Sussan Ley (Farrer, Liberal Party, Shadow Minister for Women) Share this | Link to this | Hansard source

I rise to speak on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023. This bill amends the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 to allow the Australian Organ and Tissue Donation and Transplantation Authority, DonateLife agencies, grant recipients and authorised family members to publish, disseminate or disclose information about deceased organ or tissue donors or recipients without breaching the law of the state or territory.

The purpose of the bill is to broaden the disclosure of information provisions in the act which govern the OTA and DonateLife's obtaining of consent for information on donors or recipients to be used in community awareness and educational activities. The coalition has always had a longstanding commitment to increasing the rates of organ donation in Australia to alleviate the suffering of those on the organ transplant waiting list. We understand organ and tissue donation saves and transforms lives, and we are proud of our record in overseeing an increase in donors through various targeted investments while in government.

Right now around 1,600 people in Australia are on the waitlist for transplant. Wait times can be anywhere between six months to four years. Australia's rates have improved in recent years, particularly during our time in government, with donation rates doubling between 2009 and 2019. However, the coalition understands that it's critically important to ensure we continue to encourage more people to register as donors and make transplants more accessible for the Australians who need them. We also recognise that the COVID-19 pandemic had a significant and unavoidable impact on this area, as it did many areas of the healthcare system. This saw Australia's donation and transplantation rates drop in 2020 following an emergence of COVID-19, which makes it more critical than ever to encourage donation in Australia and make up for this period of decreased accessibility. We want to work with the government to increase our organ donation rate to make sure everyone who needs one or who would benefit by organ or tissue donation can get help with a donated organ.

It is important that all Australians are aware that our instant online registration takes only a minute but can make a lifetime of difference for up to 10 people. By signing up to be organ donors, Australians are signing up to the possibility of giving someone the gift of life, and the importance of that cannot be understated. That's why we're so appreciative of the amazing work that the organ and tissue authority, DonateLife, does in improving this area in Australia. I would like to take this opportunity to recognise DonateLife for the work they do across the community, including with individuals and families affected by organ, eye or tissue donation or transplantation. I acknowledge they work in collaboration with the donate agency in each state and territory and a specialist donation medical, nursing and support staff who deliver the nationally consistent program. Their work in increasing the rates of donation and improving outcomes for Australians who require an organ or tissue transplant is critically important. Improvements in this area literally change and save lives.

Considering this bill intends to support DonateLife and other agencies in the work they do in this area, we absolutely support the intention of these amendments. We acknowledge this bill builds on the coalition's work to encourage greater rates of organ and tissue donation in Australia.

However, we do have concerns with the amount of time for consultation that has been undertaken prior to the introduction of this bill, particularly in regard to the definitions contained in the bill. Time again, we are concerned by this government's refusal to allow for appropriate levels of consultation on their legislation to follow proper process. So we have some questions that we would like to tease out in the Senate committee process.

The opposition will support the passage of this legislation through the House, and we will take the time to explore these reforms properly in the Senate.

Noting that the assistant minister at the chair had a close involvement with pharmacy in her previous work before coming to this parliament and that I am speaking on a health bill, I want to appeal to the government to recognise the plight of pharmacists across Australia at the moment in the context of what we saw in this parliament yesterday. I know that the minister about to speak on this bill is well aware of what I'm saying—

Maria Vamvakinou (Calwell, Australian Labor Party) Share this | Link to this | Hansard source

Order!

Sussan Ley (Farrer, Liberal Party, Shadow Minister for Women) Share this | Link to this | Hansard source

and I also know that she is a good person and she will listen closely to the pharmacists who visit her.

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

Thank you to the member for Cooper, the Assistant Minister for Health and Aged Care, for bringing this critically important bill to the House. It has been said before, but it is worth repeating, organ and tissue donation saves lives. It restores health and improves the quality of life for thousands of Australians every year. It's about giving your neighbour or your friend or even someone you've never met another chance at life. But last year, of the 80,000 people who died in Australian hospitals, only around 1,400 people were in a position where organ donation could be considered. In about 90 per cent of those cases, requests to families for donation were made. While there was a national consent rate of 54 per cent from families, only around 450 people became organ donors in that year. Thanks to those donors, 1,200 people were able to receive a transplant, a life-changing and life-saving gift. However, as it currently stands, around 1,800 Australians sit on the waiting list for a transplant. What is clear is that we need to do more, but, unfortunately, our organ donation system is not working as it should. This bill will help amend some of those shortfalls.

Currently each state and territory has its own human tissues act, which have diverse limitations around the disclosure of information that may identify a donor or a recipient. As a result, the Australian Organ and Tissue Authority, otherwise known as the OTA, is limited in the ways it can deliver its programs, particularly in its community awareness activities. The bill will allow DonateLife agencies, grant recipients and authorised families to publish, disseminate or disclose information without breaking the law of any state or territory. Importantly, it will maintain the provisions requiring consent from family members when disclosing such information while clarifying and extending who is classified as an authorised family member.

Organ and tissue donation is one of the greatest gifts you can give. Unfortunately, it is uncommon to be in a position to be able to donate at the end of life. That's why we need to strengthen our donation scaffold, because simple maths will tell you more potential donors means more potential donations.

Before entering parliament, I did work as a specialist mental health pharmacist at Wyong Hospital on the Central Coast of New South Wales, a community that I have come to represent. I have shared many stories in the House about my time at Wyong Hospital and the lessons that that experience has taught me, but perhaps the most important lesson that came out of my time working in a hospital is that people in need are looking for a life raft. It's a sentiment that I know many of my colleagues here well understand but is even more true for the almost 2,000 Australians waiting for a transplant.

When it comes to health, our government has inherited a neglected system. It's never been harder to find a doctor, but we're changing that, and our actions are meeting our words. Our historic investments in Medicare will triple the bulk-billing incentive. It's the largest increase in the incentive in the 40-year history of Medicare. We're making it easier for all Australians to get the care they need by growing the health workforce and supporting all our trusted health professionals to do what they're trained to do. We're standing up Medicare urgent-care clinics, with more clinics in more places. This will free up our overstretched GPs, take the pressure off hospitals and improve access to affordable care. Fifty-eight Medicare urgent-care clinics will be fully resourced and operating this year, open for longer hours and with no out-of-pocket costs for patients. And we're investing in the Australian Digital Health Agency to upgrade and modernise My Health Record, making it easier for patients and providers to use and to support the secure, safe and efficient sharing of information.

This reform to organ donation is part of our broader strategy to repair and restore our healthcare system, provide universal health care to all Australians and bring our healthcare system into the 21st century. We are making sure that our healthcare system is one that Australians can rely on, that Australians can trust. That is why I'm so pleased to support this bill.

Anne Webster (Mallee, National Party, Shadow Assistant Minister for Regional Health) Share this | Link to this | Hansard source

I rise to support the premise of the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023 and its potential to raise awareness of organ donation, although I believe more work needs to be done before the bill passes both houses. Allowing organisations such as the Organ and Tissue Authority and DonateLife to obtain consent from authorised family members of a donor or recipient to share information regarding their loved one helps to promote organ donation. The amendments allow family members to further commemorate the gift from their loved one in remembrance services. When donor families shared their story, not only is their loved one honoured for giving the gift of life but also it raises much-needed awareness that organ and tissue donation is life-saving.

Legislation of this type has already been passed at the state and territory level—for example, in November 2022 by the ACT government. It should be noted that this amendment is not intended to facilitate direct contact between donor families and organ and tissue recipients. The right of both donor families and transplant recipients to remain anonymous remains paramount. I support any measure that may further help the cause of organ donation. However, there are potential issues with the bill in its current form, particularly with the large expansion of the list of authorised family members who are able to provide consent for the disclosure of information. There is also limited detail around the process by which this consent will be sought. Once again, we are seeing a pattern emerge with this Labor government, which refuses to allow for appropriate levels of consultation on their legislation and fails to follow proper process. My colleagues and I will support the passage of this bill through the House, to then be explored in the Senate with a committee inquiry. Referring this bill to the Senate Community Affairs Legislation Committee will allow further adjustments to ensure that the bill is watertight and is as effective as possible.

I want to see this legislation be the best it can be, as organ donation is a subject that is extremely close to my own heart. My granddaughter Emmeline was the recipient of a liver transplant at the tender age of 14 months. Emmy was diagnosed six weeks after birth with biliary atresia. Without surgery, this disease cuts the life of a baby very short indeed. Emmeline underwent a simpler procedure initially, which unfortunately did not work. The only hope for her was a liver transplant. I have to say, I hope she never has to undergo another one. She was a very sick baby for the first 14 months of her life, and we dared not think about the only alternative she faced without a transplant.

The Royal Children's Hospital in Melbourne was Emmy's home for months, and the care she received was absolutely exceptional. It is impossible to speak of how grateful we are to her donor and their family for the gift of a replacement liver. It took about 24 hours for Emmy's skin colour to change from sickly yellow to vibrant white and for her eyes to change from yellow to perfectly white. It was simply extraordinary. Emmy is now a thriving, bubbly almost-10-year-old—she's not 10 yet, she tells me all the time!—who is afraid of pretty well nothing and lives life to the fullest.

It is from my granddaughter's experience that I re-established the Parliamentary Friends of Organ Donation along with my friend the member for Macarthur, Dr Mike Freelander, in 2019. We thank all members on both sides of the House who have supported this cause over the past few years.

Just recently I attended the World Transplant Games in Perth. The World Transplant Games were first held 45 years ago, and this year they returned to Australia for the first time since 2009. There were recipients and donor families from 45 countries represented in Perth, with such a powerful message to share: that organ transplant not only saves lives but allows recipients to thrive. The World Transplant Games is the world's largest event with a goal of raising awareness of organ donation.

In supporting this legislation, which aims to raise awareness, I note there is still so much work to be done with regard to organ and tissue donation. Currently, if a deceased individual is registered as a donor, their family must be informed of the donor status of their loved one, and the family's approval must be obtained to begin the donor process. At present, should the family object, the donor process is abandoned and the wishes of the deceased to save a life through organ and tissue donation cannot be fulfilled. Australia's Organ And Tissue Authority, the OTA, states that nine out of 10 families gave consent to donation when their family member was registered to be a donor and they were aware that this was the case; however, this dropped to four out of 10 families when a family had not been informed by their loved one that they wanted to be a donor.

Organ and tissue donation is a selfless, noble decision that should be not only encouraged but also upheld and carried through at the wish of the donor, as it is life-saving. According to the OTA, only around one in three people are registered to be an organ donor. And that is something that needs to change.

