Helen Polley (Tasmania, Australian Labor Party, Shadow Parliamentary Secretary for Aged Care) Share this | Link to this | Hansard source

I rise to speak on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (New Governance Arrangements) Bill 2016. This bill amends the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 to establish the Australian Organ and Tissue Donation and Transplantation Authority Board, abolish the existing Australian Organ and Tissue Donation and Transplantation Authority Advisory Council and transfer responsibilities currently invested in the CEO to the board.

Before I get into the detail of this legislation I want to briefly comment on the recent history of organ donation policy. The Australian Organ and Tissue Donation and Transplantation Authority, also known as the Organ and Tissue Authority, was established in 2009. It was the Rudd Labor government which established the Organ and Tissue Authority as part of the national reform program to implement a world's best practice approach to organ and tissue donation for transplantation. The program consisted of nine key elements: establish a new national approach and system for organ and tissue donation—a national authority and network of organ and tissue donation agencies; establish specialist hospital staff and systems dedicated to organ donation; provide new funding for hospitals; provide national professional education and awareness; provide coordinated, ongoing community awareness and education; provide support for donor families; establish a safe, equitable and transparent donation and transplantation network; national eye and tissue donation and transplantation; and undertake additional national initiatives, including living donation programs.

The program was announced in July 2008, and Labor committed $151.1 million over four years to improve access to transplants through a nationally coordinated approach to organ and tissue donation. In July 2013, the Supporting Leave for Living Organ Donors Program was introduced by Labor as a two-year pilot program. Living organ donors make an incredible sacrifice to help the life of someone else, often but not always a family member. Donating an organ is not risk free. Major surgery is required. Donors who work need to take leave while they recover. Consequently they may use up a large amount of their leave or, worse, have to take leave without pay. That can impose a financial burden, which could act as a disincentive to donate in the first place, or could encourage people to return to work before they should do so. The Supporting Leave for Living Organ Donors Program aims to minimise that financial burden. It does so by reimbursing employers for payments or leave credits provided to employees for leave taken to donate an organ and to recover from the operation. Following the conclusion of the pilot program, the coalition increased the support provided and extended funding for the program for another two years.

A review of organ donation and transplantation was also announced in May 2015. Ernst and Young were commissioned to carry out the review, which was completed in August 2015 and released by the government in February this year. The review found:

Since the implementation of the national reform programme in 2009, there has been an overall increase in the dpmp—

deceased donors per million population—

by 41% (11.4 dpmp in 2009 compared to 16.9 dpmp in 2014).

Some time has passed since the review and, whilst in 2014 we saw a slight drop in donation rates, the 2015 figures recovered and improved to 18.3 dpmp, slightly exceeding the 2015 target. There were 435 deceased organ donors in 2015—an increase of 76 per cent over 2009. Those 435 donors made an enormous difference to the lives of 1,241 Australians.

It is clear that Labor's program has been met with considerable success and that this review represents an overwhelming endorsement of our reforms. With organ donation rates, however, particularly as there are more than 1,400 people on a waiting list in any one month, there is always room for further improvement. Meeting the target of 25 dpmp by 2018 will require the rate of improvement to increase. That is not an easy task. However the donation rates for deceased donors per million population vary significantly between states and territories, which in 2015 were: New South Wales, 17.2; Victoria, 21.2; Queensland, 15.1; South Australia, 24.7; Western Australia, 16.2; Tasmania, 17.4; Northern Territory, 16.4; and Australian Capital Territory, 21.2. Those figures demonstrate that 25 dpmp is achievable.

Nevertheless organ availability is low partly because only around one per cent of deaths which occur in a hospital happen in the specific circumstances where organ donation is possible. That leads to just under 1,000 requests to families for donation being made. In 2015, the acceptance rate by families was around 60 per cent. After the request for donation was accepted, around a quarter of those transplants did not proceed for clinical reasons. The acceptance rate is an area where further improvement is possible. When families do not know what the deceased's wishes would have been, they are far more reluctant to agree to donation and only around half agree. Sadly, the request for donation comes at an extremely difficult time for the family and the decision is no doubt much harder to make when the deceased's wishes are unknown. However, if the deceased had registered their decision to donate, over 90 per cent of families agreed to the donation. That means getting more people on the register is crucial to improving donation rates. That has been occurring, and, while there are around six million people on the register, that figure could be much higher. Registration on the Australian Organ Donor Register is normally very simple and can be done online, by a form or even through the Medicare express phone app.

