Ms Catherine King (Ballarat, Australian Labor Party, Shadow Minister for Infrastructure, Transport and Regional Development) Share this | Link to this | Hansard source

I rise to speak on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021, and I signal I'll be moving a second reading amendment on behalf of the member for Hindmarsh, who will take up the longer slot in this debate, being the shadow minister for health. I think that amendment is being circulated in my name as we speak.

Organ and tissue donation is something that's very dear to my heart. When I was the parliamentary secretary for health, I had responsibility for this area, and it's an area I feel very strongly about. It's a very important issue. It's in fact a life-and-death issue. We don't get to debate those very often in this place, but it's an important one. This bill reforms the governance structure of the Australian Organ and Tissue Donation and Transplantation Authority, and it's following advice from a well-respected former member of this place, Dr Mal Washer, who is currently the chair of the Organ and Tissue Authority board, to enable the board to have a more strategic and advisory focus.

This bill will transition the role of accountable authority from the board back to the CEO and replace the existing governance board with an advisory board under the Australian Organ and Tissue Donation and Transplantation Authority Act 2018. It undoes the changes the government brought in in 2017, taking the board back to the model that was introduced by Labor in 2008. We were a bit unclear as to why the government changed the way in which the board functioned. We thought we had it right when we established the authority and the way in which the board operated as an advisory body when we introduced this, but the government obviously thought differently. It now has changed its mind, and we're grateful for that.

Organ and tissue donation is a great Labor legacy, and we're very pleased that it is something that the government has continued with. It was initiated under the leadership of former Prime Minister Kevin Rudd, someone who also feels very strongly, and continues to contribute to the policy debate, around this issue. As I said, we don't really know why the government changed the governance structures back in 2017, but we welcome the government's now choosing to act on the board's own view about the governance of organ and tissue donation, as represented by advice by the chair.

This advice conforms with Labor's view that non-corporate Commonwealth entities like the Organ and Tissue Authority should have a governance structure that allows for the CEO, who actually runs the organisation and is accountable for its functioning, to be the accountable entity in a legal sense, all the while being guided by an advisory board that focuses on the strategic direction of the authority and can take the time and effort to actually look at what is happening to organ and tissue donation in Australia and look at how there might be improvements in the strategic direction, rather than getting into the minutiae of running the authority.

We did have it right back in 2018, because organ and tissue donation, as I said, is a very proud legacy of the former Labor government. National reforms introduced by Labor in government, and the creation of DonateLife in 2009, saw organ and tissue donation rates increase by almost 40 per cent in less than five years. One organ and tissue donation can transform the lives of 10 or more people. We welcome this change, and we encourage all Australians to consider their eligibility to register as an organ donor and to also, importantly, have that conversation with your family members that it is what you want to do. Tell them that is what you want to do if they are ever in the circumstance where they might be asked whether you wish to donate your organs. That conversation is incredibly important.

While this change is welcome, what it does highlight really strongly is the difference between a progressive Labor government focused on health reform versus a government that is not a reforming government but rather a managing government—and sometimes not managing that well either. It shows what you can have when you have a government that wants to focus on health reform. It also focuses on the failings you have when you have a government that clearly should be doing far more to improve health and to take us through the pandemic.

The crisis we are in at the moment is a health crisis. Our current lockdowns are driven by the government's failure to do the two jobs that it had: rolling out the vaccine and fixing hotel quarantine. It is, to borrow the Treasurer's phrase, 'One of the biggest policy failures in living memory'. That's what we are seeing writ large when it comes to health at the moment. Eighteen months into the pandemic, we should be doing far better than we are. If we remember, right back to the start of the rollout, the coalition promised four million vaccinations by the end of March, six million by 10 May, all aged-care and disability workers vaccinated by Easter, and every Australian vaccinated by October. Not one of those targets has been met. Far from being the envy of the world, the government is now being held up internationally as an example of what not to do. We're an example of how countries like ours, who got complacent about our early success of keeping the virus out, are now struggling because of failed vaccine rollouts and leaders whose hubris led them to believe the vaccine rollout was not a race.

This bill on organ and tissue donation is very welcome, but, again, it shows the contrast between a progressive, reforming government that is interested in trying to address the problems of health reform and a government that can't even manage a vaccine rollout program. That being said, on behalf of the member for Hindmarsh, I move:

That all words after "That" be omitted with a view to substituting the following words:

"whilst not declining to give the bill a second reading, the House urges the Government to deliver better health outcomes for all Australians, including through better management of the COVID-19 pandemic".

Andrew Wallace (Fisher, Liberal Party) Share this | Link to this | Hansard source

Is the amendment seconded?

Madeleine King (Brand, Australian Labor Party, Shadow Minister for Trade) Share this | Link to this | Hansard source

It is, and I reserve my right to speak.

Andrew Wallace (Fisher, Liberal Party) Share this | Link to this | Hansard source

The original question was that this bill be now read a second time. To this the honourable member for Ballarat has moved as an amendment that all words after 'That' be omitted with a view to substituting other words. If it suits the House I'll state the question in the form that the amendment be disagreed to.

Katie Allen (Higgins, Liberal Party) Share this | Link to this | Hansard source

I rise to speak on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021, which seeks to transition the role of accountable authority under the PGPA Act from the board back to the CEO, and replace the existing governance board with an advisory board under the Australian Organ and Tissue Donation and Transplantation Authority Act 2008.

This bill will enable the board to have a more strategic and advisory role. It is an important technical change to ensure improved governance and strategic intent of what is a very important authority. There will be no change to existing roles and functions of the Organ and Tissue Authority, and the advisory board will continue to have access to the responsible minister and be free to focus on strategic activities. The governance changes will align the Organ and Tissue Authority with the governance structures of most other non-corporate Commonwealth entities.

To put aside this amendment, I would like to speak further about the importance of organ donation. Organ donation is a gift. It's a gift of life for thousands of Australians. Indeed, it's a gift of life for millions of people worldwide. Organ donation is a very sensitive topic, and it is very prone to changes in the environment. In 2020 we saw a big drop in organ recipients. It was a disappointing decrease from the previous year and it was due to COVID-19. It was actually a result of a decrease in the number of organ donors.

Hospitals have faced so many challenges through COVID, and we know that the health system has had to pivot significantly through what has been a dreadful pandemic over the last 18 months. Hospitals have faced logistical challenges, including flight reductions and border closures, and we've heard some really devastating stories of patients not being able to travel across borders to capital cities that have been closer to them, and they have had difficult outcomes from a health point of view as a result. This has basically affected the national program of organ donation throughout the year. There have been precautionary steps taken with the transport sector, suspending adult kidney and pancreas transplant programs, and this occurred from March to May in 2020, and there have been difficulties during rolling lockdowns subsequently. Elective surgery, including kidney transplants, was suspended from late March last year. I'd just like to say that Australian doctors and nurses have been working conscientiously to ensure the impact of these events on patients is minimised, and they should be congratulated. It's a very difficult place to be working when you have the gift of a life being shortened by the fact that COVID has had such a significant impact.