This is not a political issue. It is bipartisan.

Currently, in Australia, there are around 1,600 Australians on the waitlist for organ transplant. These are everyday people—mothers, fathers, children, sisters, cousins and friends. They are people just like you and me, just like our children and grandchildren. On top of the 1,600, there are more than 13,000 additional people on dialysis, many waiting for a kidney transplant.

But, while the numbers I have just highlighted seem concerning, there is cause for hope. Australians have been doing well. Since the OTA was established in 2009 to lead the national program to improve organ and tissue donation in Australia, more than 15,500 people have received life-saving organ transplants from 5,450 organ donors.

The coalition has long been a supporter of organ donation and oversaw an increase in donors through various investments and marketing when in government. In Australia, in the first 10 years of the organ donation program, the deceased donation rate grew by 122 per cent, resulting in an 81 per cent increase in people receiving an organ transplant.

How can you help? It is as simple as registering to be an organ donor, if you haven't already. Organ donation is a rare event, fortunately. Organ donation can only occur when someone dies in a hospital, as organs need to be functioning well to be transplanted. In 2021, around 1,250 people, or two per cent of those who'd died, were in a condition where organ donation could be considered.

Life is precious. You can ensure that, whatever happens to you, that could save the life of another Australian. But we must be intentional about this. I am registered. Are you? Registration is easy and can be done through donatelife.org.au. Anyone in Australia aged 16 or over can register. It takes only one minute, but that one minute can give another person a chance at life. It could be you or your loved one. And I know, you would be forever grateful. Everyone in this House should be appreciative of the work of DonateLife.

I would like to take this opportunity to recognise DonateLife for the work they do across the community, including with individuals and families affected by organ, eye and tissue donation and transplantation. I acknowledge their work in collaboration with donate agencies in every state and territory and the specialist donation medical nursing and support staff who deliver the nationally consistent program. Their work in increasing the rates of donation and improving outcomes for Australians who require an organ or tissue transplant is crucially important. Improvements in this area literally change and save lives.

Once again, I reiterate my support for the premise of this bill and the awareness it will create for organ and tissue donation. I just want to see some more work done on it before it is ready to pass into legislation; hence, while this bill will be supported through the House, there are some questions that need to be teased out in the Senate.

Peta Murphy (Dunkley, Australian Labor Party) Share this | Link to this | Hansard source

I acknowledge the member for Mallee and her commitment to organ and tissue donation. I'm sure, Member for Mallee, your niece is incredibly proud of you and what you are doing, and I would like to echo and join with the member's call for people to register to donate. It is a simple thing to do and it can change so many lives.

Before I return it to what I wanted to say, having heard the Deputy Leader of the Opposition's speech just then, I do want to say it should be beneath a deputy leader of the opposition to use a bill like this to make completely unrelated political remarks, and in particular to try to personally draw in the assistant minister who is speaking on this bill, which is about saving lives. This parliament deserves better from a deputy leader of an opposition who apparently aspires to be at least a deputy prime minister. It needs to be put on the record that the assistant minister in question, the member for Dobell, is doing an outstanding job, and she is absolutely unwavering in her commitment to increasing the health of Australians, including through access to cheaper medicine.

The Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023, as others have said, shouldn't be a matter of politics and should be bipartisan. From what I've heard from those opposite, essentially it is, with some not-unexpected criticism to come from an opposition about process. But the reason this bill goes beyond politics—or it should—is that it genuinely is about saving lives. Others have read out the statistics, but they really do matter. Last year alone, 454 organ donors resulted in 1,224 Australians receiving a life-saving organ transplant. One donor—any one person—can save the lives of up to seven other people and then help many others through eye and tissue donation. As the member for Mallee pointed out, though, it is quite a restricted situation in which your organs can be donated. You do need to pass away in a hospital with well-functioning organs, and it only equates to two per cent of people who die in hospital each year.

That's why it's so important to be registered and to make sure your family knows what your requests are. In 2022, of the 1,400 people who passed away in circumstances which meant they could be organ donors, 1,300 of those people's families were asked to consent, which always happens even if you're registered, and only 701 families said yes, leading to those 454 donors. If registration were higher and people had had conversations—because most Australians, when asked, say that they would like their organs to be donated—families would be in a much easier position to say, 'Yes, you can use my loved one's organs.' In fact, once a person is registered, nine out of 10 families say yes—nine out of 10 families. So it makes a huge difference.

DonateLife say that there are three things that we can do to increase organ and tissue donation. The first is to have specialist donation staff to support families in hospitals—staff like Jodi Vuat, who works at Frankston Hospital in my electorate. She had experience overseas, working in intensive care, helping families to consent or to understand the donation process, and came back to Australia wanting to do exactly that and still does that at Frankston Hospital to this day. So her role is to support families at the time of organ donation. She talks to them about the donation. She explains the process. She supports the hospital and the medical staff. And Jodi—who works in that field—says that people need to talk to their families about organ donation. It's really important, she says, to have the conversation with your loved ones so your family is in no doubt about your wishes. 'The more people who have registered their donation decision, the more transplant recipients we can help,' Jodi says.

Jodi is out and about in the community, raising awareness about organ and tissue donation, and one of the most common myths she encounters is that people think their organs are not good enough to be donated. People say, 'You wouldn't want my liver, because I like to have a few drinks.' Sometimes that might be the case! But it's not always the case. So don't assume that you're too old or too unhealthy to become a donor. Register, and that assessment will be done if you are in a position to be an organ donor when you pass away. That's Jodi's message.

DonateLife says (1) have donation specialist staff, (2) register on the Australian Organ Donor Register and (3) talk to your loved ones—and that is what this bill is intended to do. It will allow donor families to talk about the experience of their loved one having donated and helped the lives of others. So it's about having specialist staff, registering on the Australian Organ Donor Register and talking to your family about donation—because, as I said, only four in 10 families say yes to donation if they don't know what their loved ones wanted. They're three easy steps.

I've said in this place before that I personally am quite attracted to an opt-out system instead of an opt-in system. DonateLife suggests that the three steps I've just talked about will increase organ donation, but I still think it's worth us looking at an opt-out system so that there are more people—rather than the two per cent of deaths in hospital that can lead to donation—who can be a donor with the consent of their families. But it wouldn't take away the need to talk to your family about what you want.

The other thing I wanted to talk about in terms of donation is that, while Jodi is right—don't assume that, because you have a few drinks or you're not a spring chicken, your organs aren't fit for donation—there are people who can't donate their organs, because of diseases like metastatic cancer, to name one, but who, when they pass away, still want to be able to contribute to better medicine and the lives of others. You can donate your body to science. I've had a look at it and I looked at it again today. There isn't actually a national register for donating your body to science. How it works in Australia is that each state regulates it slightly differently, but, in effect, you have to donate your body to a specific university and go through their scheme. You have to fill in all the paperwork before you pass away to do so, and there are a number of limits to that. For example, for the University of Melbourne, you have to pass away within 40 kilometres of the university.

Donating your body to science means that your body is used to help train doctors, nurses, pharmacologists and research scientists. In some circumstances, it can be used for research. You're helping the very people that will go on to save other people's lives. I think that's an incredibly worthy thing to consider if you are in a position where you can't donate your organs and tissues to other people to use. There's probably more work to be done in that space to make it easier for people—or their loved ones—to donate their bodies to science in an effective way. That's a task for the future, but I think it is something that is absolutely worth doing.

Before I conclude, I want to talk very briefly about a young man in my electorate, Dylan Briggs. I've mentioned his friends in the parliament before. Dylan went to Frankston High School and, tragically, died riding his bike home from school in March of 2020. It was a very difficult time for everyone, during the pandemic, and then his family had to deal with the fact that this young man, in his teenage years, was killed on his way home. Dylan was an organ donor. Dylan was a teenager and he was an organ donor. He saved lives through that act as a young man.

To this very day, his friends are continuing to do all they can to honour Dylan. They set up the Chill Out & Look About initiative, which is about road safety. They've collaborated with local police to make videos and to go out and talk to young people about road safety. They designed the logo and the emblem for Chill Out & Look About as a character modelled on a photo of Dylan, where Dylan looks like he's on watch, looking out for everyone's safety. His legacy after his tragic circumstances is to donate organs so other people's lives can continue and for his friends to take up a cause to save other young people's lives on the roads. I want to congratulate Dylan's friends and give a shout-out to Dylan's mum, Sarah-Jane, who is an incredibly strong woman after the loss of her son.

Jenny Ware (Hughes, Liberal Party) Share this | Link to this | Hansard source

I rise to speak on and support the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023. While the member for Dunkley is still in the House I'll commend the comments she made, particularly in relation to us perhaps exploring an opt-out rather than an opt-in system for transplants and donations.

I will first speak about the bill briefly, and then I want to commend organ donation and registering for donation. I am registered. My husband is registered. We've had the conversation with our children. I've had the conversation with my parents as well. It is particularly important that as many Australians as possible do register for this.

The stated purpose of the bill is to amend the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 to broaden the disclosure of information provisions. I note that the minister's second reading speech said:

Currently, there are provisions in both state and territory legislation, and the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 that prohibit the sharing of some information related to deceased donors and recipients for the purposes of community awareness and other educational activities by the Organ and Tissue Authority and DonateLife agencies.

It also said the bill is intended to:

amend the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 to allow the Organ and Tissue Authority, DonateLife agencies, grant recipients and authorised family members to publish, disseminate or disclose information about deceased donors for the purposes of the Organ and Tissue Authority's community awareness, educational or commemorative activities.

There's a list of authorised family members that the bill provides will now be included, but it is stated:

… that these amendments are not intended to facilitate direct contact between donor families and organ and tissue recipients. Governments intend to protect the right of both donor families and transplant recipients to remain anonymous—

where they wish to do so. So, to the extent to which I think the clear intent of the legislation is to encourage and facilitate organ donation and transplants, I support and commend this bill.

I'll just read out some statistics. I know that many in this place have spoken of these statistics already. This is from the DonateLife website:

Organ, eye and tissue donation saves lives, restores health and improves the quality of life for thousands of Australians each year. But did you know that only 2% of people who die in hospital each year can be considered for organ donation? One organ donor can save the lives of up to 7 people and help many more through eye and tissue donation.

In 2022, there were 1,477 deceased eye donors and 276 deceased tissue donors. The numbers were slightly down in that year. For corneal transplants, which help to restore sight and vision for many people, there were 2,340 recipients in that year, which was a slight decrease. In that regard, Sandra Jowlett, a very close friend of my mother, had a corneal transplant back in about the mid-eighties, I think it was, and it has made a very big difference to her life—she was a teacher—in terms of her being able to read and carry on with her teaching profession.