To return to the review: it made 24 recommendations, five of which relate to governance of the Organ and Tissue Authority. Those five recommendations all deal with replacing the existing advisory council with a board of governance. The governance arrangements for the Organ and Tissue Authority are currently advisory only, and the review found that 'the strategic oversight of the DonateLife Network as well as the performance monitoring, succession planning and mentoring of the Organ and Tissue Authority CEO will be improved by the introduction of a board of governance for the Organ and Tissue Authority that will be responsible for these functions.'

The board of governance established by this bill will comprise eight members, including the chair, deputy chair and CEO. The CEO will manage the day-to-day administration of the Australian organ and tissue donation transplant authority, although the board may delegate some of its functions to the CEO. Before appointing a deputy chair, the minister is required to request nominations from each state and territory health minister and consider those nominations. A similar process occurs with respect to other board members with nominations from the COAG Health Council. The deputy chair and the board members are also required to have substantial experience in or knowledge of at least one of a number of healthcare fields. The chair, however, is nominated by the Commonwealth and is only required to have substantial experience in or knowledge of public administration, business or management.

Organ donation policy is an area where a bipartisan approach has been and should be taken. Labor therefore appreciates the government's commitment to consult the opposition on the selection of the chair. Board members' terms are limited to four years. Remuneration will be determined by the Remuneration Tribunal or the remuneration that is prescribed by the regulation if no determination is in operation. The transition from advisory council to a board of governance is expected to cost an additional $200,000, which I understand is to be met from existing funding arrangements.

Aside from the governance recommendations, the review also recommended publication of the breakdown of state and territory funding on the Organ and Tissue Authority website, that organ and tissue donation data be made public on hospital-by-hospital and state-by-state bases, that minimum standards for auditing of organ donation practices be defined, that the DonateLife Network monitor the proportion of ICU specialist staff and trainees in each hospital who have been trained in having the donation conversation with families, that states and territories clearly define who is responsible for organ donation rates in their jurisdiction and proceeding with a one-step online donor registration process. Whilst I do not know the status of each of these recommendations and they are not subject to this bill, the donor registration process is now quick and simple in most cases.

I would like to take this opportunity to thank the Organ and Tissue Authority, the advisory council members, clinicians and hospital staff for their work and, most importantly, the donors and their families for giving such an important gift to others.

In summary, whilst the governance changes are relatively minor, they may improve the accountability and transparency and therefore the operations of the authority. If the result is even slightly higher donation rates than would otherwise have been the case then it will have been a very worthwhile step. But I would also like to place on record that so many of us are touched by either having a family member making a donation or being a recipient. I have to put on record that my cousins Michelle and Robert Polley of Launceston lost their young son very tragically. The amount of lives that he was able to give the opportunity for the greatest gift of all I would like to place on record. I urge everyone in this chamber to support this bill, as I am sure they will. Labor therefore will be supporting the bill, and I commend it to the Senate.

Rachel Siewert (WA, Australian Greens) Share this | Link to this | Hansard source

On behalf of the Greens leader, Senator Di Natale, I rise to make a contribution on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (New Governance Arrangements) Bill 2016. This bill makes changes to the governance arrangements of the Australian Organ and Tissue Authority, removing the existing advisory council and replacing it with a board. The bill follows the commissioning by the government of a review into the implementation of the national reform agenda on organ and tissue donation and transplantation.

The review was required in large part due to the declining organ donation rates in 2014. The Ernst & Young review made a range of recommendations, including changes to the governance arrangements for the Organ and Tissue Authority. The Greens will support this legislation as it is in line with the recommendations of the independent review, but in doing so we want to put the government on notice that we are continuing to keep a sharp focus on the success of the authority and the reforms on driving up donation rates in Australia.

In July 2008 the then Australian government announced a national reform program to implement 'the world's best-practice approach to organ and tissue donation for transplantation'. This is exactly the objective we should have in Australia, but, unfortunately, by no measure can we claim success on this pursuit. In fact, despite the more than $250 million that has been spent on this reform agenda since 2008, Australia ranks 22nd in the world for organ donation, having actually dropped two places in 2014. We are going backwards. The problem with going backwards in this field is that there are lives not saved—Australian children, men and women who are needlessly lost who could have been given the miracle of another lease on life.

Australia's donation rate is currently at 16.9 donors per million population and the government has said that it wants to achieve 25 donors per million population by 2018. That is an ambitious target from where we are now. We want to see that happen, too. We will be keeping a watch on whether this reform will serve to improve the rate.

