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

This bill, the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021, is largely a technical one. It refers basically to the management of the Australian Organ and Tissue Donation and Transplantation Authority. It would seem, listening to the speakers, that it has broad support across the House. It will enable the authority's management to run more smoothly and divert more of their resources to actually finding organ and tissue donors and making sure that those operations can take place in a safe and prosperous environment. Basically, we're all on the same ticket: we want more people to take up the possibility of organ donation.

This is one of the good things that happen in parliament from time to time, something about which we can all be on the same side and support. But I have to say at the beginning of this speech that I'm both surprised and saddened that the Labor Party has chosen to politicise this by moving an amendment which one could say is nothing more than straight pointscoring. I listened to the member for Oxley, who spoke just before question time on this issue. He gave us a good 10 minutes, I'd have to say, and then went to their amendment and spent five minutes just having a smash-and-grab. I hardly think this is the issue to do that on. Really, where does the bottom of the bucket stop? But I'll move on from that.

When I was thinking about what I was going to contribute to the debate on this bill, I reflected that, if there's anything we could do in this place so that one speech would make a difference and one extra person would sign on as an organ donor or one extra person would actually end up donating organs, we would have done some good work. In that light, I thought I would contribute. To do so, I thought I would go back to the speech that I gave in September 2008, when the Australian Organ and Tissue Donation and Transplantation Authority was established. I will just make the point that my recollection is that, in opposition, we didn't move any amendments on it. We supported the government legislation.

At that time, my speech was largely about two people whom I knew quite well. One was a bloke called Peter Stutley and the other was his wife, Marilyn. I detailed the story of Peter's sad demise. He was a good bloke, Peter—a knockabout kind of chap. He'd done jobs just about anywhere and at any time, and you could rely on him to roll up to work and put in a good day's effort. He'd spent time in the mining industry and in farming. In more recent years he'd been up at Moomba, earning good money in the gas fields. A little later in life he'd come to find Marilyn, a girl whom I went to school with. They got married and had children, boys, and he'd decided it was about time he got back from the gas fields and was around to give a hand raising those boys and be dad.

He took a farm job for a friend of mine. One day they were shifting machinery. He went on ahead with the machinery and was to be picked up later. While he was waiting, like any good workman, he found something to do. We think it was nailing down a few flapping sheets of iron on the shearing shed. Whatever happened, that day he fell. When his boss came along and found him, he was in very poor shape. He was shipped out to Adelaide, and it became pretty clear before long that Peter was going to depart the earth and this life, at least spiritually. He was on life support, of course, so his organs were functioning, but his brain was not.

So it came to that point where people in that situation are asked whether they would be prepared to donate the organs. You wouldn't believe it, but only six weeks before this Marilyn and Peter had had a discussion about what would happen and what they would want to do in the event of such an untimely ending. They had decided strongly—Peter certainly had—that if his organs were no longer any good to him they might be able to help someone else out. So they acted upon those wishes. It was obviously a very emotional time. She was supported by a good friend, and it was a pretty raw moment for the whole district, I'd have to say. This happened on a farm right alongside my own. Pete will always be remembered by the six people he gave life to. As I said:

Peter's corneas, kidneys, heart valves, lungs and long bones went to six separate recipients—gifts of life or huge improvements to life quality in all cases. All this has given Marilyn great comfort that Peter's untimely and unexpected death has brought something good to these people.

I think that story is equally powerful today as it was back then. I've given the abridged version today. We shouldn't forget Pete or a lot of people like him, and we shouldn't forget that you can be as generous in death as you are in life. I think that is a salient point that should be held for all of us.

The second story I told on that day was about a young woman we met in Adelaide. When my children started at university, Teresa and I made a decision that it was about time we bought a unit in Adelaide for our children to live in while they were going to university. We had three children who went to university there, as it turned out. In this block of units, there was a young lady called Nancy Douglas-Irving. Nancy had had a long battle with kidney disease. She'd been on dialysis machines to keep her alive. She'd had a kidney transplant, and it had worked for a while. Then it had failed, and she was back on dialysis. She was a travel agent and a vibrant woman. She had waited many years on dialysis, and it wears you out. I'm sure there wouldn't be a member in this place who doesn't know someone who's been on long-term dialysis. It really saps your energy.

Eventually she made herself quite famous. She told me: 'If I have another five years of this, I'm going to give up on dialysis. I just can't stand it as a permanent solution to my problems.' But she advertised nationally for a donor. That got her on a few television shows, lots of interviews and whatever else. I think she did great work at actually promoting the need for organ donation and what a difference it can make. In the end she did find a kidney. It came from a family member. Boy, you couldn't believe the difference in this woman. I said at the time, she looked 10 years younger virtually overnight. In retrospect, it was more like 15. It was like turning on the starter key. All of a sudden she had all this energy and this pent-up ambition to do something for sufferers of diabetes and others, those who suffer from renal disease, renal failure. Along with some friends, she established a program called Dialysis Escape Line.

As a travel agent, she used to organise a trip, a cruise, every year for people who are on permanent dialysis. She would organise the machines. She would organise the transport from the airport to wherever they had to get on the cruise liner. She would find some volunteers to come along and be dialysis nurses for the trip. They would run fundraisers. My daughter was involved in helping her for some times and they would organise whatever they needed to get this show on the road each year. What a wonderful thing she did for others, and that's the kind of person Nancy was. You're probably guessing from the fact that I used the past tense that this doesn't have the conclusion we want. As I said, she got a kidney and her life was good. As a travel agent she managed to take more than the one week a year when she was accompanying a lot of other people on dialysis and so she travelled the world and did all kinds of things. She said to me, 'I can't get insurance, but how long's a piece of string? I don't care, I'm going anyway.' Then her life got even better. She met the wonderful Wayne Brady, and they got married a few years ago. She was over the moon. It was a wonderful outcome. During that time she was awarded an OAM for her services to people with kidney disease and the dialysis community. She used to say to me, 'I've made these great friends at dialysis, but sadly I keep losing far too many of them.' But then she got sick—I understand it was a different ailment; I don't know the full detail of it—and she died two weeks ago. I don't think it was a kidney failure, but all that time on dialysis over the years can't have strengthened her. She leaves a huge hole in a lot of people's lives—and certainly in Wayne's life. She was a wonderful individual.