Fifty-four per cent of families said yes to donation in 2022. This was when they were asked in a hospital setting. Usually it is the case that families are asked when a family member has passed away, and there are very specific circumstances when a person dies in a hospital, in an ICU or ED ward, because organs need to be functioning well to be considered for transplantation. Only around two per cent of Australians who die in hospitals meet the criteria required to be organ donors. With those numbers being so low, it is so important that we have as many Australians as possible register now to consent to become a donor.

There are currently around 1,800 Australians waitlisted for a transplant and around 14,000 additional people on dialysis, some of whom may need a kidney transplant. So, again, the need for transplants and donations is growing and is urgent. While the majority of Australians seem to support organ and tissue donation, and that's appreciated, only around one in three, or 36 per cent of Australians, is registered to be a donor. It is not difficult to register. It is quite a simple process on the DonateLife website. As I said, I commend any members of this place who have not already registered to please consider doing so and to have that conversation with their families.

In that regard, I just want to speak briefly about a good friend of mine, the mayor of Liverpool, Ned Mannoun. In 2014 he donated his kidney to his then two-year-old son, Solomon. Solomon is now 11 years of age and is a typical, healthy 11-year-old, I'm glad to report. Ned and his wife, Tina, went through a very difficult time when Solomon was born. He was very, very ill. They went through the process of ascertaining whether or not there were suitable donors, and in the end it was Ned who was the best match. He said at the time that he would do anything he could and that he would 'never give up on his little boy'. At the time when Solomon received his transplant, he had never really enjoyed a bath or a swim. He had to be very careful even drinking water; it was an agonising process. So for that little boy who is now, as I said, a robust 11-year-old, turning 12 in September of this year, that eight-hour operation was literally life-saving and life-changing. I know there will be many others in my electorate have undergone this process. For that reason, I do again commend this legislation to the extent that it will help to promote organ donation and help save lives again, particularly the life of a little two -year-old boy, as he then was.

The bill is supported by the Liberal Party. The Liberal Party has a proud tradition of supporting organ donation. To that extent, I support this bill and commend it to the House.

Sam Rae (Hawke, Australian Labor Party) Share this | Link to this | Hansard source

I begin by acknowledging your leadership and contribution in this space, Deputy Speaker Freelander. You have played a very significant role both in our caucus and in this parliament more broadly in raising awareness around this issue. Your background as a medical professional or as a doctor gives you a credibility and a knowledge that you have so generously shared with us about the opportunity of organ donation. I know that you worked with others across this parliament but you particularly deserve recognition for the work you do, and thanks from all of us who care very deeply about this issue.

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

Thank you.

Sam Rae (Hawke, Australian Labor Party) Share this | Link to this | Hansard source

There is something tragically beautiful about the concept of organ donation because it almost exclusively occurs in a circumstance in which life is lost and from that loss, like a magnificent flower blooming in an inferno, life is sustained. It is a challenge to create the momentum to sustain that life through the various complex bureaucratic and administrative processes that are required. But more importantly, in very challenging emotional circumstances, the decision-makers, usually the family who have just lost a dearly beloved loved one, have to make a decision to give life to one or many people they don't usually know and may never know. They don't necessarily have that personal connection. They have to do it right there in that moment, at the height, at the most excruciating point, of emotional anguish for themselves. Yet so many families do make a decision. Of course, they are helped when people have assisted them to make that decision by registering. We have heard a number of speakers speak about the importance of registration, of communicating clearly about one's wishes in this space.

As we know, there is such a limited number of people passing who qualify under very strict circumstances to have their organs donated. You start with a very, very small pool of people. You start with a set of families who are often put under the most intense and terrible circumstances in which they have to make a decision that is often a life-and-death decision for another human being who they usually don't and may never know. When you think about that set of circumstances, there is something wholly statistically challenging. How do you thread that needle to get an outcome? And yet, almost as if by magic, it does happen, and it happens regularly. It's not as regularly as we would like, but it does happen regularly. So many people at that critical point find enough love in themselves, enough love for the person who has passed, in order to take that love and make something so beautiful of it. I pay my absolute respect to those families that make that decision under such terrible circumstances.

We have a good organ donation system here in Australia. We have a great organ donation system here in Australia. It's one of the legacies of the last government. It has been largely, I think, supported by all sides of politics in terms of it being a matter that we don't quibble over. We all support this as a great thing for our society and, obviously, at a human level, it's something that most of us have been affected by one way or another. We know that the circumstances that present the need for organ donation are broad. Whether we know someone who has received an organ from organ donation or we know someone who is on a waiting list or could be eligible to receive an organ under a donation program, largely, we have all been affected by one or other of those circumstances.

We have a best-practice system here in Australia, but this is an opportunity to again improve upon it. This is about the further empowerment of family members. That is so important because family members are ultimately usually the decision-makers in these circumstances. They make the hardest decisions. They make the fundamental decision to donate, often. They then also make the decisions associated with the legacy of that donation and how that legacy is managed. Obviously that legacy is intricately tied to the donor themselves. This legislation empowers those families to really take advantage of that legacy, to use that for all of our society's benefit, to tell the story of the donor, to paint for those who may not intimately understand that process what it is like, to deal with it in honest terms on both its challenges and its amazing benefits and also, ultimately, fundamentally, to encourage more families to make that difficult and beautiful decision.

In telling their stories, we know that these families, who are the most powerful advocates for organ donation in our society, will create opportunity and authority. They will give permission to other families to make these decisions. Under that intense pressure of having lost a loved one, it can be very challenging to make decisions that fundamentally you cannot unmake once they have been made. If someone goes into those circumstances and they have not had a chance to think through that decision and its implications and how that decision applies particularly to the donor, the person they have lost, that can be a very challenging prospect. This allows our community to have a broader and more honest conversation that is informed by the experiences of other families so that before people in their time of peak anguish have to make that decision they have hopefully been exposed to some of the thinking and the experiences of other people in such circumstances. That is such an important component of how we raise awareness of organ donation generally but also prepare people who are going to find themselves in that circumstance to make the best possible decision they can for their loved ones, for their own families, for the person who is ultimately the donor and, indeed, for the people for whom life will be sustained off the back of that decision.

I just want to talk briefly about a dear friend of mine, someone who many people in this place knew, former senator Mehmet Tillem. Mehmet Tillem was a fierce advocate for organ donation in this place, in his time here. He spoke about it many, many times. He spoke about it in his first speech. I knew Mehmet Tillem for a long time, before he came to the Senate. He was a lifelong advocate around this issue. He believed fundamentally in the beauty of this concept. He progressed it in places outside of this parliament through his community activism, and he brought that passion here. He brought it on behalf of his own community; he brought it on behalf of his own family. Ultimately Mehmet Tillem, by circumstances of irony, ended up finding himself part of that conversation, under the most tragic of circumstances. He said in his first speech:

Organ donation, what we can do after we have passed away, is something that we can hang our hats on as a legacy to those that come after us.

After that he went on many times to speak about this issue. He remained an advocate after he left the parliament. Ultimately he believed that the best option was, as the member for Dunkley discussed earlier, an opt-out system.

I think that is the goal many of the people who are passionate about this issue would like to see us get to. There's a long pathway to get there. It's not going to happen overnight. There's a reform piece, and I think there's an ultimate ambition that we can all share that Senator Tillem advocated for very strongly. He would be extraordinarily proud of this legislation today, this bill. He would be so proud that after the best-practice work of the Rudd and Gillard Labor governments we now have an Albanese Labor government who are building upon that legacy, who are continuing to improve Australia's organ and tissue donation systems and continuing to seek sustainability in that space, to raise awareness, and to empower more families to make those decisions and ultimately to save lives through those beautiful decisions.

I also want to quickly note the member for Lara in the Victorian parliament, Ella George. She has also advocated fiercely around organ and tissue donation. She and I and Mehmet Tillem shared a very special professional and personal friendship that developed over many years. He was a mentor to both of us, and she's done some extraordinary work in this space as well.

As I said, I think Australians are fundamentally generous and kind people, we are decent people, and we understand the opportunity that organ and tissue donation presents—the creation of something beautiful out of something very dark and tragic, as is often the case. Fundamentally I think the raising of awareness, the further education of people and indeed the active pursuit by many of us to ensure that we are registered on organ and tissue donation registers and that we communicate clearly with our family members will continue to increase the rates at which organs and tissues are donated from the rather limited pool that are eligible. This legislation will help families who make that decision to continue to tell their story, to uphold the legacy of the person they have acted on behalf of as the donor—and indeed the lives they save through that very beautiful and difficult decision.

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

I thank the member for Hawke. I also would like to thank him for his very kind words. Thank you.

Mark Coulton (Parkes, Deputy-Speaker) Share this | Link to this | Hansard source

I rise today to speak about the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023, and I appreciate the contributions of those who have spoken before me. As I understand it, this bill is to allow more information, with the permission of families, to be dispersed to the public in an attempt to raise awareness around organ and tissue donation. I think it is a noble thought, but I believe that when this goes to the Senate it will be under a bit more scrutiny from a Senate committee. We do need to be very careful about some of the firewalls that are in this information. I was actually in charge of organ and tissue donation when I was a minister, and there is a group of people who really want to have information as to where the organs from their loved ones have gone. That may not be a bad thing, but it could also cause huge problems. I think the privacy of people who have received organs should be guarded completely because, for instance, if someone is identified as having a family member's organs and maybe they're living and lifestyle that that family is not comfortable with, it could lead to all sorts of issues. While I agree with the sentiment of raising awareness of this, we need to be very careful that we do protect the privacy of the recipients.

With indulgence, Deputy Speaker, on the use of props, I will show you my donor card as an organ and tissue registered donor, but, quite frankly, whether it's a donor card, ticked on a licence or whatever, none of that matters as much as talking to your family. In that desperate time when a family member is in the process of passing away, sometimes the emotion at the thought of their loved one donating their organs can become too much for families, so it's really important that you have that conversation with your family members. Regardless of whether you've got one of these cards in your wallet, your license ticked or whatever else, if your family is not aware of your wishes then that will become a problem.

