Peter Dutton (Dickson, Liberal Party, Shadow Minister for Health and Ageing) Share this | Link to this | Hansard source

Proudly, Australia’s surgical outcomes for organ and tissue transplantation are among the best in the world. The clinicians in our hospitals set standards that are the envy of the world. In fact, we have a long history of organ transplantation in this country. The first transplant operation in Australia was a corneal transplant that was done back in 1941. The first kidney transplantation surgery was performed in 1956, and since then more than 30,000 Australians have benefited from transplantation.

By the time many Australians register their need for an organ or tissue transplant, they have been living for many years with chronic illness which affects their every waking minute. They might have had to endure the fatigue, the nausea and the endless dialysis procedures that are the lot of people with renal failure, or the daily struggle for breath while doing even the lightest tasks that is part and parcel of many forms of irreversible chronic lung disease. For these Australians and their families, every day waiting for the phone call announcing the possibility of a transplantation procedure is a lifetime.

This torturous need for organs and tissues for transplantation for ordinary Australians is incredibly frustrating for all of us because the benefits are so startling. Not only are our results world’s best, but indeed the Australian organ donation scheme is in fact very cost effective. A report published in 2006 entitled The economic impact of end-stage kidney disease in Australia compared the direct cost of kidney transplantation with dialysis. It found that the cost of the first year after a kidney transplant is $62,375 and the subsequent annual cost was $10,749. These costs compare with an annual cost of between $48,000 and $56,800 for dialysis patients. The report estimated that increasing kidney transplants by between 10 and 50 per cent by 2010 would save between $5.8 million and $25.9 million and substantially increase the number of years a person would have, as well as their quality of life. The report concluded that increasing the rate of transplantation would be cheaper and more effective than the usual treatments given to patients with end-stage kidney disease such as dialysis and medicines.

However, while our doctors and nurses continue to make strides forward in transplantation surgery, we are still falling down in numbers of organ donations. Australia’s rate of organ donation has failed to keep abreast with demand for transplantation. In fact, many Australians are forced to travel overseas to purchase an organ in places where this practice is legal. In February this year, the now disbanded National Clinical Taskforce on Organ and Tissue Donation handed down their blueprint report, the National Clinical Taskforce on Organ and Tissue Donation final report: think nationally, act locally. Quite alarmingly, this report revealed the fact that, over the past two decades, the general measure for the availability of organs, known as the donor rate, has declined from 14 donors per million people in 1988 to 9.4 donors per million people in 2007. To put that in perspective, by way of comparison Spain has a rate of 33.8 donors per million people, France 23.2, the USA 26.9 and the UK 10.5, according to Australians Donate, which is now closed. From the 198 Australians who donated their organs and tissues last year, 349 kidneys were received by people in need, 133 livers helped 147 Australians and there were 150 lungs, 28 pancreases, 125 corneas and 42 heart valves. These organs and tissues were all gratefully received and saved many lives, but this did not meet the enormous demand in our community. It is not that demand is falling. In fact, we are seeing quite the opposite. More and more Australians are succumbing to the so-called lifestyle diseases of obesity and diabetes, and the effect is a growing need for transplantation. This trend has developed at the same time as unprecedented increases in diabetes and kidney disease in Indigenous Australians, and the demand for organ transplantation in Australia is expected to continue to grow quite strongly into the future. According to Transplant Australia, there are currently 3,000 people—Australian children and adults—on the official organ and tissue transplant waiting list waiting for a heart, kidney, lung, liver, pancreas or corneal transplant. Tragically, of those waiting for a heart, lung or liver transplant, 20 per cent will die before they receive one. That is a heartbreaking statistic for everyday Australians in need and for their loved ones and the community.

Organ or tissue transplantation is an effective and well-established treatment that can save lives or significantly improve quality of life, especially for those facing illness, disability or premature death because of organ or tissue failure. It is often the last-resort treatment for significant illnesses and diseases. Ironically, there is an incredibly high level of community support for organ donation. There are a number of reasons why this has not translated into high donation rates in practice. The most common reason cited by families when they decline to donate a deceased relative’s organs and tissue is that they simply never asked whether or not their relative wished to donate their organs. Australians do not like to talk about death, and that will often flow on to discussions with loved ones about their feelings on organ donation. Many doctors and nurses feel awkward in bringing up the subject with relatives at a time of mourning and just cannot bring themselves to do it.

Sadly, there remains much misinformation around organ and tissue donation. Myths abound. Transplant Australia, a support organisation for transplant recipients and donors and their families, says they hear some of the best ones. For example, people fear that their organs will be removed while they are alive or that if doctors know your loved one plans to be a donor, they will let him or her die to get their organs. People often think they are too old for organ donation, but in fact the oldest organ donor last year was 80 years of age. There has also been recognition that organ donation has been largely handled on a state-by-state basis with little national co-ordination. Even within states there is considerable variability within jurisdictions and even within specific hospitals. While a variety of groups have done important work to dispel some of the more damaging urban myths around  organ donation, more work remains to be done.

I am justifiably proud of the record of Australians and the success story in this country around organ donation. I am also particularly proud of the bipartisan approach to improving the lives of Australians needing organ and tissue transplantation. In the year 2000, the Australian Organ Donor Register was established to create a better database of organ donors that would be available nationwide and to ensure that active consent was given, rather than the former tick-a-box system on the back of the drivers licence. In 2002, the Health Ministers Advisory Council, with bipartisan support, made Australians Donate the nationally recognised peak national body for organ and tissue donation for transplantation.

Australians Donate had four main objectives: maximising organ and tissue donation for transplantation, and enhancing community confidence in the associated systems; maximising the level of organ and tissue donation and the effective use of available donor organs; developing an effective and nationally consistent program and creating an environment in which Australians can donate organs and tissues for transplantation with confidence; and ensuring that ethical standards apply in the conduct of the work. This important body has now handed over its responsibilities to the cognate committee on organ and tissues under the chairmanship of Professor John Horvath.

In 2006, the former coalition government recognised the importance of bridging the gap between the demand for transplantation and the availability of organs. The then coalition government provided $28 million towards boosting our organ donation rate. In February 2006, the National Organ Donation Collaborative was established and managed by the National Institute of Clinical Studies, a body of the National Health and Medical Research Council.

The collaborative’s model was based on a similar program in the US, which has achieved a 20 per cent increase in organ donation rates in collaborative hospitals in the US. The collaborative brought together teams of experts from 26 hospitals across our country to examine the best practice models where high donation rates have been achieved. It was charged with developing evidence based guidelines to support the organ donation process. The National Clinical Taskforce on Organ and Tissue Donation was established by the then Commonwealth minister for health in October 2006 to provide evidence based advice to the government on how to increase the number of safe, effective and ethical organ, eye and tissue donations for transplantation to Australians in need. One of the first steps of the new taskforce was to hold a workshop in December 2006. That brought together a wide range of professionals and consumers to identify opportunities to improve organ and tissue donation rates.

In a bipartisan move, in that same year the Commonwealth, state and territory governments signed up to a 10-point plan to boost donation rates. The collaborative and the taskforce complement each other. The work of the collaborative directly supports the taskforce’s objectives through the development of national approaches to improve hospital processes which can be implemented at the local level. This fits well with the taskforce’s principle of thinking nationally and acting locally. The collaborative project has also provided information to the taskforce, such as recommendations to improve the identification and notification of potential donors and ideas around reforming procedures to obtain consent to donate.

In 2007, following a report from the collaborative to the then health minister, the Hon. Tony Abbott MP, several of the recommendations were progressed immediately, including the development of a national stakeholder charter for activities to raise community awareness. The then minister agreed to the adoption of clinical triggers in hospitals to identify potential donors and to the production of a national performance report. The final report handed down by the taskforce recommended that a new governance structure for the Australian organ and tissue donation and transplantation sector be established. It made a number of recommendations as to how this body should be structured. I am pleased that the government has given due recognition to this report.

The Australian Organ and Tissue Donation and Transplantation Authority Bill 2008 proposes to do three things. Come January 2009, it will see the creation of the Australian Organ and Tissue Donation and Transplantation Authority, which will be an agency under the Financial Management and Accountability Act 1997. Secondly, the CEO is to be appointed. Thirdly, it will see the establishment of the Australian Organ and Tissue Donation and Transplantation Advisory Council.

This council will advise the CEO about organ and tissue donation and transplantation measures. As the minister mentioned, the advisory council will comprise a chair and between nine and 15 members with expertise in a wide range of areas related to organ and tissue donation and transplantation. I am pleased to see the current government’s plans to continue the positive steps initiated by the coalition to ensure that more Australians become organ and tissue donors to the benefit of their fellow citizens.

In conclusion, I congratulate all of those people, from the department to the respective agencies, to people who are involved right across the country in lifting the rates of organ donation. They should be pleased and proud of the work that they undertake. They know that they are providing support and hope for many deserving Australians. I hope that together we are able to increase those rates in the years ahead for the benefit of all Australians. We support this bill.

Belinda Neal (Robertson, Australian Labor Party) Share this | Link to this | Hansard source

I rise in the Main Committee today to speak on the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. Australians are a generous people, often prepared to assist with the medical treatment of others by the donation of blood and parts of the human body, with no personal reward except for the satisfaction of helping another. This is not the case in many other countries, where people making blood and other tissue donations do so on a commercial basis, being paid for the donation.

Despite the generosity of Australians in this regard, the level of organ donation is far below the level of some other countries and what would normally be expected in Australia. This indicates that the mechanisms for organ donation are not working properly and that this reform is needed to allow the normal instincts of the Australian community to be given effect to.

Organ donation is supported by more than 90 per cent of the Australian population, but this country has a chronic shortage of organs for transplant. There are currently 1,800 Australians waiting for an organ transplant. Last year, the 198 deceased organ donors, whose decision to donate their organs resulted in 657 transplant procedures, met only one-third of the demand.

The register of organ donation and transplantation has reported that in Australia in 2006 there were just 9.8 organ donors for every one million people. The donation rate in the USA is 2½ times that of Australia, and Spain’s donation rate is three times Australia’s rate. Thousands of Australians currently can wait on organ donation lists for months and sometimes even years. For these people, this represents a potentially devastating period of debilitating ill health and serious disruption to family and working life. For too many of these people, the availability or otherwise of organs for transplant can mean the difference between life and death.

Increasing the rate of organ donation has been an unachieved goal of Australian health policy for too long. Despite the good intentions and the overwhelming support of the Australian public for organ donation, there has been little national leadership in this field. This bill seeks to redress that lack of leadership. It will provide a comprehensive package for the organ and tissue sector that will enhance, implement and monitor national reform initiatives and programs aimed at increasing Australians’ access to life-saving and -transforming transplants.

The measures enabled by this bill will allocate $151.1 million over four years, including $136.4 million of new funding to establish the Australian Organ and Tissue Donation and Transplantation Authority. The bill will target a number of specific areas of need in the organ donation and transplantation sector. It will provide $67 million to fund dedicated organ donation specialist doctors and other staff in public and private hospitals around Australia. There will be an additional $17 million in new funding for hospitals to meet the additional staffing, bed and infrastructure costs associated with organ donation. It will include $13.4 million, to continue national public awareness and education programs to increase knowledge about organ and tissue donation and transplantation, and to build public confidence in Australians donating for transplantation, and $1.9 million to support the families of deceased donors.

A national network of donation and transplantation agencies will be based in the states and territories to facilitate the donation process. This network will promote and ensure equitable, safe and transparent national transplantation processes to manage waiting lists and the allocation of donated organs. It will maintain a national eye and tissue donation network and will introduce living donation programs such as a paired kidney exchange. It will formulate national policies and protocols and will include working closely with peak clinical and professional organisations in the development of consistent clinical practice protocols and standards.

The Australian Organ and Tissue Donation and Transplantation Authority will also enhance the information available on the transplant of organs scheme by providing support for in-hospital practice improvements and education programs. They will manage an ongoing national community awareness and education program and disseminate information about organ or tissue donation and transplantation. A national data and reporting system will be introduced and managed.

The reforms contained in this bill have a proven track record of maximising donation rates. Similar models have been used in several comparable countries around the world. The experience from these countries shows clearly that such a coordinated and integrated national approach can work. When followed by nationally coordinated and sustained effort, this approach can, over time, deliver real improvements in organ donation and transplantation rates in Australia.

The Australian Organ and Tissue Donation and Transplantation Authority will be an independent agency managed by a CEO with direct accountability to the Commonwealth Minister for Health and Ageing. The CEO of the authority will advise the Minister for Health and Ageing about organ and tissue donation and transplantation and provide an annual report to the minister for presentation to the parliament. Expert advice will be provided to the CEO through a new Australian Organ and Tissue Donation and Transplantation Advisory Council that will comprise a chair and up to 15 members with expertise in a wide range of areas.

Australia’s population is ageing and, in the near future, it will experience higher incidences of chronic diseases such as obesity and type 2 diabetes, with all their complications and adverse health effects. Chronic conditions such as kidney disease take a toll on thousands of individual Australians and their families and on the national health budget. One example will suffice to illustrate the high cost that we are paying for our currently inefficient system of organ and tissue donation. The cost for each person waiting for a kidney transplant is $83,000 per annum if they are receiving hospital based kidney dialysis. In contrast, the solution to that problem is far cheaper. The cost of a kidney transplant is just $65,000 per recipient for the first year, and an additional $11,000 per year thereafter. This is a net gain for the nation and a huge benefit for the thousands of individuals and their families suffering through long waits for organ transplants—let alone, of course, the personal suffering involved.

Lifting organ donor rates will help us build a more efficient health system and help sick Australians return to full participation in work and in the community. Above all, the reason why we must lift the number of organ donations is that, by doing this, we can help save and transform the lives of thousands of Australians who are suffering poor health. I commend the bill and I congratulate the opposition on their support for this bill.

Kay Hull (Riverina, National Party) Share this | Link to this | Hansard source

I rise in the chamber today to speak in support of the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. I commence my presentation by paying tribute to a young lady who came from the Riverina. Tina Elliott was a wonderful young girl. She was a resident of Griffith in my electorate and her life was tragically cut short in 2006 at the very tender age of 20. Tina had touched so many people in her life and she was nominated for the Australia Day Young Citizen of the Year Award at the 2004 Australia Day Awards ceremony for her efforts in helping in the community with various organisations and ventures, including Meals on Wheels and being a member of the Creative Riverina Youth Team.

Tina was an extraordinary young woman who felt that she would make a difference in people’s lives by the actions that she took every single day, and she made every day a winner. Even after Tina passed away, she managed to make a difference every day in someone’s life. That difference was made by the donation of her organs. Her parents, Ross and Cathie Elliott, and her brother Michael decided to donate her organs and consequently five people’s lives were saved by receiving Tina’s organs. After receiving a call advising the family that the successful transplants of Tina’s double lungs, kidney, pancreas, liver and heart valves had been performed, Tina’s dad, Ross Elliott, was quoted in our local newspaper the Area News as saying, ‘Tina has touched the lives of so many—it puts me at peace to know she is saving lives and is still touching lives in this wonderful way.’

It is wonderful to know that Tina was able to make a difference in so many lives through her wonderful attitude toward life. Continuing to do so in her death with this wonderful gift is extraordinary. It is also wonderful that Tina’s parents and her brother Michael were able to make that decision to donate Tina’s organs at such a difficult and tragic time. I have paid tribute before and I pay great tribute now to Tina’s family and to Tina on the life that she led and the life that she has given other people by way of this very generous gift.

I have raised the issue of organ donation in the House many times. I have done it through my newsletters and I have issued several press releases; I have given information and I have encouraged people to talk to each other about the possibilities of a premature death and what they would wish to be done with their organs. It is a vital discussion that needs to take place in every household amongst everyone from young to old. It is a fact that, because of lifestyle diseases and issues that we confront, we will require more organs than we ever have in the past.

In Australia, a person has a 10 times greater chance of requiring an organ or tissue transplant than they have of becoming a donor. I think that, if people were to understand those statistics, maybe they would have more considered opinions and undertake to have their wishes documented and determined at a very early point in their lives. People may need transplants because they have been born with a structural abnormality of an organ, such as a congenital heart defect, or because they have been born with a disease that causes an organ to fail or they have been unlucky enough to develop a disease or an illness that has caused an organ to fail. For example, diabetes is one of the leading causes of organ failure across the world and requires many of the organs that are donated.

Our kidney transplant survival rates are about 90 per cent in the first year and over 75 per cent after five years. Our patient survival rates for heart and liver transplantation are also 90 per cent in the first year and 85 per cent after five years. Pancreas transplants have the highest survival rate of 94 per cent at one year and 87 per cent at five years.

The organs that we can donate include our kidneys, our heart, our lungs, our liver, our pancreas and some of our tissue, including corneas, heart valves and skin and bone. The difference that we can make in the lives of people who wait every day for a terrible fate to befall them is just extraordinary. Sometimes they can be the recipient of a call to say, ‘We can prep you now and we can deliver you some life-saving organs,’ because somebody has said, ‘I will be an organ donor.’