The point of telling Nancy's story—once again, in an abridged version—is to point out how much of a difference a decision like Peter Stootley made can make to someone like Nancy. It can change their life. Pete's attitude was: 'I'm not using them anymore, mate; why not give somebody else a hand?' I don't think I could give a higher recommendation for people to become a registered donor. For the interests of the House—and I know we are not allowed to use props—I have certainly got it on my licence. I hope that most other members do, and I hope all of Australians eventually do the same thing.

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

I rise today to speak on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021. As members of the House would probably be aware, I'm the co-chair of the Parliamentary Friends of Organ Donation. I work closely with my co-chair the member for Mallee, Anne Webster, and we have been seeking to promote and raise awareness of organ and tissue donation within the parliament and, indeed, within the wider community. As co-chairs, the member for Mallee and I have the privilege of working with our friends at DonateLife, the Organ and Tissue Authority. The OTA is staffed by a team of dedicated public servants led by the wonderful Lucinda Barry. I thank all of them for the critical role they play in promoting organ donation throughout the country. We've had a couple of functions in Parliament House and we have promulgated a whole range of information for the wider community and for our fellow parliamentarians. We feel this is an extremely important issue, and Australia has been one of the world leaders. Even though we are doing quite well, we have potential to improve our organ donation rate much higher.

A couple of weeks ago I had the pleasure—unfortunately mostly online—of supporting our 10th annual DonateLife Week. This has multipartisan support across the cabinet. I would like to mention the minister for health, Greg Hunt; the shadow minister for health, Mark Butler; the previous minister for regional health, who had responsibility for organ donation, Mark Coulton; Chris Bowen; and David Gillespie. They have all had a strong interest in support for DonateLife and organ and tissue donation, as have many other members of the House. The member for Grey has just spoken very eloquently. The member for Indi has a strong interest in this, as does the member for Higgins and other members across the parliament. It has been great to work in such a committed and bipartisan group whose only interest is improving our organ and tissue donation rates across the community.

This is something that affects all communities. In my work as a paediatrician, I have dealt with many patients who have benefited from organ and tissue donation. I have a very good friend—in fact, I'll be going to dinner at their place tomorrow night here in Canberra—who has had a double lung transplant and, I'm pleased to report, is doing very, very well. And one of my favourite patients—and I know I shouldn't say 'favourite patient', but she is!—is one of the first survivors of liver transplant in the paediatric age group in Australia, young Jessica. So I've had a long involvement with this and I've seen how things have changed.

Our goals, however, remain the same: to increase our organ donation rate to make sure that everyone who needs one or who would benefit by organ or tissue donation can get help with a donated organ. Unfortunately, the pandemic has disrupted a lot of our events over the last 18 months. As I mentioned, this year DonateLife Week went digital through the OTA's Great Registration Race for DonateLife Week. I'm pleased to report that many, many thousands of people across Australia did contribute to this and were part of it. The goal is simple, but it is priceless: the gift of life by encouraging as many Australians as we can to sign up to be organ donors.

I'm a proud card-carrying member of the donor registry and I would encourage anyone who is listening to my speech today to sign up and register as a donor. It's very, very simple. I am a computer and digital troglodyte, but even I can do it, and so if I can do it, anyone can do it. It only takes a minute and, if you could do so, it may well be a life-saving act for someone in the future. People sometimes are a little reluctant to talk about it, I know that. But having the conversation with your family is very important. If you can register to be an organ donor you can do it at www.donatelife.gov.au, and you can do it today. It will only take a minute or two.

Many people are still under the assumption that the old state based drivers licence register is active. People now need to register their interest via the DonateLife website. It only takes a minute but the gift that you could give someone will last a lifetime.

Excuse me, I have to finish my speech there—sorry.

Helen Haines (Indi, Independent) Share this | Link to this | Hansard source

I rise today to speak briefly on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021, and to highlight the important work of organ donation and transplantation, the work of health professionals in this field and the generosity of so many families. I do this because it is an issue that is so close to me.

Many, many years ago, as a young nurse at St Vincent's Hospital, I had the great honour of working in the early days of renal transplantation in that hospital. I saw the sacrifice of some incredible families. I guess what struck me, really, was the intersection of the science and the silence—the science that brought us to the moments of being able to transplant organs and to bring new life to other people, and the extraordinary silence and respect at the point at which that transplantation occurred. I will never forget being in an operating theatre at the time when that happened. So the aim of this bill is to allow the board a greater strategic focus to provide expertise and advice to the work of the Organ and Tissue Authority. As we've heard, there's bipartisan support for this.

Australia leads the world for successful organ and tissue transplantation, and 1,800 Australians are currently waitlisted for an organ transplant. Nine out of 10 families agreed to donation if their family member was registered on the Australian Organ Donor Register. One organ and tissue donor can transform the lives of many people. Our donation rate has more than doubled in recent years, but there's so much more that we can do. As the member before me just said, 2020 was a challenging year for the national program, with COVID-19 having a direct impact on the organ donation and transplant numbers. There are around 1,800 Australians currently waitlisted for a transplant and more than 12,000 additional people on dialysis, many who may need a kidney transplant. In 2020, 1,270 Australian lives were saved through an organ transplant due to the generosity of 463 deceased organ donors and their families. Since the national program began in 2009 there have been 14,352 organ transplant recipients from 5,029 deceased organ donors.

But organ donation is a rare event. Only around two per cent of people who die in Australian hospitals—that's approximately 1,300—meet the required criteria to be an organ donor. 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 the majority, 69 per cent, believing that registering is important. But in 2020 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 to 2019. COVID affects us in ways we don't even think about, and this is one. Now more than ever, we need more Australians to say yes to organ donation.