One of the bigger issues for Australia is that organ donation and consent for organ donation need to be addressed even further. In Australia, we know that 58 per cent of families consent to donation when asked in a hospital setting. It can be a tragic time when you're beside the bed of a loved one, going through those agonising last few days and hours caring for them, and then after the event having to make an agonising decision about whether the organs of your deceased loved one will be the gift of life for others. Australian families understand that gift and they have given over and over again. But only 34 per cent of Australians are registered on the Australian Organ Donor Register, and we must make organ donation a national priority to increase awareness of the benefits of organ donation for all Australians.

There are different types of consenting processes around the world, and there is a hot debate in the medical research literature about what is the best form of consent. Of course, ethics, culture, a faith based approach—all of those issues play into the culture of a country and the approach a country may take to different forms of consenting processes. There is what is called hard versus soft consent. When we talk about different forms of consenting, we talk about 'opt in' or 'opt out'. In Australia currently we have an opt-in situation. As I said before, when asked whether they would like to have their deceased one's organs donated, Australians over and over again do consent in the vast majority of cases, but that number could be increased. It's very important that everyone in Australia think about having a conversation with a family member. That's because you never know, unfortunately, if you will end up being in that situation. What we do know is that, over and over again, patients' requests for their end of life can be overturned by their family members, who are obviously distressed and in a very difficult situation, having to make decisions. Sometimes the overturning of that decision can mean the loss of a precious donor organ. So there is the option of an opt-in system, which Australia currently has, but there's also the option of a system that is based on opting out. An opt-out system across a nation can have a spectrum of policy. There is a hard consent system, where organs would be removed after death if the individual has not opted out, and most people don't support that form of utilitarian approach. It has an authoritarian concept and it's something that most countries would not agree to. But there is also a soft consent system for opting out, where there is an assumption of favour of donation, a presumption that most people would be willing to give if they were given the opportunity but that the final say rests with the families and loved ones themselves.

I believe that Australia is ready for consideration of an opt-out situation, the presumption that people may like to be considered for organ donation, as long as their loved ones and family are apprised of the situation and their views. We know, unfortunately, that fewer than one in five Australians have had these sorts of discussions with their family. If there is one thing I would urge Australians to do, it is to have that conversation. The one thing about opt-out is it gives Australians an opportunity to put this conversation front and centre.

Spain is a country that has had an opt-out system for many years. In fact, it is the leader in organ donations and has been for the past 26 years. There are arguments about why that is the case. Certainly when it first introduced its opt-out processes they took a while for the organ donation rates to increase but it is now the world leader in organ donation, with 46 organ donors per million people in their country. We've also seen other countries move to an opt-out situation and have the success of Spain. England last year changed to the opt-out system under the newly introduced Max's law. As I said before, Australia currently has an opt-in system whereby an individual must record their consent with the Australian Organ Donor Register. Australia currently sees roughly half the frequency of organ donation that Spain has.

In my former life I was a paediatrician. I trained in a fellowship program in the United States in a liver transplant program, so I've had a lot of professional experience of being involved in liver transplantation. In fact, the University of Chicago, where I trained, was the pre-eminent paediatric liver transplant unit in the world and undertook 65 liver transplants each and every year. In fact, our unit had undertaken the world's youngest liver transplant on a 12-week-old baby who had a neonatal form of liver failure. It was an incredibly young liver transplantation. Subsequently, I have also worked in Australia and I know how awful it is when a family is waiting desperately with their child for a precious organ so that they can help their child to live a more normal life.

Research suggests that opt-out countries see 32 per cent more organ donors. If that was to happen in Australia, a 32 per cent increase would translate to 148 more organ donors saving and transforming the lives of roughly 405 Australians. I believe Australia's ready for a conversation to consider opt-out going forward, with hundreds of Australians privy to the life-saving benefits of such a scheme. Australia is a world leader in successful organ transplant outcomes. We clearly have the skills in our medical industry but we always need more willing donors.

The key to Spain's success may not simply be the opt-out system; it may also lie in the fact that they employ medically-qualified donor coordinators. An essential aspect of the system is that intensive care specialists who are busy working to save lives should not be given the job of obtaining the consent of families for organ donation. It is very, very important that an independent, medically qualified, third party is engaged in the process of obtaining consent. We know that in Spain there have been a large amount of resources directed to ensuring that every hospital has a medically qualified donor coordinator. This has had significant positive effects not only in Spain but in other countries too, such as Italy, Portugal and Croatia, which have also followed suit, with each of these countries privy to larger donor rates than Australia.

There is no doubt that the adeptness of the Australian medical industry has led to a very successful organ transplant program. We know that we have some of the best surgeons in the world but we need Australians to put up their hand as organ donors and speak to their families regarding their wishes. We need Australians to think not just of the prospect of being an organ donor but the prospect of being an organ recipient. An organ transplantation can be needed at any time, even for the healthiest of individuals. With only one in three adult Australians registered to donate organs but 69 per cent believing it is important to do so, now is the time to have the conversation on how we can increase donor rates. Australians are the ones to do it.

In Australia the different states and territories have different forms of legislation and different types of services, and there is a huge range of donor registration rates across Australia. The Northern Territory, unfortunately, sits at the lowest rate at 14 per cent, but I am pleased to say South Australia has the highest rate at 71 per cent. South Australia is the only state where individuals can register to be a donor on their driver's licence. I really welcome this initiative. I think this is a really great way to make sure people think about this form of care and it's likely why South Australia has the highest donation rate. If this initiative is introduced to other states, it has the powerful potential to influence life for so many Australians.

I'd like to tell the story of Jim, a recipient of an organ transplant. He became jaundiced overnight and within a week he'd been flown by air ambulance to the Royal Prince Alfred Hospital. Doctors were confused about how a healthy 49-year-old man suddenly became life-threateningly ill and why his liver was shrinking and dying. Within three days his major organs began to shut down and he was going to pass away if he did not receive a liver soon. Luckily, a liver was available and he pulled through after a massive operation that was life-saving.

This story is just one example out of over a thousand every year in Australia where someone has benefited from the gift of life of an organ transplant. I had many similar experiences in the United States when I was a fellow in the liver transplant unit. A 12-year-old girl who had non-A to non-E hepatitis was waiting desperately for an organ transplantation. She had a number of days to live; she was in intensive care. Her uncle from Texas, who had not spoken to her family for many years, came forward after there was a public request to try to save this young girl's life. He became what is called a 'living organ donor'—he donated part of his liver to his niece. That was an incredible story and an incredible experience, watching a child's life be saved by her uncle who she hadn't seen for many years. It was a reuniting story for that family as well. We can speak about numbers as much as we like, but in the end we are dealing with human beings and every single human is important.

To conclude, this is an incredibly important area of medicine. It is life transforming. It can be a difficult conversation for people to have, but I encourage those listening to understand that the gift of organ donation is an incredible one and that it's treated with the utmost respect and the dignity it deserves by the medical health professionals doing the work and by the families receiving the outcome. As the national advertising campaign slogan goes, 'Become an organ donor—heaven knows we need them.' I commend the bill to the House.

Mark Butler (Hindmarsh, Australian Labor Party, Deputy Manager of Opposition Business in the House of Representatives) Share this | Link to this | Hansard source

[by video link] It was a great pleasure to listen to the remarks of the member for Higgins on this Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021. It is a reasonably technical bill and I'll talk about its provisions in due course, but this is an area of policy about which I am also passionate, having had the great privilege of being the Parliamentary Secretary for Health and having executive responsibility for the introduction of this authority and the general DonateLife program that the member for Higgins talked about and the member for Ballarat before her.