One of the misconceptions is that organs can be donated by people who have passed away in all sorts of places. The number of people who passed away in a circumstance that enables the organs to be used is quite narrow. Going from the number of people that pass away that are registered organ donors down to the number of people whose organs are actually donated is quite a narrowing thing. You have to be in a hospital where there is access to a retrieval team. You have to still have your body functioning even if you are classified as having no brain function, and that does narrow it down. I know some organs can handle the person being deceased for a little while before they're taken and some need to be done at the time of death. Australia does do well. We can do better. If this legislation helps shine a light on the importance of organ donation then that's a good thing, but, once again, we must respect privacy.

I have a short anecdote about how things can work out. In February 2007, the last day of the school holidays in my home town of Warialda, eight 13-year-olds managed to talk a younger man into taking them out to the state forest on the edge of town to drive in his ute. Those 13-year-olds were all driving around, and one of them lost control of the vehicle. Of all those people in that vehicle, one girl was killed instantly. Nearly all of them were seriously injured, and two found themselves in Sydney on life support. They were 13. One of them was a ward of the state. At that stage, there was no legal way—even though her natural mother was quite prepared for her organs to be donated. Subsequently, in New South Wales, they have changed the legislation around that so that a ward of the state or someone that is under state care can do that.

The other young lad was 13. Incidentally, he'd actually talked about helping other people through donating blood and through organ donation as a matter of course in family discussions, so his parents knew that he did have a wish. Ultimately, his passing enabled other people to live, and I think it helped that family make some sense out of the tragic loss of a 13-year-old son.

It can't be planned. It can't be thought about. But, quite often, families find themselves in these circumstances very quickly and unexpectedly. That's why it's so important that there is a serious discussion with all the family so when that time comes, despite how emotionally overcome you may be, you do know what the wishes of your loved one is.

I'll be watching this pass through the Senate. I'll be hoping that they do put scrutiny onto it, because I know there are others in this country who would like to see that change but I am a firm believer that the privacy of the recipients of organs should be paramount, because we don't know exactly what sort of relationship we would end up with if the families of donors actually got to meet the recipients of their loved ones' organs. So I support this bill with the reservation that it is thoroughly scrutinised through the Senate process.

Gordon Reid (Robertson, Australian Labor Party) Share this | Link to this | Hansard source

I rise today to talk on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023. What this bill seeks to do at the end of the day is, as we've heard honourable members say today, improve and strengthen our organ donation systems, because it will empower families, it will empower loved ones, to tell the story of the donor, who they were and the life they led and to advocate for organ donation, which is so vital in our health system.

We talk a lot about organ donation and the importance of organ donation and advocacy in this space, but I want to take the House through a bit of what organ donation actually is from a clinical sense. We know that transplantation is the process of transferring an organ or part of an organ—whether that be liver, kidney, lungs—which is a graft, from one donor to another. There are different types of transplantation. We look at autologous, we look at allogeneic and we look at isograft transplantation.

I'm going to focus more on the allogeneic transplantation for this debate today. Then, on top of that, there are also requirements for the donor and the recipient to be histocompatible, so basically making sure that when the organ is donated that it's going to function and work without fear of rejection into the future.

There are indications for the transplantation of different organs. When we look at the kidneys, we look at renal transplantation. That's primarily reserved for patients with end-stage renal disease of multiple causes. We look at liver transplantation, where a liver or part of a liver can be transplanted into a patient for a multitude of reasons, whether that be hepatocellular carcinoma, fulminant hepatic failure, cirrhosis, biliary atresia and the like. The list for the hepatic transplantation is quite extensive. Looking at cardiac and heart transplantations, we see patients with end-stage heart failure and untreatable and intractable ventricular arrhythmias that cause severe debilitating suffering and also pose a significant risk for loss of life. Finally I'll touch on lung transplantation. That's particularly for patients with advanced lung disease that's now refractory to medical or surgical therapy or with cystic fibrosis.

This may seem like a long list of diseases—and it is—but each person with these conditions that I have just mentioned who requires a transplant, who requires an organ, is a patient experiencing incredible and unimaginable suffering in a lot of cases. That pain is often also felt by families, friends and carers who know that patient or know that person. Organ donation truly is the gift of life. It's not just a slogan. It allows people not just to see an improvement in their symptoms and quality of life but to celebrate their next birthday. It allows people to hug their children. It allows people to travel around and experience our beautiful country and the world. It allows people to live a long, happy, healthy life.

This leads me to be donors of organ transplantation—and their families—who give the ultimate gift. The ultimate gift here in this case is a strong and full life for another. I want to take a moment to thank every donor and their families for the incredible gift that they provide under the most challenging and often most horrendous of circumstances. It's so important that we have these conversations with our families. Everyone in this chamber should have these conversations with our families about what we want at the end of our lives and whether or not we want to be an organ donor. Furthermore, the ability to communicate the stories of those who have given that gift of life and those who have received that gift is vital to saving lives and improving the quality of life for more Australians.

Before I go on a bit more, I want to thank an incredible advocate for organ donation in my electorate of Robertson on the Central Coast, Rob Manning. He is an amazing and inspiring human being. He works and volunteers quite literally night and day to raise awareness for the importance of organ donation, because he knows, like so many others, of the importance of organ donation and how it does save lives, how it does improve symptoms and quality of life.

Australia's best-practice organ and tissue donation system is a proud legacy from former Labor governments, particularly the Rudd Labor government. Our government here is now committed to extending that legacy and improving organ donation. The bill we are talking about today, the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023, is part of that next step. It's the next stage in this process and in this journey. The bill is intended to allow authorised family members to give consent to the disclosure of information about an organ and/or tissue donor. This bill will allow the transplant authority and DonateLife staff to obtain consent from family members of a deceased donor before including information about the deceased donor in their promotional or educational activities. If that consent is given by what is deemed an authorised family member as defined in the terms of this bill, a law of a state or territory will not prevent the publication or dissemination of that information by the transplant authority or DonateLife. I will repeat that again. This is going to allow the families of organ donors who've made that brave, generous decision to say yes to organ donation in one of the most difficult times of their lives to tell their stories.

I've worked in the intensive care unit and had many a shift where I've had these conversations about organ donation with family members, and it is generally the worst night or day or time in a family member's life. This is a way that families can commemorate the gift their family member has given, which can generally improve the lives of or save up to seven people. It's going to let the families tell their stories and, in doing so, it's going to encourage the broader Australian public to do the same: to sign up to be an organ donor, to sign up to be a tissue donor and to have that important conversation. It's so important that we know what our family members want and what their wishes are, particularly at the end of their lives.

There was a member who spoke recently about privacy. This bill maintains the safeguards in relation to privacy that are vital to the functioning of our best-practice organ and tissue donation system. The bill will not facilitate direct contact between donor families and organ and tissue recipients, and all governments are committed to continuing to protect the rights of both donor families and transplant recipients who wish to remain anonymous.

I just want to reiterate that the families of donors and the donors themselves provide one of the greatest gifts—the ultimate gift—that can be given, and that is a full, strong and healthy life. I say thank you to those families and thank you to those donors. It is so important that we support them through that time. On a final note, I know I've said it once already, but I'll say it again, Rob Manning is a powerful advocate for organ and tissue donation on the Central Coast. He is literally working night and day, contacting our office nearly daily, because he knows the importance of organ donation, not just on the Central Coast but right across the country.

David Gillespie (Lyne, National Party) Share this | Link to this | Hansard source

I rise in support of the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023. I do want to follow its analysis in the Senate, as the former speaker on the bill outlined. It is an unfortunate reality that there are 14,000 Australians sitting on dialysis machines, having their bodies filtered because their kidneys have reached such a stage of decay that they can't filter all the toxins. That's just people on dialysis. Receiving a donated live kidney, either from a relative or from a donor who is matched with a person in an immunological sense, is a gift that changes that person's life instantaneously for the life of the transplant. The life of this graft, if it's well managed with all the latest immunological drugs that allow a donor's kidney to thrive and function in a recipient, means that that recipient's life can be changed for 20 or 30 years, and that's incredible.

The dilemma, though, is that there are not enough people donating. The essence of this bill is legislative change that will allow encouragement and role modelling of the dramatic effect that donation has by personalising it once authority has been obtained from the close family and relatives of someone who has been a donor or a recipient. If those families are willing to give that consent, all's well and good. It sounds a bit gory, but it has been clothed in a lot of appropriate secrecy. If the family is happy, I think it will result in much greater transplantation outcomes. To put it in perspective, 170,000 Australians annually shuffle off this mortal coil and go to a better place—at least, I hope they all do—but only 80,000 them die in hospital. To become a donor, as well as dying in hospital, a person has to be in an ICU or in a high-care situation where a transplant can occur. The really critical thing is, though, that a lot of those people who end up there haven't spoken about the possibility of becoming a donor. They haven't even thought about it, and they haven't spoken to their family about it.

In the last parliament and in the parliament before that, I was the minister looking after the Organ and Tissue Authority. I know that they've been doing fantastic work—and I would like to acknowledge here all the work they've been doing—as a result of which, over a period of 10 years up to 2019, the number of donations has doubled. Everyone thinks: 'We've got a couple of hundred thousand people who have registered. Why do we have any waiting list for organs?' That's because the reality is that only a small part of a very large pool can realistically come a donor.

I encourage all Australians to consider this. It is a very altruistic thing for you to think about. You might think: 'Well, if I've used up all my heartbeats and I'm moving on, why don't I donate a part of my body and help somebody else be liberated and have a great life without being stuck to a machine or an oxygen tank or be coughing their life away?' Their liver can be regenerated. It's a really amazing gift to be a donor. So I encourage everyone who hasn't thought about it or who hasn't already done it to do what I did a couple of years ago. I thought, 'My dodgy old body has probably got a bit of life left in it.' It took me two minutes with my Medicare card and my iPhone to go to www.donatelife.gov.au and register myself. Once you've done that, the next thing you should do is tell all your family members, 'By the way, if I suddenly end up in ICU, and I've run out of time, I've already signed up to be a donor.' That is probably the most targeted way that you can help the system.

As I said, this bill has provisions to allow a broader scope of family members to give that permission. That's the part that we have to look at closely. You can't just make it open slather, but, if that permission being granted could happen more often for those people in ICU, we would get much better figures than we have now. Last year, 1,300 families were asked whether their relative would consent to being a donor and whether they would give their consent. Unfortunately, only 701 families said yes. So a lot of those potentially life-saving organs and tissues weren't able to be utilised. Last year we had 454 donors, which was a rise of eight per cent, which is great. We had an enormous increase in the number of people who ticked that they would allow transplantation of their cornea—that's the shiny bit on the front of your eyes—for corneal diseases, which can send people virtually blind. As well as that, there were living related and unrelated donors: people who weren't dying but donated a kidney, in particular, for someone who matched their immune markers. There were many donations of hearts, lungs, pancreases, intestines and, as I said, kidneys.