Just over a week ago it was DonateLife Week. That's a program run by the Australian government's Organ and Tissue Authority that we are speaking about today. DonateLife is supported by agencies in every state and territory. It's a public awareness initiative that encourages Australians to register as organ and tissue donors. It was the 10th annual DonateLife Week. But we don't need a special week to register to be an organ donor; we can do it at any time of night or day. If the moment comes where that registration is called upon, it's often the incredible work of a nurse donation specialist to have that conversation with the families of the person registered at what is a most tragic and terribly difficult time.

I would like to highlight the work of nurse donation specialists, some of whom work in my electorate of Indi. These nurses are funded by DonateLife. Their work starts well before a registered donor ever makes it to the healthcare system. These nurses provide multidisciplinary educational services on organ and tissue donation for all hospital staff that come in contact with the donation process. They promote community awareness and understanding about organ and tissue donation. They improve the identification of potential organ and tissue donors in the hospital through early referral to DonateLife. They work with hospital teams to ensure that 100 per cent of potential donors are identified and that their registration is optimised. They support families considering organ and tissue donation in end-of-life care and they collect data and audit material, and report this back to DonateLife.

At Northeast Health Wangaratta, Nurse Joanne Hymus told me about her former role as a donation specialist nurse. She used to educate clinicians on identifying potential organ and tissue donors in our region. She so often spoke to families and offered information and gained their consent, and she would have done that so sensitively and carefully and scientifically. She worked in the critical care unit to prepare the potential donors for organ surgery which occurred locally at Northeast Health, and she liaised with transplantation teams so that everything ran smoothly. She held community events to highlight the importance of organ and tissue donations and to help people sign up—people who may have had problems getting online and doing so. Joanne told me what a deeply satisfying and important job this was to her. She felt so deeply for the families who, on the worst days of their lives, are asked to make a very important decision. It can make that terrible day just that little bit easier when you know that a loved one's wishes about donation are carefully supported and that their legacy can transform the lives of up to nine other people.

At Albury Wodonga Health, specialist nurses Anna Jagoe and Helen McKee have similar responsibilities for this role. Helen told me that Albury Wodonga Health is one of the leading areas in the state for organ donations and that their work means it is very rare to miss a registered donor should that opportunity occur for a donation. She too spoke of the enormous support they give to family, and described how much of a relief it is that, in rural areas such as ours, families no longer need to travel to a large centre like Melbourne for this surgery to take place. That means families can stay with their loved ones right until that final moment. As I said, COVID has impacted on many of the events that these organ donation nurses undertake, and some of the available funding for their roles, sadly, has been cut. We've lost three organ donation specialist nurses in Victoria alone.

Let me conclude by just going through a few facts and myths. If you've ever considered organ donation and delayed becoming a donor, you have done so probably because you have some uncertainty. So, firstly, it's a myth to think that you may not be healthy enough to donate because of your lifestyle choices. People who smoke, drink or have an unhealthy diet can still register as an organ and tissue donor. You don't have to be in perfect health to save a life. It's a myth to think that being registered just on your drivers licence is all you need to do. Only in South Australia, as the member talked about before, can you register to be a donor via your drivers licence. In every other state and territory you need to register online with donatelife.gov.au/register. If you're unsure if you're already registered, go online and check.

It's also a myth that some people are concerned it's better just to let the family decide at the time. It's absolutely not. If you want to become an organ donor or a tissue donor, please register and tell your family. They're twice as likely, the stats tell us, to help you become a donor if you tell them that you want to. Another myth is that only the young and healthy can be donors. The truth is that age is not a barrier; people over 80 become organ and tissue donors. It's also a myth that organ donation disfigures the body of the person who donates. Organ donation is specialist surgery that is done respectfully and skilfully and does not disfigure the body. A final myth is that religions don't support organ and tissue donation. The truth is that all major religions support organ and tissue donation and see it as the ultimate gift of giving. So, if you're unsure if you're registered, please go to DonateLife online and check.

Finally, I want to thank all the amazing health professionals right across our nation who do this work. I want to thank everyone who's registered to be an organ or tissue donor. Mostly, though, I want to thank the families of the donors. Your generosity is completely incalculable.

Graham Perrett (Moreton, Australian Labor Party, Shadow Assistant Minister for Education) 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. This bill reforms the governance structure of the Australian Organ and Tissue Donation and Transplantation Authority. 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 Public Governance, Performance and Accountability Act. In July 2020, the Organ and Tissue Authority governance board undertook an internal review, as required under the board's charter. The review indicated a clear consensus from board members on the need for increased time and capacity to contribute to the organisation's strategic direction and provide advice and support to the CEO in this crucial area. So this bill before the chamber transitions the role of accountable authority from the board back to the CEO, and replaces the existing governance board with an advisory board under the Australian Organ and Tissue Donation and Transplantation Authority Act 2008. These changes revert to the approach first implemented by Labor back in 2008 and align the Organ and Tissue Authority with the governance structure of most other non-corporate Commonwealth entities.

I'm reminded of a speech I gave in 2008—in fact, my first speech—in February, after the election. In front of my wife, Lea, and my son, Stanley—it was before you were born, Leo, otherwise I would have mentioned you too—I said the reform of the organ donor system was crucial. A big thankyou to the former member for Griffith, Prime Minister Rudd, an organ recipient himself, for achieving such a significant outcome. Obviously lives have been saved. The grief associated with early deaths has been somewhat assuaged by organs providing that second life for somebody. At the time the Rudd changes were made, organ donation was sitting at around 10 donors per million of the population, which I think everyone on both sides of the chamber would agree was a disgraceful national statistic. The rate then rose, up to 15.6, and was heading north, and that was good news, but sadly that trend has reversed in the past couple of years, obviously affected by COVID.