I think it's fair to say that Commonwealth involvement in this area would simply not have happened without the passion of former Prime Minister Kevin Rudd, who himself is a recipient of donor tissue. He listened to the advocacy and campaigning of a range of different groups across Australia—groups like Gift of Life and many others—who for years had been drawing attention to the comparatively low levels of organ donation in Australia, particularly, frankly, in our two largest states. The member for Higgins talked about the state variability in organ donation rates. At the time when our government was introducing the DonateLife program, back in about 2009, the rates were even more variable than they currently are. Literally hundreds of Australians every year were missing out on life-saving transplants, which meant, tragically, that many of them died not having received the transplants that could have saved and then extended their lives.

Back in 2009, when we introduced the DonateLife program—we launched it, I remember, at the Lodge that year—rates in Australia were stuck at a little over 200 donations per year. That was a rate of less than 10 donations per million, which is the way in which we measure organ donation rates around the world. The member for Higgins mentioned that Spain has for many years now been the global leader in organ donation rates. We were running at about 10 per million; Spain is running at about 46 per million. For every organ donor, potentially three, four or even five lives can be saved through different organs being donated to people awaiting transplants. I talked to many of these people at the time, and what that meant was that literally hundreds of Australians were waiting for the phone call with their bags packed. They were ready to travel to hospital at a minute's notice to receive that life-saving transplant, but, frankly, because of our comparatively very low rates of organ donation, for so many that call never came.

Our program, the DonateLife program, which was supported by the then opposition, now the Liberal Party government, was relatively simple. It was evidence based. It was informed by a good understanding about what worked overseas and, frankly, what was working in my state, the state of South Australia, where the organ donation rate, even back then, was more than double the national average. It was substantially more than double the organ donation rate of the larger states of New South Wales and Victoria.

The member for Higgins talked about some of those elements, and I want to go through the key ones as I saw them at the time and as we saw them as a government. The member for Higgins will understand that the most important element is the clinical culture in hospitals. What we found in South Australia was that, over time, a culture had developed in our major hospitals—particularly in the intensive care units, which are really the centre of this question. There was a very clear culture that, whenever there was a tragic passing of a patient, it was part of the process of dealing with that death for any opportunity for organ donation and, consequently, transplants to be actively pursued by the clinicians. I remember talking to clinicians here in South Australia about their experience as younger clinicians, as trainee doctors. If the older supervising clinician came into work of a morning when there had been a tragic death the night before and organ donation had not happened, the younger clinician would be interrogated, and interrogated severely, about whether the opportunity for organ donation had been pursued.

I think all of us understand how delicate that can be and how it is just another responsibility or duty to add onto the very long list of duties our clinicians already have. But what was clear was that the culture of our hospitals was a very key determinant of the different organ donation rates that we saw at that time across Australia. Once we'd identified the cultural issue, though, hospitals needed to have clinical staff whose job it was to deal with this challenge. From memory, the most substantial share of the money—about $151 million, I think—was committed by the Rudd government to one of the central programs. It went into employing donor nurses so that there would be nurses at our major teaching hospitals whose job it would be to pursue these opportunities. Our major tertiary hospitals are where these opportunities for organ donation tend to arise. They were trained in having these very delicate conversations with the grieving families—families who'd only in recent minutes and hours learned of the death of their loved one. Having that conversation, as I think we all can imagine, is an incredibly delicate task, and employing donor nurses so that there were people specifically allocated, specifically trained to do it, was a central element to the DonateLife program that we put in place.

A range of other parts of that program have, I think, stood the test of time. I'm sure it's incredibly gratifying to everyone from groups like Gift of Life and many others who advocated for this type of program for so long to see the really substantial improvement in organ donation rates over the last decade. I will talk, as the member for Higgins did, about the decline in 2020. That was clearly driven by the pressure on our hospital systems imposed by COVID. But, if you look at the 2019 rates, instead of having organ donation pretty steady at around 220 per year across the country—less than 10 per million people—the donor rate has climbed to 550. That is substantially more than double the 2019 rate, which had been stuck at 220.

Given that every organ donor, on average, allows for three or four different organ transplants, that meant hundreds and hundreds of people every year, leading into 2019, were able to receive the gift of life—the extraordinary opportunity to receive a donated organ that would potentially extend their life for years and years or even decades. Organ donation saves hundreds of lives every year.

One of the highlights of my increasingly long career in this parliament was, as the parliamentary secretary for health, being at the opening of the 2009 Transplant Games in the Gold Coast. This is an international sporting event that, not unlike the Paralympics that are underway now, is only open to recipients of organ transplants. Sitting in that hall in the Gold Coast, as representatives of every country across our planet walked in behind their flag to represent their country over the coming weeks of that games, was an extraordinary experience. Every single one of those people, of all ages and backgrounds, had been given the gift of life through an utter tragedy such as a car accident or some other life-ending event.

One of the extraordinary things about those games—and we see this at DonateLife events around the country all the time—was the presence of donor families, the families of those whom they had lost, families who were feeling a small measure of relief to their grief in the knowledge that, through their loved one's death, someone else had gained the opportunity to continue to live and, in some cases, a number of people had gained the opportunity to continue to live. This is an extraordinary gift. Obviously subject to consent and privacy arrangements and such like, the bringing together of grieving donor families with transplant recipients, who are so extraordinary grateful for that gift of life and the opportunity to have some certainty and some opportunity to keep on living, is really one of the most beautiful moments that any of us as members of parliament can get to witness.

I want to commend the work of the authority, of the donor nurses, of clinicians across the country who do this incredibly important work on top of all the other things Australia's world-leading conditions do each and every day in our hospital systems and beyond. It really is a great inspiration to us all. But, as the member for Higgins pointed out, there is still much more we can do. I don't propose to follow the member for Higgins into the debate about an opt-in versus an opt-out system, except to say that I learned early on in my time as the Parliamentary Secretary for Health—not being a clinician myself, obviously—that that debate is not so simple. That debate is not as simple as we would like to believe as we step into it. I was told by many clinicians about their very deep concerns about what would arise with grieving next of kin were an opt-out system in place. The clinicians would then need to deal with next of kin who might have very strong views about organ donation, but a process had simply not been gone through by that family with the person who had lost their life to formally opt out of the system. So I'm not entirely convinced about this. Of course, all of these things should never be closed debates. There's always the opportunity to continue to debate them, but I am not convinced about that question right now.

I do, though, think that the one area where we have not made the progress we would have liked to have seen back in 2009 is on the question of family consent rates. I remember, I think when we launched the DonateLife program, that the rate of consent by next of kin to organ donation was around 57 per cent. That means that, when grieving next of kin were asked by hospital clinicians whether they would consent to their loved one who had just passed away donating organs, about 57 per cent of family members gave their consent. The member for Higgins said that the rate was 58 per cent. I've seen a figure of 62 per cent. Whichever of those two is right, it demonstrates that, after more than a decade of this DonateLife program being in place, that consent rate has not shifted at all substantially. It's important to point out that, when the Australian community is surveyed about general support for organ donation as a concept, the overwhelming bulk of Australians show their support. The overwhelming bulk—85 per cent, 90 per cent or even more—of Australians say that, as a concept, they support organ donation. There is this structural gap of 30 per cent or more of Australians who appear to support organ donation as a general concept but aren't giving consent at the time when the issue really becomes a live issue and consent is being requested, so there is much more work for us to do here.