If I were to emphasise anything in organ donation and tissue donation legislation, rules and criteria, I would raise the issue of the way in which family members and those who make the decision to donate organs are carried through the process—the way in which they are considered at the time. The issue of when the body of an organ donor is released to be taken home in order to be buried or to have a service for that organ donor is sometimes muddied. If I were able to make changes to or suggestions about legislation, I would enhance the benefits, the value, the capacity and the support structure that is provided to families who make this decision at that tragic time, to enable them to be kept fully informed of every process and to know when the body will be released back to them so that they can take home their precious loved one.

I have had raised with me in my electorate a significant, disastrous case of a family who agreed to donate their child’s organs. Their child was on life support. They felt that their child was just totally away from their control and that they had no say and no rights at the time as to when they could pick their little girl up and take her home. It was tragic. They felt alienated by the process and it had a disastrous effect on the family. We have to recognise that we need a significant support structure to surround and envelop those people who are involved in this process in order to give them the support and the confidence that they need about their child. It was only just raised—and it will be raised, I am sure, time and time again during this debate by, probably, people in the opposition—that there are issues surrounding the issuing of death certificates. It is those areas that I am most concerned about. When does the death certificate get issued? How does that then impact on the feelings of the family in the future when they look back on this gift of life that they were part of delivering in tragic circumstances?

This is a fantastic bill; it is something about which we need to hold our heads high. In Australia we are world leaders in clinical outcomes for transplant patients, and there have been over 30,000 Australians who have benefited since transplantation first became a standard treatment offered. We have led the way and we continue to lead the way, and I congratulate the government again for raising and profiling this issue once again for the people of Australia. But I do urge that consideration be given to ensuring that the structure for the support of families and those people who are involved in making the decision to donate a loved one’s organs is there. That structure should give them confidence and involve them as a part of the whole process and not exclude them in such a way that they may later regret having made this decision.

I think that must be the worst possible place to be in and that was how the couple, the parents, who are my constituents felt as a result of their experience. I can only put that into the chamber for thought and consideration, because, whereas the majority of organ donations I am sure take place in a wonderfully comforting and supportive environment, if there is just one family out there who harbour regret, who harbour pain and anguish and who have no peace of mind as to what actually did constitute their daughter’s death, then that is sad. We should ensure that that never takes place in anybody’s family or for any person who has to make this difficult and courageous decision. I stand here today welcoming this bill, encouraging people to talk to their families about organ and tissue donation and encouraging our Australian people to remember those who are waiting desperately every day for a chance at life and those who may be given a chance if only we would have this discussion within our families.

Julie Owens (Parramatta, Australian Labor Party) Share this | Link to this | Hansard source

I rise, as all my colleagues have today, to support the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. Australia has one of the highest success rates in organ and tissue transplantation in the world. We are very good at it; our success rates are right up there, yet we have one of the lowest organ and tissue donation rates in the world. Australia’s organ and tissue donation rate is approximately 10 donors per million of population. Most of the OECD countries have at least a 50 per cent higher rate and some of them have rates as much as 100 per cent to 200 per cent higher.

Over recent years, the rate of organ donation has not really got any better. In 2002, we donated 206 organs. It dropped to 179, and then went up to 218, down to 204 and back down to 202, so it has stayed relatively stable over the last five years. This bill is about changing that; it is about drawing on the best practice models from around the world and making lasting change—making sure that we in Australia can use our exceptional skills in transplant operation to save lives.

The Prime Minister in his speech in the House earlier this week suggested that we all need to talk about organ donation, and I think in fact that we do. I am going to talk a little bit about why I find even speaking on this issue incredibly confronting. I do not know whether I am on my own on this, but I suspect that there are many people that have similar completely irrational responses to the idea of having their organs removed even once they are of no use to them. I would say that I did not realise exactly how confronted I was until I went down to the Red Cross to fill in the forms. Once I was elected as a member of parliament I was asked to do it. I thought it was a good opportunity to do the right thing, so I went down to fill in the form. I did fill in the form. I sent it in and I am a registered donor, but I did find it incredibly confronting.

While I do not have any irrational response—in fact, I have quite a positive response—to the idea that my organs might end up in someone else, I have this irrational response—almost a repulsion—to the idea that they might be taken out of me. It is completely irrational. I have no problem whatsoever with the idea that someone else’s organs might be put in me. In fact, I think that would probably be quite a good idea. So I found myself in the odd situation of realising that, while I was happy to accept someone else’s organs, I was having real trouble with donating my own. That is quite an interesting position to be in.

I did it, and I think we all do it, because there is nothing more repulsive than the idea that someone desperately in need of an organ would die because mine went to waste. That is why I am an organ donor. Because our responses to it are sometimes so irrational, it is something that we need to openly discuss among ourselves and with our families. It an incredibly important bill that we are looking at at the moment. There are currently 3,000 people, children and adults, on the official organ and tissue transplant waiting list in Australia who are waiting for life-saving surgery and for the donation of a heart, kidney, lung, liver, pancreas or cornea to transplant. Of those waiting for heart, lung or liver transplants, around 20 per cent will die before they receive one.

The reality in Australia, because of our low donation rates, is that we do not even put everybody in need of a transplant on the official transplant lists. There are currently around 8,000 people undergoing dialysis treatment in Australia and that number increases by about six per cent every year. But, on the official transplant waiting list for a kidney, there are only about 1,500 and the waiting list on average for those people is about four years. The other 6,500 people are not put on the list because it is considered to be futile. The chances of them receiving a transplant would be very, very poor because there simply are not enough donors.

We do need to act, and this bill is about making those fundamental changes. It establishes the Australian Organ and Tissue Donation and Transplantation Authority to provide national leadership to the organ and tissue sector and to drive, implement and monitor national reform initiatives and programs aimed at increasing Australia’s willingness to donate and access to lifesaving and transforming transplants.

It establishes a national authority with funding of $24.4 million over four years. Perhaps even more importantly than that, the authority will have responsibility for implementing a $151.1 million reform package which includes new funding of around $136 million over four years. That extra money for the reform package does some incredibly important things to change the way we Australians respond to the issue of organ donation.

It provides $67 million to fund dedicated organ donation specialist doctors and other staff in the public and private hospitals around Australia. It provides $70 million in new funding for hospitals to meet the additional staffing, bed and infrastructure costs associated with organ donation, $13.4 million to continue national public awareness and education programs to increase knowledge about organ and tissue donation and to build confidence in Australia’s donation and transplantation system and $1.9 million to support the families of deceased donors. It also introduces other measures, including the creation of a national network of state and territory based organ and tissue donation agencies to facilitate the process, an enhanced training and education program for hospital and staff and a program to encourage increased donations by the Australian public.

Collectively, these measures are expected to establish Australia as a world leader in best practice organ donation for transplantation and to achieve significant and lasting results in a number of lives in our country. It is incredibly important legislation. It is overdue. This is something that Australia’s medical profession does incredibly well but that the community at large does far less well. We believe on this side, and I know it is supported by the opposition, that these reforms will dramatically improve the life expectancy of people who are currently suffering from quite severe illnesses. It is a very important bill and I commend it to the House.

Mal Washer (Moore, Liberal Party) Share this | Link to this | Hansard source

The Australian Organ and Tissue Donation and Transplantation Authority Bill 2008 will establish the Australian Organ and Tissue Donation and Transplantation Authority. This authority will oversee the coordinated and integrated national approach towards organ and tissue donation and transplantation. The bill also provides for a legislative framework to implement the measures outlined in the Australian government’s world’s best practice reform package for organ and tissue donation and transplantation announced in July this year.

At any one time in Australia there are around 1,800 people waiting for an organ donation that could save or transform their lives. Last year there were only 657 transplants from 198 deceased donors. Figures from 2006 from the International Registry of Organ Donation and Transplantation indicated that there are only 9.8 donors for every one million persons in Australia. Ironically, 90 per cent of Australians support organ donation. This is in sharp contrast to Spain, which has 33.8 donors for every one million persons—three times more than Australia.

Spain is the world leader in organ donation rates. How has this been achieved? According to Rafael Matesanz, director of that country’s national transplant organisation, this is due to efficient transplantation coordination and the way families are approached—not the policy of assumed consent, as suggested by some. While it can be seen that countries that have presumed consent have between 20 and 25 per cent higher donation rates than those with informed consent, some countries do not follow this trend when it is introduced. Sweden, for example, switched to assumed consent in 1996; it has one of the lowest rates of donation in Europe and changing the law made little difference. It is interesting to note that a European poll showed that, in the UK, 63 per cent said they were in favour of organ and tissue donation; however, 43 per cent of families refused permission for their relative’s organs to be removed. However, when families of Britons who die in Spain are approached in Spanish hospitals, the refusal rate falls to nine per cent. In fact, Spain had low rates of donation until a national network was set up in 1992—13 years after presumed consent was introduced.

Evidence from the US also indicates the importance of approaching families in the right way. A survey done by the Beth Israel Deaconess Medical Centre in Boston of 74 parents who had been asked to donate the organs of their recently deceased children showed that they were more likely to agree if they had been given information before the death, if the mention of donation came from the child’s doctor and if they had some time to think about the decision. Spain understands this. Their central agency drives and coordinates a nationally consistent approach to clinical systems and practices, and to community awareness and professional education. Hospitals and their staff have sufficient training and capacity to identify all potential donors, and there are no cost barriers in hospitals that prevent organ donation proceeding.

This bill implements a reform package that has learnt from this international and national experience and is based on Australian context and expertise. The new independent authority will provide national leadership to the organ and tissue sector and will drive, implement and monitor national reform initiatives and programs. They will: oversee and support a national network of clinical specialists in hospitals who are dedicated to organ donation; oversee a national network of organ procurement organisations which will manage the procurement process according to national protocols and systems; manage and monitor an ongoing community awareness and education program; introduce and manage a world-class national data and reporting system; administer funds to non-government organisations and provide essential associated services such as clinical data analysis and reporting, national organ matching services and professional training and education for clinical staff; and work closely with national clinical organisations in the development of consistent clinical practice protocols covering the donation process, allocation and waiting list management.

The bill will also provide new funding for medical specialist positions and other clinical positions in public and private hospitals dedicated to organ and tissue donation; provide a funding stream for public and private hospitals to cover the additional staff and infrastructure costs associated; implement an enhanced national education and training program for health professionals involved with organ donation; implement an ongoing community awareness and education program to increase knowledge about donation and transplantation and build confidence in Australia’s donation for transplantation system; provide appropriate support for the families of the deceased donors; implement equitable, safe and transparent national processes to manage waiting lists and the allocation of donated organs; and provide other national initiatives, including living donation programs such as paired kidney exchange. The funding of the overall package will be $151.1 million, including $136.4 million in new funding.

Our medical science in relation to successful organ transplantation is improving all the time. Research conducted at the Massachusetts General Hospital in Boston has seen four out of five patients who were given non-matching kidneys successfully adopt their new organ and live without immunosuppressant drugs for up to 4½ years. This was done by using bone marrow from the donor. Firstly, the recipient’s bone marrow was partially destroyed and an antibody used to lower the level of T cells—the immune cells responsible for organ rejection. Then they transplanted the kidney along with bone marrow derived cells from the donor and kept the patient in a sterile environment for about two weeks. The donated cells and the patient’s own cells created a mixed bone marrow, which caused the immune system to accept both the patient’s cells and the donated organ. Even though the chimeric state is temporary, the tolerance seems to be long-lasting, and work with animals suggests that it may last indefinitely.

The 1,800 people waiting for transplants represent significant costs. For every person waiting for a kidney, the cost is around $83,000 per annum if they are on hospital based dialysis. In contrast, the cost of a kidney transplant is just $65,000 per recipient that year and around $11,000 for every year thereafter. More importantly, the human cost is very high. For some it is the ability to have a normal life and for others it is the difference between life and death. In a country such as ours, with our medical knowledge and technology, it is very sad that, although we have seen an increase of one million in the number of organ donor registrations since 2002 to six million, there has been no increase in the number of lives being saved through transplants. This bill intends to change that, and I highly commend it to the House.

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

With 90 per cent of Australians supporting organ donation and with there being a longstanding shortage of organs for transplantation, the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008 is designed to lift organ donation rates and make it possible to save the lives of many Australians and return them to good health. That is why this bill before us today takes on additional relevance.

Today, I am proud to stand before the House and join with other members to support the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. I can say that I am a registered organ donor. On 1 September this year, I made a statement to this House about the Australian Organ Donor Register, which is Australia’s only organ and tissue donor register and is really a lifeline for Australians who are, unfortunately, on the waiting list for organ donation.

For some time in my electorate I have produced a fact sheet about organ donation. On the reverse side of that fact sheet is the actual registration form. Some might say this is a political statement but, with all outgoing correspondence from my office, I include one of these fact sheets and draw attention to the significance of organ donation. It is designed to lift the rates of organ donation within my electorate. When I, as do other members of parliament, attend railway stations in the morning or street meetings on Saturdays and Sundays, I hand out the organ donation sheet. Obviously there are reasons for being out and talking to constituents but, when it comes to organ donation, we all have a role to play in ensuring that the communities we represent properly understand this as an issue—not one where we simply tick it off and say ‘We support it’ but one where we actually translate that support into a positive commitment. The only way that can be done is by registering to become one of Australia’s organ donors.

I have tried to increase awareness in my constituency on this matter. That was not forced ahead because of this bill coming before the House. I was caused to have a very close look at organ donating because of Debbie Roberts, CEO of one of our youth organisations, Campbelltown Youth Solutions. She told me of her daughter Rebecca. Her daughter died aged 20 back in 2002. Her daughter had suffered as a diabetic for some time, but she actually died of a heart attack. Rebecca had taken it upon herself to have a discussion with her mum and her family to the effect that, in the event of her death, she wanted her organs to be available to assist others. Coming from a mum who had lost a child, that had a profound effect on me. That is why I ramped up this campaign within my electorate. By the way, as I said, Debbie is the CEO of an organisation that does a wonderful job for young people in my electorate who are trying to find solutions to drugs and alcohol and other things. She is obviously a woman who cares about the community. She had a profound effect on me. The discussions she had with her daughter prior to her daughter dying of a heart attack were why she became involved in organ donation.

Debbie has shared the correspondence that she has received from four recipients of Rebecca’s organs. It is very touching correspondence. The correspondence is not all from the recipients themselves; some of it is from the families. She does not know who they are—that is not brought to Debbie’s attention, because of issues of confidentiality—but she has been given copies of the letters. They show how other people’s lives have been profoundly affected and enriched—as a matter of fact, how life has been given—through Rebecca’s selfless decision to donate her organs should she die. Two people have benefited from her kidneys and two others have benefited from receiving her corneas.

That is just one instance of a person I happen to know through work in my community. There are countless other people in a similar position. We owe Rebecca a great debt of gratitude for the fact that as a young person aged 20 she had the courage to have that discussion with her parents with a view to donating her organs should she die. That came from a very young person showing great leadership in our community. I see on the face of Debbie Roberts when she speaks of her daughter how proud she is of her. But the issue is really not just how proud her mother is of her daughter in those circumstances; it should be how proud we are as a community that a young person would choose to take such a serious decision as that as early as she did.

This bill is designed to lift our rates of donation and to do something to assist those people who are unfortunately languishing on our waiting lists. According to the Australian and New Zealand Organ Donation Registry, as at July this year there were 1,793 people on the waiting list—1,357 were waiting for kidney transplants, 65 were waiting for heart transplants, 194 were waiting for liver transplants, 140 were waiting for lung transplants and 35 were waiting for pancreas transplants.

Up to August this year, 175 donors have saved the lives of 595 people. That is an incredible contribution to make to our community. Rebecca’s story, which I outlined to the House earlier, is one I will continue to place before my family, my staff and my constituents generally. I encourage every member, when we are corresponding or dealing with our constituents, to leave politics aside on this issue and ensure that we have very much a bipartisan position going forward in our unequivocal support for organ donation.

This bill will have the effect of establishing the Australian Organ and Tissue Donation and Transplantation Authority, which is, quite frankly, absolutely critical in ensuring these outcomes take place. This bill will provide $151 million over four years and that will hopefully help lift Australia’s donation rate to world’s best practice on organ and tissue transplants. The plan will be delivered in five stages: $46 million to introduce the Australian Organ and Tissue Donation and Transplantation Authority; $67 million over four years to fund dedicated organ donation specialist doctors and other staff in public and private hospitals; $17 million over four years in new funding for hospitals to meet the additional staffing, bed and infrastructure costs associated with organ donation; $13.4 million over four years to continue the national public awareness and education campaign; and, very importantly, $1.9 million over four years to provide counselling and assistance to the families of deceased donors who generally grapple with the notion that their deceased loved ones wished to donate their organs. That will always be a difficult position; therefore this money will go towards supporting those people in that difficult time.