The government has said that this change to the governance arrangements, in line with the E&Y recommendations, is about better implementation of the reform agenda. We do support that. But the proof as ever is in the pudding. Who will comprise this board and will their mix of skills and expertise be the best possible to drive forward innovation to get that donation rate up? The legislation does set out a complex process of the nomination for members, through the states, and sets out the required set of skills they ought to possess. It has been raised with us that the lack of reference in the list of relevant skills to managerial, financial or business experience is likely to result in a repetition of the problems that beset the existing advisory council, and misses an opportunity to in fact expand the board. The new board assumes responsibility from the CEO for the setting and monitoring of strategic goals. It is certainly the case that we need to see the best most innovative thinking from the board in setting and meeting those very goals. Let us make sure that we are not repeating the problems of the past, which, we have seen, simply are not delivering the results that Australia deserves and expects.

The Greens welcome the government's moves last year to investigate the reasons for the disappointing results for organ donation reform and we support the donation reform agenda, through the Organ and Tissue Authority. We will be continuing to monitor the progress and, hopefully, the outstanding success of this new process.

Deborah O'Neill (NSW, Australian Labor Party) Share this | Link to this | Hansard source

I rise to speak on this very important part of Australia's conversation about how we look after one another at critical times when we are faced with the death of somebody whom we very much love and the choices that are made in that very high pressured context about what might happen with organ donation. Organ donation is an intimately personal choice that can determine someone's quality of life or even save a life altogether. Labor certainly understands this. At its most generous and extreme, it is the donor's choice to give a lifesaving organ upon their death to help someone survive. I note Senator Hinch is here in the chamber. I do not know if he is going to contribute to this debate. He is giving me the thumbs up. I am hoping that is a sign that he likes me, as well as that he is going to contribute to the debate.

Derryn Hinch (Victoria, Derryn Hinch's Justice Party) Share this | Link to this | Hansard source

I am here.

Deborah O'Neill (NSW, Australian Labor Party) Share this | Link to this | Hansard source

Thank you very much, Senator Hinch, because I do know that you have been a recipient of such a gift of generosity as part of the Australian medical structure. It changes things. You are here. That is probably a very powerful thing for us to be discussing in the consideration of the bill this afternoon.

The Australian Organ and Tissue Donation and Transplantation Authority Amendment (New Governance Arrangements) Bill 2016 establishes the Australian Organ and Tissue Donation and Transplantation Board, which is a replacement of an advisory council. As others have said, it is a consequence of a recommendation of review in 2014 by Ernst & Young. The bill continues the work of the Labor Party, which, in 2008, pioneered the establishment of the Australian organ and transplant authority. In 2008 organ donation reached a record low level. I do note Senator Siewert's comments about a current decline again, but that particular time prompted us into action. The low level was in fact as few as 10 donations per million Australians. In response, the Rudd government announced a new program, expressing the very frank frustration of many Australians by stating that the government had been stuffing around for too long over who would fund the dedicated program.

A result of that action is what is known today as the Australian Organ and Tissue Donation and Transplantation Authority Advisory Council—the body that this bill seeks to replace in a way that updates it rather than dismisses it. The funding included $67 million for dedicated specialists and staff for public hospitals, and $46 million to establish an independent national authority. So, it was no small commitment. We did this because Labor believe that the health of Australians is a concern for all Australians and that authorities such as this are very much a part of the fabric of making sure that Australians get access to what they need, when they need it. We know today that that Labor initiative grew the number of organ donations per million people to 18 from 10—almost a doubling. That is a great outcome, but, as has been alluded to, there is much more work to on do.

The member for Hasluck, Ken Wyatt, stated that the OTA had achieved a broadly effective agenda. But, despite the success, there is still work to be done to improve the function of the OTA, especially to encourage the normalisation and acceptance of organ donation in Australia. This bill builds upon the great work of the OTA and helps it consolidate its position as a world leader in organ transplantation and donation. Labor hasalways fought for a fair and equitable health system, where the people of Australia are looked after, whatever their background or whatever the condition or whether their wealth gives them the capacity to determine their health outcomes. This was a significant investment to improve life outcomes for many Australians.