I think this generally reflects a lack of open discussion about death too often in the Australian community. We are often not comfortable talking about death. You see that reflected in survey work about organ donation. I also remember similar figures arising out of survey work that Palliative Care Australia and other groups like that do about end-of-life planning. Only about half of Australians will have had a discussion with their partner about their wishes for the way in which they spend their last hours or days, the degree to which they want to continue to receive treatment and other end-of-life or palliative care related issues. Only about 25 per cent of Australians will have had that discussion with their children, and similarly low rates will have had that discussion openly with their clinicians, their treating general practitioners and the like. So there is, I think, a general challenge for us to lift the rates of open discussion—difficult discussion, sensitive discussion, no doubt—that Australians have about these end-of-life issues. If people support organ donation as a general concept, at some point it would be good for us all to have discussions with our next of kin about our views, about whether, in the tragic event that we find ourselves in that position, we would like to see our organs donated. The research shows that when grieving next of kin are clear about their loved one's wishes they carry those wishes out. The research also shows—through published research I've read in the Medical Journal of Australia and such like—that when grieving next of kin understand their loved one's wishes, whether they were about organ donation or palliative care and such like, and feel confident that they are able to see those wishes carried out, their levels of grief and distress are substantially reduced and their level of mental distress at the loss of their loved one is substantially reduced. This is important work for us to continue to do.

I reflect and echo the call by the member for Ballarat—and the member for Higgins has made the same call—for people to have that discussion in their families and for people to register as organ donors, whatever the system might be. I renewed my driver's licence in South Australia in the last several days; as the member for Higgins pointed out, we have had that system in place for many, many years in my state. But there are other registers, including the DonateLife register, that we all want to encourage people to consider using, to ensure it's not simply left to your loved ones to try to glean what your wishes might have been, to ensure your wishes are clearly articulated through a register and through an open discussion that you have had with your loved ones.

Coming to this bill, which, as I pointed out in my opening remarks, is a somewhat technocratic bill, I have to admit to not completely understanding why the government has put us all in this position in the first place. When we set this body up, the Australian Organ and Tissue Donation and Transplantation Authority, we set it up in the very usual way in which non-corporate Commonwealth entities are set up—that is, with an advisory board that would provide broad strategic guidance to the entity, in this case the authority, and for the accountable entity to be the chief executive officer. This is the way in which non-corporate Commonwealth entities almost exclusively operate. That was, at least as far as I remember, a very successful model. Our first chair, as I recall—the chair I had the privilege of working with—was Sam Chisholm, the very-well-known media identity, who, tragically, we lost a couple of years ago. Sam, himself a double lung transplant recipient, was a passionate chair who understood that the role of the board—and he had some great members on that board, including David Koch, who had long been an advocate for improved organ donation rates in Australia, and many others as well, including clinicians—was to provide broad strategic guidance to the work of the authority, and that it was the role of the chief executive officer to manage the day-to-day work and ensure that the myriad legal obligations that all our authorities have were being carried out. That's why the chief executive officer was the accountable entity under the different pieces of Commonwealth legislation.

In 2017, for reasons I frankly don't understand, the government decided to change that and make the board the accountable entity. I'm not aware of another non-corporate Commonwealth entity that has the advisory board as the accountable entity instead of the chief executive officer, but that was the decision made at the time during Malcolm Turnbull's prime ministership. The new chair, who is well known to so many of us in the parliament, is Dr Mal Washer, who was 'the doctor of the House' before his retirement and then the election of the member for Macarthur, the member for Higgins and some others. Mal Washer was a well-loved figure across the aisle of the House. He is now the chair of the advisory board, and, as I understand it, has provided advice to the government to revert to the original position, which was that the chief executive officer be the accountable entity—a position that is seen as pretty standard practice across the range of non-corporate Commonwealth entities that make up part of our government.

The Labor opposition supports this bill—subject to the second reading amendment, which I thank the member for Ballarat for moving in my absence from the chamber over this fortnight. I commend the bill to the House, but I particularly commend the work of the authority and the clinicians who are employed under the DonateLife program, and those clinicians who work elsewhere through the health system who have seen our organ donation rates and, consequently, our transplant rates climb so dramatically over the last 10 years.

There is still much to do; we can see those rates climb even higher and see that gift of life given to more people, but the work over the last 10 years has been a credit to our country.

Damian Drum (Nicholls, National Party) Share this | Link to this | Hansard source

I will speak in support of the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021. I'm delighted to have the opportunity to speak about this bill. I've had a long history with organ donation, going back to my days in state parliament where I was actively involved in an annual cricket match that was played by the Australian organ recipient cricket team. They would travel Australia and raise awareness of this incredible issue. They were a fantastic bunch of men, accompanied by their partners and wives, travelling around Australia and raising awareness of this incredibly important issue.

I think it's true that most Australians would have no idea as to the very small percentage of Australians who are actually able to donate their organs. I don't think Australians realise that you actually have to die in very specific circumstances for your organs to be able to be used. People hear all the time that so-and-so got a new organ or that so-and-so had an organ transplant and is now much healthier than they were, but they don't hear the stories behind the stories. People have spoken to me and said that they have been prepped and taken into hospital two, three or four times for a serious heart-lung transplant or a kidney transplant. These are incredibly important and dangerous procedures, and doctors have to be incredibly choosy and picky as to the efficacy of the donor organ about to be used. That's why we have this situation where it's quite difficult for the organs to match up with the recipient's body.

I think this is an area where the conversation in the chamber is very much about how we move with this type of legislation here, which is predominantly about governance, who is responsible and who will take that accountability within the authority—moving away from the board and over to the CEO. I think that's a really positive move. But, ultimately, what everybody in this chamber and around Australia wants is to see how we can continue this path of increasing numbers of organ donations here in Australia. The old chestnut is: 'Do we continue with the opt-in model, or should we pull everybody into the system and give everyone in Australia the opportunity to opt out?' As the previous speaker said, this debate is not as simple as it sounds. I'm certainly still in favour of changing over to an opt-out process, but I do understand that it's not as simple as it sounds.

In my electorate of Nicholls I've been lucky enough to meet Allan Turner. Allan is the father of Zadee Turner. Of course, people will see a lot of Australians wearing very multicoloured shoelaces once a year as a memento of Zadee's Rainbow Foundation. Zadee died quite a few years ago, in 2004, as a seven-year-old. Her family made that very, very tough decision to donate her organs and she was able to improve the lives or save the lives of seven other Australians. Allan Turner has kept the memory of Zadee very much at the forefront by continuing to raise money and donate that money to a whole range of different foundations and charities. I want to commend Allan for the work that he has done. It's a very, very tough space.

It is also promising to see that whilst we haven't reached the levels that we would like to have reached we are on the increase, and that is something that we should be very, very proud of. Again, once it was explained to me, it was very simple to understand this issue. That is, people who are killed in car accidents, their body is without oxygen, and, once your body is without oxygen for a minute, your organs deteriorate to a stage where they cannot be transplanted—they cannot be donated. If we think about this, we understand the vast majority of us pass away outside of a hospital setting, where we would be able to effectively have our body on life support, donate our organs and then pass away. So it is this very, very rare situation, where we have such low numbers of organs and organs that are donated within Australia.