I encourage all Australians to register to become organ donors. That is the critical first step in being able, as Rebecca was in Campbelltown, to give to somebody—albeit unknown—what could only be seen as the greatest gift one human being can give another: the gift of life. I commend the bill to the House.

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

I rise today to speak to the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008 to establish the Australian Organ and Tissue Donation and Transplantation Authority. Organ transplants are one of the miracles of modern science. The act of being able to take working parts from one person at the point of death and transplant them into another to give them a chance at life is a wonder. It is a gift of life.

At any given time in Australia, there are around 1,800 people who are on waiting lists for transplants. For many of them, life can be a misery. All of us hope that we will never be in the position to help firsthand by donating our organs and that we will all live a full and happy life, but the chances are that one of us may be. If we have not discussed the possibility with our families, if we have not made the commitment to register as an organ donor, if we have not considered how we can give someone the gift of life when we are leaving ours behind, then we will miss the opportunity.

Today I would like to talk about a couple of friends: one who made a donation and one who received one. Peter Stutley was a good bloke. He was a good family man who had worked in any number of different manual labouring jobs as a farm worker and a machinery operator. He would go wherever he had to go to find work, and you could be sure that he would give you value. You could also be sure that he would always give you a hand if you needed it. He had married a little later in life, at around 40, and had established a great young family of three boys with his wife, Marilyn. He had spent a number of years working at Moomba, in the state’s far north, making sure that his family was well established and provided for. He enjoyed the work and was popular with his workmates. Tiring of the travel and desiring to be closer to his boys as they were growing up, Peter made the decision to return to Kimba and go back to work as a farm worker. He was good at the job and enjoyed living at home on a full-time basis and being around to help encourage the boys, particularly on the sporting field.

One day Peter had been sent on ahead to drive some machinery to one of the farm properties. His employer was coming along behind to pick him up. He arrived at the destination and, like any good worker, he found something useful to do. Exactly what drew him onto the shearing shed roof we will never know, but we think probably it was to fasten down some loose iron. We do know there was a fall and, when his employer arrived, Peter was lying severely injured on the concrete. By late that evening he had been transferred to the Royal Adelaide Hospital and it became apparent that Peter was not going to recover.

What was it that just six weeks before had led the family to discussing organ donorship? Who knows? However, we do know that that was exactly what happened. Peter and Marilyn had discussed the issue and he had made it abundantly clear that if he had no further use for his organs then they should go to someone who did. At a time of incredible stress, Marilyn and a great lifelong friend, Marie, acted on Peter’s wishes. Marilyn speaks very well of the hospital, the doctors and the counselling both then and since. She did say, though, how important it is that we register as donors, as she spent considerable time and emotional effort in convincing those concerned that this really was Peter’s plan.

So the decisions were made and the family sat through the agonising wait for Peter’s body to shut down. Around 11 o’clock on Sunday evening, Marilyn and Marie needed a rest and found a bed. Little more than an hour later they were woken with the news that he was expected to pass away in the next couple of hours. Somehow the right instructions had not been left to the duty doctor and he was preparing for a total shutdown. If his organs actually ceased functioning before they were harvested, all would be lost. You can imagine the torment as Marilyn and Marie struggled to convince the duty doctor of what needed to happen; otherwise, all of the effort and tough decisions of the last few days would be lost. Anger, grief and frustration flooded over them. It was a stuff-up that no-one should have to deal with. They prevailed, but it was one of the glitches no-one should ever be put through.

In retrospect, Marilyn is fairly forgiving about this incident, as all of the rest of the process had been well-managed, but is determined to suggest something to make sure it never happens again. Her suggestion is: once all the appropriate decisions are made, a highly visible and recognisable symbol should be attached to the hospital bed so all staff know exactly what is to happen. If new staff come on duty, there should be no room for human error; all should be plain and obvious. I look forward to passing this advice along to the new authority once it is established.

Marilyn and Marie overcame the difficulties. They dealt with the stress, grief, loneliness, frustration and the agony of losing Peter, and his wishes were carried out. 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. Adjustment to life without her mate has been difficult but she is greatly strengthened by the thought that, in one way, nothing has changed: Peter is still giving someone a hand. She has become a strong advocate for organ donorship and continues to speak up for the cause.

The second story I want to tell is of a vibrant young woman with incredible energy who waited years for a kidney transplant, who in sheer desperation advertised nationally for a donor and who had made the decision that, if somewhere in the medium future she could not find a donor, she would give up on treatment. As with many on long-term dialysis, Nancy’s life revolves around that community. She says nearly all her friends suffer from kidney disease, have received organs, have donated organs or are family of those groups.

We all know someone on long-term dialysis. It keeps you alive, but only just. Your body is continually being drowned in life’s toxins. Just the loss of time, as sufferers can spend up to 20 hours a week hooked up to a machine, is an enormous drain on their lives. This is compounded by a lack of energy and general illness. The normalities of life—holding down a job or ever taking a proper holiday—are almost impossible to maintain. The things the rest of us take for granted become high-water marks in their lives.

Nancy is no ordinary young woman, though. So, while she dealt with her own problems, she set about making life more tolerable for other sufferers. Every year Nancy organises a one-week ocean cruise for people on long-term dialysis. This requires machines, volunteer doctors and nurses, and money. She makes it happen—fundraisers; corporate support; and volunteers, to help on the cruise and to raise money.

As I said earlier, Nancy was not prepared to just sit down and let whatever might happen come to her. After an earlier transplant, which was rejected, she spent years on dialysis awaiting a suitable donor. Advertising for a kidney took courage. She became something of a celebrity overnight. But, as she said to me at the time, ‘If I can’t find a kidney in the next few years I will give up.’ The strain of the forever-waiting list and the disability of life on long-term dialysis would get anyone down. Nancy was not only intent on fixing her problems, though; she was also raising awareness in the community. Her life has been serving others. She is quite a remarkable lady. I might point out that Nancy’s services to the dialysis community have been recognised with an Order of Australia Medal.

Nancy got her transplant—in the end, from her sister-in-law. It is worth reflecting on the contribution many family members make to help out their loved ones. But there would be no need for this sacrifice if we could only raise the public profile of this issue.

The change in Nancy’s life has been enormous. The very first time I saw her after her operation, only weeks afterwards, the transformation was immediately apparent: her skin glowed; she looked years younger; her energy and zest for life was on show for all to see. Nancy is going on doing all the things she has been doing for years with her group Dialysis Escape Line Australia. In addition, she has had the opportunity to travel—something which, apart from the cruises, she had longed to do for years.

What this story tells us of is the determination of some in our community to achieve change—and change is what we need. The tragedy is, of course, that too many Australians are dying, or are suffering terrible health, when there should be plenty of available organs if we could only promote the practice of organ donorship and provide the right support and advice for those dealing with what is always the most difficult part of their lives.

This bill, establishing a dedicated organisation for the promotion of organ donorship, is a good idea. Australia has a very unfortunate record of performance in this area. Top-performing nations—including a number of European countries and the United States—operate in the range of 20 to 35 donors per million of population. Last year Australia managed just nine. At the top of the list is Spain, with 34.3. In fact, there were just 198 donors in Australia last year, resulting in around 600 recipients having a decent chance at life. It is worth noting, however, that around 50 per cent of the families approached to donate do consent. At first glance, this would sound very high, but with less than one per cent of deaths resulting in the chance of viable organs being available, we do have the scope to at least double our performance.

It is a sad fact that around 2,000 Australians are currently awaiting a transplant, and each year hundreds die because of the shortage of donors. I might say that, just recently, I lost a friend who had waited many years for a heart transplant, whose body was so weakened by the experience and by the treatment of the years that she actually died on the operating table, after waiting all those years for that transplant. We can only think what may have happened had that organ become available earlier.

The European nations largely have a presumed consent rule—that is, a person may elect to opt out but, in the case where no preference has been stated either by the family or by the person, their organs may be harvested. It is a quantum jump from our current attitudes in Australia to this position, but it is a position I will support if we cannot significantly lift our rates—one which I will consider in the future.

South Australia has the highest rates in the country at 17 donors per million—almost double the national rate. The state has largely adopted the Spanish model, minus the presumed consent. This proves that there is much we can do on a national basis, and hopefully the formation of the Organ and Tissue Donation and Transplantation Authority will achieve this.

I draw my remarks to a close by calling upon all Australians to make a commitment to give the gift of life to someone else in the event that they have finished with theirs. The Authority will not solve all the problems, but it must make a difference. If not, we shall want to know why and find something that will.

Melissa Parke (Fremantle, Australian Labor Party) Share this | Link to this | Hansard source

I speak in support of the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008, which, as its name suggests, will create a national authority to advance the cause of successful and life-changing tissue and organ transplantation procedures in Australia. Such procedures represent some of the most dramatic and miraculous kinds of medical intervention that we have available to us in the 21st century. Many of us in this place will know, or know of, someone who is the beneficiary of an organ or tissue transplant. Of course the Prime Minister is himself the beneficiary of a heart valve transplant, and I would like to say that, while the focus in this area of health service tends to be on organ transplants, the transplantation of tissue is also extremely important and perhaps underrecognised.

Earlier this year—in fact, it was on the first, and last, Friday sitting—I moved a motion on the issue of organ and tissue donation, to coincide with Organ Donor Awareness Week. All those who spoke to the motion did so with heartfelt recognition of the gravity of this issue. The enormous benefits of organ and tissue transplant procedures are well known to all, but the fact that approximately 150 Australians die each year waiting for a transplant is not so well known. This is a preventable tragedy.

On Monday night on ABC TV, at the end of Andrew Denton’s show Enough Rope, there was a woman who spoke of the profound effect that a kidney transplant had had on her life after she had spent more than 30 years managing diabetes and seven years on a transplant waiting list. She talked about receiving a phone call from the transplant coordinator at 6.45 one Saturday morning to tell her the good news, and of how she needed time to put the phone down and run along the hall screaming with joy and relief. She said that, within six hours of the transplant procedure, her new kidney was working to regulate the chemistry of her blood and had brought her blood sugar levels into the normal range.

It is only right that we, as parliamentarians, are moved forward in the reform task by the sense of hope and joy, the health, the relief of pain and the miraculous staving off of death that organ and tissue transplant procedures make possible. We are also moved by gratitude to those donors and families of deceased donors who make the decision to donate organs and tissue. And of course we are moved by our understanding of the pain and the frustration, and sometimes the despair, of those who wait and wait and wait on the transplant lists.

The nature of the health policy challenges which this bill seeks to address can be described in relatively straightforward terms. There are approximately 1,800 Australians waiting for an organ transplant right now—

A division having been called in the House of Representatives—

As I was saying, there are approximately 1,800 Australians waiting for an organ transplant right now. In each case, the prospect of a successful transplant offers, at the very least, a significant improvement in quality of life. In many cases, it offers life itself.

Last year, as other speakers have noted, there were 198 deceased organ donors, which resulted in 657 transplants. Both the number of people waiting for transplants and the number of donors have remained relatively stable in recent years. This means that we are not making headway into that backlog, and it is important to recognise the very reasonable possibility that the number of people requiring transplant procedures will increase as the age of the population increases, and particularly as the under-quantified size of Australia’s kidney disease problem becomes clearer.

By any international measure, Australia has an outstanding record for tissue and organ transplantation and we remain at the forefront of clinical practice outcomes in this area. More than 30,000 Australians have been the beneficiaries of life-changing transplant procedures since they became a standard treatment option. This reform package springs first from recognition of the undeniable benefits of organ and tissue transplantation and second from the recognition that the demand for such procedures is significantly in excess of the supply of tissue and organs.

In my electorate, at the Fremantle hospital there is a new, innovative and nation-leading initiative called the paired live kidney donation program, run by Dr Paolo Ferrari, which uses data matching and a fair amount of cleverly applied common sense to match compatible donors and recipients across family pairings. Kidney donation is in a special category because a successful transplant does not depend on the death of a compatible donor. But it is also an especially acute kind of frustration when, within a family, there are willing kidney donors who cannot assist a family member suffering from kidney disease or failure because of incompatibility. The paired live kidney donation program addresses this by cross-matching willing family donors from separate families to the organ recipients with whom they are compatible. This effectively allows an incompatible family member to achieve their desire of providing a kidney to their relative by means of a cross-trade that is supervised and approved by the Western Australian Minister for Health under amendments that were made last year to the Western Australian Human Tissue and Transplant Act. This program is an example of creative thinking and planning and it is precisely the kind of better and more effective program that this legislation will promote as part of a comprehensive effort to lift the number of successful organ and tissue transplant procedures in Australia. I commend the minister for her efforts in rapidly bringing forward this health reform to support such initiatives.

In the context of this legislation, I want to make special mention of kidney disease. As I have already said, there are approximately 1,800 people awaiting organ transplants in Australia and three quarters of those are in need of a kidney transplant. There is every reason to believe that the growth in the number of patients waiting for a kidney will accelerate. Indeed, as Kidney Health Australia and other organisations have worked so hard to emphasise, kidney disease is one of the silent and under-recognised health problems that we face in Australia. On some indications it may in fact be fair to regard kidney disease as a looming health iceberg, with only the tip of it currently on show and the bulk of the problem as yet out of sight.

We know from remarks earlier this month by Dr Tim Mathew, the medical director of Kidney Health Australia, that on average six new patients are accepted onto the Australian dialysis program each day in this country and that a person can lose up to 90 per cent of their kidney function before experiencing any symptoms. We also know that approximately two million Australians could be affected by early-stage kidney disease. One point I would like to emphasise is that Indigenous Australians are disproportionately affected by kidney disease—and, to compound this problem, Indigenous rates of organ donation are disproportionately low. I am aware that Royal Perth Hospital intends to address this particular health policy challenge in a research seminar this month.

It is clear that a renewed effort in this area of policy is something that both the heart and mind demands. We know that hospital based dialysis costs on average $83,000 per annum to provide dialysis for one patient. Yet, in those cases where a kidney transplant is appropriate, and where our donor/transplant system allows it, we know that a kidney transplant will cost approximately $65,000 per patient for the first year and only $11,000 a year thereafter. Every time a patient is set free from dialysis by a successful kidney transplant the cost to the health system drops by 85 per cent after the first year. It is a saving of approximately $70,000 per annum per patient that can be applied elsewhere in our health and hospital system.

Though it is not the only factor in lifting the number of transplant procedures, the issue of donor registration and family consent is a very important one. While administrative improvements like the coordinated identification of potential donors and the introduction of a clinical identification trigger into all emergency departments have the potential to increase the number of successful transplant procedures, we also need to lift the sheer number of those willing to donate upon death. Donor registration, where it is present in the case of a potential donor, is generally decisive in facilitating a prospective transplant. In those cases where a person has registered their wish to be a donor, that intention is honoured by their family in the overwhelming number of cases. In Western Australia in 2005, for example, all 30 of the registered donors considered as a source of organs or tissue had their wishes confirmed by their families. It is for this reason that organ donor registration is something that we need as a society to encourage and to facilitate to the greatest extent possible.

Raising the number of registered donors is a primary objective, and I welcome the commitment of funds under this legislation to seriously lifting community awareness and education on the issue of organ and tissue donation. By registering as a donor we can leave behind us one of the most profound legacies—we can bestow on someone else the gift of health, in many cases the gift of life. To anyone who may be listening to or reading this contribution, I join with my fellow parliamentarians in urging you to register as an organ donor and to let your family know of your intention to give such an important gift.

As I have noted previously in this place, the Western Australian agency for organ and tissue donation, Donate West, began a first-of-its-kind campaign earlier this year to promote donor registration. The ‘Don’t Waste Your Wish’ campaign, which featured in both print and television advertising, ran with the tagline ‘There are some wishes you can’t keep to yourself’. This addresses the fact that, while a very large proportion of Australians indicate in polling that they are happy to donate their organs, not enough are actually registering their intention and not enough are discussing their wishes with their families. I hope that a similar national campaign will help us become a country with a rate of organ and tissue transplant procedures that matches our already excellent record of conducting the procedures themselves, and that this will see a significant reduction in the transplant waiting list and a significant reduction in those who die waiting.

The imperative to lift the rate of donor registration in Australia, to create a national transplant network, to improve the in-hospital practice and staff resources and ultimately to increase the number of successful transplant procedures requires a multifaceted approach. It requires an appropriate coordinating structure and it requires new funding to make good on the recommendations to government contained in the report by the National Clinical Taskforce on Organ and Tissue Donation. That is what this bill delivers.

Luke Hartsuyker (Cowper, National Party, Deputy Manager of Opposition Business in the House) Share this | Link to this | Hansard source

I very much welcome the introduction of the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. There are currently more than 1,700 Australians waiting for an organ donation and, for many of them, the prospect of receiving an organ means not just improved quality of life but also the prospect of life itself. The possibility of a transplant offers hope, but, all too often, time runs out. We need to make sure that hope is realised as often as possible. Many of us will know someone who could benefit from organ donation. We know how they have lived their lives; we know what they have given to their families and their communities. My former electorate council chairman currently sits at home on oxygen and waits and waits and waits for a transplant. With that transplant she would be able to lead a normal life. She would be able to resume her very wide-ranging activities in the community. But for the moment it is a waiting game, and the wait seems to go on and on. I am hopeful that this bill may mean that the wait for others may be far shorter than for my former electorate council chairman.