I think the important thing for everyone to realise is that it is better that we have many more people on the bottom of the triangle as potential donors. Hopefully, we all live a regular life, and we don't all of a sudden end up in an ICU or on a life-support system. But if we have hundreds of thousands more people who have taken the time to let their family members know that, if a sudden accident or something happens, they have ticked the box and registered, we will get much more better outcomes.

I would also like to congratulate and thank all the people working in this space around the country, whether you are in intensive care or in the kidney unit of hospitals. My younger sister spent her career here in the ACT, negotiating and running parts of the nursing of the transplant unit here in Woden hospital. Congratulations to all the people around the country. I worked as a kidney registrar at one stage, looking after people who had been transplanted. There is a huge back office behind any one transplantation. There are clinics, blood tests and drugs and then there is keeping up to date with everything.

Australia is blessed with a wonderful health system compared to other countries, but we could always do better. Hopefully, the bill will allow more storytelling by family members because it is a powerful and inspirational story to hear—how your loved one has passed on but they passed on the gift of life to up to seven other people by ticking the box. Like I said, go to donatelife.org.au, get your Medicare card out and register, just in case that is what happens to you.

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

I hope the member for Lyne has many more heartbeats to go. I thank him for his contribution. I would like to thank everybody who spoke for their contribution. I would in particular thank the Assistant Minister for Health, Ged Kearney, who had carriage of this bill, and also the other Assistant Minister for Health and Aged Care, Emma McBride, for bringing the bill to the House.

As many of you are aware, I am a cochair of the Parliamentary Friends of Organ Donation alongside my very good friend the member for Mallee, Anne Webster. One of the most moving events I have seen in the House since my election in 2016 was when Anne spoke about her own granddaughter and the fact she had had a donated liver transplant. To see her grand-daughter running around the room as Anne was talking about this, as a healthy young girl, was absolutely fantastic and very, very moving. We have both had the privilege of co-chairing the group since 2019 and we have seen excellent progress in the space of organ donation. We worked along DonateLife, Transplant Australia, the Organ and Tissue Authority and many other dedicated organisations. We have been advocating for greater awareness and support for organ donors, their families, the organisations that do the vital work in this area, as well as recipients.

The success of organ and tissue donation in this country was greatly enhanced by the work of the Rudd Labor government in 2009. I would like to pay tribute to the present Minister for Health and Ageing, Mark Butler, who was instrumental in getting the original national program going through the Organ and Tissue Authority. Since then, there has been significant growth in donation rates, with more than 16,000 Australians receiving a life-changing organ transplant. However, the process through which an individual can become a donor is limited. Only two per cent of people who die in a hospital can be considered for organ donation, as there organs need to be in a well-functioning order and the process needs to occur within a specific time frame of death. Altogether, only 1,400 Australians were eligible to give the gift of life each year in our hospitals. Only 30 per cent of people eligible to be donors are in fact registered as donors. As the member for Lyne has explained, it is a simple matter with your Medicare card to the go to the DonateLife website and register as a donor. I encourage everyone to do so.

This is why the work of the Australian Organ and Tissue Donation and Transplantation Authority, known as the OTA, is so vitally important. Their promotional and educational activities are vital in increasing community awareness of organ and tissue donation and the fact that it really is the gift of life and in encouraging individuals to register and inform their nearest and dearest relatives of their choice. This is why this bill is so important. It will broaden disclosure information provisions in the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 to allow DonateLife agencies, grant recipients and authorised family members to publish, distribute or disclose information about deceased donors and/or recipients. Clearly there are some privacy concerns. That's why the bill does have those concerns well catered for. This is the very important work of the Organ and Tissue Authority to get people aware of the great importance of organ donation. We have had members talk about their personal experience with organ donation. I have certainly had patients of mine who have had organ donations and done extremely well, really transforming their lives and the lives of their families.

I would also like to pay tribute to the pioneers in paediatric organ donation in this country—Robert Jones in Melbourne and the recently retired Albert Shun, a paediatric surgeon at the Children's Hospital at Westmead—for their work in promoting organ donation in the paediatric population in this country.

The amendments provided by this legislation will align with the sentiment of many families who have had members become donors and also recipients, as they support the idea of increasing community awareness about donation and registration and commemorating their family member who has given the gift of life. It's hoped this bill will lead to more successful promotional campaigns, resulting in increased donor registrations.

One such very successful campaign is Jersey Day. I and my electorate staff engage with this every year. It was inspired by the gift of life that Nathan Gremmo gave to six people when he became an organ donor at the age of 13. My staff and I regulate partake in Jersey Day, which is great fun but also raises awareness about the importance of organ and tissue donation and the DonateLife network. You wear a jersey of your favourite sporting team and post about the purpose of doing it to promote organ donation in our communities.

Organ donation is something that affects all of us in different ways. Most of us have experience of people who have received or donated organs. I pay tribute to them and their families. In my work as a paediatrician, I have dealt with many patients who have benefited from organ and tissue donation. One of my former patients was one of the first long-term survivors of a liver transplant in the paediatric age group in Australia. She is doing extraordinarily well.

I've had a long involvement in this space and I've seen how attitudes and technologies have changed for the better, but there's still much more work to do. I think in particular we need a national registration program. When we have digital licences throughout the country, I am hopeful to see this register allow licences in every state to be a donor. It's a simple thing we can do for our community. I thank the assistant minister and the minister, and I thank the Organ and Tissue Authority teams and DonateLife in particular for the work that they are doing in this space. I commend this bill to the House.

Michelle Ananda-Rajah (Higgins, Australian Labor Party) Share this | Link to this | Hansard source

I have seen firsthand the life-saving gift of organ donation in action. At the Alfred, I was one cog in a machine that took patients hanging on by a thread through to transplant and into aftercare and then on to wellbeing. Lung, heart, renal and bone marrow transplants were my wheelhouse. There are two major threats that present to patients post transplant. One is rejection and the other is infection, I dealt with the latter, from bacteria, reactivating viruses and fungal infections. Infection and rejection are two interacting forces, and they are synergistic. One makes the other worse and vice versa. When the call came, it was like watching an orchestra swing into action. The surgical team did their bit; then ICU took over, always under the watchful eye of the transplant parent unit, with support teams, like the infectious diseases team stepping in from the beginning to keep those pesky bugs at bay—usually, with a cocktail of therapeutics. The attention to detail was meticulous: every vital monitored; every drug level analysed and calibrated, to walk that tightrope between therapy and toxicity. In the wards, the allied health teams took over, helping patients to walk, clear their lungs and, eventually, go home.

The transplant teams I worked with, alongside, were experts, whose only focus was to get the patient through those stormy waters and then on to health. I mostly dealt with adults; but occasionally I came across a child, because the Alfred also performs paediatric lung transplants. Our focus was on the recipient, and the only mention of the donor was a read-out at the start of the transplant with some basic medical details, cause of death and infectious diseases screening.

Behind that record, we knew, though, that there was always a grieving family who had made some pretty courageous choices. I just want them to know that those organs were treated like precious cargo. The patients were at the centre of the universe, and none of this would have been possible without fraught decisions being made through tears by families far, far away.

It was the Rudd Labor government who, in 2009, initiated a national program to increase organ donation. It falls now to the Albanese government to extend this proud Labor legacy.

Until now, disclosure regarding the details of donors has been variable throughout Australia. The Northern Territory, WA and South Australia have the most restrictive rules, preventing disclosure of information—including from family members, who authorise the donation. This has had the effect of curtailing the telling of stories—good news stories—and community awareness campaigns regarding the merits of organ donation.

Around two per cent of the 1,400 people who die in hospital are eligible to be donors. It's not a great number; but it has a multiplier effect, because one person can go on to save the lives of seven other people and to assist many more with eye or tissue donation. In 2022, there were 454 deceased organ donors. We profoundly thank their families for that decision. There are, clearly, an additional 1,000 or so people who could become donors when they die, at a time when we have waiting lists groaning with adults and children waiting for that gift of organ or tissue donation.

Some years ago, I went to theatre and I watched a kidney transplant. When the kidney was perfused—basically, when it was hooked up to the blood supply—it started to make urine, right then and there, and that urine squirted out in time with the heartbeat. In doing so, it freed that patient from the shackles of dialysis, the tyranny of dialysis.

These amendments will now allow donor recipients, family members and agencies like DonateLife to boost their public awareness campaigns around organ donation. Consent from families will always be required, meaning that privacy will always be protected. The bill will not facilitate direct contact between donor families and organ and tissue recipients. They can maintain their contact with each other anonymously, if they wish, through DonateLife. By harmonising legislative requirements on disclosure nationally, it will make it easier for families of donors to engage in promotional and educational activities—noting that, in many cases, donors live interstate.

It is important to pull back the veil over death and dying, to end the taboo. Talking about the greatest gift being organ donation is a way of commemorating life—the one that has passed and the ones that are re-emerging from the brink of despair. What could be more life-affirming? It is enormously validating for those brave families to share their stories—in the swirling miasma of grief, to know that some good was born.

It is important to have these conversations about end-of-life and being an organ donor. It's better to do this with your faculties intact and in calm weather than at three in the morning in an ICU with alarms buzzing. You can register at donatelife.gov.au, or on your Medicare Express app. It only takes a minute.

I commend this bill to the House.

Louise Miller-Frost (Boothby, Australian Labor Party) Share this | Link to this | Hansard source

The decision to donate organs is a deeply personal one, and I support organ donation. I think being able to improve or extend the life of a stranger, or many strangers, is a profound gift. It's an example of something positive coming from what are often tragic circumstances. Australia has a best-practice organ and tissue donation system. It's a proud legacy of the Rudd Labor government. This bill, the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023, aims to help increase the rate of organ donation by building on this legacy so more individuals and families can benefit from this process.

Organ and tissue donation is one of the greatest gifts you can give. As a number of previous speakers have remarked, it's actually, sadly, very uncommon for someone to be in the position of being able to donate organs or tissues at the end of life. This is because, to be considered for organ donation, donors need to pass away in hospital with well-functioning organs. Nationwide each year, only around two per cent of people, about 1,400, meet these criteria. While we have an opt-in system where people can nominate that they wish to be organ donors and about 76 per cent of Australians say they are willing to be organ donors, ultimately it is the decision of the family members at the critical time when donation is an option. Altogether, this means that our rate of organ donation is extremely low. Meanwhile, the list of people awaiting transplants grows.