I think this bill is hoping to see better governance. As a result of the review that was undertaken under the charter of the board, it was indicated that we needed to increase the time and capacity to contribute to the strategic direction if we're going to get these results that we want. You just can't effectively hope and pray that we get something; it's got to have a strategic plan, and certainly this transition in authority is going to help with that strategy of increasing our numbers and getting a better result than what we currently have.

I think, right now, every year, we walk around the lake here—Lake Burley Griffin. We put on our white and pink T-shirts and we pledge our support. But I think it's everybody's role and responsibility to continue to promote the fact that this is critical. We have so many people that are very sick in our society who would be incredible beneficiaries of a donated organ. Like the last speaker, and I'm sure like all speakers, we need to use our positions to encourage people to have that conversation with their loved ones. So: break up the senseless banter around the dinner table and have a serious conversation about dying and about death, about is it okay with everybody around the table to more or less have that conversation about whether we are going to be happy, whether that's our express wish in death, to donate our organs. I think the more of those conversations that Australians can have around the dinner table, or wherever—it doesn't have to be at dinnertime—then the better chance we have of Australia as a nation being able to increase our numbers of donors.

We used to have the sticker on our licence. For whatever reason, that has been taken away. We now have an independent register where we can go online and fill out that registration, which is something that I have done previously. So, whilst my wishes are very, very clear with my children, I just hope that everyone else in Australia has had a similar conversation.

With that, I wish this passage a speedy pathway through the parliament. It seems to have the support of the parliament. I wish everybody out there would step up to the job and make sure that we do create a situation where there are more organs available for transplant, more donors putting their hand up, so that more Australians can live a healthier and more fulfilling life. Thank you.

Sharon Bird (Cunningham, Australian Labor Party) Share this | Link to this | Hansard source

[by video link] This is my first opportunity to participate in the virtual parliament, so I want to extend my thanks to the staff of the parliament who've made this possible. I couldn't miss the opportunity to speak on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021. As has been indicated by previous speakers, it is a fairly technical bill, about the roles of the board and the CEO of the Organ and Tissue Donation and Transplantation Authority, in effect going back to those roles that were established at the time the federal Labor government created the authority. So I'm certainly happy to support the bill. But, in the context of the bill, I want to talk about why it is such an important issue and why I feel very passionate and take every opportunity I can to support a more effective national organ donation scheme.

For many, many years in my local area I have been inspired by an amazing young woman called Jessica Sparks. Jessica is a double lung transplant recipient and a simply amazing young woman. She has put so much energy and passion into establishing her own organisation, called Sparking Life, to boost organ and tissue donation in Australia. She just inspires so many people. In 2013 she was the Wollongong Young Citizen of the Year, and in 2016 she received the University of Wollongong's top student prize, known as the Chancellor Robert Hope Medal. Jessica really got the message out. She does such a great job in letting people know what a difference organ donation can make to the lives of people who desperately need it. Jessica is a cystic fibrosis sufferer and her voice really moves people to understand the significance of this issue. I want to pay tribute to the great work Jessica does in promoting the importance of organ donation.

Recently, sadly, I've talked to the House about another great local, Keith Caldwell. I spoke to the House at the time because the community here and Keith's family had lost him. He died suddenly. He was a leading president, participant—I couldn't list all the roles that Keith had with the surf lifesaving movement. He was also a former police officer. I want to talk about Keith today as an organ donor. With the indulgence of the House, I think it couldn't be put any better than in the words of Keith's own family. Many people contributing to this debate have talked about how important it is, at that point of decision, for family members to know what your wishes were. Keith's family spoke to the Sydney Local Health District this year, for DonateLife Week, recognising how important organ donation is. His wife, Maria, is another wonderful champion in our community, and she said to the local health district:

After 45 years of life saving, he is now a lifesaver. He was saving lives right to the end.

Keith, who was 60 at the time, donated his liver, kidneys and musculoskeletal tissue, including heart valves and other heart tissue, bones, tendons, ligaments and skin. As a result, two people on the nation's transplant waiting list received a new kidney, while another received his liver but, sadly, later had to have another transplant. His musculoskeletal tissue was stored with the New South Wales Tissue Bank. His heart and lungs were also suitable for transplantation but, because of his rare blood type, a match wasn't found, sadly. Maria said:

The process to donate organs and tissue is very thorough and, at a time of deep sadness, could be considered very confronting. But, with the possibility of saving other people from the heartache we as a family were going through, it gave us hope and comfort.

Almost 80,000 people die in Australian hospitals each year, but only about two per cent can be considered for organ donation. Some of the previous speakers have made the point that it requires very specific circumstances. However, there are many people waiting to be the recipient of those gifts that people make by organ donation. Last year the Sydney Local Health District reported 463 deceased donors and their families saved the lives of 1,270 recipients. This year, there are 1,650 people waiting for a transplant.

I'm registered with the Australian Organ Donor Register. There are about seven million Australians who have done so, but there are about another 13 million aged over 16 who are eligible to register. As with all other speakers in this debate, I would strongly encourage them to look to do so. Maria Caldwell described Keith's organ donation as the greatest gift of all, and indeed it was. She said this was Keith's last act of selflessness and giving to the community. Please, please, please: have this discussion with your loved ones; let them know your wishes.

The two things I'm going to reiterate, as have other speakers in this debate, are for people to go to the DonateLife website—it doesn't take more than a minute or so to register, and then you will be on that official register—and then have the conversation with your family. Consider the situation they will be in if they have to make this decision, and how much easier it will be for them to have a very clear view of what your wishes are because you had that conversation. From these two inspiring Wollongong people, an organ donation donor and recipient—Keith and Jess—nothing could put it more clearly than their words that this is something that our communities really must do. I know during COVID it's tough, and we are having so many tough conversations as it is, but I really encourage people to have this one and to make sure that their views are known.

In the time left to me, I just want to make some points about the second reading amendment moved by the Labor shadow minister and the need to deliver better health outcomes, particularly during the COVID pandemic. I just want to talk to the House for a few minutes about the fact that, when I have conversations with local health practitioners in all different roles, I'm so conscious of the enormous stress they are under at this point in time. As my colleague the member for Macarthur said yesterday, they don't describe themselves as heroes; they just get on and do the job that they love doing. But we should all remember the enormous strain and pressure that they are under. I know they seek to look after their own on mental health and wellbeing and their colleagues' mental health and wellbeing, but I think it is important, as a community, that we give them that support too.

In that context, I want to endorse the words the member for Macarthur said in the parliament yesterday—that leaders in communities, and in particular those of us who have the enormous privilege to sit in this federal parliament, should not be spreading misinformation or scaremongering. We should be endorsing the national health messages and we should be encouraging our communities to comply with those messages in the interests of everybody.

Our health practitioners, our nurses, our doctors, our specialists, the cleaners, the admin staff and all of those people who do exhausting work, day in, day out, whether it's in our hospitals, GP clinics, testing clinics or vaccination hubs—in all of the places where they are out and about, working for our benefit as a community right now—do not need to have their work undermined by people who should know better who are spreading fear and misinformation and encouraging disobedience in our community. It's very sad today to see stories in the media about health professionals saying that they've even had falling-outs within their own families, with people caught up in these very unhelpful conspiracy theories that are being circulated. Indeed, there's a story today in the local media about a health worker at a clinic being physically attacked by somebody who was not wearing a mask. It's just very distressing.