We have improving surgical techniques which are allowing us to save lives, and it seems cruel that many people are losing their lives purely through the lack of a donor. There will always be an element of chance in organ donation, in relying on the right donor to become available at the right time, and clearly we need to make every effort to ensure that donors and recipients are matched in an efficient manner. We must also recognise that, while the recipient will be beginning a new life, the donor’s family will be coping with the loss of a loved one. It is only right that this bill should be about both recipients and donors’ families.

As I said, there are currently around 1,700 people waiting for an organ donation. Yet in 2007 there were just 198 donors and 657 transplants conducted. These statistics are all the more heartbreaking when one considers that Australia is a world leader in clinical outcomes for transplant patients. If you are fortunate enough to get a donated organ or tissue, Australia’s medical system offers you a better chance of long-term survival than almost any other nation in the world. It would appear from the figures provided by the Australia and New Zealand Organ Donation Registry that all donors had enrolled in the registry and had recorded their intention on their drivers licence. So, while it would seem that the system is working to the extent that it is identifying all registered donors, more donors are needed.

Australia has far fewer donors per million people than the rest of the developed world. Registering as a potential donor and encouraging people to register is obviously the best first step in trying to ensure that potential recipients are given the opportunity for a transplant. But the decision to be a potential donor is not one that should be taken alone. It is the grieving families who will be faced with the realities of that decision, not the donor. It should not, therefore, be a decision for the donor alone. It should be a decision taken with the full knowledge of the potential donor’s next of kin and with full consideration for their feelings. For some grieving families, the thought that their loved one could offer someone else the chance of life will be some consolation. For others, the thought of further damage being inflicted to the body through organ removal will be too much to bear. The more we can do to educate people about the need for organ donation and the responsibility to one’s family associated with becoming a registered donor, the better.

On the subject of donor families, one of the aspects I particularly welcome in the bill is the provision of specialists in hospitals to work with potential donors and their families. Doctors, surgeons and nurses have demanding jobs at the best of times. In most cases, authority for organ donation is sought by the intensive care clinician or the registrar. Surely it is asking too much of medical staff who have been struggling to save someone’s life to then take on the task of approaching the family for permission to remove organs. Other patients will be needing their attention. The pressure of dealing with the sick and dying is already immense without adding to it the pressure and emotion of talking to shocked and grieving family members and helping them through such a decision. It is far better to have someone who is not involved directly in the medical care of the potential donor and who has the time and training to give the family members the attention, support and information they deserve.

While there are steps we can take to try to increase the numbers of potential donors, there are also steps that we can take to try to reduce the need for transplant organs. I think that there is an obligation on all of us to do all we can to maintain healthy lifestyles and, in doing so, reduce the incidence of disease. For instance, in Australia there are more overweight or obese people than there are not, so the challenge of lifestyle factors in reducing the demand for transplant organs is one that cannot be ignored.

We also need to rethink the measures we are taking to ram home the dangers of obesity and lifestyle diseases, because the message is clearly not getting through. It is all very well to say that individuals must take responsibility for their own health, but many do not take responsibility and then the state has to foot the bill. The people who are afflicted with lifestyle related diseases are actually competing with other recipients for transplant organs. Whilst it is outside the mandate of the transplantation authority, we do need to increase our efforts to drive home that healthy lifestyle message. Success here would go some way to addressing the imbalance between the number of donors and recipients by reducing the number waiting for a transplant.

I note the number of people registering as donors is rising, but we need to make sure that the goodwill and altruism of those potential donors does not go to waste. The Howard government was working towards increasing donation rates through a number of important initiatives. Australians Donate was given the role as the peak body for organ donation in Australia from 2002. As a part of the Rudd government’s new plans for organ donation, Australians Donate was closed in March this year. The organisation was very active in using celebrities and media personalities to promote and encourage organ donation and was the driving force behind the National Organ Donor Week and the Organ Donor Registry.

As part of the efforts to lift organ donor rates the National Organ Donation Collaborative was launched in 2006 by the then Minister for Health and Ageing, Tony Abbott. The collaborative was based in part on the successful US model and it led to increases in the number of organ donations in participating hospitals. Minister Abbott also worked hard to bring the states and territories together on this issue through the Australian Health Ministers Conference. As part of this national approach to organ donation the states and territories agreed in 2005 to allow the Commonwealth to operate the Australian Organ Donor Registry as a single national registry for organ donors.

This bill will establish the Australian Organ and Tissue Donation and Transplant Authority. It will also introduce a national system for organ and tissue donation. The authority is to be the driving force behind the development of an organ donation system that is world’s best practice. I commend the government for its desire to follow best practice in this area, but, as I have learned over the past 10 months, we need to rely on what this government does, not what it says.

For the sake of those people around the country waiting for transplants I sincerely hope that the authority does achieve success in raising donation and survival rates. I note that the bill also establishes an advisory council which will provide advice to the transplant authority’s CEO about donation and transplantation matters. This advisory council is important because it is essential to get health professionals involved in this process to ensure that the programs implemented by the authority are practical.

Another important part of this strategy is the $13.4 million allocated over four years to a national education and awareness campaign. It is very important to keep the issue in the public eye and encourage people to talk about organ donation with their families. Despite the fact that 90 per cent of Australians claim to support organ donation, many people have still not sat down with their families and discussed what should happen to their organs in the event of their death. The allocation of funding to assist the families of the deceased donors is a welcome part of this bill. The loss of a loved one is always difficult and any extra support can only be welcomed by grieving families. For some families their grief will be tempered slightly by the knowledge that the death of their loved one will not be entirely in vain.

I also welcome plans for professional education programs to ensure that doctors and hospital staff are doing everything possible to maximise the number and success of transplants. The bill also provides funding to help hospitals with the costs of additional staffing, equipment and infrastructure needed for the accommodation of transplant patients. Because of the government’s proposed changes to the Medicare levy surcharge, the Treasury forecast that more people will be relying on the public health system over the next few years. This will put further strain on our state health systems which are already chronically underfunded.

It would be a shame if some hospitals were not involved in organ donation efforts to the fullest extent because of budget constraints. This federal funding for staff and infrastructure will mean that additional transplants are not an excessive burden on the budgets of participating hospitals. The coordinated approach represented by the measures in the bill, particularly the introduction of specialist staff, will, I am sure, go a long way to reducing transplant waiting lists and help provide a new start for many seriously ill Australians. There will always be more that can be done to boost organ donation rates in Australia, but this bill is a welcome development, and I join my opposition colleagues in supporting its passage through the House.

Jason Clare (Blaxland, Australian Labor Party) Share this | Link to this | Hansard source

On some occasions in this place we debate issues surrounding life and death—complex issues, moral issues, where there are strong opinions and no right or wrong answers. The questions raised are sometimes very hard to answer. Sometimes, however, legislation comes before this place to which we can have no objection, and I think that the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008 is one of those bills. That is because this bill is about saving lives and improving the quality of those lives.

Our society has already answered the philosophical question of whether or not we support organ donation. As the previous speaker said, over 90 per cent of Australians support organ donation. I am one of them. The problem is bridging the gap between those who support it and the families who ultimately choose to donate their organs. The statistics here are worrying. There are 1,800 people currently on the organ transplant waiting list. The chances are that two-thirds of them will be still waiting next year. For many of them, the wait will be too long. Think about how many childhoods have been left waiting, stunted by illness, how many university degrees, TAFE courses and apprenticeships have been left waiting, how many careers have been left waiting, how many opportunities for travel and adventure have been left waiting and how many partners, husbands, wives, children and parents have been left waiting. Life on a waiting list means a life constantly left waiting and, for many, a life cut short.

The lives of 657 people last year were saved by the selfless decisions of 198 families—families who made the decision to save the lives of others despite their own loss. A gulf still exists, however, between those who have registered to be organ donors and the rate of actual organ donation. There has been an increase of one million people who have registered to become organ donors, and that is a good thing, but there has not been an increase in the number of transplants being performed. Understandably, it is a very difficult decision for many families to make. It is a decision which has to be made when families are at their most vulnerable, when they are surrounded by sorrow and grief. It is an incredibly difficult time at which to be feeling generous.

To understand this, I would like to share the story of one Sydney family whose generosity in grief has touched many around the world. On 28 July this year, 20-year-old Doujon Zammit from Cecil Hills in Western Sydney, near my electorate, was holidaying in Mykonos, Greece. It was a trip that had been planned for many months. That night he was savagely beaten by some local bouncers, and 12 days later his life support was turned off. At a time when many would have directed their outrage and anger towards the local community, the Zammit family chose generosity. They made the extraordinary decision to donate his organs. At the time, Mr Zammit, Doujon’s father, said:

It was incredibly hard and it was incredibly emotional but I couldn’t go against my son’s wishes. This is what he wanted. It was on his licence and we had all talked about it. It’s a hard decision as a parent to make but why should my son have any less rights after his death than he had in life—this is what he chose and we had to respect that.

Doujon’s selfless decision to donate his organs and the family’s selfless decision to honour that wish saved four lives—four lives previously on a waiting list, four people and their families who are no longer left waiting. It is a challenging decision many families are still unable to make.

That is why this bill is important. It provides $1.9 million towards counselling to support donor families—support for families in their darkest hour, making difficult choices. Unlike other debates that we have had here, this is not just about encouraging people to donate their organs; it does something about it. It establishes systems for every family to be given the option of organ donation and it ensures they receive support from specially trained staff. We have committed $46 million to introduce a nationally coordinated and consistent approach under the leadership of the Australian Organ and Tissue Donation and Transplantation Authority; $67 million to employ trained medical specialists and staff dedicated to organ donation; $17 million to hospitals to help with additional costs associated with organ donation; and $13.4 million towards raising community awareness.

Australia is a world leader in clinical outcomes for transplant patients. Already 30,000 people have benefited from organ or tissue transplants. But, sadly, we lag behind other countries in organ donation rates. Our donation rate is 9.4 donors per million people, one of the lowest in the developed world. Spain has a rate of 33.8 donors per million, three times higher than Australia’s. In the United States the rate is 26.9 donors per million, 2½ times that of Australia. I know this bill will help lift our donation rates, stop the waiting and ultimately save lives.

Doujon’s father put it best when he said this: ‘Doujon went to heaven without his organs.’ That is what I believe and that is what we all have to believe: that you do not need your organs to go to heaven. We need more families like the Zammits and we need to do everything in our power to help them make these difficult decisions in difficult times. If Mr Zammit can express that sentiment so eloquently while he is in the depths of sorrow, I think it is up to us here to do everything that we can to ensure that we are able to give people on the organ transplant waiting list every chance at life. I commend the bill to the chamber.

Stuart Robert (Fadden, Liberal Party) Share this | Link to this | Hansard source

I thank the member for Blaxland for his insightful comments with respect to the bill. In 2009 the 17th World Transplant Games will be held on the Gold Coast in Australia, on 22 to 30 August next year, in Broadbeach, in the seat of the member for Moncrieff. For over 20 years the World Transplant Games Federation has been staging international sporting events for transplant athletes in order to demonstrate the physical success of transplant surgery and to raise awareness of the need to increase organ donation. These games are expected to attract up to 3,000 participants from over 70 countries and are the largest organ and tissue donor awareness event in the world.

Sports to be included in the 2009 games include athletics, swimming, tennis, tenpin bowling, cycling, badminton, lawn bowls, rowing, table tennis, volleyball, golf and squash. Apparently archery is a demonstration sport. All competitors taking part in the games have received a life-saving organ transplant, including heart, lung, liver, bone marrow and kidney transplants. Without these transplants competitors would have died or, in the case of kidney recipients, may have only survived as a result of intensive renal support in the form of dialysis. Also competing will be people on dialysis and others waiting for a transplant. The world games next year on the Gold Coast will demonstrate to local and international audiences the tangible benefits of donation—the living proof, as it were, that donation works, that it is valuable, that it should be supported and highly esteemed within our community. I think there is no better way of showing the benefit of transplant than looking at the achievements of the actual lives saved.

The transplant games are more than a celebration of lives saved through transplant; they are one of the most important public health campaigns Australians can engage in. Every extra donor can save or greatly improve the lives of up to 10 people. The transplant games, staged by charity Transplant Australia, demonstrate that people who were once terribly ill can be given a second chance to go on and achieve a high quality of life. As the member for a Gold Coast seat, the seat to the north of Moncrieff, where the games will be held, I applaud the games and those who participate. They remind us all of the indomitable human spirit that overcomes adversity. They allow our spirits to soar as we join all participants to celebrate their victory not only in the games but in life. They remind us all of the value of organ donation. Thus I speak in support of the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008, which establishes the authority to lead a new approach to increasing the number of lives saved through organ donation.

There are over 1,800 people in Australia on organ transplant waiting lists at any given time. The tragedy is that some of them will die waiting. Since the Australian Organ Donor Register was established in 2000, over one million Australians have registered. Currently, there are 1,160,816 people on the register. I say to those great Australians: thank you for considering helping others should a tragedy in your own life occur. I encourage all Australians to register, noting that it is voluntary and that you can nominate which organs you wish to donate. I encourage all Australians to sit down and talk to their wives, husbands, partners, children and grandchildren—those close to them—about the need for organ donation in their lives.

I commend the previous Governor-General, Major General Michael Jeffrey, and his wife, Marlena, and their four children—I served in the military with some of the children and I was also with some of them at Duntroon—as they expressed to the nation that, as a family, they had sat down and talked about organ donation and had decided that they would go on the organ donor list. Major General Jeffrey and his wife and family have set a great example for all Australians. Major General Jeffrey has set a great example not only during his five years as Governor-General but during his entire military career.

For people with serious or life-threatening illnesses, organ or tissue transplantation can mean a second chance at life. More than 30,000 Australians have received transplants in the last 60 years. Improved survival rates now mean that most organ or tissue recipients enjoy many years of high-quality life after their transplant. Organs that continue to be in demand include hearts, lungs, livers, kidneys and pancreases. Tissue in demand includes heart valves, bone tissue, skin tissue, eye tissue and pancreas tissue.

According to the International Registry of Organ Donation and Transplantation, Australia is, unfortunately, ranked 17th in the world. From 2002-07 there have been fluctuations in the donor rates within each state of Australia. More often than not there is a correlating event in the state that highlights the need for organs, causing a spike in organ donation rates. Such events might include the donation of organs by the family of a well-known person, publicity surrounding the Australian Transplant Games or, indeed, the magnanimous gesture by the previous Governor-General, his wife and family.

Advances in medical technology have meant an increase in the functioning longevity of transplanted organs. It is these advances that allow many recipients to return to their normal lives, empowered by the knowledge that receiving an organ will provide not only a great quality of life but a more sustainable, long-term healthy future. Currently, in Australia, there are some transplant recipients who have had their transplanted organs longer than their native organs. Receiving an organ transplant is not a short-term fix; it is a long-term solution.

Australia has one of the most successful transplantationrates in the world, with the average patient survival rate one year after receiving a transplant at 90 percent. Even in Spain, which has the highest organ donation rate in the world, there are only 35.1 actual donors per million people, and there are hundreds of patients on their waiting list. Over the last 10 years, organ donation rates in Australia have fluctuated at around 200 donors per year. Australia is internationally recognised for its strong record of successful organ transplantations; however, it also has one of the world’s lowest rates of organ donations, with the consequence that a substantial number of people suffer and perish while waiting for suitable organs to become available. At any given time, almost 1,800 Australians are waiting for an organ transplant. They are waiting right now. As at January this year, 176 Queenslanders were waiting. But donation rates are failing to meet this demand.

To give you an idea of what the waiting list looks like, I note that the national organ-matching system, which is an Australian government funded project, lists the following waiting list numbers as of 1 July this year: 1,357 Australians waiting for a kidney, 67 for a heart, 194 for a liver, 140 for a lung and 35 for a pancreas. That makes 1,793 Australians who are waiting today. On average, patients on the transplant list wait just over four years for a kidney, just over one year for a heart or lung, eight months for a liver and two years for a pancreas.

Only 21 per cent of the Queenslanders who are legally able to register their consent to donate do so. I call on my fellow Queenslanders and say: put yourselves on the donation register. Speak to partners, family, friends, wives, husbands, children and those who matter in your life about what you want done in the unlikely event of your death.

I support the bill and I know that many Australians support the bill. I urge all Australians to register for organ donation so that, in the very sad event of their passing, they may have the opportunity to pass on life. I support the slogan ‘Don’t take your organs to Heaven; Heaven knows we need them here’.