COVID has caused much suffering across the world in the last 18 months, and the human cost has been immense. In Australia, sadly, we've had 941 deaths from COVID, and there are currently more than 5,000 active cases. But the true human cost of COVID will never be known. Sadly, the figures for organ transplants in 2020 were down by 16 per cent. There is no denying that COVID-19 has had an adverse impact on organ donation and transplantation rates: hospitals face challenges, including COVID-19 restrictions, and there are flight reductions and border closures, so often a big part of organ donation. Sadly, there are currently around 1,800 Australians waitlisted for an organ transplant.

Organ donation is an issue that I've been concerned about for some time. As I said, I spoke about it in my first speech. I did that because, in the lead-up to the 2007 election campaign, my friend Debbie Duddridge passed away. Debbie had been waiting on a set of lungs for more than two years. The lungs had to be the right size. But, on 29 October 2007, Debbie ran out of breath for the final time. How many Debbies are out there waiting now, hoping that it will not be too late for them? How many of those 1,800 Australians could be saved by someone making that commitment to their family and to the authorities?

Organ and tissue transplantation does save and transform the lives of people with a life-threatening illness or disability. Organ and tissue donation involves removing organs and tissues from someone who's died, the donor, and transplanting them into someone who, in many cases, is very ill or dying, the recipient. When we think about an organ transplant, we immediately think of organs like the heart, lungs, liver, kidneys, intestines and pancreas, but there are other tissues that also can be transplanted to save lives, such as heart valves and other heart tissue and bone, tendons, ligaments and skin. All can help trauma and burn victims in their recovery and help to change people's lives. Eyesight can be restored by corneal graft transplants. Many lives can be saved or transformed by one decision to donate.

It is important to know that the circumstance where there is an opportunity for deceased patients and their families to support organ and tissue donation is uncommon. Sadly, just one per cent of the people who die in hospital under medical supervision are able to be organ donors. This makes it even more important that we have many people registered to donate. Only a small fraction of those registered will actually be able to fulfil their wish to donate.

For a lucky country, Australia's rate of organ donation is still shameful, but we can change this, all of us can. There are two steps. You know them. You've heard them from other speakers. Step 1 is to make sure you tell your family, and the other one is to register to be a donor on the DonateLife website, which takes about one minute. That conversation you have with your family today could save someone's life in the future, or change nine other lives even. You might think it is difficult to start that conversation, but it will be even more difficult for your family if they don't know what your wishes are when they need to. Make sure they know you want to be an organ donor. This was my plea to all Australians in my first speech, and I give it again today.

Have you signed that organ donation form? If not, why not? Have you clearly told your loved ones that you would love your body to keep on working long after you are gone? If not, why not? If you think—I would suggest mistakenly—that your religion prevents you from donating organs, perhaps you should have another talk to your religious leaders or to your God. Whether you're watching, listening to or reading this speech, the question you need to ask yourself is: why not? Please commit today to doing somebody else a favour after you're gone. As they say, caring is doing, and, if you don't do, you really don't care.

Labor supports this bill, and I'd like to finish today by thanking the 58 per cent of families who agree to allow life-saving organ donation when faced with the tragic reality that one of their loved ones is not going to live. I say a big thankyou to them. Let's not leave our relatives wondering what we want. Talk to them today and register on the DonateLife website.

Shayne Neumann (Blair, Australian Labor Party, Shadow Minister for Veterans' Affairs and Defence Personnel) Share this | Link to this | Hansard source

I rise to support the amendment moved and, of course, this bill, the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021. It was a Labor government that established the Australian Organ and Tissue Donation and Transplantation Authority, or the Organ and Tissue Authority, in 2008. The amendments in the legislation before the House will essentially make the authority revert to the governance model established when the OTA was first implemented by Labor, which begs the question: what's changed? We know that the LNP government, when they came to power, made every effort to overturn reforms implemented by Labor. We have seen that in the NDIS and aged care.

Under the current governance structure, the Organ and Tissue Authority board is the accountable entity, making the OTA the first non-corporate Commonwealth entity to have a governance board as the accountable entity. There does not appear to be any rationale for this very unusual change to the governance structure in 2017. It's clearly not worked, and the board, under the leadership of its chair, Dr Mal Washer—someone for whom I have enormous regard and respect—advised the responsible minister it's time to put this inexplicable experiment to an end. It's time to get back to the model established when the Labor established the authority in 2008. The bill rightly seeks to restore this model. I want to commend the government for recognising what we on this side of the chamber knew on this issue: we were always right in the first place. The bill is a belated admission of failure by this government.

I do want to take the opportunity to commend the work of Dr Mal Washer. He's well-known in this House by many as an entirely reasonable, professional and compassionate man. He assisted me on occasions when I was unwell. I can recall one occasion when he saw me on a daily basis and assisted me—and I'm not necessarily convinced that was in the best interests of the then opposition as I actually cast a vote! He was very gracious towards me on many occasions, on both sides of the chamber. He was a physician first. He provided care and comfort ahead of partisan politics. That professionalism was evident when he resigned his chair of the Alcohol and Other Drugs Council of Australia in 2014 off the back of the government's decision to axe the council's funding without warning or rationale. Dr Washer, at the time, described that decision as a tragedy. It had not been subject to any review. He said, 'it was dumb advising dumber, and dumb won,' of the decision made by the former assistant minister Senator Nash at the time. It was quite an extraordinary decision, but that's Dr Washer's view and I respect that, and I respect his advice in relation to the bill that is before the chamber, which the government has finally seen fit to bring before this House.

I want to thank the member for Parkes, the former minister, who took the advice of Dr Washer and restored the governance model before the authority went the way of the Alcohol and Other Drugs Council of Australia. When this government came to power in 2013, they got rid of plenty of organisations, bodies and boards and made a number of changes thinking they were doing the right thing but now have realised, on occasions like this bill before the chamber, that they got it wrong.