Through Medicare, Labor has constructed a support network for Australian families. Our efforts to keep Medicare free and public are reflected in the priority that we place on health and, consequently, the significant funding to establish this authority in the first place. As the chair of the Select Committee on Health in the previous parliament and now as the shadow assistant minister for mental health, I speak with people in the sector on a regular basis. Nurses, doctors, patients and their families all speak about how much health matters to them. It matters particularly at the moment when people are passing and at the moment when your life might not be able to be continued unless somebody is generous enough to give you an organ or a tissue that will enable you to survive. We know the OTA has proved a very effective body in reforming the donation system and tapping into that generosity of Australians. Those goals to increase donation rates continue to drive the agenda of the OTA.

Labor understands the personal challenges to donation are complex and rooted in social and cultural issues, especially when gaining consent from family if the deceased person has not left clear wishes. Senator Moore is here in the chamber. We were just responding to Senator Siewert's contribution and she said, 'Nobody really knows why we've had this dip because it is such a complex issue.' Hopefully this change of structure to the board is going to provide research that might give us a better understanding of why this is happening.

We know that some of the things that the OTA have done included employing a family donation conversation professional who came to train staff and specialists to help clarify potential fears of families of donors. This has certainly increased the rate of family acceptance to 75 per cent. That is particularly in the case where family donation conversation trained staff members have been in place with specialists when having these conversations. It is a very difficult conversation to have and a very challenging part of a family's journey together. That was a piece of information that came from the OTA's 2016 report.

The focus, as I said, of this proposed bill is to change the current structure where there is an advisory council that sits underneath the CEO. The change to the board structure means that the CEO will now account to a board. Echoing the expression of perhaps concern and perhaps hope by Senator Siewert, the quality of the people on the board is going to be critical in determining how successful this change that is mooted in the bill will be.

Improving the OTA and continuing the Labor led focus on the health and welfare of the people of Australia is something that I am very proud to support. I do not often want to speak the same words as Senator Nash, but when she says she is not interested in personalities but is interested in saving lives I have to concur. I think all Australians would agree with that. It gives me great hope that there has been such widespread support for the arrangement that has been put in place over some period of time.

There was a threat at one point to the OTA in the last parliament. I was very pleased that the Senate Select Committee on Health had hearings into that and Labor was able to draw sufficient public attention to the different functions of the OTA as opposed to the blood authority which meant that it could get a stay on the threat of a merger of those two authorities. I am pleased to see that what we are debating here in this bill is a change of shape for the OTA as an independent body rather than what we might have had, which was two organisations doing very different things being forced together. I have to say that the Liberal and Nationals parties with regard to the OTA may have seen the benefit of not going ahead with that.

According to the OTA, one organ or tissue donation can save 10 or more lives. Organ transplants are a very effective and well-researched treatment. They currently provide the best quality of life for many in need and, as I said earlier, save lives. It is this spirit of kindness when donating that the DonateLife organisation refers to as the greatest gift. While I am speaking about that, I notice that we have a number of Christmas trees around the place. In the spirit of Christmas, I recall that in one of my Christmases as the member for Robertson I took some of the documentation and some of the flyers from DonateLife to my local stations—Gosford station and Woy Woy station. I asked people to think at Christmas. And I also put this on the record today. I ask people here in the parliament and people who might be listening to think about it. We talk about Christmas as this time of gift giving. There is perhaps no greater gift that you can give than to decide you are going to register as an organ donor.

One of the things that the DonateLife campaign has been funded to do is raise awareness that if you do make a decision to record your support to donate life then it is important you have a conversation with the people who are most likely to be with you at the time at which a decision might be made about whether your organs and tissues might be harvested to bring life to someone else.

When I think about all the Australians I come in contact with in the community—and I have doorknocked tens of thousands of doors—I meet amazing people every single time. They inspire me with their passion, with their work, with their commitment to the community. There is a generosity of spirit that is quintessentially Australian. Yet we are not quite there with donations. So, again, I say: if you have not decided to register to donate your organs, think about that as a Christmas gift that you give your community. You never know, somebody might be able to save a family member of yours, or you might be able to help another family.

I would also like to take the opportunity to acknowledge the incredible community leadership shown by a family on the Central Coast when faced with a particularly challenging situation. I am talking about the Pilon family. On the coast we know of a young boy called Banjo Pilon. His older brother, Fletcher, is more known to people because he was a performer on The Voice,one of those wonderful music shows, and he was a winner. He is an amazing young man. His career was really starting to take off. On a Sunday in August last year he was with his young brother, Banjo, and his sister, Gabbi, and things were looking wonderful for that family. But just before 5 pm, when skating with friends in Prince Street in Wamberal, Banjo was, very sadly, struck by a young local person on the Central Coast who was on their P-plates. It was a horrific accident.