If we could hear the stories of lives changed, renewed and reinvigorated by organ donation, of times of great sorrow turned into times of deep meaning, perhaps more Australians would register to be organ donors and tell their families and friends of their wishes. Perhaps a family faced with this decision at a time of great sorrow would see this as a way in which their loved one could continue to contribute a lasting legacy to the world. And that is what this bill is about.

When passed, this bill will allow the Organ and Tissue Authority and DonateLife staff to obtain consent from authorised family members for the disclosure of information about an organ or tissue donor so that that information about the deceased donor can be included in promotional and educational activities. Basically, it will allow the appropriate authorities to gain appropriate consent to enable the sharing of stories of organ donation. Currently, this is governed by different processes across different states and territories. Indeed, my home state of South Australia is one of the strictest regarding prohibiting people from disclosing information about donation, including by the family members of donors.

This bill seeks to set a unified standard across the Commonwealth, and this has been reached in consultation with all relevant state and territory ministers. Once this bill is passed, and providing consent has been given by an authorised family member as defined in the bill, the law of a state or territory will no longer prevent the publication or dissemination of the information. This will enable the family of an organ donor to commemorate the gift that their family member gave—the gift of life for up to seven people—if that is their wish. I of course acknowledge that it will not be the wish of every donor family.

These families and loved ones are making brave and generous decisions to say yes to organ donation at what is undoubtedly one of the most difficult times of their lives, and it's important that we respect the wishes of donors and of their families. It is important that we do not cause any additional stress at this distressing time. But we do also have a growing transplant waiting list, and encouraging people to focus on the very great and positive benefits that it is in their power to give is an important part of increasing organ donor rates.

For those willing, this bill will make it easier for families to tell their stories and, in doing so, encourage the broader Australian public to do the same and to understand the process and the benefits of organ donation. The ultimate aim is to encourage more Australians to sign up to be organ and tissue donors themselves. It's hoped that this more public discussion of donation and people's experiences with family members' donations will help to normalise what can be difficult conversations with loved ones about organ and tissue donation. It's hoped it will help people share their wishes with their loved ones with regard to donation.

The bill maintains important safeguards in regard to privacy for donors and donor families, and these are undeniably vital to the functioning of our best-practice organ and tissue donation system.

The bill will not facilitate direct contact between donor families and organ and tissue recipients, and all governments are committed to continuing to protect the rights of both donor families and transplant recipients who wish to remain anonymous. Donor families and those who have received a transplant can continue to contact each other anonymously through their jurisdictional DonateLife agency. What the bill will do is harmonise legislative requirements on disclosure nationally, supporting increased community awareness about donation and registration, and allowing donor families to tell their powerful stories and commemorate their loved ones in remembrance services.

I pay tribute to the Assistant Minister for Health Ged Kearney for her work to bring about this legislation, and I encourage anyone listening now, if they wish, to get their phone out and sign up to be an organ or tissue donor today. You can do it quickly online at donatelife.gov.au or with just three taps on your Medicare Express Plus app. I encourage everyone to have the sometimes difficult conversation with loved about your wishes. Organ donation can change lives—not just the lives of the recipient but also their family and their friends. I personally know of a recipient in my electorate who without receiving a kidney would have left a widow and two teenaged children. Receiving the donation has changed the lives of that entire family. They were on the list for some time, and it was a very blessed day when they actually got the call. I'd encourage those listening to sign themselves up and have that conversation with their family so that their wishes are known and, hopefully, respected should the worst happen. I commend the bill to the House.

Dan Repacholi (Hunter, Australian Labor Party) Share this | Link to this | Hansard source

I rise today to contribute my support for the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023. Life is the one gift every person on this earth has been given. Some people have the chance to get this gift twice. The giver of this gift is an organ donor, and because of those generous people who want to make an impact to others, even after they have passed, thousands of Australians have been given a second chance at life. Being an organ and tissue donor truly is one of the greatest gifts that you can give.

While many Australians are already signed up to be an organ donor, it is, unfortunately, uncommon for someone to be in a position to be able to donate once they've passed. This is because donors need to pass away in the hospital with well-functioning organs to be considered for organ donation. This means two per cent or 1,400 people who die in a hospital each year have their organs or tissue donated. This is why we can never have enough people sign up to be an organ or tissue donor.

Labor has a proud legacy of ensuring Australia has the best health service in the world. It was the Rudd government that implemented our current best practice organ and tissue donation system. The Albanese government wants to keep this legacy going by improving donation rates even further, and this bill is vital to being able to achieve this. This bill takes practical steps to help more people to be donors and to see more lives saved in this process. This bill will allow authorised family members to give consent to the disclosure of information about an organ and tissue donor, and it will allow the OTA and DonateLife staff to obtain consent from an extended list of family members of a deceased donor before including information about that deceased donor in their promotional and educational activities. This is important because in order to get more people signed up as organ donors we need to make sure there is more information and education about the issues. At the same time, it is very important that the donor and their families are respected.

It is a tough time when a loved one passes, but, hopefully, knowing that their loved one's brave decision to be an organ and tissue donor could save up to seven lives will give some peace to the grieving family. This bill allows families to commemorate the gift that their loved one gave to save the life of others. It will allow families to share their stories, and, importantly, this will make more Australians take notice and hopefully sign up to be an organ and tissue donor themselves and have the important conversation with their loved ones about their wishes. Their loved one's organs may have saved seven lives, but their story could have helped save many more.

Each state and territory has its own human tissue act which has varying limitations around disclosure of information that might identify an organ or tissue donor or a transplant recipient. The OTA and the Commonwealth-funded state and territory DonateLife agencies are limited in the ways they can deliver the national organ and tissue donation and organ transplantation program, and their community awareness activities. This bill will help tidy that up and make it easier to run education and awareness programs, which will be important in encouraging more and more Australians, from all states and territories, to become organ and tissue donors.

Privacy is vital to the functioning of our best-practice organ and tissue donation system, and this bill will make sure that this privacy is maintained. The bill will not facilitate direct contact between donor families and organ or tissue recipients. We understand that, whether you are receiving or donating an organ, it is a scary time in your life and in the lives of those around you, and some may wish to remain anonymous. This bill will make sure that all governments are committed to continuing to protect the rights of both donor families and transplant recipients who wish to remain anonymous. But being anonymous doesn't mean that you don't have gratitude towards those who have given you an organ or an interest in those who have received an organ from your loved one. So donor families and those who have received a transplant can continue to contact each other anonymously through their DonateLife agencies. This will allow families to see the impacts of their loved one's decision, and the recipients to express their gratitude.

The simple fact is that transplants save lives, and today I want to share the incredible story of someone in my electorate whose life was saved because they were able to get a transplant. His name is Liam Woods, and I can definitely say he's one of my mates as well. Eight years ago, Liam received a transplant after being diagnosed with cancer. Today Liam is doing great. He has beaten cancer, and he recently had the honour of representing our country. Liam pulled on the green and gold at the World Transplant Games in Perth in April, representing this country in football. While he was over there, he added a few more sports to his schedule, representing Australia in track athletics, in 100- and 200-metre events, and even played in the basketball team as well. Liam got to experience the Australian team dinner and was able to walk across the bridge in Perth and on to Optus Stadium, which he said gave him goosebumps. He said, 'To put the green and gold on and play against other countries is something I thought I'd never ever do,' and it's something that he will never ever forget. Liam excelled in these games, scoring a hat-trick in the final which helped Australia take home the gold, beating Italy 6-1. Not only has he recovered but he has a new chance to lead his life to the fullest. He is playing sport and playing at representative level.

The World Transplant Games is an incredible event. This year, there were 1,500 competitors from 46 countries, all together, as Liam said, to celebrate the gift of life. And the Aussies did us proud, finishing second overall and taking home 67 gold medals. Well done to everyone involved. Liam said that it was amazing to hear what some people had gone through to be able to participate in these games and that it was inspiring to meet others from Australia and also around the world who had gone through bone marrow, organ and tissue transplants. These games show how amazing and how valuable transplants are and why it is so important that everyone puts their name down to be an organ, blood and tissue donor.

Liam is a strong advocate for encouraging people to become donors. Liam's message to people is to either register to be an organ, tissue or blood donor or just read some of the inspirational stories of people that have had a second chance at life. Liam wants to go to the next games, which will be held in Dresden, Germany in 2025, to try to retain his gold medal. Liam, congratulations on all that you have achieved competing for Australia at the World Transplant Games and thank you for being such a strong voice on such an important issue. The Hunter is proud of you. Best of luck in 2025.

I want to use this opportunity to encourage everyone in the chamber and everyone back at home in the Hunter and also around Australia to become a donor. Stories like Liam's show how valuable organ donors are. You will truly be giving someone a second chance at a happy, healthy and long life. It is quick and easy to do. It only takes one minute online at DonateLife.gov.au, or three taps on your Medicare Express Plus app, so what are you waiting for? This is your chance to give someone life and leave an impact that will stay with someone for the rest of their life, long after you have gone.

This bill does the important and necessary job of harmonising the legislative requirements on disclosure nationally. This will help to create much-needed increased community awareness about donation and registration and assist donor families to tell their powerful stories and commemorate their loved ones in remembrance services. This bill will help more stories to be told and to be heard by many, many people. The more awareness being spread through their stories, the more Australians who will themselves put their hands up to be able to give the same gift. This bill will help ensure that more people have access to transplants, and the gift of an organ and tissue is a gift of life. I commend this bill to the House.

Brian Mitchell (Lyons, Australian Labor Party) Share this | Link to this | Hansard source

Organ and tissue donation saves lives. It's an act of selflessness and compassion. It's a gift that has within it the power to give somebody else a second chance at life, to restore hope to those grappling with debilitating illness and to alleviate the suffering of individuals and their loved ones. By donating organs or tissue, Australians can provide life-saving opportunities and extend the lives of transplant recipients, enabling them to pursue their dreams and aspirations or simply to spend more time with those that they love. The efforts undertaken by the Organ and Tissue Authority in state and territory DonateLife agencies are instrumental in increasing the number of registered organ and tissue donors and informing Australians about the critical importance of sharing their wishes regarding donation with their own loved ones.

I'm proud to say Tasmania is leading the country with donation outcomes, according to DonateLife Tasmania. It's a proud achievement that has only been made achievable by the generosity of organ donors and their families. In 2022, 57 people received a life-saving transplant in Tasmania. That's 57 lives saved and 57 families who get to enjoy more time with their loved ones. But there's still more work to do to grow donation and transplantation outcomes in Tasmania and nationally. With around 1,800 Australians currently on the waitlist for an organ transplant, I encourage everyone to register to donate their organs and to communicate this wish with their families.