So, on that broader issue about supporting our health workers during the pandemic, all of us should think very, very carefully about the enormous privilege we have when we open our mouths to speak as community leaders and we should understand that there's a great responsibility that comes with that, and we should be ensuring that we are backing in our amazing health workers across the nation.

I endorse the bill and I endorse the amendment moved by the shadow minister.

Anne Webster (Mallee, National Party) Share this | Link to this | Hansard source

[by video link] Mr Deputy Speaker Goodenough, it's a pleasure to join you virtually to speak on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021. Organ and tissue donation is a subject that is very close to my heart. In my first speech in Parliament House, I spoke about the importance of organ and tissue donation and the experience of my granddaughter, Emmeline. Emmy was the recipient of a liver transplant at the age of just 14 months. This gift of life is the reason Emmy is still with us today, eight years later. We're also grateful to her donor and their family for her gift of life. Organ donation is an experience of our shared humanity—when, out of terrible loss, hope is delivered through the life it can give. Our Emmy's life was possible through the gift of a grieving family. We hope that the gift will go some way towards helping to comfort them in their grief over the years ahead.

Shane is an inspiring young man in my electorate of Mallee. Shane has experienced two double-lung transplants. I had the privilege of visiting him at the Alfred hospital in Melbourne just prior to his second surgery. Today, he is a healthy life coach and has married his sweetheart. How life-changing is organ and tissue donation? It's why I was inspired to establish and co-chair the Parliamentary Friends of Organ Donation with my colleague the member for Macarthur, Dr Mike Freelander. The parliamentary friends group for organ donation was established to raise awareness of organ donation, to communicate the importance and the benefits of donation and to help enlarge Australia's organ donation pool. I'm pleased to say that the group is going strong in its second year.

Australia has one of the world's best records in clinical outcomes for transplantation. The first transplant operation in Australia was a corneal transplant performed in 1941. Our first successful kidney transplant from a living donor occurred in 1965, and the first successful heart transplant in 1984—and I do remember it.

In 2018, the lives of 1,544 people in Australia were saved through organ donation. Just 554 deceased organ donors, with the support of their families, saved the lives of these 1,544 people through their most generous gift of organs and tissue. In fact, in 2018, Australia recorded its highest ever donation rate, at 22.2 organ donors per million population.

Unfortunately, in 2020, Australia's organ and tissue transplantation rates dropped due to the emergence of COVID-19 in Australia. Challenges facing hospitals, and logistics including COVID-19 restrictions, flight reductions and border closures affected the national program throughout the year. Last year, we saw a 12 per cent reduction in the number of people receiving a transplant and a 16 per cent decrease in organ donors, compared to 2019. Most significantly, 18 per cent fewer kidney transplants were performed, resulting in 153 fewer renal patients receiving the kidney transplant they needed.

Despite the obvious impacts, 1,270 Australian lives were saved in 2020 through an organ transplant, thanks to the generosity of 463 deceased organ donors and their families. Families have continued to show their strength and generosity in agreeing to donation, even with the added COVID-19 complexities in intensive care units. Around 1,800 Australians are on the waiting list right now, and more than 12,000 others are on dialysis, many of whom need a kidney transplant. The best chance we have to address the challenge of longer waiting lists is to have more Australians say yes to donation registration.

As a nation, we need to think more, talk more and do more about organ donation. We need to explore opportunities to expand the program, we need to tackle the myths and misconceptions, and we need to identify and break down barriers to organ donation. We know most Australians actually support organ and tissue donation. In fact, a recent poll of 60,000 Australians showed that four out of five say they would be willing to donate their organs when they die. We know that 90 per cent of families say yes to donation when their loved one is a registered donor. However, the actual national consent rate is only 64 per cent. We know that 71 per cent of Australians think it's important to talk with their family or partner about being a donor, but only half of Australians have had that discussion.

So the problem isn't that Australians are against organ and tissue donation. It's that they are not sure if they're eligible to register, they don't know how to or they simply haven't got around to it. This is why initiatives such as DonateLife Week are so important. DonateLife Week is the Organ and Tissue Authority's annual community awareness campaign to promote organ and tissue donation throughout Australia. This year the Organ and Tissue Authority is running the Great Registration Race in DonateLife Week to encourage up to 100,000 more Australians to register as organ and tissue donors. The key message this year is that it takes just one minute to register to be an organ donor. All you need is a phone, a Medicare card and one minute of your time to register. This small action can lead to life-changing outcomes for people across the country.

The bill before the House today is supporting the work of the Organ and Tissue Authority. The bill will transition the role of accountable authority under the Public Governance, Performance and Accountability Act from the board back to the CEO and will replace the existing governance board with an advisory board under the Australian Organ and Tissue Donation and Transplantation Authority Act 2008. Importantly, stakeholders are expected to support the change, as there will be no change to existing roles and functions of the Organ and Tissue Authority. The advisory board will continue to have access to the responsible minister and will be free to focus on strategic activities. The governance changes will align the Organ and Tissue Authority with the governance structures of most other non-corporate Commonwealth entities. These changes to the governance structure of the Organ and Tissue Authority will allow the board a greater strategic focus to provide expertise and advice to the work of the Organ and Tissue Authority and will be imperative in informing the implementation of two key reviews—the 2018 review of the Australian organ donation, retrieval and transplantation system, and the 2016 review of the Australian eye and tissue sector. This work will be fundamental in setting the priorities for the future to improve organ and tissue donation, retrieval and transplantation outcomes, which will better support the authority to more-effectively achieve its strategic goals, saving lives, like those of my Emmy and Shane, and improving the quality of the lives of more Australians.

As I've said today, the key barrier to more donations is a lack of registrations. There are around 13 million Australians aged 16 years and over who are eligible to register as an organ and tissue donor but haven't. In terms of Australia's organ and tissue donation system, I believe we need to have a conversation about implementing an opt-out scheme, where it is assumed that individuals wish to donate their organs unless when alive they have registered an objection to donating.

It is interesting to note that the five countries with the highest donor-per-million population rates all have opt-out systems. In this respect, I'd like to echo the points made earlier in this debate by the member for Higgins, Dr Katie Allen, by highlighting Spain and its outstanding organ and tissue donation system. Spain is widely acknowledged as a world leader in organ and tissue donation. It has maintained a sustained increase in organ donation over more than 20 years and currently has a donation rate of 46.9 donors per million population, more than double Australia's rate. In 2018 Spain had 2,183 deceased donors, who made 5,260 transplant surgeries possible. These included more than 3,200 kidney transplants, 1,200 liver transplants, 360 lung transplants and 300 heart transplants. Spain has the highest rate of organ donation in the world, which is largely due to its approach to improving organ donation rates throughout the entire healthcare system.

In Australia, the opt-out system has been widely debated but has been rejected on several occasions. I believe that we need to consider how we can improve organ donation rates in this country and that means looking at what has been successful elsewhere. It means gathering evidence to inform our efforts into the future. I'm not proposing that opt-out is the only way forward but it is well worth considering given its success in other parts of the world.