The Pilon family responded in a way that was so open to the whole community and with such generosity that they modelled how a family might respond in grief. Banjo's mother, Jilly Pilon, wrote a very moving online tribute to her son, who she described as being 'full of huge smiles, filled with love, always having fun and living in the moment'. In her tribute, she said:

You have put up the greatest fight these last two days our angel. So proud of you and how strong you've been.

On the Wednesday night of that week, she wrote:

At 3.01pm today, whilst your precious little heart still beats strong, it was time to declare you've moved into another dimension. We now savour every last minute with you our little hero before you are taken to donate your organs tonight to other sick little children and give them your special gift of life. Keep smiling sweetheart. We all love you so, so much and you will always be with us wherever we are.

When I think of being able to write that—I am barely able to say it. This is what I am talking about: these are the sorts of people that Australians are. There are great people who understand this, and it is just a technical thing that we need to do—we just need to register. And we need to have these conversations with the people we love. That is really the outcome that we want to achieve so that we can give this gift of life to other people. The gift of people's creativity and the technological capacity we have give us the opportunity to do something remarkable that was impossible 40 years ago. It is time for Australia to embrace this. It is time for us to take the lead from people like Jilly Pilon, who honours her son Banjo and who shows us what can actually be achieved, to manage through that terrible grief to make something very positive. They continue to be a remarkable family. There are many stories about the Pilon family that I could tell. That makes this personal.

I do want to make some remarks about what the OTA program can do. As a 2014 report of the Senate Select Committee on Health stated:

The benefits of organ transplantation both to the recipient and the broader society are undeniable.

The benefits of organ donation are clear in the numerous stories shared by transplant recipients, such as those seen in the many reports of the OTA or on their annual 'thank you days', where there is a common theme of 'beginning anew', 'doing what I never would have been able to do before' and of being 'provided with a life that otherwise would have been lost'.

In 2016 the OTA recorded the amazing and life-changing contributions of 435 donations—435 amazing Australians who made a choice. We are a population of close to 24 million; I think we can do better than that. Those 435 donations transformed the lives of 1,239 people. As I said, I think that much more can be achieved. Through Labor and the OTA's efforts Australia has gained a reputation for a world-leading number of donations, but not as much as we could possibly do. We do have fantastic facilities for transplants, and we need to make sure that our hospital funding is maintained at a level where that is possible. I have some more remarks to make about that later this evening, when I will talk about the hospital funding cuts that came in as part of the 2014 budget brought in by Tony Abbott and banked continually by Mr Turnbull.

The OTA has been provided with $½ million of funding by this current government to establish and maintain a governing board and to allow it to continue to expand the scope of its operation, continuing the originally Labor-led initiative for the welfare of Australians with regard to tissue and organ donation. According to its 2015-20 strategy report, the OTA will follow a three-step plan: firstly, increasing the number of potential donors to minimise the number of people left waiting; then it will improve its conversion rate or acceptance of organ donation in the community; finally, it will improve the systems to support organ and tissue transplantation.

By cementing Australia's position as one of the world leaders in organ and tissue transplantation and donations and ensuring that the people of Australia receive the best possible care when they are in need, this bill will continue the great work around providing help that I stand by and the Labor Party has always stood by. Can I indicate to those who are interested that there is a capacity for you to register or change your registration details to donate organs. The number is 1800777203. There is an email, which is aodr@medicareaustralia.gov.au. If you are thinking about a Christmas gift, this is a really good one. Please consider giving this gift to your fellow Australians. I commend the bill to the Senate.

Janet Rice (Victoria, Australian Greens) Share this | Link to this | Hansard source

I rise to speak on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (New Governance Arrangements) Bill 2016. As my colleague Senator Siewert has already outlined, the Greens will be supporting this legislation in line with the recommendation of the independent review.

I want to start by noting how timely it is that I am speaking on this bill tonight, because right at this very moment a very dear old friend of mine is probably receiving a kidney donation. He and his partner Cathy have been part of the Australian Paired Kidney Exchange Program. Cathy had a kidney removed this morning, and I am told that the operation went well, and Ian was due to receive his kidney at 5 o'clock this afternoon. I think there were four pairs of people that were going to be involved and kidneys being flown across the country so that people could be getting this gift of life. Ian's kidneys were failing, and I know that to be able to receive a new kidney is going to be life-giving for him.