Julia Irwin (Fowler, Australian Labor Party) Share this | Link to this | Hansard source

I am pleased to speak on the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. This bill will establish an authority which will set about creating for the first time a centralised, Australia-wide approach to facilitate improved access and better outcomes for the thousands of Australians who are in need of an organ or tissue transplant. Regrettably, the demand for organs and tissue far outstrips the supply. Less than one per cent of all people who die in hospital each year are suitable for organ donation.

While many of us support organ donation—and, I would say, the vast majority of Australians do—the fact is that in 2007 only one-third of the demand for transplantation was met. The statistics are the more sobering because there were only 198 organ donors, resulting in 657 transplants. We must ask ourselves why the number of donors is so low when compared to the size of the sentiment expressed by so many in support of organ donation. I doubt that there would be many who would decline to support the idea of organ and tissue donation. Some will of course make a decision to refuse donation based upon religious grounds, and for some it is an emotional argument as they cling to false hope in a denial that they will soon lose the person they love.

The real difficulty lies in the fact that the decision to donate must be made at the most difficult of times and in the most difficult of circumstances: a time when a loved one is dying. The last thing that any person wants to hear from the doctor is that a loved one is going to die. Let us face it: this point, the moment of impending death, is when a decision needs to be made as to the possibility of organ donation, often after the person has made the decision to turn off the machine which is keeping that loved one alive. Of course, the next of kin are dealing with all sorts of associated emotions at this time: shock, anger, loss and fear, amongst others. On top of all that, they are being asked to decide about a loved one’s organs. They do not want to accept the death. They are not ready to accept the loss. They do not want to face the prospect of life without that partner or child or parent or sibling. They simply do not want that person to die. In the circumstances where that death is unexpected, the emotions are more intense and the death more difficult to accept.

The rationale becomes that a donation of organs would really be an acceptance of the death, an acceptance of the loss—finality. Even when the doctors have said there is no hope, we think that maybe, just maybe, there will be a miracle—maybe the doctors are wrong; maybe there has been a mistake. It is a decision which will bring about a finality that the next of kin are not yet ready to accept. It is at this difficult time that we ask someone to make a clear and rational decision, at a time when really the next of kin are emotional and perhaps at their most irrational. It is no wonder that many refuse even when the potential donor had already expressed a desire to donate organs in the event of their death—even when, under normal circumstances, the potential donor’s family would express support for organ donation.

It is the same medical staff who have been treating the patient who invariably must approach the family. It is difficult for medical staff to treat a patient, then advise the next of kin that there is no hope of recovery, that death is imminent, and almost in the one breath ask for permission to harvest organs for transplant.

Clearly the approach that has been taken is flawed and support for donor families has been especially lacking. This bill will provide a new approach, which is necessary. Funds will be made available for dedicated organ donation specialist doctors and other staff in hospitals. New funding will be made available to enhance staffing levels, beds and the infrastructure necessary for organ donation. Funding will also be made available for support services for families of deceased donors.

Importantly, funding will be made available to continue national public education and awareness, which is extremely important if we are to improve on the number of donations being made. It is only through education that we can create and, if you like, ingrain into our psyche the acceptance of organ donation as being simply another part of this process we call death. We must arrive at a point where we are comfortable with the notion of organ donation even when we are not comfortable with the thought of death. If one is to die, then surely to give the gift of life would be a fitting legacy of the donor.

We are all no doubt aware of the recent death of a young Australian, Doujon Zammit, in Greece—a young man from my electorate of Fowler. It takes great courage to face the loss of a loved one, especially in the circumstances in which Doujon was suddenly taken from his family. He was tragically killed so far from his beloved homeland. The decision by his family to donate his organs to people on waiting lists in Greece was both courageous and inspiring. They are an example to us all, and we must all aspire to such clarity of thought and generosity when we face circumstances requiring a similar decision.

The Zammit family found hope, when there was no hope for Doujon, in the belief that this would be a lasting legacy for Doujon, a living testimonial which would mean that his death, though tragic, would not have been in vain. From all the media reports we have seen, the donation of Doujon’s organs has been a gift of life to several people. Media reports also indicate that this very public act has resulted in an increase in organ donation in Greece—a welcome fact, given that the average waiting time for a transplant in that country is six years, with some 900 people on waiting lists.

There are almost 2,000 people in Australia on organ transplant waiting lists at any given time. The sobering fact is that some of them will die waiting and many will endure poor quality of life as a result of poor health while waiting. This will have an enormous impact on their families: an inability to work or work effectively, a reduction in family income and no foreseeable improvement until a donor becomes available. Add to this the enormous costs associated with treatment and the burden is far too great for many to bear. The cost also to government for providing the ongoing care is great and can only be reduced as a result of a successful transplant that will return quality of life to the patient and enable them to once more become active and productive members of their family and the community in which they live.

Since July 2005 the Australian Organ Donor Register has been a register of consent, allowing donors to register their legal decision to become organ and tissue donors. It is the only national register for organ and tissue donation. A donor’s verifiable consent can be accessed at all times by authorised personnel, which allows for greater informed communication with the donor’s family. We must encourage and educate people to actively discuss and consider such a momentous decision to become an organ donor with family and loved ones well before illness or tragedy strikes. We must ensure that support services are in place to assist the donor in reaching this decision, to assist and support the donor family and to assist the medical personnel involved in the treatment of the donor as well as those medical personnel advising on and seeking organ donation. We must ensure that the entire process is properly managed so that the donor family can take comfort in the generosity of giving precious life. This bill will do just that. I applaud the Rudd Labor government on this measure and commend the bill to the House.

Nola Marino (Forrest, Liberal Party) Share this | Link to this | Hansard source

I rise in support of the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. Donating an organ is the greatest and most selfless gift anyone can give to another human being. Health permitting, anyone can be an organ and tissue donor and there is no age limit for donating organs or tissues. For people with life-threatening or serious illnesses, organ or tissue transplantation may be a second chance at life or an improved quality of life.

One organ or tissue donor may save or enhance the lives of up to 50 people. Organs that can be donated for transplantation include heart, lungs, liver, kidneys and pancreas and tissue donations consist of corneas, bones and heart valves. Corneal transplants are used to restore sight to people who are partially or completely blind because of a problem with their own cornea—the clear pillow at the front of the eye. Both the cornea and the white of the eye can also be used in tissue transplants. A single eye tissue donor can help between two and four people.

A bone tissue transplant is used to help repair fractures and strengthen hip and knee joint replacements. It may also be used to replace bone lost as a result of injury or tumour. Transplanted bone allows the surgeons to rebuild defects to aid functional rehabilitation. Bone tissue transplants can also be used to repair curvatures of the spine—scoliosis—in children and teenagers.

Heart valves are mainly used to repair congenital defects in young children and also when someone’s valves stop working effectively due to disease such as rheumatic fever, degeneration, and infection. Donated human heart valves have many advantages over artificial or alternative sources. Human heart valves are more resistant to infection and do not require the use of anticlotting medications.

The current Australian Organ Donor Register is a national register that was launched in November 2001. Administered by Medicare, the Australian Organ Donor Register can be accessed 24 hours a day, seven days a week by authorised medical personnel to verify a person’s intent to be a donor. Donor coordinators play an important role in caring for donors and their families during and after organ and tissue donation.

Entry onto the registry is voluntary and allows people to indicate which organs and tissues they are comfortable to donate or to register a decision not to donate any organs or tissue after death. The method of being registered as an organ donor on a drivers licence changed in 2001 to an Australia-wide donor register—the Australian Organ Donor Register. As a result, drivers licences now no longer include an organ donation question. Instead, the licensing authorities offer the AODR forms when a licence is issued or renewed.

In an effort to make people more aware of organ donation, an organ register section was added to the Medicare rebate claim form in February 2006 and the organ donation campaign extended to Centrelink offices. I have been told that about five million people had registered at that time and the expectation is that it could be further increased.

Five or six years ago Western Australia had the worst organ donor rate in Australia. After an intensive campaign, Western Australia had 30 organ donors in 2005, the highest record of organ donation per capita of any state in Australia. It seems that in 2006, along with most other states in Australia, there was a significant drop in the number of organ donations made. In Western Australia there were only 21 organ donations made in 2006. Last year, 19 donors from Western Australia, out of a total of 198 people nationwide, generously donated their organs. One of these generous donors meant a successful outcome for a very ill teenager in my electorate of Forrest.

Young Aimee Blackiston of Dardanup underwent a 10-hour double lung transplant operation at Royal Perth Hospital in February 2007 and her story has been reported by the media. Lung transplants were performed for the first time in Western Australia just three years ago. Aimee was only just able to finish her year 12 at Bunbury Cathedral Grammar School. A competitive horse rider and keen basketball player, she was also Goldsmith house captain at her school. But her health deteriorated during the year and she was diagnosed with primary pulmonary hypertension. Doctors put Aimee on the waiting list for a heart and lung transplant as the only way to survive her rare disorder. Aimee and her family endured an excruciating two-week wait in intensive care without finding a suitable donor. She proved to be a very strong character, remaining positive, but it was very hard for her family to see her deteriorate so rapidly.

Organ donation and transplant operations are certainly a combined team effort. In Aimee’s case a Defence Force jet was approved for stand-by for the life-saving mercy mission if the organs became available in the eastern states, with all hospitals on alert for this very deserving patient. Commercial flights would not have been able to get donor organs from eastern states to Perth fast enough for the organs to be in a useable condition, as organs survive for only five hours after being removed from donors.

Dr Robert Larbalastier, the head of Royal Perth Hospital’s transplant unit, said Aimee’s prognosis would be excellent once she had a successful transplant operation, but this was her only chance of a cure. Recognition must be made of Dr Larbalastier’s exceptional skills. He led the team of surgeons and a team of 20 highly skilled staff during Aimee’s 10-hour lifesaving double lung transplant operation. I also congratulate the intensive care unit staff and many others who were part of the team who took care of Aimee.

Aimee remained in hospital for four months and even celebrated her 18th birthday in ward 6G before being discharged and moved to Shenton Park to continue her rehabilitation. Aimee’s future plans are to study a double major in law and human behavioural science, and, once recovered, she wants to advocate and inform young people about the importance of organ donation.

Most of all, I would like to thank and acknowledge the anonymous donor who gave Aimee her chance of life. With up to 1,800 people waiting for transplant procedures, we must endeavour to increase the level of awareness for organ and tissue donation so that the lives of people on the transplant waiting list can be transformed. And, yes, it is often the result of a tragedy for donors’ families, but it is a profoundly generous act on the part of an individual or their family. That is also why it is so important for anyone wanting to be a donor to make sure they tell their families that this is what they want to do. They should make it very clear.  The decision is then the decision of the donor and not one a grieving family has to make at a traumatic or sad time.

This bill will establish the Australian Organ and Tissue Donation and Transplantation Authority to champion a new national approach to provide world-leading access to transplants and transplant outcomes for Australia. It will provide the legislative framework to implement the measures included in the government’s $151.1 million reform package, announced in July 2008, to boost organ and tissue donation. The authority will operate in parallel with all state and territory law as this bill does not override or limit other laws. It also does not affect the operation of a state or territory law or a rule of common law requiring the giving of consent for the removal of an organ or tissue from the body of an individual.

I encourage everyone to consider signing up as an organ donor and letting your family know that this is your decision. For any one of us to know that we are able to offer a chance of life or a chance of a better life to another is, as I said, the ultimate gift. I say to each person: just imagine it is your child, your grandchild or someone you love who will die without a transplant. This should be the reason you sign up to be an organ donor, and also so that not one more of those people on the donor transplant list dies as a result of not receiving a transplant. I, along with my colleagues, strongly support this bill and encourage every Australian to register as a donor.

Sid Sidebottom (Braddon, Australian Labor Party) Share this | Link to this | Hansard source

In speaking today on the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008, I would like to spend some time speaking about two very special blokes—two brothers, two husbands, two fathers—who live on the north-west coast of Tassie in a town called Smithton. These men are Roger Popowski and his big brother Kelvin. Roger Popowski has always described himself as an active, hardworking man. He works at the local school as a teacher’s aide and maintenance worker. When he is not there, he and his wife, Ara, have six young children to run around after at home, so you would have to say a lack of energy is definitely not in his nature.

Up until two years ago, Roger often felt a bit tired but just put it down to needing a holiday, as most of us would and do. At age 36, Roger’s life changed forever when one night, completely out of the blue, he could not catch his breath as he lay down in his bed. He thought it was just a chest infection, so he took himself to the doctor for a dose of antibiotics. But it was not a chest infection: Roger’s kidneys were failing, and he required daily peritoneal dialysis to survive. No-one in Roger’s family had ever suffered renal failure or had any trouble with their kidneys before then. In fact Roger did not even know what renal failure was. Roger spent the next eight months on dialysis. He could not work; in fact he could not be active for more than two hours a day. His quality of life was all but gone.

When his condition continued to deteriorate, doctors told Roger his best chance of restoring his quality of life was a kidney transplant. Yet, with the flagging rate of organ donation in Tasmania, he faced a wait of up to five years to receive this transplant—five more years of dialysis, five more years of not being able to work to provide financially for his family and, worse still, five more years of not being able to kick the footy or run around playing with his kids. Roger was told his best chance was to ask one of his siblings, which was lucky for him because he was one of eight kids in the family.

Three months later, his older brother Kelvin tested as a positive match. Donating a kidney is a pretty massive gesture of sibling love and a huge decision for anyone to make, but for Kelvin there was no decision to be made when it came to the life of his little brother. Roger says he initially found it difficult to accept such a gesture from his big brother. Like others that receive organ donations from their family, he worried that Kelvin, also a husband and father, might fall ill as a result of the transplant or live to regret his decision. Two years later, both Roger and Kelvin are both at peace with the part they played in the transplant. Roger is back at work and back kicking the footy and playing with the kids. Kelvin is also still fit as a fiddle. Roger says he literally owes his life to his big brother.

Roger is one of the lucky ones. For those people who do not have family members who are able or willing to donate organs, the plight of transplant waiting lists is dire. Indeed, every single day five Australians commence expensive dialysis or are told they need a kidney transplant to survive. This statistic is far direr in my home state of Tasmania. Tasmania has the highest prevalence of chronic kidney disease in Australia. If we talk about my home electorate of Braddon on the north-west coast of Tassie, about 95 out of every 10,000 residents tested have at least moderate chronic kidney disease.

In 2007 there were 341 kidneys donated across Australia, compared to about 2,000 people who either commenced dialysis or were put on a transplant waiting list. Kidneys are not the only organs that are desperately needed for transplant, though. There is also the heart, liver and pancreas. Then there are the tissues, which include heart valves, bone tissue, skin tissue, eye tissue and pancreas tissue. When you consider the current obesity epidemic facing our country and the increasing instance of diabetes, emphysema and heart disease and put them together with Australia’s rapidly ageing population, the need to do something right now to increase organ donation is absolutely crucial, as speaker after speaker in this place has made clear.

To put this into context, it is worth dissecting the statistics on some of Australia’s most prevalent illnesses which may require organ transplantation. Some 2.4 million Australian adults are currently obese. It is estimated that 1.23 million Australians will have diabetes by 2010. More than half a million Australians, it is estimated, suffer from emphysema. About one in three Australians will be affected by coronary heart disease throughout their life. All of these statistics are higher in Tasmania, where the population is older, and those statistics for Tasmania are even higher in my electorate.

Let us take a look at the need for organ donation versus the actual statistics on donation. Over the past 60 or more years, more than 30,000 Australians have received transplants. When you say it like that it sounds like a lot, but it really is not at all. That is only about 500 per year for six decades. When you consider that there are more than 1,800 people on organ transplant waiting lists across the country at any given time, the transplant rate is clearly inadequate. The reality is that hundreds of Australians die every year while waiting for a transplant. There were just 198 deceased organ donors in all of Australia last year, which resulted in 657 transplants, just one-third of the amount needed.

Of these 198 organ donors in 2007, just one of them came from Tasmania, putting my own state at the bottom of the donation list for Australia—that is, equal with the ACT. In 2006 there were just eight organ donors from Tassie and in 2005 there were just two. I hope any Tasmanians listening to me speak today or reading this speech in the future will note this statistic and sign up to donate. We as a nation have been talking about the great need to lift donation rates for a long time now but, until now, there has been no real national leadership on this chronic problem.

There have been some initiatives set up in recent years to attempt to generate support for organ donation in Australia. The Australian Organ Donor Register was established in 2005 as Australia’s only national organ and tissue donor register. It is the only national register in Australia where people can legally register their consent or objection to becoming an organ or tissue donor after death. You can register on the Australian Organ Donor Register 24 hours a day, seven days a week, from anywhere in Australia by calling the toll-free number: 1800777203. Then, in the event of your death, information about your donation decision will be accessed from the donor register and provided to your family. Even if you have registered your intention to donate on your drivers licence renewal—like me—you still need to register officially.