Labor has a proud history of promoting organ and tissue donation. Back when the last Labor government was in power, I was the former Parliamentary Secretary for Health and Ageing in a previous Labor government, in what the current government calls the assistant minister role. I had the privilege of working with the OTA and having it within my ministerial remit. I knew if the CEO Ms Yael Cass provided advice, it was reasonable and reliable and well researched, and I had no hesitancy commending this governance model, the subject of this bill, where the CEO is responsible to the minister while the board takes care of the strategic direction.

Labor has always been committed to the establishment of the world's best practice when it comes to organ and tissue donation, and we oversaw a community awareness program when we were last in government that funded great organisations and did projects like the groundswell project through 'Film life' film festival in Western Sydney, which I was pleased to help launch when I was at Nepean Hospital in Penrith one time, I recall, in 2013.

I was proud as part of a Labor government to oversee the introduction of paid leave to support living donors—a $1.3 million commitment over two years. At the time of course, 99 per cent of living donations were of kidneys and partial liver. But, as the member for Oxley correctly pointed out in his speech today, as he went through a list of various parts of the anatomy which could be subject to donation, many people do not think that those parts of our human body are capable of donation, but they really are. I thank the member for Oxley for pointing out to the House and to the public what they are. The paid leave to support living donors was a scheme that provided up to six weeks of salary to support employers and be passed onto the donor as paid leave. This helped to reduce financial stress that surgery and recovery put on people, their families and their employers.

Living organ donors provide a life saving or life transforming gift to another person. I recall that, as at 2013, each year more than 280 living organ donors made this incredibly generous gift of their organs, but there were 1,600 people waiting on the organ donation list. This particular program, giving paid leave to support living donors, was commended strongly by Transplant Australia and Kidney Health Australia. So Labor has a strong record in this space of supporting and promoting organ donation. In fact, in 2012, when we were last in government, 354 deceased organ donors transformed the lives of just over a thousand Australians. There was a five per cent increase in 2012, building on the nine per cent increase in 2011. It represented a 43 per cent increase over 2009, the year the DonateLife network was established. So, when Labor was last in government, we saw a significant increase in organ donation and also the implementation of the paid leave to support living donors initiative. That initiative helps alleviate financial burden on someone who donates an organ, usually to someone they have a strong emotional attachment to, such as a child, a partner or a mate. The process requires significant time, including medical evaluation prior to surgery. We brought this initiative forward because many living donors were forced to take leave without pay from work.

We understand that organ and tissue donation, whether it's from living or deceased people, can be a difficult and emotional decision. We know it's vital. One organ and tissue donor can transform the lives of many. If permitted, I'm happy to give the example of my mother-in-law, Corinne Briese, who's no longer with us. For 25 years, she experienced life after she had a liver transplant, and that liver transplant allowed her to see her grandchildren grow, to see her family expand and to see her great-grandchildren born. She was a beloved figure in our household. Because she suffered illness and was infirm in many ways for much of her life, that liver transplant really gave her the opportunity to experience a quality of life, to develop her recreational activities, to experience relationship development and to become an even more beloved figure not just in her family but in her church and her community. So I have seen the benefit of organ donation in my family. Tragically, Corinne died during the COVID pandemic from dementia. But, for 25 years, that new liver, donated generously by someone, by someone's family, enabled my family to experience their beloved mother, mother-in-law, grandmother and great-grandmother. So I encourage everyone to think about that, because that one donation of that liver made such a difference in my family's life, and it can in the lives of other Australian families.

The rate of donations has increased, but 2020 was a tough year for the program, with COVID-19 directly impacting the number of organ donations and transplantations. I encourage Australians to think about DonateLife. It doesn't take long to register to be a donor. About 1,800 Australians are awaiting a transplant, and another 12,000 or more are on dialysis, many requiring a kidney transplant. I have friends whose son currently needs a kidney transplant. My wife and I, with our friends, are going through that experience of their beloved son waiting for that kidney transplant.

Our donation rates can still improve. We can still do much, much better. Since 2009, there have been 14,352 organ transplant recipients from 5,029 deceased organ donors. About two per cent of the Australian population who die in an Australian hospital will meet the criteria for organ donation—1,300 a year. That's just a couple of hundred more than when Labor was last in power.

The government's got some work to do, and we would encourage them to do it. They'll get bipartisan support from our side of politics the more they act, and this bill is a demonstration of belated action from the government, fixing up the governance structure that they messed up in the first place. I'm pleased they've listened to Dr Mal Washer, and they're going back to a governance structure that we put in place, which was the right one all along.

Organ donation is a precious gift. It makes a difference to the lives of individuals—not just the individual but the family and the community in which it's given. It's a generous gift from a donor and their loved ones. The process needs to be respectful, appropriate and effective. That's why the governance of this authority needs to be suitable, fit for purpose and the world's best practice.

I support this bill, but I also support the amendment. I make this point to this government, as I did in a speech I gave virtually when I was back in my electorate last week: vaccination and quarantine need to be better. The government have failed in relation to that. They don't need an opinion poll to know that. The members on the government's side can go to their electorates and know that would be the feedback they would get. We get it as well. The amendment that the shadow minister has put doesn't decline to give this bill a second reading. But we urge the government to do better.

I looked at the vaccination rates in my electorate. Second dosages of eligible people in Ipswich are about 16 per cent and first dosages of AstraZeneca and Pfizer are just over 30-odd per cent. It's just not good enough. I've had people who don't vote for me contact me about the problems in aged care and the issues in terms of mandatory vaccination. The government promised that they would help people in aged care and the staff. We know that people died from COVID-19 in Victoria because people were working across multiple aged-care sites. The government promised that would be done by Easter this year. They did the same in relation to disability, for people working in disability under the auspices of the NDIS and helping people with disability. I urge the government to do better. Perform better. You've been entrusted with office and with power. Take responsibility. I urge the Prime Minister to take responsibility. It's no good giving us a word salad vocabulary of statistics here. The public knows they need to do better. I urge the government to act. We haven't got enough vaccination in this country. They were too tardy, too slow, and they've not taken responsibility for their failures in this space.