So it is very appropriate, because we know that organ donations are life-giving. People's lives depend upon their organs functioning well. Tonight we are speaking about the governance structures of the organ authority because we want to increase donation rates. We want make sure that all Australians have the opportunity to receive very precious donations of organs to allow them to continue to live. The Greens are very concerned, as Senator Siewert outlined in her contribution, about the fact that it appears that rates of organ donations are in decline. There are not enough organs available for all Australians who need them. What I want to talk about particularly tonight is what the consequences of that are. Not only does it mean that people cannot get their kidneys, hearts, lungs, and other organs and tissues to enable their lives to be extended and to enable them to be healthy and well; I am very disturbed that this lack of organs being available in Australia is fuelling a disturbing practice: the unethical procurement of organs overseas and the possibility that some Australians may be receiving these organs, potentially unwittingly.

I am very pleased that earlier today the Senate agree to a motion put forward by Senator Abetz and myself—there is not much that Senator Abetz and I agree on, but we agreed on this one—regarding this matter. The Senate agreed today that the Australian government should consider making it an offence to travel overseas to receive an organ acquired from a non-consensual donor and that it should also establish a register of Australians travelling overseas to receive transplants, including details of the country they receive them in. I sincerely hope that the government takes this recommendation seriously.

I have no doubt that the overwhelming majority of people find the notion of organ harvesting abhorrent. It brings to mind a fictional dystopian future, not something that should be occurring in the world today. Just think of what organ harvesting means: people unwillingly having a kidney removed—which means they would probably survive that process—or other organs, like the heart and lungs, and people being killed for their organs. We know that organ harvesting from non-consensual donors is occurring. It is happening in 2016, particularly in China, and it has been going on for years.

Since the 1990s there have been reports and evidence of forced organ procurement in China. These organs come from executed prisoners and prisoners of conscience, mostly Falun Gong practitioners, Tibetans, Uighur peopleand Christians. Researchers estimate that as many as 1.5 million victims have had their organs harvested for China's transplant industry. In 2005, China admitted to harvesting organs and said it would reform its practices, but in 2010 the director of the China Organ Donation Committee told The Lancet that more than 90 per cent of transplanted organs still came from executed prisoners. In late 2014 China announced that it would switch to a completely voluntary donation-based system and said that reports of the practice continuing are non-factualand baseless.

But you only need to look at the evidence. We had the world experts who have been delving into this evidence, Canadians David Matas and David Kilgour, at Parliament House this week. The evidence that they presented is very, very compelling. The evidence they gave showed that China cannot be meeting its needs on a voluntary basis alone given that between 2012 and 2013 only around 1,400 people signed up to donate. From looking into all the hospital records of the transplant hospitals in China, David Matas and David Kilgour estimate that there are between 60,000 and 100,000 transplants occurring every year. So we have 1,400 people signed up to donate versus 60,000 to 100,000 transplants occurring every year. Even if you say, 'Okay, it is just from executed prisoners so you may as well use those donations,' again, we have very limited information from the Chinese government as to how many prisoners they execute each year, but the estimates are that it is in the order of around 1,000 to 2,000. Again, that is nowhere near meeting the 60,000 to 100,000 transplants that it is estimated are occurring each year.

I am really deeply concerned that Australians may be driving this practice, unwittingly or not. Bringing it back to the legislation that we are discussing today, we need to be increasing the number of organs that are available in Australia so that Australians do not feel that this is their only hope of gaining an organ to allow them continue to live. There is limited data available on how many Australians are travelling to China to receive organ transplants, but, according to the Australia and New Zealand Dialysis and Transplant Registry, 53 Australians travelled to China to receive transplants between 2001 and 2014. It is acknowledged that these figures could be drastically under-reported, because we do not have any registration. All of these Australians might have family members in China who are acting as donors, but it seems unlikely. It is probably likely, sadly, that they are contributing to terrible human rights abuses of Chinese prisoners and persecuted minorities, whether they are doing it intentionally or not.

The motion that Senator Abetz and I moved earlier today asked the government to consider making it an offence to travel overseas to receive an organ acquired nonconsensually, which is what Spain, Israel and Taiwan have already done. We are also asking the government to consider establishing a register of Australians who receive organs overseas so that we have a better understanding of how Australians might be contributing to this awful practice.

We want those actions with regard to Australians travelling overseas. Coming back to home, we want action to encourage Australians, in whatever way we can, to be giving the gift of life by donating their organs. I will conclude by urging all Australians to consider joining the organ and tissue donor register. It really is the gift of life that you can give to one of your fellow Australians. And when you have registered, please take the time to talk to your friends and family about your wishes, so that they know your intentions, should the very worst happen.