I am really excited about the introduction of the Rudd government’s Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. The new package would be set up by 1 January 2009. This package will establish Australia as a world leader in best-practice organ donation for transplantation. The package is intended to deliver $151.1 million, including new funding of $136.4 million over four years, to boost the number of life-saving organ transplants for Australians. The key features would include: $67 million to fund dedicated organ donation specialist doctors and other staff in public and private hospitals; $46 million to establish a new, independent national authority to coordinate national organ donation initiatives; $17 million in new funding for hospitals to meet additional staffing, bed and infrastructure costs associated with organ donation; $13.4 million to continue national public awareness and education; and $1.9 million for counselling for potential donor families. The latter is a very important initiative to fund. The package will not change the framework for giving legal consent. This will still go through the national Organ Donor Register that I spoke about previously.

This package will also address what is probably the most fundamental flaw in the current system: as I mentioned, it will employ and train dedicated staff to help families through the process of their loved one donating an organ. This issue is crucial, because in the past there has been no-one there to talk to or support grieving families as they try to come to terms, firstly, with the death of a loved one and, secondly, with the notion of organ donation. I must make mention at this point of the absolute importance for all of us to talk to our families and friends about our personal views on organ donation. If we die, it is our families or our close friends who will be left to relay our views on organ donation to doctors and hospital staff. I commend the bill to the House and urge all Australians to pick up the phone or log onto the internet and register to donate.

Mark Coulton (Parkes, National Party) Share this | Link to this | Hansard source

I rise tonight to speak on the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. I welcome the opportunity to speak in the debate on this bill. I am really pleased to be speaking on a bill that has support from both sides of the House. It is a bill that is worth while and that is going to make a big difference to a lot of people. It is a pleasant relief from some of the other silliness that we carry on with in here at times.

I know from local experience how important organ donation is. I would like to draw the attention of the chamber to some of the facts and figures relating to organ donation. One organ donor can save and improve the quality of life of up to 10 people. Today solid organs as well as tissues, skin and bone can be utilised to help return people to good health. Australia’s rate of organ donation has remained static for the last 25 years. Currently, each year Australia has approximately 200 organ donors, and this number could be doubled. Australia has one of the lowest organ donation rates anywhere in the developed world.

Among the many reasons for our low rate of donation are several that we cannot complain about. We fortunately do not have the same amount of gun crime as do other countries, such as the United States, which results in fewer trauma patients presenting to hospital. There are very successful road death prevention campaigns that help reduce road trauma deaths. The quality of our general health has greatly reduced stroke and other causes of permanent brain damage.

More than 1,800 Australians are now waiting for urgent transplants and it is estimated that 100 people die each year while waiting for an organ transplant due to the shortage of organ and tissue donors. The greatest mortality occurs in patients waiting for hearts, lungs and livers where no real alternative or short-term treatment exists. Although less than one per cent of deaths occur in such a way that organ donation is possible, the organ donation rate could be dramatically improved if more people discussed their wishes with their partners, families and friends and registered their decision with the Australian Organ Donor Register. That is one of the key components of this bill that I strongly support. We are actually going to get a framework in place that will facilitate this to happen.

Although in some states in Australia you can still tick a box on your licence, this process does not ensure you will be an organ and/or tissue donor. Family or next of kin will be consulted in the organ and tissue donation process. It is rare for a donation not to go ahead because the family or next of kin do not agree with their loved one’s decision. Most families or next of kin will carry out a loved one’s wishes if they know what they are. On the other hand, if they do not know your decision their decision is made much harder and it is possible donation will not go ahead. Talking to your partner, family and friends about donation is crucial.

Anyone from the age of 12 months up to 90 years can potentially become an organ and tissue donor. Many people rule themselves out of organ and tissue donation because they think they are too old but, contrary to common belief, even when they are 90 potentially some of their organs could be used to improve someone else’s life. Very few medical conditions or bad habits automatically disqualify you from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not viable for transplantation but other organs and tissues may be fine. Do not disqualify yourself prematurely. Only medical professionals at the time of your death can determine whether your organs and tissues are suitable for transplantation. Organ donors save lives and you can choose all the specific organs and tissues you would like to donate.

With your indulgence, Mr Deputy Speaker, I would like to tell the House about an incident that is very close to my heart. It goes a long way towards explaining the benefits of organ donation. In February 2007, on the last day of the school holidays in my home town of Warialda, a small town in north-west New South Wales, a group of local students from years 8 and 9—aged 13 and 14—had gathered to fill in their last day before school went back. As country kids have been known to do for many years, they decided to go for a drive out in the state forest on the edge of town. They were in a small utility, being driven by a 13-year-old girl. Unfortunately, the worst possible thing happened. The ute got out of control and swerved off the road and tipped into a tree. Of the eight people in the vehicle, only one was not seriously injured. One girl, Emma Smith, was killed instantly and was dead at the scene. The other kids were transported to our small local bush hospital.

To add to the confusion of the day, the motor in the Westpac rescue helicopter, en route from Tamworth, cut out at 6,000 feet and crashed. The pilot of that helicopter managed to get it down, although landing it very hard and destroying the helicopter. But the doctor and the paramedic managed to crawl out and they hitched a ride with a local farmer and continued on to Warialda to help.

The hospital has a limited emergency room, so emergency rooms to cater for the six seriously injured children were set up. The local volunteers, the fire brigade and the state emergency services, as well as the local hospital staff and staff from surrounding hospitals, all rallied. During that afternoon they did a mighty job. They managed to stabilise the condition of the children and managed to get them transported for further treatment to Tamworth and to Sydney. As a result of that day, the entire hospital staff were commended and, as a matter of fact, the two local doctors, the husband-and-wife team of Dr Gordon and Dr Coote, were given the award of Australian Rural Doctors of the Year, largely because of the action they took on that day.

The families of two of those young people, Kallem Warrener and Mandy Butler, found them on life support in Sydney. After a short time, a matter of days, it was realised that they had no hope of survival. It must be the hardest thing for parents to do, but they had to turn off the life-support machines. Kallem Warrener’s family, a family I have known all my life and am quite close to, decided that it would be appropriate to donate Kallem’s organs. I am not sure how many lives Kallem’s death saved, but from my reading it could have been up to 10. I know from speaking to Kallem’s mother days after his death that she felt it was one way they could make some sense out of the tragedy that had befallen them.

The other child, Mandy Butler, as it happened, was a ward of the state. Mandy was not a bad kid; she just went through a bit of a rebellious patch when she hit her teenage years, and her mum felt that it might be better if she went and lived with someone else for a while. Despite her tender age, Mandy had quite often spoken about the fact that if anything ever happened to her she would like to donate her organs to save someone else. But unfortunately, at the time, the laws in New South Wales did not allow that for children in state care. Mandy’s organs could not be used and no transplants could take place. Despite the wishes of her birth mother, the law would not allow it at the time.

As an aside to that, due to the hard lobbying since then by Mandy’s birth mother, Diane Johanson, this year the New South Wales government amended the law. The Human Tissue Amendment (Children in Care of State) Bill passed through the house in New South Wales some time ago, so that sort of thing will not happen again.

By the way, this accident happened quite near to my house, on the little dirt road that goes up to my place, and every time I go home from this place I see the carefully tended memorial—flowers, photos and little messages from their friends and families, who go out there on a regular basis. While it is very touching to see it, I think possibly the long-term memorial and legacy from that terrible day is the fact that Kallem Warrener was able to save the lives of up to 10 other people.

On the flip side of that—and this is not in any way related to the other incident I spoke of—is the story of one of my neighbours. He was a young man, a giant of a man in his late 30s—a big, strong farmer with two small children—who suffered from kidney failure. After a short time on dialysis he was looking down the path of what was going to be quite an unproductive life. If you need constant care such as dialysis, particularly in rural areas, you have to go to a larger town, which can be 200 or 300 kilometres away. It looked as if his dreams of raising his children on the farm were going to come to an end. Fortunately, he was able to receive a kidney through the death of someone in Queensland, and now his life is pretty well back to normal and he is leading a healthy, active life. That is a positive picture of what can happen when organ donations go through.

In closing, I would like to stress the importance of organ donation and of raising awareness of it in the community. We have a responsibility to discuss this issue with our family and friends. We also need to keep in mind that in rural areas organ donation has specific problems. Unless the critically injured person who is going to die can be transferred to a large place—for example, Sydney—before they pass away, organ donation cannot happen.

There is another side to this. I am hopeful that the authority that is to be set up will take into account the wishes and feelings of the family. Picture yourself in the position of Kallem Warrener’s parents, who had to make this terrible decision when their son was about to die. They were 600 or 700 kilometres from home and they then had to get Kallem’s body home for burial. That is an expensive process. I suggest that this authority look at the special issues for people in regional areas—the emotional needs of the family at the time and also the expense related to donating organs to science.

I commend the government for taking the action to address this issue and I commend this bill to the House.

Steve Georganas (Hindmarsh, Australian Labor Party) Share this | Link to this | Hansard source

I too rise to speak in support of the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. The feature of the bill is of course the creation of the authority by January 2009, with the purpose of establishing a coordinated, consistent national approach to organ donation, including a network of organ and tissue donation agencies. The new authority will work within the context of the Rudd Labor government’s national reform package, which was announced on 2 July this year and endorsed by the Council of Australian Governments one day later. The national reform package will consist of targeted efforts to improve critical areas of the organ donation and transplantation sector.

I will run through a few ofthe key areas. Funding of $151.1 million over four years will see the reform package deliver the following: dedicated organ donation specialist doctors and other staff in public and private hospitals; new funding for hospitals to meet the additional staffing, bed and infrastructure costs associated with organ donation; continued national public awareness and education, which is very important; support for families of deceased donors; and other significant measures, including enhanced professional education programs, consistent clinical protocols, clinical trigger checklists to help hospital staff to appropriately identify potential donors, and data collection for organ transplants in hospitals.

Naturally, the focus of the government’s efforts is to increase the incidence of organ donation within Australia, which will sustain life of the best possible quality that our nation’s medical expertise can support. Figures already cited in this debate are worth keeping in mind. In 2007, the passing of 198 organ donors resulted in 657 organ transplants. That is potentially three lives saved for the action of each and every organ donor. That is remarkable—the thought that each and every donor could potentially make such a difference to multiple recipients of organ donations, not to mention the family members and loved ones of each of those organ recipients who would have had their most earnest prayers answered through such surgery.

However great the contribution of any organ donor is, only a third of those in need of a transplant in 2007 were fortunate enough to be blessed with the needed gift. More than 1,800 Australians are on the organ donor waiting list at any one time, and demand for transplants is likely to grow in the future with our ageing population. An increase in the ageing population will have an impact on lifestyles and there will be more need for organ transplants. We need to do all we can to support the increased prevalence of organ donors and the deployment of their organs once the donor’s time has come.

Different methods have been trialled around the world to increase the proportion of the population that subscribes to organ donation. Organisational incentives—that is, incentives to donate organs through a form of loyalty points scheme of donors and organ recipients—are practised to an extent in certain communities within the United States. Their preferred allocation system gives members of the community of organ donors slightly higher chances of receiving an organ donation should the need arise. This is a form of closed-community benefit whereby the members of the donor community have some limited form of reciprocal rights to acquire the available organs by virtue of their pledge to be an organ donor. I am not suggesting we go down that path—far from it. But I do believe there are practical contributions that a government can make, contributions that have been successfully demonstrated in countries around the world. In pursuing world’s best practice, this government is clearly doing the best anybody can.

On the point of the government’s package aiding and supporting the medical and medical support workforce in their duties, I would like to mention a study that sought to explain a 16-fold increase in organ donations over a few years within Puerto Rico. I acknowledge that Australia is very different from Puerto Rico. But it was interesting to note how crucial the focus of authorities was on supporting and assisting the medical workforce and others to develop the systems required to make organ donation work—and work well it does. Not only are medical professionals central to the success of such work but all the support and ancillary staff within the hospitals, and in the community, are involved in creating public awareness and acceptance. The extensive work on the service delivery and logistical side of the equation was fundamental to the successful increase in organ donations within that territory.

I congratulate the government for supporting these crucial factors, but it is not necessarily just a matter of getting the skills, resources, systems and logistics to a superior level. Medical professionals can need other forms of support as well. One factor that has limited the success of organ donor registration programs overseas is the communication of the legitimate feelings and wishes of the surviving family members.

Within Canada, a recent study highlighted how crucial medical staff are in working with the deceased person’s next of kin. A 2006 Canadian study found that, while family vetos had no standing in law, over two-thirds of the medical community surveyed believed that the family members of a deceased person should be able to veto the deceased family member’s determination to donate organs. That is two out of three medical staff being open to discounting a deceased organ donor’s wishes. As it happens, the same study found that only about one-third of the public thought the family should be able to veto the donor’s wishes. But there was clear evidence of the medical community exercising their authority in preference for the wishes of the surviving family members as opposed to the wishes of the deceased. Thankfully, the study reported that, in the majority of cases, the family did comply with the wishes of the deceased and approved organ transplantation.

Whether the medical community’s preference for the surviving family members’ wishes was due to legal confusion, fear of retaliation by the surviving family or out of compassion for those who were left behind, it is difficult to say. But, clearly, there is potential for emotional considerations felt at that point in the hospital setting to become central to the issue of organ availability and the saving of lives, and it may well need to be addressed calmly, rationally and with support offered to all concerned.

The influence of surviving family members on whether or not a donor’s wishes are actioned is not limited to Canada. Within the United States, researchers similarly point to surviving relatives vetoing the donor’s previously expressed wishes upon the donor’s passing. Whatever the donor had arranged prior to his or her death, whatever his or her beliefs and intentions, the will of the family often determines organ availability. And so I am especially supportive of the reform package assisting professional medical staff in this particular area of working with the surviving family members in recognition of the donor’s expressed wishes. This is not an easy task. It is likely to be an emotional and even ethical battle fought by many of those touched by such circumstances.

I have read that, while no major world religion—that I know of—uniformly forbids organ transplantation and many actively support it, there is clearly resistance to it within some denominations and religious communities. An online journal article I was reading asserted that some Orthodox Jews and Buddhists oppose transplantation because of issues surrounding brain death criteria—that is, the point at which a person is said to be technically dead. And this may be the case with others, those who are suspicious of who may be benefiting from a person being pronounced dead.

What is essential? It is essential that people be very well informed of such matters in those situations. Another grouping, Confucians, sometimes oppose transplantation because it violates their notion of bodily integrity, and many Christian Scientists reject the enterprise of transplantation altogether. In Mexico, the bodily integrity issue is to an extent shared by some of Mexico’s millions of Catholics with regard to things post mortem. Matters of faith and belief will always be with us, for good reason.

Perhaps the broader issues relate to the grieving family’s concern over the memory of their lost one. The mere idea of a person’s remains being ‘defiled’ through very substantial surgery can give cause for second thoughts. This is where support from a steady hand within the hospital context can be so very important at that crucial point in time, with people specifically trained and resourced to assist family members so they can work through their concerns for their loved one’s remains, work through any issues they may have with organs living on after their loved one has passed away and, ultimately, resolve to honour what in effect may be one of the last wishes of a person who clearly wanted to do the single best possible deed in support of those in need of life-saving organ transplantation. I support this bill and commend it to the House.

Jon Sullivan (Longman, Australian Labor Party) Share this | Link to this | Hansard source

I do not intend to speak for terribly long on the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. There are a large number of speakers and I would like to say at the outset that I am very pleased that there is bipartisan support for this issue. My own attention was first drawn to even the possibility of organ transplant—although in this instance I suspect it may have been tissue transplant—as a very young person and an avid reader of Reader’s Digest. One of the stories was about a 10-year-old Canadian girl, who had died of leukaemia, whose wish was that her eyes could be used to give somebody sight. I guess that that has been something that has stayed with me for my entire life.

In my first speech in February I spoke of a very dear friend of mine, Ian Burgett, who had passed away in the previous April and whose organs I believe went to six other people. I was very touched by Ian’s daughter’s comments at his funeral. His daughter Ruth, while I cannot now give you the exact words that she spoke, made the point to all those who were in attendance, some 300 or 400 people, that in the depths of your own personal despair at the loss of your family member there are other families whose members are waiting for you to save the life of their loved one.

As a nation we really have to address the situation that exists at the moment. It really is not a terribly good story overall but there are some excellent stories in the transplant sector in Australia. Transplant is a device that we can use—thanks to medical technology and research—to assist people who are in the end stage of organ failure. If that end stage of organ failure happens to be your kidneys you can be kept alive with dialysis machines for a long time. That does not happen if your end-stage organ failure is your heart, liver or lungs, for example.

Survival rates are not too bad. Survival rates for a kidney transplant after one year are 90 per cent and after five years are 75 per cent. In 2007 there were 342 kidney transplants conducted in Australia. For a heart or liver transplant after one year your survival rate is 90 per cent and after five years it is 85 per cent. Again there were 56 heart transplants and 147 liver transplants in 2007. For pancreas transplants the survival rate is even a little more attractive. It is 94 per cent after one year and 87 per cent after five years. There were 33 transplants involving the pancreas in 2007. There were also six heart and lung transplants, eight lung transplants and 65 double lung transplants.