The OTA, alongside state and territory DonateLife agencies, plays a pivotal role in raising awareness, facilitating education and promoting the importance of registering as an organ and tissue donor. Their tireless efforts aim to bridge the gap between the limited supply of organs and tissues and the ever-growing demand for life-saving transplants. Community awareness campaigns, educational initiatives and public engagement activities are crucial to fostering a culture of donation and encouraging individuals to make their wishes known to loved ones.

The importance of organ donation can never be overstated. Tasmanian woman Maddie Bonney is currently in Melbourne where she requires around-the-clock support as she waits for a matching organ donor. Maddie was diagnosed with pulmonary arterial hypertension five years ago and is on the waitlist to receive a double lung transplant. With two young children, Maddie is desperate for an organ donor match so she can get home to Tasmania and spend time with her kids, watching them grow. She's waiting for organs to be made available to her, which, of course, requires somebody else to be lost, but those people are lost anyway. Imagine if they make their organs available to her, so that she can live with her kids. That would be a real gift, indeed.

Each state and territory in Australia has its own human tissue act. The legislation is not uniform and imposes limits on the information that can be disclosed to donation recipients or the family of an organ donor. It can often prevent recipients and the families of donors from connecting—something that can be quite heartfelt and important for both parties. Unfortunately, the Northern Territory, South Australia and Western Australia have some of the most restrictive laws, preventing any individual from disclosing such information even if there is full consent and a desire for information to be shared. This can make it difficult for the OTA and DonateLife agencies across Australia to deliver services more effectively, especially through providing community awareness activities and events which involve donor families.

To address this issue, the proposed bill aims to expand the disclosure of information provisions in the OTA act. It seeks to permit DonateLife agencies, grant recipients and authorised family members to publish, disseminate or disclose information about deceased donors and recipients, subject to the consent of the respective parties, without infringing upon the laws of individual states or territories. It is important to stress that the bill upholds the need for family consent before the disclosure of information, ensuring the wishes and privacy of the organ donor's family are always respected. Furthermore it clarifies and extends the definition of 'authorised family member' to encompass a broader range of individuals who can provide consent in this regard.

These amendments align with the sentiment expressed by many families whose loved ones become donors. They support the idea of raising community awareness about donation and registration, as well as commemorating loved ones through remembrance services. For many, knowing that their loved one has saved others' lives is a thing to treasure. This bill signifies an opportunity to align legislative requirements on disclosure nationally, promoting greater consistency and coherence in the organ and tissue donation process. By harmonising these provisions, we can enhance community awareness, encourage public engagement and inspire individuals to register as organ and tissue donors. Through the sharing of personal stories and the commemoration of donors' selflessness, we can create a culture that values and prioritises organ and tissue donation, ultimately saving more lives and alleviating the suffering of those in need.

Organ and tissue donation is an extraordinary act of generosity, but few might realise that the opportunity to donate is rare, as donors must die in hospital with viable organs, accounting for only two per cent of the 1,400 people who die in hospitals annually. Australia's organ and tissue donation system has come a long way thanks to the pioneering efforts of the Rudd Labor government. It's viewed by many as being best practice internationally and is seen as a proud legacy of the Rudd government. Through the Australian Organ and Tissue Donation and Transplantation Authority Act 2008, the Organ and Tissue Authority was established as a statutory authority entrusted with the responsibility of coordinating a nationally cohesive approach to organ and tissue donation and transplantation.

The Albanese Labor government remains committed to extending this legacy and improving donation rates, and this bill represents the next crucial step in our collective effort. By allowing authorised family members to give consent for the disclosure of information, this bill empowers the OTA and DonateLife staff to include information about deceased donors in promotional and educational activities. This enables the families of organ donors, who made that decision to say yes to organ donation during one of the most difficult times of their lives, to commemorate the gift that their family member gave, the gift of life for up to seven people.

This bill grants donor families the opportunity to share their stories. Through these stories, they can inspire the broader Australian public to follow suit, encouraging them to register as organ and tissue donors themselves and to engage in crucial conversations with loved ones about their wishes.

I want to emphasise again that this bill maintains essential safeguards to protect privacy. It's a cornerstone of our organ and tissue donation system. It does not facilitate direct contact between donor families and organ and tissue recipients, ensuring the rights of both parties who wish to remain anonymous. Donor families and transplant recipients can continue to contact each other anonymously through their jurisdictional DonateLife agency.

What this bill does is harmonise legislative requirements on disclosure across the nation. It supports increased community awareness about donation registration, empowering donor families to share their powerful stories and commemorate their loved ones through remembrance services.

I want to take a moment to recognise and applaud the brave and compassionate families who have made the courageous decision to say yes to organ and tissue donation during what are some of the most challenging moments of their lives. As their loved ones are often dying in hospital before them, they are asked to extend the hope of life to others. And, for those who are able to consider the wellbeing of strangers as their own loved one lives their final moments, I say thank you. Their unwavering generosity and resilience allows others to live and spend time with their loved ones.

There is an immense impact that organ and tissue donation can have on individuals, families and communities. By supporting the bill, we can empower family members to commemorate their loved one's gift of life, share their powerful stories and inspire others to register as donors. Together, we can embolden a society that values the preciousness of life, the transformative power of the donation and the enduring legacy of compassion.

I'm proud to be an organ donor. I carry the card with me everywhere I go. I understand that if something should happen to me, I have the opportunity to help others. And, importantly, my family is aware of my wishes. It's not left to them in those final moments to have to decide what I want; they know what I want.

In closing, I urge every person listening to consider organ donation. Grab your phones, sign up to be an organ and tissue donor. It takes just a minute to register online at DonateLife.org.au or three taps on your Express Plus Medicare app. By doing so, you can be part of the committee that saves lives, brings hope to those in need and creates a lasting legacy of compassion and generosity. I commend the bill to the House.

Susan Templeman (Macquarie, Australian Labor Party) Share this | Link to this | Hansard source

There are probably a lot of us in this chamber who have registered as organ donors, but there's probably not a lot of us who will ever be able to be organ donors, because very few people actually can be when they die. A person has to die in hospital in specific circumstances in an intensive care or emergency department as the organs still need to be functioning well to be considered for transplantation. So only about two per cent of people who die in Australian hospitals meet the criteria to be an organ donor.

That's why this legislation is so key. The more we can encourage people whose relative or family member has been able to donate, the more we can encourage them to talk about it, where they are comfortable to do so, to share the message of what that organ donation meant to them. Then, the more likely we are to build up the numbers so that there is a greater number of people who are willing to do this and whose families know they are willing to do it.

In terms of the actual numbers, in 2022 around 1,400 people of the 80,000 people who died in Australian hospitals died in a way where organ donation could be considered. Requests to families for donation were made in 1,300 cases. Of these, 700 families said yes. That is about 54 per cent, and that's the data we're hoping to shift so that more people say they're willing and more families are in a position to say yes when they're asked.

This bill allows authorised family members to give consent to the disclosure of information about an organ and tissue donor. Around the country, all sorts of different rules make that easier or harder in different places. But this will allow the staff of, for instance, DonateLife or the OTA to obtain consent from an extended list of family members of a deceased donor before including information about the donor in their promotional and educational activities. As someone who has worked with a lot of not-for-profit organisations and who knows that the human face of an issue is one of the most powerful ways to spread the word, I can absolutely see the benefit in this legislation. It makes me wonder why we didn't have it sooner—but I'm delighted we're working through this now.

I think it's important to stress that while the privacy components of this bill will make it easier for family members to give consent, there are still very strict privacy rules around organ donation. This bill maintains all the safeguards in regard to privacy that are vital to the functioning of the best-practice organ and tissue donation system that we can have. It will not facilitate direct contact between donor families and organ and tissue recipients, and all governments are committed to continuing to protect the rights of both donor families and transplant recipients who wish to remain anonymous.

So, what this really does is give people choice. It's part of several things we're doing in our first year in government to lift awareness and rates of registration. I note that the minister recently announced that six groups will share nearly $400,000 in community awareness grants to boost awareness about organ and tissue donation, particularly to the 16- to 25-year-old age group, who have the lowest organ and tissue donor registration rates across the nation. Only 10 per cent of the 3.2 million eligible young adults are currently registered. So, if you're listening to this speech right now and you've got your phone handy, it's a perfect opportunity to jump onto DonateLife and register your interest in being an organ and tissue donor. Even easier, go to your Express Plus Medicare app and tap it three times, and you'll be there. In the big scheme of things, this piece of legislation is not massive, but it actually could make a real difference to a lot of people, as could your decision to register as an organ tissue donor. I commend the bill to the House.

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

I rise to speak on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023. Donating an organ or tissue is one of the greatest gifts we can give to others. Now, I don't want to become one of those MPs who quote themselves—'Well done, Graham; well done!' Nevertheless, I talked about organ donation in my first speech, way back in February 2008. Back then my friend Debbie Duddridge had died just a few months earlier, on 29 October 2007, right in the middle of the election campaign, while waiting for a set of lungs. Her partner, Margie Kruger, and I did law together, and I know how devastating that loss was for Debbie's family and for Margie. I know that one person deciding to sign up to be a donor could change the lives of up to seven people. Seven Debbie Duddridges might have been smiling rather than seven Margie Krugers grieving. By donating, we can literally change lives by saving lives. It is hard to think of any other way you could make that much of a great and direct difference to someone—somebody who you, the donor, will never meet or interact with. This is the ultimate selfless gesture, where the self is donated.

Unfortunately, in some Australian states, unless a person expressly gives permission for the sharing of their donation story, it will never be made public. The point of telling these wonderful stories is that they end up saving lives and encouraging thousands of others to do the same. I told that Debbie Duddridge story—a sad story—way back in 2008, to inspire others to donate. But imagine if Debbie were here to tell a different version of her story—and I know that Debbie would be a much better recruiter than me and a much better storyteller than me.

We live in a healthy, wealthy country, and most Australians live long and fulfilling lives. And this is a good thing. However, it also means that they have few organ donation options. The barnacles of age and accompanying illnesses mean that few senior bodies have much to donate back to the herd. To become an actual donor relies on many factors, and the circumstances all have to align at the right time.

Firstly, for instance, a donor with well-functioning organs would need to pass away in a hospital. They would need this prior medical supervision just to be considered as a donor. This is even before medical professionals assess a medical history to rule their organs in or out—to rule on which organs they may or may not be able to donate. For example, an alcoholic's liver probably wouldn't be suitable, because it would've been a bit overworked. I'm not making a comment on anyone at all. But, on the other hand, perhaps, the heart from someone in the modern Liberal Party would be almost totally unused!

