saw an increase in donation activity and transplant activity, and that's good news. But unfortunately, we saw only a very small increase in the number of people who consented to their loved ones donating. This is incredibly important part of the process. We will not take any organs from anyone unless their loved ones and their families give consent and agree to that.
So what is the key to making sure that consent is given? Well, it's very simple. First of all, we encourage as many people as possible right across Australia to register to be a donor. This is so easy. It's just three clicks on donatelife.gov.au.
It's very easy. Or you can do it on the Medicare app. Very simple processes to do that. It only takes a minute.
But the other important thing once you have registered is to have a conversation with your loved ones. If your loved ones know that you wanted to donate and that you intended to donate, then we know consent rates absolutely soar. It goes from about four out of 10 for families who don't know what their loved one's intent was to eight out of 10 to families who do know that their loved ones is going to register- wanted them to donate. So please register. Have that conversation with your loved ones and we know that we will get those registrations and those donation rates up.
Thanks very much everybody. I'm going to hand back to Lucinda.
BARRY: Thanks, Minister. As I said, we've got two really important guests here today, Oren and Georgia, who are going to tell their personal stories about their experience with organ donation. Firstly, I'd like to introduce Oren. He's going to share his story about his son, Jack.
OREN : Thank you. Lucinda. Minister, thank you too. It’s lovely to be here. I'm a very proud member of the Organ and Tissue Authority Advisory Board. I have been for six years. And I'm here today to talk about our gorgeous son, Jack, who was a beautiful boy. Sorry, I always get a bit emotional talking about my son, our son. And he was gorgeous. He died in 2009. Jack was aged 18. He was a registered organ donor. And his decision, our consent to donate his organs saved the life of four people. And it's a good story. So, that is one of the upsides of losing our gorgeous boy.
But his final 48 hours started pretty normally. Jack was a really, really good cricketer and footballer. He played football for his school on Saturday afternoon. Saturday night was average and normal, but woke up Sunday morning with a shocking headache. And the headache got worse during the day. Locum had a quick look at him and said, look, mate, might be getting the flu. Not sure. Take some Panadol and you know, see how it goes. As the day progressed, he got more and more distressed, and we thought hospital was the best option. By the time he got to hospital via ambulance, he was gravely ill, and about six or seven hours later was pronounced brain dead. It was that quick, and they diagnosed with meningococcal. And so that's how we lost our beautiful boy.
And as I said, Jack was a registered organ donor. So the question comes from the hospital staff, who are absolutely superb, and the DonateLife team, who were absolutely superb. The question comes: would you consent, please, to donating Jack's organs? He can save the lives of others. He's a perfectly healthy young man, or his organs are perfectly healthy, and he can save the lives of others. So, now, we're lucky. South Australia has a marvellous system through registration with driver's license. And Jack had just turned 18. He'd just gone off his P's onto his full licence and the opportunity came for him to register as an organ donor. And he was sitting at the kitchen bench with his mum, who was preparing dinner. He was very excited about getting his full licence organised, and the question came. The last question on our sheet in South Australia is: would you like to register as an organ donor? And Jack said to his mother: mum, what's an organ donor? And she said: your dad and I are both registered, but if something awful happens to you, you can- and you're taken to hospital and you die, the doctors can give your organs to other people to save their lives. And he said: ah, okay. Tick. Simple as that, just ticking a little box on a driver's licence registration form.
And sadly, three months later, that's exactly what happened. We were in a rural Adelaide hospital and we were asked the question: can we please use Jack's organs to save other lives? We consented yes. Now at that point, if your loved one is registered, as the Minister was saying, if your loved one is registered, eight out of ten people say yes to organ donation. It's really important. If they're not registered, only four families out of ten say yes. So a huge amount of healthy organs are buried or cremated. In our case, we were one of the eight out of ten that did say yes. We knew Jack's wishes. We'd had a discussion, and it- five of his organs went off to four people and saved the lives of four people. And it was- it really helped us. It helped us enormously in the fact that we knew part of Jack was still out there and helping others. And- but I think my message really is: please, we need to get- only 36 per cent of Australia is registered. South Australia, who have a driver's licence registration system, 73 per cent of our population is registered. So our consent rates in South Australia are higher. Organ donations are a little bit more normal in South Australia because people talk about it more through their driver's licence. There's a great system, and I urge the other states to follow suit. It used to be a national thing that South Australia hung on to, and it's dropped off in other states.