There is a place up near Toowoomba called Wellcamp. It could be a quarantine facility opened in a matter of a couple of months. It's been sitting on the table. Still, the government won't take the necessary steps to expand the quarantine facilities in this country—except in Howard Springs, where they talk about it but they haven't done it yet. In Brisbane, in our home state, in Pinkenba, we're talking about asbestos, we're talking about PFAS and we're talking about disused military hardware there. Do the right thing. Expand Wellcamp. Make it a proper quarantine facility. It will house hundreds and hundreds more. Do the right thing and bring back the Australians who are in countries where COVID is rampant, who want to come back to their loved ones and their family and friends, and get quarantine fixed. That will make a difference. That will restore people's faith not just in this government but in government generally.

Chris Hayes (Fowler, Australian Labor Party) Share this | Link to this | Hansard source

I would also like to make a contribution on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021. As you've heard, from our side of the House we are supporting the passage of this bill. It introduces very sensible changes to the governance structure of the Australian Organ and Tissue Donation and Transplantation Authority, the OTA. In saying it's sensible—of course it is. It moves the governance structure back to where it was initially, when Labor first instigated the transplant arrangements back in 2008.

This bill actually follows the recommendation of Dr Mal Washer, the chair of the Organ and Tissue Authority board. For those who've been around a while, we know Dr Washer, the former member for Moore, very, very well. He is a friend to everybody in this place and a person whose advice we would always take, quite frankly. He is a person who always was focused on the best outcomes of most things he was associated with. For me and many here, before the arrival of the member for Macarthur, if we had ailments, Dr Washer was our go-to person. He was the doctor in the House. As I said, he was a very good friend to everybody and a person whose advice we respect. Dr Washer conducted an internal review of the OTA and made recommendations about the government structure, concerned that it wasn't delivering on the effective and efficient governance of the authority. If that's his view, we should all be at least cognisant of it.

I think the appointment of Mal Washer one of the best government appointments that has been made. He is a person of absolute credibility and, as I say, a person who we respect and dearly love on this side of the House. His advice and recommendation was to return the authority to a more common governance structure, with the CEO being the accountable entity, and for the board to take on a strategic advisory role. Despite this, we're glad that the government is now choosing to act on the board's advice and is changing the governance structure of the OTA.

In effect, this bill will transition the accountability of the entity from the board back to the CEO. Furthermore, it will replace the existing governance board with an advisory board under the Organ and Tissue Donation and Transplantation Authority Act 2008. The advisory board will provide mentoring and leadership to the CEO on organ and tissue donation and on transplantation matters. The advisory board will have a skill based membership, like Dr Washer, and will harness expertise, experience and knowledge from a wide range of members on the board across areas of the organ and tissue donation sector.

Putting aside the technical aspects of the bill, this debate also calls for an important discussion more generally about organ and tissue donation and its ability to transform the lives of many. While there has been a 12 per cent decrease in the number of people receiving transplants and a 16 per cent decrease in the number of donors, in 2020, compared to the year before in 2019, we know that the pressures of COVID-19 certainly played a significant role in this statistic. Putting aside the pandemic and its impact on donation rates, the fact is it is pleasing to know that organ donation rates have almost doubled in recent years.

Since the national program began in 2009, there have been 4,352 organ donation recipients from 5,029 deceased organ donors. That is 4,352 people who have received the gift of life. However, we know that there's much more to be done in this space. There are around 18,000 Australians currently on the waiting list for a transplant and more than 12,000 additional people on dialysis who will need some time in the very near future a kidney transplant. Despite having one of the highest rates of success of transplant operations in the world, Australia, regrettably, has one of the lowest rates of organ donation in the developed world. Given that Australians generally acknowledge organ donation as a good thing—I think that if we go to any of our electorates, mobile office meetings or anywhere we talk about the issue of organ donation, people always say that it's a very good thing and that they support it—regrettably, it doesn't translate into a significant increase in our donation rates.

Considering the well-known Australian spirit of lending a hand in times of adversity, it's safe to think that the reason that there isn't a higher incidence of organ donation rates is because there's a lack of awareness about the matter and not enough discussion taking place between families and friends, with people indicating what their attitude is to organ donation. Probably like most people in this House, I know that I have filled out the form, and for those in New South Wales it's actually displayed on our drivers licenses that we are organ donors. But whilst you may consent to being an organ donor that doesn't mean, in respect of sudden loss of life, family aren't consulted about their attitudes in relation to a donation.

In approaching this issue I guess it's really critical to understand that many Australians just don't know what their family members think in this regard. I certainly do for my mother and others who have actually told me on many occasions—and apart from filling the forms in—what their attitudes are. I think that's one of the first things that we have to deal with. When someone dies, an organ donation is not the first thing that comes up with the bereaved. It's certainly not front of mind for grieving families.

Organ donation is the gift of life, yet so many people just don't know how to give it. And so many families in bereavement are probably less inclined to. So, despite an individual deciding to become an organ donor, their family is still asked to give consent to a donation when the situation arises. Therefore, it makes a lot of sense for someone who intends to make an organ donation, to provide the gift of life, to discuss this with their family so they feel comfortable with the decision. The discussion will certainly make saying yes much easier on the family members and will minimise that sense of doubt and possible regret. It's much easier for family members to have a discussion now rather than waiting until a tragic time of loss.

This issue is very close to me. I have a very close friend, Debbie Roberts, who I have spoken about in this House on a number of occasions. Debbie was faced with this very tough decision when she lost her daughter, Rebecca. Her decision was made a lot easier because Rebecca had made her intentions about organ donation very clear. As a result, her family honoured Rebecca's wishes. The result was that two people benefited from receiving Rebecca's kidneys and another two benefited from receiving Rebecca's corneas. Their lives have been profoundly enriched because of Rebecca's wonderful gift. It is the gift of life that all Australians should consider giving.