When you look at the numbers, you can see that there are quite a number of transplants conducted but that, as the member for Hindmarsh pointed out in his contribution, there are 1,700 to 1,800 people on the waiting list at any one time. Sadly or fortunately, depending on how you want to look at it, the vast majority of those are for kidney transplants. I am pleased that as a consequence of an election commitment made by the Rudd Labor government in 2007 there is a $7 million 12-chair dialysis unit being built at the North Lakes health precinct at the southern end of my electorate. I had the good fortune to tour there quite recently with people from Queensland Health to have a look at its progress. I can relay to my constituents that it is going fairly well.

It appears that 90 per cent of Australians support organ donation. However only one per cent of deaths occur where organs can be used, although tissue such as skin, cornea or bone can be used from a greater number of people who pass away and it can also be stored in banks.

In this country we have a single register, the Australian Organ Donor Register, AODR, which is administered by Medicare. I understand that until 30 April this year, 1.1 million people had registered—999,000 as donors and 11,000 registering their opposition to being donors. As the member for Hindmarsh was saying just a moment ago, quite often in Australia—and the legal people around here will understand the concept a little better than I do—if express consent is given but the next of kin object to a donation, it does not proceed. Anecdotal evidence suggests that in many cases, at the height of their grief and in their lack of knowledge about the processes of organ donation or transplantation, family members decline to allow their loved one’s organs to be used. Some time afterwards they will come back to the hospital to apologise for their lack of knowledge, having gone away and learnt about the processes and that they made a poor decision at the time.

I urge every Australian not only to register as an organ donor but also to make sure that you and your family have solid, strong and lengthy conversations so that there is no doubt in your family that it is your intention to donate and that there is no doubt in your mind that other members of your family will in fact to donate your organs.

As I said, Australia has 1.1 million people registered but our donor rate is much lower than in many other countries. On a scale of like countries, we rank 19th out of 21 for the number per million who become organ donors. For example, in Spain I understand it is 34 per million; in Australia it is nine per million. We are equal 19th with New Zealand, which has the same rate. It is quite galling to be equal to New Zealand in anything. Only Greece has a lower rate than ours. I think we have all been touched in recent times by the story out of Greece about the young Australian man who unfortunately lost his life on an island and his family made the very heart-wrenching decision to allow his organs to be used to assist people in Greece. That is quite a wonderful story. It showed a great deal of courage and compassion by the parents of the boy who had unfortunately been killed over there in Greece.

While we have a low number of donors per million of population, we have a higher utilisation rate. At 3.5 donations per donor on average, we are getting towards the top end of the utilisation that is able to be made. Our systems are very good in performing the medical procedures necessary. The survival rates are wonderful. If I were requiring a transplant of any kind, knowing that I had an 85 per cent chance of living another five years or more I would be fairly keen to take that risk, particularly when, as we say, transplants occur at end-stage failure of organs. So there is not a great deal of life left for you to look at.

Although I did not want to take a lot of time this evening, I have in fact taken more than I anticipated. Again, I thank the opposition for their bipartisan approach to this very important government initiative. I appeal again not only to my constituents but also to the people of Australia to think about becoming an organ donor. Make sure you have those conversations with your family so that there is no risk that your organs will not be used should the occasion to do so arise.

Mike Symon (Deakin, Australian Labor Party) Share this | Link to this | Hansard source

I also rise to speak in support of the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008, which establishes the national authority of that name. This bill is vital and will introduce a long-awaited reform and improvements in organ and tissue donation in Australia. It is vital because it creates the framework through which the Rudd government’s $151 million reform package in organ and tissue donation can be delivered. And it is vital because, for the first time in Australia, the federal government will play an instrumental role in our efforts to reduce Australia’s transplant waiting lists—waiting lists for organ transplants that we know at any one time average around 1,800 people. That is 1,800 Australians, just like you and me, who are getting by as best as they can in complete uncertainty about their own futures.

Many of these people may be after life-improving procedures such as a cornea, bone or skin tissue transplants. But for many it is a matter of life or death as they wait, often in a dire state of health, for a major organ transplant—for a heart, lung, kidney, liver or pancreas. They are waiting every day for that phone call from the hospital to say that the hospital has located a suitable donor. This is the day-to-day reality facing those on kidney dialysis, for example. They wait an average of four years for a suitable donor organ to become available. I mention those on kidney dialysis because more than 75 per cent of those on the waiting list for all organ transplants are waiting for a kidney. Sixty per cent of all transplants carried out relate to the kidney. For many of them, a suitable donor simply comes too late.

For a country like ours, where donor survival rates are very high, and we are amongst the very best at transplantation surgery, it feels like some critical part of the process has not been working. In 2006, Australia had only 9.8 donors for every one million people population. This places us well behind the world leaders: Spain with 33.8 donors per million population, and the United States with 26.9 donors per million population. That is really quite surprising, considering the difference between their health systems and ours. According to Transplant Australia, Australia currently stands 17th out of 19 countries listed on the International Registry of Organ Donation and Transplantation. The result of our low donor rate meant there were only 198 deceased organ donors in Australia last year, resulting in 657 transplants and meeting only one-third of the demand that exists.

To put this into perspective, if we had the same rate as the USA we would have 500 donors a year, and if we had the same rate as Spain we would have 680 donors a year. In fact, Australia’s organ donation rate has hovered around 200 donors per annum for many years. If we were able, for instance, to achieve a 10 per cent increase in organ donors in Australia annually, that would change the lives of about 70 more people a year, plus many others through tissue donation.

The need for a national response was made loudly and clearly at the Australia 2020 Summit this year by the health experts that gathered in Canberra. At the 2020 Summit, one of the key ideas discussed was the possible establishment a national organ donation scheme. This bill provides for a national authority that will deliver the government’s broader reform package in organ and tissue donation as announced earlier this year. This is a scheme that Australia needs to urgently boost our woefully deficient organ and tissue donor rate.

There is no doubt that the Rudd government’s reform package announced in July has been roundly welcomed by health experts and the people that are working tirelessly in the field. Dr Tim Mathew, Medical Director of Kidney Health Australia recently stated:

The changes are strongly supported by the kidney transplant sector where more than 1,350 patients are waiting today for the chance of a new life with a transplant.

Chris Thomas, CEO of Transplant Australia, has also thrown his support behind the government’s reform efforts. He said:

Across Australia there are 1,866 Australian families praying and hoping that their loved one will receive a telephone call that will save their life, with the news that an organ has become available … That phone call will be far more likely with this reform package.

This bill recognises the simple fact that we cannot boost organ and tissue donation and transplantation rates in Australia, saving more lives every year, without a national system in place. It moves on the government’s commitment to establish Australia as a world leader for organ donation and transplantation. When we look at what the leading nations in organ donation and transplantation rates are doing, they all have one thing in common: they have national leadership in that field. It is the one thing that has been crucial to their ability to achieve world’s best practice in this area while other countries, like Australia, have sadly lagged behind. World leaders such as the USA and Spain have national organ donation systems in place that take on the job of coordinating and driving the activity on the ground—in their local hospitals, through their clinical networks. They have national systems that spearhead the vision, monitor the results and bring the whole effort together while being supported by constant community and professional education efforts. In light of the successes with organ donations in some countries, Australia should learn and apply the successful principles of these schemes where we can.

This bill provides for an independent national authority, with funding of $24.4 million over four years, to lead our new national approach. It will be managed by a CEO with direct accountability to the federal Minister for Health and Ageing. That CEO, working with the authority and other peak organisations, will have responsibility for a multipronged approach to boosting organ donation. That will include such areas as: formulating and supporting national policies and protocols for donations; overseeing a national network of clinical specialists, hospital staff and agencies dedicated to organ and tissue donation activity; monitoring and supporting in-hospital practice improvements; and education to upskill those involved in organ and tissue donation. It will also include managing ongoing national community awareness campaigns and education programs, which are vital if we are going to get a scheme such as this to work properly and in a continuing manner. And it will also involve constantly monitoring and analysing data that relates to organ and tissue donation, making financial grants to organisations that provide essential services such as clinical data collection and organ matching, and implementing a national eye and tissue banking network. In addition, expert advice will constantly be made available to the CEO through a new 15-member advisory council, whose members will be experts in a vast range of areas affecting organ and tissue donation.

Collectively, the measures in this bill will help establish Australia as a world leader in organ donation and transplantation. And, as I have stated, the authority will have the task of implementing the government’s broader, $151 million reform package in this area which includes $136.4 million of new funding over four years. The key features of this include: $67 million to fund dedicated organ donation specialist doctors in hospitals; $17 million in new funding for hospitals to meet additional staffing, bed and infrastructure costs that come with an increasing rate of organ donation; $13.4 million to maintain and increase public awareness in the community about organ donation schemes; and $1.9 million to support the bereaved families of organ donors.

What we are talking about here is an extremely comprehensive and historic set of reforms tackling all points of the process. One critical point, of course, is the point at which bereaved relatives are asked to give consent. This bill ensures that there are dedicated staff on the ground who are trained in the delicate matter of dealing with families who may be asked to give their consent. The inadequacies at this point largely explain why, with six million registrations on the Organ Donor Register, there has been no real increase in the number of lives being saved. And we must not discount the cost benefits that transplants can bring, versus ongoing treatment. If I may go back to the example of a patient on kidney dialysis, the figures show that dialysis costs $83,000 per year per individual who is waiting for a transplant, but the cost of a transplant is $65,000 in the first year and then $11,000 per annum thereafter. So there is an immediate benefit, taking a drain on costs off our health system, and there are long-term cost savings to be made by getting this right. More importantly, however, transplants improve the lives of so many individuals who could have a better life but who are just waiting for that phone call.

All of these initiatives have strong support from all Australian governments at COAG, the organ and tissue donation sector and very influential community groups including Kidney Health Australia, Transplant Australia and ShareLife. We know Australia is a world leader in clinical outcomes. Our surgeons, the people who are doing the transplanting, are among the best in the world. As the member for Longman noted in his speech, more than 90 per cent of Australians support organ donation. However, we know that this has not translated into actual organ donations to date. Under the provisions of this bill, with everybody working under the one umbrella, and with great community support and goodwill on both sides of this House, we can truly become a world leader in organ donation and transplantation. I commend this bill to the House.

Mark Dreyfus (Isaacs, Australian Labor Party) Share this | Link to this | Hansard source

I am very pleased to speak today to the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. This bill will provide the much-needed national leadership to lift organ donation rates in Australia. This is particularly important given the lack of national leadership on organ donation, an ageing population and the projections of a rise in chronic diseases. Transplanted organs and body tissues can, and do, save lives. These organs include kidneys, lungs, hearts and pancreases. The body tissues would include heart valves, skin, bones and corneas. Australians need these organs and tissues. Over 30,000 Australians have benefited since transplantation became a viable treatment option. Our doctors and medical staff provide some of the best clinical outcomes for transplant patients but they cannot do their work unless there are organs and tissues available.

Unfortunately, Australia has lagged behind the rest of the world in terms of donation rates. Australians Donate, the former peak national body for organ and tissue donation, reported that on 3 January 2008 there were 1,875 people on transplant waiting lists. In 2007, there were 198 organ donors, from whom 626 transplant operations occurred. This is equivalent to 9.4 donors per million of the Australian population. By comparison, Spain has a rate of 33.8 donors per million, the highest in the developed world; France has a rate of 23.2 donors per million; the United States, 26.9; and the United Kingdom, 10.5. Despite the relatively low donors per million rate, up to 90 per cent of Australians support the idea of organ donation. It is clear that we must transfer this very high support rate into substantive donation rates. The will is there and, hence, this government will provide the mechanisms to improve these rates.

This bill will deliver a comprehensive national reform package for Australian organ donation. The centrepiece of this scheme is the Organ and Tissue Donation and Transplantation Authority, which will work with states, territories, clinicians, consumers and community groups to deliver world’s best practice. The authority will be managed by a CEO with direct accountability to the Minister for Health and Ageing and have a management structure similar to the National Health and Medical Research Council. The CEO will be selected on a merit based process consistent with Australian Public Service agency heads, which will lead to an appointment of an individual who will be able to deliver on the commitments of this package. The CEO will spearhead the coordinated national approach to organ donation. The specific responsibilities include: overseeing and supporting a national network of clinical specialists; overseeing and supporting a national network of organ procurement agencies; managing and monitoring a national professional education and training program; managing a national awareness program; collecting and analysing data to contribute to further development and reforms; and administering funding to non-government organisations to provide essential associated services.

The bill will deliver the $151.1 million commitment made by the Rudd Labor government in July 2008. There will be $46 million to form the independent national authority and $67 million to fund dedicated training of specialist doctors and staff in public and private hospitals. These staff will work closely with emergency department and intensive care units to deliver better clinical outcomes to patients. There will be $17 million for hospitals to fund additional staffing, bed and infrastructure costs and $1.9 million to provide counselling and support for donor families. This support will include bereavement counselling and will allow the national authority to develop a national best practice model for counselling.

There is a suite of reforms as well, which include creating a national network of state and territory based organ donation organisations, enhanced professional education programs, consistent clinical protocols, clinical checklists and better data collection for organ transplantation in hospitals.

The government will also appropriate $136.4 million worth of funding over four years to boost the number of life-saving organ transplants for Australians. This package was endorsed by the Council of Australian Governments in its 3 July communique. The newly formed authority will provide a national plan for reform to the Council of Australian Governments within a year of being formed.

The package was developed with close consultation from expert bodies including the Transplantation Society of Australia and New Zealand, the Cognate Committee on Organ and Tissue Donation and Transplantation, Transplant Australia, Kidney Health Australia, ShareLife, Gift of Life and Zaidee’s Rainbow Foundation as well as other community groups.

I would like to take a moment to discuss one of these groups. The Transplant Waiting List Advocacy Group, convened by Mr Tim Richards, of Mentone, in my electorate, have been very active both in the electorate and in other parts of Australia. Mr Richards is on the waiting list for a heart and double lung transplant, and he approached me earlier this year. As he told me, not just he but his wife and his three year-old son are closely affected by the outcome of waiting for a transplant. He was diagnosed with heart failure and pulmonary hypertension in 2005 and uses supplementary oxygen daily. He wrote this to me:

Depending on the outcome, my family will move forward and prosper or be devastated. And of course there are many other patients in a similar situation of waiting, and many more patients who will wait in the future, and again many patients who have unfortunately died while waiting. Together with everyone’s dependents and families, there is a lot riding on having a decent, working, organ donation system in place.

The government’s package will finally deliver the deserved national approach to dealing with organ donation issues. It will deliver genuine investment into funding medical staff and infrastructure to improve donation rates and shorten waiting lists. It will deliver research and statistics which will allow for further development and reform of the organ transplant system. And, most of all, it will deliver the world’s best practice system which all Australians, including Tim Richards, deserve.

Finally, I would also like to acknowledge the 5.4 million Australians registered on the Australian Organ Donor Register scheme. I am proudly one of those 5.4 million Australians. I urge my fellow Australians to join us on this list. I also support a robust discussion of organ donation schemes amongst family and friends to ensure that the final hurdle of organ donation, that of family members being unclear of their loved one’s position on organ donation, can be overcome.

This bill is another example of the government delivering in the nation’s best interest. As flagged by the Leader of the Opposition in his response to the Prime Minister’s second reading speech, this is a bipartisan issue and I welcome the opposition’s support for this very worthy bill. I commend the bill to the House.

David Bradbury (Lindsay, Australian Labor Party) Share this | Link to this | Hansard source

I rise to speak in support of the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. At any one time there are 1,800 Australians on waiting lists for an organ donation. This is despite the fact that more than 90 per cent of Australians support the idea of organ donation. Last year there were just 198 deceased organ donors in Australia. This resulted in 657 transplants. This met one-third of the demand. The International Registry of Organ Donation reports that in Australia there were just 9.8 donors for every one million people in 2006. Despite an increase of one million donor registrations from 2002 to six million, there has been no increase in the number of lives being saved through transplants.

In light of these figures, one may well ask oneself why there is such a mismatch between the overwhelmingly strong support within the Australian community for organ donation and the relatively low numbers of registered organ donors. One explanation is that we are currently failing at our emergency wards and intensive care units. Currently we do not have dedicated staff trained to assist families at a difficult time when there is a chance that the family may consent to organ donation. There is also a lack of dedicated hospital resources to properly manage the clinical procedures that are required for an organ or tissue transplant to occur.

I have also observed in many of the discussions that I have had with friends and family that one of the common barriers to organ donation is the misconception that mere election that one would like to be an organ donor on one’s licence is sufficient to ultimately deliver that result. I think that a lot of work has been done in recent times to publicise the measures that need to be undertaken for an individual to really ensure that their organs will be available for donation if they pass away in circumstances where that is possible.