But in closing, we got a wonderful letter from Jack's liver recipient not so long ago. And the liver recipient said: thank you so much. The doctor said we only had- I only had weeks to live, and your son's liver saved my life. And God bless your son, and God bless your family, which was a lovely thing to have. But thank you for listening, thank you for coming, and let's get Australia registered as organ donors. Thank you.
BARRY: Thanks very much, Oren. As you've heard, registering and talking to your family is critical so that families can easily make that decision at the worst time in their life. I'm just going to introduce Georgia. Her mum passed away suddenly, Fiona. And Georgia’s being very brave today and coming here to talk to us and tell us her story. Thanks, Georgia.
GEORGIA: Thank you, Lucinda. I'm here today to talk about my beautiful mum, Fiona. To me and hopefully others, my mum was one of a kind. Always willing to help, and in my opinion, was amazing at everything she did – and that includes serving others. Not only was she a mum, but she was a justice fighter and would often take up a cause if she felt passionate about it, and she simply would not take no for an answer. It probably wouldn't surprise you to hear that she worked in the environment department, so she was passionate about her work and went above and beyond. It was just the sort of person she was. The old department these days actually has an award in her name and they hand it out each year, with my sister and I being there to present it. My mum was a very smart individual. She loved animals, her garden and I could go on and on about everything she did. But she was also the sort of person who believed in doing good and being good, and she believed in organ and tissue donation. Mum always had a why not attitude and that you should try to help others.
In 2020. My sister Hannah, my brother Thomas and I suddenly lost our beautiful mum. One afternoon she collapsed and suddenly- in one afternoon she collapsed and never woke back up. She was in good health so it was a complete shock to all of us. I guess it's a reminder to live every day as well as you can, and I like to think that my mum did just that, not only in her work, but her life. When we were asked if we would consider organ donation, it was an easy answer for my family. Mum had been a registered organ and tissue donor for many years prior to her death, so that made this choice even easier. Agreeing to mum's organ donation felt like a positive way to carry on her wishes and gave some meaning to her sudden death, despite it still being the hardest thing that we've gone through. Organ and tissue donation played a vital role in the grieving process and it provided us with support, community and understanding from those around us. I like to think that if my mum wasn't a registered organ donor we still would have made that choice due to her- due to just that being who my mum was. But being left in no doubt that that's what she wanted gave us a little bit of peace of mind at the time when everything was overwhelming. I hope that by telling my mum's story, it will encourage other families to register and talk to their friends and family about organ and tissue donation. Thank you.
BARRY: Thanks very much, Georgia. Just so important, so if you can register and talk to your family, that's important. If people would like to ask questions after, we're here all able to answer those questions. But thank you.
QUESTION: Hey, Oren, just a quick question for you. How has Jack's donation kind of helped with your grief? What's- there's a legacy there, isn't there?
KLEMICH: Yeah. I go back to the letter we received from Jack's liver recipient not so long ago, and it was just lovely. Best letter I've ever received or my wife and I have ever received. And it does help. The fact that- losing Jack was horrific, but the fact that he saved four lives really helps us with our grieving process. It really does. And it's a nice thing to know that 14 years on, Jack's liver recipient is alive and well and leading a healthy, great life. And we're very lucky.
QUESTION: Yeah. And just one more for Helen, maybe. Are the opt-in rates- can you explain a little bit about opt-in versus opt-out? Or is that someone else?
BARRY: There's two consent systems. With either an opt-in or an opt-out system, families are still approached in the hospital about organ donation. So what's important is that you talk to your family. And if you support donation, register so it leaves them in no doubt that you want to be a donor.
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