That said, I support the passage of the bill before the House. I call on Australians to continue to engage with the issue of organ and tissue donation with their families and loved ones. Your decision can mean the difference between life and death for another Australian.

I also acknowledge the great work that is taking place by the member for Mallee and the member for Macarthur in co-chairing the Parliamentary Friends of Organ Donation—what they are doing amongst our parliamentary colleagues in ensuring greater awareness and making sure that organ donation really comes into the general vocabulary of how we engage and deal with our constituents. I think the Parliamentary Friends of Organ Donation are doing a sensational job, and we should all at least support their activities in and about the House.

I support the passage of this legislation. I do acknowledge the second reading amendment and, certainly, I also subscribe to the view that the government's got to be doing better for the health outcomes of all Australians, particularly through the management of the COVID-19 pandemic.

Luke Gosling (Solomon, Australian Labor Party) Share this | Link to this | Hansard source

I also rise to speak on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021. Like the member for Fowler, I support the passage of the bill and encourage the federal government to do better in its response to the significant health challenge of the COVID-19 pandemic.

But, moving to organ donation, this bill deals of course with a very important issue, an issue that yearly saves the lives of many, many Australians. The bill 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 advisory focus. I note that Dr Washer is a former member of this place. Even though I didn't know him personally, if the member for Fowler, who's a good bloke, says that Mal Washer's a good bloke, then that's good enough for me. This bill undoes the changes that were brought in by those opposite in 2017, taking the board model back to that introduced by Labor in 2008. As the member for Ballarat rightly said earlier today, 'Fancy that! We had it right.' Like so many things that the Labor government, the Gillard government, did, of course, they were the right and proper things to do; they were good policy. Of course, it was a particularly important issue for former prime minister Kevin Rudd, given that he had been a recipient.

As all speakers from both sides of the House have said, there is bipartisan support for organ donation and for those very important conversations with families that can lead to saving lives. I believe in it passionately. Last week—or was it the week before; I can't exactly recall—it was DonateLife Week, and I went out to Royal Darwin Hospital in my electorate and spoke with some of the organ donation and transplant team, those health professionals that do all that incredible work. I thank them for their advice and for being part of a slightly wacky photo shoot—but the idea was to capture people's attention because that's what we need to do to encourage them to make that life-saving commitment and gift of life.

Of course, with the COVID crisis we've seen a drop in the number of donor registrations. We've heard from the Organ and Tissue Authority national medical director, Associate Professor Helen Opdam, that life-saving organ donations were down by around 16 per cent in 2020. With 1,800 Australians on the organ transplant waiting list, as Professor Opdam told the NT News, 'We need more donors.' It's been a tough period. It's likely that people have had other health concerns at this time, also difficulties with employment, whether working from home or losing their jobs; educating kids from home; and navigating the lockdowns.

DonateLife's 2020 Australian Donation and Transplantation Activity Report reveals that donation requests were made to 1,170 families last year, but only 680 families said yes. The associate professor commented that that consent rate of 58 per cent, coupled with the May 2021 YouGov study, showed that just four in 10 Australians understand that someone's intention to become a donor can be overruled by next of kin. That, of course, as the member for Fowler just mentioned, makes a compelling case for families knowing in advance where their loved ones stand on the issue of organ donation.

The NT News also spoke with a DonateLife organ donor specialist, Guy Vanderkelen. He's with the families in that difficult moment of decision. He acknowledged that it is a very sensitive experience, made more challenging by the decision-making process that the families go through happening in the face of acute grief. He went on to say:

We try to share information with them about organ donation—how rare it is, the benefits through organ donation not just for transplant recipients but also the family of the potential organ donor, because we know they receive support from the ICU and organ donation specialists.

Also the benefit to them in supporting the wishes of their loved one …

For the record, Guy Vanderkelen is my brother-in-law, and I'm very, very proud of him and the job that he does. He has a wonderful nature about him. He has worked with all sorts of communities and he's very effective in supporting families, donors and recipients to try and achieve the best possible outcome. There has never been a more urgent time in Australia, with those rates of registrations dropping off, for us to be speaking to this legislation and to be encouraging Australians, because we really need people to register.

I want to share the story of a friend of mine, Robbie Dalton. Robbie is a great bloke up in Darwin. He and his wife, Carly, are good friends of mine. He's had a transplant. It's an incredible story. He went from being fit and healthy to fighting for his life. Robbie's is a remarkable story, in that five strangers each donated an organ to save a stranger, knowing that a stranger, in turn, would save the life of one of their friends. As well as generosity, it was a huge logistical and medical effort that was performed. There were five transplant operations in one day. But, of course, there was a great outcome, in that Robbie is still alive and with us, and it wouldn't have happened if that all-important box hadn't been ticked.

Again, I encourage every one of us to have a discussion with our families about whether we want to donate our organs should we pass away unexpectedly. So that it's in Hansard, for the record, I am registered. To my darling wife, Kate: I am happy for my organs to be used, should they be needed. The facts are very simple for my friend Robbie and Carly. He probably would not be with us anymore if those donors had not come to his assistance on that occasion. They've got three young boys. If not for those generous donors, Robbie and Carly's sons might not have a father today, so it makes a big difference in people's lives.

I want to sum up by saying that if you are not registered it's very easy to do so. Just go to donatelife.gov.au/register. You simply put in your Medicare card number, your name, your date of birth and your postcode and hit 'Submit'. Like the information that so many millions of Australians gave last night with the census, it's important information that will really assist and save lives in the future.