Derryn Hinch (Victoria, Derryn Hinch's Justice Party) Share this | Link to this | Hansard source

I know that a lot of senators rise from their seats in this place to talk about things that are close to their heart. Well, I stand here tonight to talk about something that is close to my heart, literally—a few centimetres from my heart—and that is my liver. Probably I am one of the few if not the only liver transplant recipient to stand here in the Senate. I stand here as one of those lucky Australians who received a new life through the generosity of a donor family, and, even more importantly, in their time of grief—in my case, the family of Heath Gardner, who died only a day before his 29th birthday. I lived and I live now because he died. That was more than five years ago. It was after I had been diagnosed with terminal cancer and given 12 months to live. After my transplant the pathologist showed me my old liver. I asked, 'Do you see many as bad as that?' He said, 'Usually at autopsies.' I asked, 'How long do you think I had to live?' He said, 'Well, now that I have got it out and had a look at it, I reckon about two weeks.'

We have had numerous campaigns to improve organ donorship in Australia. Former Prime Minister Rudd and his government deserve credit. They committed $151 million over four years, and I shudder to think how much of that was wasted on administration costs. That is why I applaud and approve of this move to streamline the system.

We have opt-in and opt-out systems for organ donation. I must admit that when I wrote the book A Human Deadline—A Story of Life, Death, Hope and House Arrest I devoted a chapter in it to the opt-out system, which is the way the Spanish people have gone. I thought that that was the way to go. I was a great advocate for opt-out, where everybody is presumed to be a donor. It is presumed consent—presumed approval. I have since changed my mind. Under opt-out everybody is in unless, for whatever reason, you sign a thing to say that for cultural, religious or whatever personal reasons you do not want to do it, and that would be enough. I have now changed and I believe that the opt-in system, which I now call opt-in-plus, is the best way to go. With opt-in-plus you would have what I call a living will, and in this parliament I hope to push to get this approved—a living will. It means that once you have become a registered organ donor in Australia that is a living will, and that will happen if your organs or tissue are declared to be suitable for transplant.

The sad thing in this country—keeping in mind that we have one of the worst rates of organ donation in the free world—is that even though you are on the list, even though something like six million Australians are on the Organ Donor Register, very few of them will be transplanted. Very few of their requests will be honoured.

About 150,000 people die in Australia every year, and, as Senator O'Neill pointed out, only something like 435 people's organs were used for transplants. Because of multiple uses and multiple organs, they gave new life to about 1,200 people. The reason why there are so few is partly the circumstances of death and that the organs are not suitable, but the main reason—and this is a national scandal—is that families overrule their loved ones. You are on the register. You say, 'I want to be an organ donor.' For more than 40 per cent of people on the register who die and who want to give the gift of life to somebody, their organs cannot be touched, because no hospital in Australia will transplant an organ from an organ donor, even if they are on that list, if the family in their grief says no.

You can understand it, because most people—to be macabre—who are suitable as organ donors die suddenly and often tragically in terrible circumstances. Another example I will give you probably would not have helped things, but just imagine it. Just imagine you were a mother of a 10-year-old girl. You wave your child off to school in the morning and say, 'Bye-bye darling; I love you.' Twelve hours later, after some terrible accident, you are standing in the intensive care unit at a hospital and they are saying, 'Would you donate your daughter's organs?' It takes enormous strength, enormous courage to say, 'My little girl's gone, but I can save somebody else's.' Out there are hundreds of kids desperately in need of organs to give them some sort of life. In that moment of grief of course it is going to be hard. But adults on the register say, 'I want to be a donor.' The hospitals just say, 'The family didn't approve,' and so it does not happen.

Good things are happening even now. People are being trained up following some of the Canadian systems whereby people are trained as counsellors and so can make it less of an emotional pain for people as they decide to give loved ones' organs out to be transplanted.

One of the Justice Party's main promises when we campaigned was to improve organ donor numbers in Australia, and we want to get one million more in a living will. It can be done. My surgeon, Professor Bob Jones at Gosford Hospital, was talking about the old system where on your driver's licence you had a little tick. 'Will you be an organ donor? Yes or no.' Most states have phased this out, but anyway. He said to me, 'They asked the wrong question.' He said, 'The question on the driver's licence should have been, "Would you accept a donated organ?" and you would get a 95 per cent acceptance rate on that one.'