Organ and tissue donation is life-changing. It helps to improve health outcomes for thousands of Australians every year. I'm pleased that our government continues to support the Organ and Tissue Authority with positive changes such as those contained in this bill. All measures to support our fantastic organ and tissue donation system will mean more lives are saved.

Milton Dick (Oxley, 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 (Governance and Other Measures) Bill 2021 and to strongly support the second reading amendment moved by the shadow health minister, the member for Hindmarsh: 'whilst not declining to give the bill a second reading, the House urges the Government to deliver better health outcomes for all Australians, including through better management of the COVID-19 pandemic'. I want to start my remarks by thanking the member for Mallee for working as co-chair, alongside the member for Macarthur, in a bipartisan way to support organ donation. This is a critical issue facing literally thousands of Australians. Through her work and that of member for Macarthur, organ donation has not only been highlighted and promoted but, more importantly, brought to the attention of the national parliament, so I'm honoured to follow on from her fine words today.

The Australian Organ and Tissue Donation and Transplantation Authority, as we know, was introduced under a Labor government in 2008 as part of a suite of progressive reforms to our nation's organ and tissue donation system. These reforms were designed to improve health outcomes for all Australians. This is where I want to contrast the opposition against the government. When we come to the table with ideas, with reforms, that we hope will improve outcomes for the Australian public we can clearly see the government not delivering real reforms but tinkering around with reforms that have been introduced before.

The bill, in effect, seems to return the governance structure of the Australian Organ and Tissue Donation and Transplantation Authority to what it was under Labor before the changes were made by this coalition government. Based upon advice from Dr Mal Washer, a former member of this place, the chair of the Organ and Tissue Authority board, the bill will enable the board to have a more strategic and advisory focus. That is something we can all agree on in a positive, bipartisan way. Currently the governance structure of this organisation designates the governance board as the accountable entity. This structure was unusual when the government introduced it and it seems it has not delivered the results they hoped for. The changes in this bill, I'm pleased to see, are agreed by the entire board upon recommendation from the chair. They returned the governance structure to a more commonsense and common governance structure, with the CEO being the accountable entity and the board playing a strategic advisory role.

I pose the question to the House: why was this structure chosen in 2017? It's not really in line with the usual governance structure employed by non-corporate Commonwealth entities like the Organ and Tissue Authority. And the decision resulted in the Organ and Tissue Authority becoming the first non-corporate Commonwealth entity to have a governance board as the accountable entity. I am pleased that the government is acting upon the board's view about the governance of the Organ and Tissue Authority. This advice conforms with Labor's view that non-corporate Commonwealth entities, like the Organ and Tissue Authority, should have a governance structure that allows for the CEO—as we know in most organisations, or nearly all organisations—to actually run the show and be accountable for its functioning. I believe that is a sensible, practical way that organisations should run—accountable and making sure that all legal processes are followed, all the while being guided by a critical advisory board that focuses on the strategic direction of the authority. This conforms to the governance structure of almost all other non-corporate Commonwealth entities. It's a sensible change, one that indicates the government has, unusually, recognised that Labor did get it right, and that is a welcome decision. So there will be no opposition to the bill before the House.

I want to place on record a couple of remarks about the issue of organ donation, and then, in my remaining remarks, I'll talk about the health outcomes and some of the pandemic issues. The first thing I want to say is: now is the perfect time to become an organ donor. That's my message to the 13 million Australians aged 16 and over who are eligible to register as organ and tissue donors. So what can be donated? This is a fairly straightforward question. The organs that can be donated are hearts, lungs, livers, kidneys and pancreases. The tissues that can be donated include heart valves, blood veins, bones, veins, tendons, ligaments, skin, and parts of the eye to assist with people's eyesight. Critical donations are needed, with the pandemic obviously having a major impact on our health system. Also, what hasn't really been highlighted is that, with organ donations dropping by 20 per cent, as we heard by the member for Mallee, under 2,000 Australians are now languishing on waiting lists, with around another 12,000 on dialysis.

Recently, from 25 July to 1 August, we saw DonateLife Week, which was a big part of the campaign to raise awareness. I want to give a big shout-out to DonateLife Queensland, which raises awareness about organ and tissue donation, encourages discussion about donation—which I'll come back to in a moment—and educates health professionals about the donation process. There are still a number of misunderstandings and mistruths about organ donation that we need to deal with as a community. That's why I'm so pleased that this parliament is discussing this issue today, so that we can speak freely and frankly to the Australian people about its importance but also recognise the tough decisions and the tough conversations that have to be had, and offer care and support to donor families.

It doesn't really matter how old you are, your medical history, your lifestyle, what country you're from, or how healthy you are; you can register as an organ and tissue donor. And, as we heard, it only takes one minute. So I'm calling on Australians to jump online, go to donatelife.gov.au/register, make that decision, have that conversation and make sure that you become an organ donor. As the decision to donate organs and tissues ultimately comes down to a family decision, I think it's critical that those conversations take place. I think the member for Nicholls said that, whether it be around the kitchen table or in the workplace, you should have the sometimes hard conversation, because many Australians are depending on you.

Approximately 170,000 Australians die each year, with around 80,000 of these deaths occurring in Australian hospitals. Only two per cent of these hospital deaths can be considered for organ donation. In 2020, that meant only about 1,250 people died in a way where organ donation could have been considered. It also comes as research shows that six in 10 people mistakenly believe some people can't become organ donors because of having cancer, smoking, drinking, old age or general unhealthiness. In fact, in 2020, 40 per cent of organ donors were current smokers when they died, 10 per cent had recovered from cancer and more than 10 per cent had diabetes. Age is no barrier. This is another issue that comes up time and time again. In 2020, 70 organ and tissue donors were aged 65 and over. Surprisingly, corneas from older people are often better for eye donation. I didn't know that. So it really doesn't matter what your age or your background is; everyone can register and everyone can do their bit.

A recent poll of around 60,000 Australians showed that four out of five say they'd be willing to donate their organs when they die. So this is not a question of whether Australians want to donate—the evidence is clear that there is a strong willingness to; it's the fact they're probably not sure if they're eligible to sign up. Perhaps they mistakenly thought they had already registered or that they had had a conversation with someone, but they haven't actually taken the formal steps to sign up.

I was consulting with a number of local residents in preparation for my speech today—people who have had this experience or who have had children or loved ones as the beneficiary of the angels out there who have donated their organs—and they simply didn't know how to register. They were unsure if you had to register through your doctor. They said things like: 'It's not on my licence' and, 'I wasn't sure—I didn't have a driver's licence.' When I spoke to parents raising children, or in relation to loved ones, the last thing you think is that you're going to need a kidney, lung or serious organ transplant. But, when it happens, your life changes. It completely turns around. It is about simply having those conversations in the broader community.

One of the things I will be doing following today's debate and when parliament rises is running an awareness campaign in my own electorate, because, as a member of this place, I want to raise awareness for community, for older residents, for people from my non-English-speaking-background community. I represent around 50,000 people from non-English speaking backgrounds. I will look at running a local campaign to raise awareness. I am now in my second term in this place. As a result of consulting and listening and understanding, I've got a role to play as a community leader to raise awareness and to put these issues on the table.