Tony Zappia (Makin, Australian Labor Party) Share this | Link to this | Hansard source

I join other speakers in supporting the changes that are proposed in this legislation, the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021. I have previously spoken in this place about organ donation, so I won't cover all of the ground that I covered in previous speeches. But, like others, I accept that organ donations can not only change lives but give life. I recall when the first heart transplant was successfully performed in South Africa by Dr Christiaan Barnard, assisted by his bother Marius, in December 1967. At the time it was a major news story around the world. It was a medical breakthrough that gave so much hope to people right around the world, because if heart transplants could successfully be performed then all kinds of other transplants could equally be done. Whilst the recipient of that first heart, I understand, only lived for about 18 days, as time progressed the operations became more and more successful, and millions of people around the world have since benefitted because of that breakthrough. Five decades later, according to figures that have been released, I was able to ascertain that about 145,000 organs are transplanted around the world each year, with kidney and liver transplants being the two most common.

As other speakers have also noted, currently there are about 1,800 Australians on transplant waiting lists here in our own country, and some 12,000 additional people are on dialysis. In 2020, 1,270 lives were saved by an organ transplant through the generosity of some 463 deceased organ donors. That meant 1,270-plus lives were changed, because the lives of all of the family members of those people whose lives were saved were also changed because of those life-saving operations. Organ donation affects not only the recipient but many other people as well. Those figures are encouraging. However, again, as other speakers have highlighted, we can and should do more. In 2020, because of the COVID situation, I understand the figures declined a little, so it's perhaps not the best year to try to analyse the figures. However, the 16 per cent drop in 2020 means that a review of the causes of that decline needs to take place so that we can understand what was happening and why it happened. Was it just simply because of COVID-19? The governance structures proposed in this legislation will hopefully facilitate that review. With Dr Mal Washer as chair of the board—and, like others, I know that Dr Mal Washer has a passion for this issue—I have every confidence in the board's oversight and its encouragement of more people to donate organs.

Regrettably, whilst organ transplants save lives, organ transplants can also take lives. I refer to the black market for human organs and the lives taken in the harvesting of organs for resale at lucrative prices to desperate people, including some from Australia. Over the years, there have been several credible investigations into organ harvesting and organ transplants. I don't intend to name any particular country, because by all accounts it happens in several countries that people's lives are taken for their organs. People disappear without trace. Many years ago, an Australian sportsperson disappeared without trace whilst overseas representing Australia in an international sporting event. To my knowledge, that person was never seen again. One theory about his disappearance was that, being a healthy, fit athlete, he was murdered for his organs. He was never found, and so we will never know. What we do know is that the reports of organ harvesting are credible and that healthy organs are valuable. Indeed, a parliamentary inquiry into organ transplant tourism only three years ago suggested that the value of the trade in those organs ranges somewhere between $840 million and $1.7 billion.

The Australian government, regrettably, does not maintain good records of how many Australians travel overseas for organ transplants. According to one submission made to that parliamentary inquiry into organ transplant tourism, in the 13 years to 2017, 176 Australians had an organ transplant overseas, with half of them allegedly being illegal. The same submission noted that the World Health Organization estimates that around 10 per cent of all transplant procedures involve organs that have been bought on the black market. Australia should join other countries, including the European Union and the USA, in taking a more-proactive approach to stamping out the black market for organ trafficking around the world. That would include trying to establish more-accurate information about all organ transplants on Australians, including those performed overseas.

The report referred to, which was put together by the Human Rights Subcommittee of the Joint Standing Committee on Foreign Affairs, Defence and Trade, had 12 recommendations within it. Most of the recommendations go to the issue of trying to manage the issue of organ harvesting and organ trafficking much better. There is a lot more we could do here in Australia to be part of a world movement to do just that. The recommendations, which I have read through, although I wasn't a member of that committee, make eminent sense. I draw them to the attention of the minister so that, perhaps, the government can review the recommendations and, in addition to the changes it is making with this particular legislation, look also at the recommendations of the committee.

I join with colleagues in encouraging more organ donation amongst our own people in Australia. I trust that the administrative changes that are proposed in this legislation will ultimately lead to that. That is obviously the intent of the changes. Increasing organ donation rates here in Australia and, indeed, across the world will not only save the lives of recipients but, importantly, by reducing demand in the black market for organs, it may well save the lives of many innocent people around the world who, every year, are killed for their organs.

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

The Australian Organ and Tissue Donation and Transplantation Authority manages the implementation of the Australian government's national reform program on organ and tissue donation and transplantation. In July 2020, the Organ and Tissue Authority governance board undertook an internal review as required under the board charter. The results indicated a clear consensus from board members of the need for increased time and capacity to contribute to the organisation's strategic direction and to provide advice and support to the chief executive officer.

The board was established on 1 July 2017 following a review of the implementation of the national reform agenda on organ and tissue donation and transplantation conducted by Ernst & Young in 2016. Following the review, legislative changes established the board as the accountable authority of the Organ and Tissue Authority under the Public Governance, Performance and Accountability Act 2013, known as the PGPA Act. This resulted in the Organ and Tissue Authority becoming the first non-corporate Commonwealth entity to have a governance board as the accountable authority under the PGPA Act. 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 and Transplantation Authority Act 2008. There are no changes to the existing functions of the Organ and Tissue Authority. These governance changes will align the Organ and Tissue Authority with the governance structures of most other non-corporate Commonwealth entities.

This bill will amend the functions of the CEO to include all functions of the accountable authority under the PGPA Act and establish the advisory board to provide advice and expertise to the CEO on organ and tissue donation and transplantation matters. The advisory board will have a skills based membership harnessing expertise, experience and knowledge from a broad range of areas from within the organ and tissue sector. All advisory board members except the chair will be appointed by the minister responsible for organ and tissue donation and transplantation matters in consultation with the jurisdictions. The chair will be appointed directly by the minister without a requirement to consult.

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. This will support the Organ and Tissue Authority to set 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 and improving the quality of the lives of more Australians.

I thank the members for their contributions to the debate on this bill.

Sharon Claydon (Newcastle, Australian Labor Party) Share this | Link to this | Hansard source

The question is that the amendment be disagreed to.

Question agreed to.

Original question agreed to.

Bill read a second time.

Message from the Governor-General recommending appropriation announced.