I assure those present, I wrote this speech a long time ago, before I knew who was in the chamber!

The second factor that doctors have to consider is the health of the needed organs. Are they are viable donations? These specific medical requirements mean that there are only around 1,400 deceased Australians each year who meet these medical criteria.

When you think about everything that has to fall into line for a possible donation, it is reasonable to think that, in the tragic and vast majority of occasions, these situations are unexpected; the spinner of the year seems to work quite haphazardly, thankfully. Consequently, the person would have never thought about having to give official permission to have their donation story shared. Obviously, this is because they didn't expect that their time on this earth would be up so soon. Obviously, many of us embrace Yossarian's words from Joseph Heller's magnificent Catch-22: we're going to live forever, or die in the attempt! No doubt, publication permission would have been given if they'd been told beforehand that their time was approaching, but that's not how the person who spins the wheel works. How immortal is it to share the story of possibly saving the lives of seven other people—seven people with families and loved ones, who, through the donor's generosity, will be able to spend more time with their families and friends. So, as a result, the Organ and Tissue Authority and Commonwealth-funded state and territory DonateLife agencies are limited in the ways they can deliver the national organ and tissue donation and transplantation program. This particularly affects their community awareness activities and events involving donor families.

This bill seeks to broaden the disclosure of information provisions in the Australian Organ and Tissue Donation and Transplantation Authority Act to allow DonateLife agencies, grant recipients and authorised family members to publish, disseminate or disclose information about deceased donors and recipients without breaching the law of a state or territory. The bill maintains important provisions requiring the consent of the family of an organ donor prior to the disclosure of information, and clarifies and extends who is classified as an authorised family member for the purposes of providing this consent. This will enable the families of organ donors who've made the brave and generous decision to say 'yes' to organ donation at one of the most difficult times of their life to commemorate the gift that their family member or loved one gave: the gift of life to up to seven people. It will let these families tell their stories of their loved one and, in so doing, encourage the broader Australian public to do the same thing, whether it is to simply sign up to be an organ and tissue donor or to have that important conversation with your loved ones about your wishes when you pass. Knowing is so important, as it means there is no second-guessing what your loved one would have wanted. Making sure their wishes are met sometimes involves the conflict between a love partner and a family saying, 'This is what the person would have wanted.' Having worked in wills and estates, I find it amazing what can happen after someone passes away. Knowing is so important. Having that clear and concise information is just one less thing to have to think about at one of the most difficult times of our life.

The bill also maintains the safeguards in regard to privacy that are vital to the functioning of our best practice organ and tissue donation system. I might add that Australia's best practice organ and tissue donation system is a proud legacy of the Rudd Labor government. I mention Rudd in particular because Prime Minister Rudd actually had had interaction with this and was quite passionate about it. It was a government that invested in programs to boost awareness, equip hospitals and provide better access to care and information for families of potential donors facing certain death. It is this Albanese Labor government that is committed to extending this legacy and improving donation rates. This bill is the next step in this important work.

In regard to maintaining safeguards, of course some donor families and recipients would prefer to stay anonymous. This bill will not facilitate direct contact between donor families and organ and tissue recipients. Every state and territory is committed to continuing to protect the rights of donor families and transplant recipients who wish to remain anonymous. Donor families and those who have received a transplant can continue to contact each other anonymously through their jurisdictional DonateLife agency. This will not change. What this bill will do is harmonise legislative requirements on disclosure nationally. It will help support increased community awareness about donation and registration and allow donor families to tell their powerful stories and commemorate their loved one in remembrance services. How special those left behind will feel, knowing that their loved one, even after death, has helped others to live. The legacy of life that continues after death is so powerful.

I encourage everyone to do those two things today: firstly, talk to your family and make clear your wishes about donation and ask your family members what their wishes are as well; and secondly, jump on donatelife.gov.au and register as a donor.

I commend this bill to the House.

Josh Wilson (Fremantle, Australian Labor Party) Share this | Link to this | Hansard source

I'm also glad to speak in support of the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023 and the changes that it makes. There's no doubt that this is an area of health policy, program and practice in Australia that needs to be improved because of the remarkable benefits that come from making donated organs available to people who are very, very unwell.

As others have noted, we can do more to lift the rates of donation and, therefore, the incredible outcomes that can be delivered. In 2022, 80,000 Australians passed away, and only 1,400 of those were eligible to be donors. That's only two per cent. Out of those 1,400, in 54 per cent of those cases, families agreed with the deceased person's wishes and allowed them to become a donor. That rate of 54 per cent did decrease slightly from 2021 to 2022. That is something of an indication of what my colleagues have said about the difference that will occur when, in addition to people making the choice to be an organ donor, they also have that conversation with their family and friends, but specifically with their family, so that there is family consent. When you consider that those 700 organ donors translated into 1,200 recipients, if we could lift the rate of family consent for those people who have already made that very generous decision to be organ donors, then we will start to see life-saving opportunities provided to people who might otherwise very quickly find themselves literally at death's door.

It wasn't that long ago I had an opportunity to catch up with Robert Manning. Robert Manning will be known to the member for Dobell. I heard of Robert Manning because of his interest in the Tuggerah Lakes community project. Robert Manning was an organ donor recipient. He's a person who has one of those incredible stories about how he got very ill very quickly and benefited from organ donation. His illness would probably otherwise have meant the end of his life. All of us have heard stories like that. All of us know of the life-changing, life-saving reality that comes with organ donation if that's what you need to survive.

I first became interested in donation because of something that was pioneered in Fremantle: the paired live kidney exchange. That obviously involves live donors, so it's not a matter of consent with respect to people who lose their lives. It is a fascinating example of how we can make changes like the ones made in this bill, which improve the opportunities for these kinds of 21st century medical miracles to be delivered. With kidney donation people can donate one of their kidneys to someone who needs it. There are often family members who are prepared to do that, but only 30 per cent of people who are prepared to donate to a family member—a brother, a sister or even a spouse—are compatible. So even if you have a willing live donor it doesn't necessarily solve the problem for the person who needs that kidney. The genius of the paired live kidney exchange program is that you might have a pair of family members—two brothers, for instance. One brother is prepared to donate a kidney to the brother who needs it but isn't compatible. That kidney will be donated to the beneficiary in an opposite pairing that will be matched up. A fellow in Fremantle, Professor Paolo Ferrari, got that going more than a decade ago, and I believe it's now an Australia-New Zealand joint program that helps match up compatible donors with people who need kidneys.

The strongest message that I—and I think everybody in this debate—would give is for people to think very carefully about how remarkable it is for you to decide to be an organ donor. You can literally give the gift of life and health to another human being. I don't think there is any greater gift you could give. That's step one. Step two is making sure your family understands that that's your wish so they are able to consent to that if that comes.

I'll be the first to put my hand up and say I'm not the most technologically advanced person. I didn't know that you could go through the Express Plus Medicare app and make that decision with a few clicks on your smartphone. I've been a card-carrying organ donor since some time ago. I think that people could take the time today—amongst checking their emails, their calendar, social media or the news—to go and download the Express Plus Medicare app, if they don't already have it, and make that choice. I will when I get out of here.

When you consider that there were effectively only 700 donors across Australia in the 2022 calendar year, we could see that rate of organ donation lift quite considerably. Every time that occurs there's the potential for seven recipients to benefit. I don't think it is hard to imagine. If you had a family member who was experiencing organ failure, being in that situation, knowing that if someone had been prepared to take the time to think about what they would like their legacy to be and made what I think is a really sensible act of human generosity, to choose to be an organ donor—don't leave it at that, because the family consent part is a vital piece of the equation. Talk to and encourage family members to consider it themselves. Talk with them sufficiently for them to understand that that is what you would like and that that is what you want one of your legacies to be at the time of your passing: that another member of the Australian community, and their family, will have their life changed. I can only imagine what it must be like for a person who is waiting, knowing that their own mortal clock is ticking fast, to get the phone call and to be told: 'Today is the day. There is a liver or another organ on which your life depends that is available.' It would be one of those weight-lifting, burden-lifting experiences. I can only imagine, though. Obviously nobody wants to be in that position.

This is something that both sides of politics have worked on consistently over time. As I say, there were changes made under the former Labor government. I'm glad that it was a focus of the coalition before. The minister and the assistant minister are carrying this work forward. I think this change will improve awareness and efficiency within the way the program works. I am hopeful that, through these changes, the way we talk about them and endorse them, we actually get that community participation in something that is life-changing and life-saving. On that basis, I'm very happy to speak in support of the bill.

Ged Kearney (Cooper, Australian Labor Party, Assistant Minister for Health and Aged Care) Share this | Link to this | Hansard source

The Australian Organ and Tissue Donation and Transplantation Authority leads the implementation of the Australian government's national program to increase organ and tissue donation and transplantation, working with DonateLife agencies in all states and territories. Critical to the work of the Organ And Tissue Authority and DonateLife agencies are promotional and educational activities to increase community awareness of organ and tissue donation issues, and to encourage people to register on the Australian Organ Donor Register and talk to their family about donation. These activities include commemorative services; educational and community awareness materials, such as posters and flyers; and social media content, which often include the sharing of experiences by individuals and families involved in organ and tissue donation and transplantation.

Currently, there are provisions in state and territory legislation and in the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 that prohibit the sharing of some information related to deceased donors and recipients. As a result, the Organ and Tissue Authority and Commonwealth funded state and territory DonateLife agencies are limited in the ways they can deliver the national organ and tissue donation and transplantation program and, in particular, community awareness, educational activities and commemorative events for donor families. The Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023 will amend the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 to allow the Organ and Tissue Authority, DonateLife agencies, grant recipients and authorised family members to publish, disseminate or disclose information about deceased donors or recipients for the purposes of the Organ and Tissue Authority's community awareness, educational or commemorative activities.

These changes will allow the Organ and Tissue Authority and DonateLife agencies to obtain consent for this information to be shared from an extended list of family members of donors and recipients. These legislative amendments align with the sentiment that many donor families wish to commemorate their family member in remembrance services. Some also want to raise community awareness about donation and transplantation. The ability to communicate the stories of those who have given the gift of life and of those who have received this is vital to saving lives and improving the quality of life for more Australians. These changes will support the Organ and Tissue Authority and DonateLife agencies in more effectively achieving these goals. I thank all the members for their contributions to the debate on this bill.

Question agreed to.

Bill read a second time.