I'm really pleased that these issues have been debated today. It brings me to the conclusion of my remarks, where I want to touch on the second reading amendment, which refers to better management of the COVID-19 pandemic. I want to place on record today my deep concerns about the member for Dawson's comments, which have received a lot of comment. As a member of this place, I believe that what the member for Dawson said in the parliament yesterday was deeply disrespectful to every Australian and every health worker who has done the right thing. We need to call out the dangerous misinformation from members of the government at every opportunity.

My question today is: why is the member for Dawson still a member of the government? This morning I heard weasel words from some ministers from the National Party, saying, 'Yes, we don't agree with him, but he's got the right to say it.' Well that doesn't cut it in my books. We're seeing a pattern now from the member for Dawson and Senator Canavan and Senator Rennick, spouting dangerous mistruths about COVID and the pandemic, and I don't want Australia's public health damaged for their own political chances. The Australian public should be able to trust each and every one of us in this House to use the privilege of a public profile for good, just as we have in this debate today. That is what this place should be about: highlighting, showcasing, standing up for issues for the Australians that need a voice, not the absolutely crazy ideas that we're seeing being infected in this place. It's bad enough that our country is dealing with a pandemic, a virus that is out of control. But now we're seeing National Party members of the government who are out of control. I tell you what: the member for Riverina and the member for Capricornia, two people I deeply respect, have strongly held views, and I know they are honourable people. That's the sort of leadership we need in this country, not the kind of craziness that we're seeing from the member for Dawson.

I sit in front of the member for Macarthur in this place. His contribution to this debate was one of the greatest speeches I have heard in the parliament. He is someone who was speaking from the heart, speaking with authority and also speaking with compassion about the Australians who rely on the 151 people in this chamber to do the right thing by them. I am glad that yesterday this House came together as a unified voice to send a very clear message to those peddling dangerous mistruths. I am delighted that the Prime Minister, led by the Leader of the Opposition, Anthony Albanese, stood up to the member for Dawson. They're great on the keyboards, great when sitting around sending out vile and revolting comments on social media; well, we in this chamber call them out, and I'm so pleased that members of the National Party, the Liberal Party and every other member condemned those comments. They deserve to be condemned because the Australian people deserve much, much better.

Anne Stanley (Werriwa, Australian Labor Party) Share this | Link to this | Hansard source

I rise to make my contribution to debate on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021. Labor agrees to support the reasonable changes set out in this bill as it reforms the governance structure of the Australian Organ and Tissue Donation and Transplantation Authority following advice from Dr Mal Washer, chair of the Organ and Tissue Authority board, to enable the board to have a more strategic and advisory focus. The current governance structure was established on 1 July 2017, establishing the board as an accountable authority of the Organ and Tissue Authority under the PGPA Act. This resulted in the OTA becoming the first non-corporate Commonwealth entity to have a governance board as the accountable authority. In July 2020 the Organ and Tissue Authority governance board undertook an internal review, as required under the board's charter, which indicated a clear consensus from board members for the need for increased time and capacity to contribute to the organisation's strategic direction and provide advice and support to the CEO. This bill will transition the role of the accountable authority from the board back to the CEO and replace the existing governance board with an advisory board under the Australian Organ and Tissue Donation Transplantation Authority Act 2008. These governance changes will revert to the approach first implemented by Labor in 2008 and align the authority with the governance structures of most other non-corporate Commonwealth entities.

I want to use my remaining time in the debate to encourage and support organ and tissue donation in our country, just as all of the speakers before me have done. Quite simply organ and tissue donations save and transform lives. Even just one donated organ or tissue sample can change the lives of more than 10 people. Our hospitals follow world's best practice, with specialist doctors and nurses supporting donation and transplantation in 95 hospitals across Australia. One in three Australians are registered donors, despite almost 70 per cent of Australians believing that registering for organ donation is important. However, organ donation is a rare event. Only two per cent of people who die in an Australian hospital meet the criteria to be an organ donor—that is, almost 1,300 lives. Since the national program for organ and tissue donation began in 2009, there have been over 14,000 organ transplant recipients from more than 5,000 donors.

Organ and tissue donation can come from a person living or deceased. Deceased individuals can donate their whole body, even if that individual has endured health challenges, such as diabetes, arthritis, heart disease or cancer. Many body parts can be donated, such as lungs, hearts, eyes, kidneys, bladders or livers. The donations are a gift for extending a life. One great advantage of donating an organ is for scientific research and studies so that treatments, medicines and cures for disease can be made. Donating organs or an entire body can promote this offering and give a second chance to save lives throughout the world.

A person's health condition impacts on their daily life. Whether it's your career, hobbies or favourite activities, having poor health can impact on your life substantially. The greater we make access to transplants, the more lives can be improved and saved. Since the first successful organ transplants in the 1950s, after 200 years of transplant history, countless lives have been saved. Many people are able to live longer, healthier lives each year and millions of lives around the world continue to be changed every day.

However, the supply of organs remains significantly below the growing need for organ transplants. At the beginning of June 2021 there were almost 1,800 Australians on the organ donation waiting list at any one time, and if the number of organ donors does not increase dramatically in coming years it will be more and more difficult to keep up with demand. Just last year, over 1,200 Australians lives were saved through organ transplants due to the generosity of more than 450 deceased organ donors and their families. And yet there was a 12 per cent decrease in the number of people receiving a transplant and a 16 per cent decrease in the number of donors compared with 2019.

With almost 1,800 Australians currently waitlisted for a transplant and 12,000 additional people on dialysis—many of whom will need a kidney transplant—more attention needs to be directed to this area to ensure people can have a second chance at life. My husband and I have been organ donors since it became an option to make the decision clear on our drivers licenses. I have registered, as have all of my family, on the Australian Organ Donor Register. But, most importantly, my family have had that conversation with each other. My children and extended family know that it is my wish, should the opportunity arise, to see someone else live a full and happy life with their family by my donation. When my mother-in-law died in 2007 of liver cancer, she was able to give her corneas so that someone else could see. Someone in my extended family has benefited from organ donation. The donation changed their life and has given them the opportunity to see their daughter grow up and also to enjoy all of those family occasions that their health otherwise would not have allowed. There is no more significant gift. We should all spare a moment for those families over the years who, in their darkest time of grief, felt strong enough to save the life of another. You are such special people and we are so grateful for your gift of life.

Now, more than ever, we need to encourage organ and tissue donation, and ensure that the approach to this crucial area is done carefully and sensibly. I commend the bill to the House and I want to thank all those who are already registered as organ and tissue donors, and all those who, because of these speeches, will have the conversations today. And I thank those family members who have allowed their loved ones to be organ donors. Have the conversation today and make sure that you register on the Australian Organ Donation Register.

While I have time, I would also like to take up the words of the member for Oxley about the contribution in this House yesterday from the member for Macarthur. In my part of the world we have been suffering for the last eight weeks because of the outbreak of COVID in our area. I have people contacting my office every day about the fact that they can't work, that there are so many people dying and so many in my community who are suffering. We need vaccinations. We needed COVID not to escape from quarantine. It is really time for the government to step up and start to make a difference in our community.

Rick Wilson (O'Connor, Liberal Party) Share this | Link to this | Hansard source

The debate is now interrupted in accordance with standing order 43. The debate may be resumed at a later hour.