Senator Rice was talking quite rightly—and I applauded the move by her and Senator Abetz this morning—about organ harvesting in places like China. When I was told I had 12 months to live, as the months ticked by and there did not seem to be any chance, other than a couple of false alarms, of getting a new liver, I was told by a senior businessman in Melbourne that I could go to Shanghai and for $150,000 get a new liver next week. I presume from that that they would almost execute on order. How you could morally extend your life by doing that I cannot believe, but I was also told I could go to India and do the same thing.

I think it was an apocryphal story, but at a function one night a Chinese businesswoman said to me: 'Don't worry about China; there's a hospital in London. A lot of Middle Eastern people go there, and you can buy an organ.' And some well-known people have bought organs for transplant over the years. But I condemn those practices in China and I am happy to support Senator Rice and Senator Abetz.

As I mentioned, in this country we have one of the lowest donation rates. We have had efforts—great efforts at times—by Transplant Australia and by DonateLife. We have the biennial Transplant Games. Several months ago I opened those games when they were held in Penrith. Those sorts of things do give awareness and, yes, people get on the register, which is very good, saying, 'I am happy to donate my organs', but, as I said, it is the families who knock it back. Bob Jones, who I mentioned, said to me that he could conduct 50 more liver transplant operations a year if he had access to the organs. Most people do not know but, if you are on the list, generally, the organs you donate will go to somebody in your state. That is the first prerequisite, unless there is a red alert of some sort and somebody in another state is in desperate need; then, they will cross state lines. That is what he said—50 more a year—it is just extraordinary. He and his team have transplanted more than 1,000 people here in Australia.

This bill has 24 recommendations from the 2015 review into the implementation of a national reform agenda on organ and tissue donation transplantation. By setting up the Australian Organ and Tissue Donation and Transplantation Board to replace the Advisory Council, they say this will allow strategic oversight, which is currently lacking. The report in August 2015 stated:

Current governance arrangements for the OTA are advisory in nature only and do not provide any strategic oversight, performance monitoring, succession planning or mentoring of the CEO. The Review found that stakeholders were generally in support of the establishment of a Board of governance for the OTA who would be responsible for these functions (noting that legislative amendments—

I mentioned those before—

would be required). Some concerns were raised by a number of stakeholders over the observed ‘defensiveness’ of the OTA and tendency to limit debate about controversial issues; …

Well, they were spot-on about that one because I was a DonateLife Ambassador—I am very proud of it—until I spoke out in favour of opt-out rather than opt-in, and I had my ambassadorship removed. I did not add that to the list of 16 sackings I have had in my life; I just put that as an ambassadorial removal!

This is a small step but a very important step in reforming organ and tissue donation in this country. I will be fighting in this place to get one million more donations onto the register. I want to do that because I will be able honour Heath Gardner, his mother, Lyn, his father, Trevor, and his sisters, Kimberly and Melanie. I have met them all. I could not know when I promised them after I met them after my transplant—they tracked me down and I knew I wanted to honour their gift—how I would ever be in the position I am in now, five years later. Thanks to their son and the decision of his sisters and his mother I am here to try to do something about it. It was so whimsical: he was brain dead from a gunshot wound to the head. In the hospital, Heath's father had been told that he was not going to make it. He walked down to the car to meet his daughter, who had just arrived at the hospital, and Trevor Gardner said to his daughter, Kim, 'You know, they have asked me would we donate Heath's organs.' Trevor said, 'What do you reckon', and Kim said, 'Why not.' Those two words are why Derryn Hinch is standing here now. That is why, five years later, I am now in a position that I can do something about it. Heath Gardner: I am going to keep that promise.

Fiona Nash (NSW, National Party, Deputy Leader of the Nationals) Share this | Link to this | Hansard source

As the minister responsible at the time, the then Minister for Rural Health, who initiated this process, I am absolutely delighted to stand here today and close the debate. I will be very brief. I want to acknowledge Senator Hinch, who last year did indeed call my office at one point to offer some support for what I was doing, in sometimes interesting circumstances. I have not forgotten that and I still very much appreciate it.

I do want to make two quick points following up from other senators. One is to make the decision to donate. Senator O'Neill said earlier that the time running up to Christmas is a wonderful time to think about the gift of giving. Think about making that decision to donate, and also talk to your loved ones about your decision. I thank all senators for their contributions and commend the bill to the Senate.

Question agreed to.

Bill read a second time.