The objective of the bill is essentially to bring Australia into line with world’s best practice in organ and tissue donation for transplantation. The government has committed $151.1 million towards this objective, including $136.4 million in new funds. The national plan that is outlined in this bill involves five key steps. Firstly, as part of this plan the Australian Organ and Tissue Donation and Transplantation Authority will be established. This will create an independent national authority that will be responsible for achieving a coordinated and consistent approach. This will come at a cost of $46 million. Secondly, a further $67 million will be spent to employ trained specialists and other staff dedicated to organ donation. They will work with the emergency departments and intensive care units in selected private and public hospitals across the country. Thirdly, $17 million of new funding will be provided for hospitals to meet the additional staffing, bed and infrastructure costs that arise out of organ donation. Fourthly, and importantly, $13.3 million will go towards raising awareness within our community of the organ donation and transplantation system. Finally, a further $1.9 million will be provided for counsellors to support donor families.

The Organ and Tissue Donation and Transplantation Authority will coordinate and train clinicians and other hospital staff dedicated to organ and tissue donation in our hospitals. The authority will oversee a new national network of state and territory organ and tissue donation agencies. It will introduce and manage a new national data and reporting system. The authority will lead programs to improve community awareness about organ and tissue transplantation, and will work with clinical and professional organisations to develop clinical practice protocols and standards. All of the states and territories have signed up to the national best practice plan. Work is on track to have the national authority established by 1 January 2009.

I would like to turn to a related matter and engage in some discussion in relation to a series of events and games that I have only recently become aware of, and that is the Australian Transplant Games. Recently I had the opportunity to speak in this House about some of the fine achievements of local Olympians and Paralympians within my community. I felt that this was a good opportunity to acknowledge the efforts of some Transplant Games participants that live in my local community.

For those of you who are not aware of the Australian Transplant Games—and, as I indicated, I only recently became aware of them as a result of an article in the Penrith Pressthe games are essentially designed to achieve two purposes: firstly, they showcase the great demonstration of life that can be lived by those transplant recipients and, secondly, they are an opportunity to raise greater awareness about the issue of organ donation.

The games are held every two years, and this year from 4 October to 11 October the 11th games will be conducted. They will consist of various sporting and recreational activities and will be held in Perth, hosted by the City of Belmont. I am told that the activities involved range from chess and backgammon through to high-level sports including tennis, squash, athletics and swimming, so there is a fair array of events on display.

In terms of who can participate, I understand that the athletes can be recipients, those on dialysis, the donor families, living donors and supporters. All athletes need to be members of Transplant Australia. The athletes are expected to come not only from every state; a large number of competitors will also come from overseas.

I would like to acknowledge a couple of local residents from my community that will be participants in the upcoming games. A local resident, Lyndon Olsson, underwent a kidney transplant 24 years ago. He is the father of two children and he won nine medals at the 2006 Australian Transplant Games, including three gold. That was a fantastic effort and I am sure that Lyndon will be able to achieve similar success in the upcoming games. To add to this, Lyndon also competed at the Winter Transplant Games in Finland in March this year. So he is not only a kidney transplant recipient but also a man of all seasons and a great athlete throughout those seasons as well.

I would also like to acknowledge Anthony Edwards, an 18-year-old from Glenmore Park in my local area. Anthony underwent a heart valve transplant in 1998. He has won a total of 20 medals across the last two Transplant Games in athletics, swimming, tenpin bowling, archery and rowing. Clearly, there is no holding Anthony back. Twenty medals is quite an outstanding achievement and I wish to have that acknowledged in the House today.

In conclusion I would like to indicate some of the things that I now intend to do in my local community to continue to take up the Prime Minister’s challenge. The Prime Minister in his second reading speech called on all members of the House to consider donating or registering for donation of their organs. I must say that after a discussion with my wife on this matter I will be entering the register shortly. Above and beyond that, I really do want to use my position as a member of parliament to try to publicise this issue within my local community. There are a number of options that I will be pursuing, but I certainly see this as being something that needs to be more publicly known throughout the community so that, hopefully, we can make the transition from that broad support for organ and tissue donation through to actually delivering those organs and that tissue for the people that need them when they need them.

Finally, I would like to acknowledge some of the groups that participated in and contributed to the development of the national plan that is contained within the bill. I acknowledge the efforts of the Transplantation Society of Australia and New Zealand, the Cognate Committee on Organ and Tissue Donation and Transplantation, Transplant Australia, Gift of Life, the Zadie’s rainbow Foundation and ShareLife. These are organisations that have played a significant role.

I also wish to acknowledge two other high-profile cases that I have observed as someone perhaps not that familiar with these issues. Obviously there was the death of David Hookes, one of our finest cricketers, and the work that was done by the David Hookes Foundation after David’s tragic death. If there was anything good to come out of that death—and rarely is there anything good that comes out of someone’s death—then clearly it was the publicity that organ donation received as a result. That was the good that was contributed to the community from that. Also, more recently, there was the very tragic case of Doujon Zammit. I think that, in the great gift of donating his organs, his contribution in life will continue to be felt by those who are now benefiting after his death. It is in that vein that I support the bill.

Yvette D'Ath (Petrie, Australian Labor Party) Share this | Link to this | Hansard source

I rise in support of the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. The purpose of this bill is to establish the Australian Organ and Tissue Donation and Transplantation Authority, which will provide national leadership to the organ and tissue sector and spearhead the campaign to lift donation rates. It will also coordinate, implement and monitor national reform initiatives and programs aimed at increasing access to lifesaving and life-transforming transplants. To achieve its aims, the authority will use experience gained from other countries in its work in increasing the numbers of donors in Australia and raising public awareness and knowledge of organ and tissue donation.

The government’s reforms in this area have been designed using international and national best practice models with a proven track record of maximising donation rates. Data from countries comparable to Australia indicates that a centralised and coordinated national approach lifts donation rates over time. It is this coordinated, central approach that has been so lacking and yet so desperately needed in this country. Over 90 per cent of Australians support organ donation, but the actual number of donations is, sadly, very low. Australia has had a longstanding shortage of organ and tissue donors. The disparity between such overwhelming support for organ donation and such shockingly low actual donation rates occurs for many reasons, and this bill goes some way towards addressing them.

The authority will be directly responsible to the Minister for Health and Ageing and will report as closely as possible to the end of the financial year on its success in lifting donation rates. The areas that the authority will have responsibility for include: the provision of an organ or tissue donation and transplantation service; the identification of potential organ or tissue donors; the obtaining of organs or tissue for transplantation; waiting lists for potential organ or tissue recipients; the allocation of organs or tissue for transplantation; support services for organ or tissue donors and their partners and families; the skills and knowledge of people involved in providing organ or tissue donation and transplantation services; and public knowledge about, and confidence in, organ or tissue donation and transplantation services.

This bill also provides for the establishment of the Australian Organ and Tissue Donation and Transplantation Advisory Council. The council will comprise 15 expert members who will advise and inform the CEO of the authority on policy issues. Like many bills that come through this House, this bill can affect many people’s lives. I believe that lives can be saved through a more nationally coordinated approach and investment in areas such as specialist transplantation teams throughout Australia.

Discussion around the topic of organ and tissue donation and transplantation can sometimes reduce the issue to numbers and statistics—the number of people who are donors, the number of people on waiting lists and the number of donations per year. These numbers are important and inform debate, but organ donation and transplantation is really about people—the people who choose to donate their organs or tissue, their families and loved ones and the people who receive a donation and their families. This issue touches so many lives: the individual who chooses either to be a live donor or to be registered as a donor if they die, the family of that donor, the recipient of that organ or tissue, and the family of the recipient.

As we know, any one person who is an organ donor could end up saving a number of lives. Choosing to be a donor either through a live transplantation or by identifying that you wish to be a donor if your life is lost so that you may help others is not a decision taken lightly by anyone. It is even more difficult for the family left behind to be able to deal with this issue at the height of their grief. That is why the new Organ Donor Register is such a significant improvement on the previous system of simply noting your willingness to be a donor on your drivers licence. The register requires that you discuss this issue with your immediate family so that they are aware of your wish and to confirm that you have given serious thought to this act.

Although I had been noted as a donor since first receiving my drivers licence in Queensland many years ago, I was pleased to add my name to the Organ Donor Register in February of this year. This now puts beyond doubt my wishes to my family. When people pass away because of illness or accident, families struggle with this decision even if organ donation was the wish of the person who died. Hopefully the Organ Donor Register and the process undertaken before placing your name on the register will assist at this difficult time when a family member dies. I concur with the comments of those who have already spoken on this bill in this House that those who donate commit the most selfless act imaginable. I thank them and their families very much for it.

As I stated earlier, organ and tissue donation and transplantation is about people. I would like to take this opportunity to talk about a couple of stories that show the strength of families that have dealt with tragedy and seen lives saved as a consequence of donations. The first story has been placed on the Teamlife Transplant Australia website by Leith and Jenny Bawden, who are the parents of a special young man named Steven Bawden. Leith and Jenny Bawden also placed a photo of Steven on the website. This is the story they posted with Steven’s photo:

This is the face of a fellow Australian. Just like thousands of us. Just like you and me. This is also the face of a special young man who lost his life on 16 October 1997—the face of our son, Steven. This is not an extraordinary face, but the possessor of this face accomplished an extraordinary act. Steven is an organ donor.

Although he was only 19 at the time of his death, Steven had already shown he was a compassionate young man through his work in the funeral business. Because of this and his experiences with death, not only of the aged and very young but also within his own age group, he understood the frailty of life. He could talk quite openly about death and naturally the subject of organ donation was raised. He expressed his fervent desire to register his intent and we had many long and meaningful discussions as a family over the dinner table. We were all in agreement that organ donation was a worthwhile and sensible step.

When the tragic event occurred, we had no doubts which course of action Steven would want us to take. The decision, at a time when you can barely function, was made simpler for us as a family because we had talked about the topic at length. We did not have to second-guess Steven’s wishes as we knew what they were. Thank goodness we had talked about organ donation with him.

His compassionate and unselfish gift has changed many lives. Not only the lives of his six recipients but also the lives of the many people who loved and cared for him. Steven’s gift gave sight to a teenage girl and a middle-aged woman. He saved the life of the middle-aged mum liver recipient and the heart recipient of a middle-aged man. Of the two kidney recipients, one was a man in his early thirties and the other a middle-aged family lady. His gifts have made the difference to their lives as evidenced by the cards and letters we receive.

Years have passed and we have been kept up-to-date with the progress of the recipients. All remain well and happy. This is so very important to us. It goes without saying that we are extremely proud of our son and the way in which he conducted his life as well as his death. Take care.

And then there is the story of Zaidee Rose Alexander Turner, aged seven years and 22 days, who died suddenly on 2 December 2004 from a burst blood vessel in her brain called a cerebral aneurysm. The Turner family had been registered organ and tissue donors for five years. As a result, Zaidee donated her organs and tissues at the Royal Children’s Hospital. Zaidee was the only child in Victoria under the age of 16 years and one of the youngest Australians to donate her organs and tissues in 2004. She was only one of six children nationally to donate their organs.

In 2004, 160,000 Australians died. Only 218 were organ and tissue donors. Being a parent, I can only imagine how a parent deals with such tragedy, but I do ask that families consider how one life lost may help many others. Having been listed as a donor for many years, I strongly encourage others to sit around the kitchen table with their families, just as the Bawden family did, and discuss becoming a donor and what it means. It is important that this is not a taboo topic in families and that discussions about donation are not left until a loved one has passed or is about to pass away. The loss of a loved one is difficult enough without the added stress of making a decision like this at such a time.

Amongst many benefits from this bill, one of the greatest is the $13.4 million provided for support for families of deceased donors, which is so fundamentally important. For this and all the reasons referred to by me and other members who have spoken in this chamber, I commend this bill to the House.

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

I too rise to speak in support of the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. I note with interest the number of members who have spoken very passionately on this bill, which clearly demonstrates the effect this matter has on individuals, perhaps because most of us, as other speakers have quite rightly said, know of someone in the community who has been the beneficiary of an organ transplant. I will come to that a little bit later.

This bill establishes the Australian Organ and Tissue Donation and Transplantation Authority in order to provide national leadership to the organ and tissue sector and to drive, implement and monitor national reform initiatives and programs aimed at increasing Australians’ access to life-saving and life-transforming transplants. The Australian Organ and Tissue Donation and Transplantation Authority is part of a national reform package worth $151.1 million, including new funding of $136.4 million over four years.

I know other speakers have referred to the funding but I will too because it is a key feature of the bill. There will be $67 million to fund dedicated organ donation specialist doctors and other staff in public and private hospitals; $46 million to establish the authority, to be set up by 1 January 2009; $17 million in new funding for hospitals to meet additional staffing, bed and infrastructure costs associated with organ donation; and $13.4 million to continue national public awareness and education in respect of this issue. There will also be $1.9 million for counselling for potential donor families and for other significant measures, including enhanced professional education programs, consistent clinical protocols, ‘clinical trigger’ checklists and data collection for organ transplants in hospitals.

I list these things because they clearly indicate to me that this bill and the process under which the authority will be established have been very carefully thought through. All the matters that one might believe ought to be addressed if we are going to have a national scheme have been included in the preparation of the bill and the establishment of the authority.

I support this bill because ultimately it will save lives, it will improve the quality of life for both recipients and their families and friends and it will give hope to those people who right now are in need of an organ transplant of one kind or another.

As the Prime Minister quite rightly pointed out in introducing the bill, there are 1,800 Australians currently on waiting lists for an organ donation that could save or transform their lives. Last year, there were just 198 deceased organ donors in Australia. This resulted in 657 transplants, meeting just one-third of demand. I raise those statistics again simply to draw a comparison with what might have been possible.

In the year 2005-2006, there was a total of 133,700 deaths in Australia. Even if you accept that many of them were not deaths where organ donation might have been possible, there were some 7,840 deaths which could be referred to as having occurred from external causes—that is, from things like road accidents, work accidents, suicide and so on—whereby the opportunity to have assisted someone else might have been possible. It would not take a lot more encouragement for people in the community to become organ donors and to perhaps meet the current needs of those 1,800 people. For those people, an organ transplant is certainly something that they dearly want. Not only are their lives put on hold whilst they wait but, in some cases, people pass away while they are waiting.

Other speakers have made the point that we all know, perhaps, of someone who has been the recipient of an organ donation. Given that there are 30,000 people in Australia who have benefited from organ or tissue transplantation that is not surprising. These people have been given a new chance in life and so have their families. I want to speak briefly about someone I know who was the recipient of an organ transplant, someone I have known since childhood who is of a very similar age to me and with whom I went through my school years, who in recent years was in need of a kidney transplant. He waited several years and was able to survive because of ongoing treatment at the hospitals. He was about to give up. Fortunately for him—and he is one of the fortunate ones—he was able to get the kidney transplant that he had been waiting so long for. His life has changed substantially, and I see it in his health. Whilst he is certainly not 100 per cent, he is a very different person as a result of the transplant. It has also given hope to his wife and his children that their husband and father will be with them for many years to come. That is the effect an organ transplant has.

I want to outline some other matters. I notice that the member for Petrie made similar comments and outlined some of these matters but, because of their importance, I too want to outline them. This bill will mean that potential donors are identified in hospitals across the country. Every family of a potential donor will be asked about organ donation. A dedicated specialist will work with the potential donor and their family to provide support through what is often a very, very difficult process. Hospital staff will be able to focus on donor care knowing that the hospital has a separate budget to cover organ and tissue donation. Families will receive the support they need at the time of organ donation and afterwards, and there will be an equitable and safe process for managing transplant waiting lists and allocating organs once they become available. The new authority that will be established will coordinate clinicians and other hospital staff dedicated to organ and tissue donation in hospitals across the country. Professional staff trained to do that will oversee a new national network of state and territory organ and tissue donation agencies, introduce and manage a national data and reporting system, lead ongoing community awareness programs about organ and tissue donation and transplantation, and work with clinical and professional organisations in developing clinical practice protocols and standards.

I highlight those points to give confidence to those people who are thinking of becoming organ donors that there will be a very thorough process established in order to ensure that their decision to become an organ donor is one that they can live with in confidence. The authority will enable all families of potential donors to be asked about donation, and it will work with clinicians, hospitals and community organisations to educate people about donation, to support families through this decision and to make sure that suitable patients will be considered as potential donors.

In my closing remarks, I want to very briefly speak about perhaps the most common myths which quite often prevent people from becoming organ donors—and there are many myths. The most common one and the one that I hear all too often is that if someone nominates to become an organ donor and they are in a serious accident, either the paramedics at the time—the ambulance people—or, once the person has been transferred to the hospital and is still alive but in a critical state, the medical team may not do everything that they possibly can to save that person. That is a myth and it should be dispelled. Under this legislation, and under the reality of what happens in hospitals and amongst the medical fraternity, it would be two entirely separate teams of doctors. Firstly, the doctors at the hospital would have no knowledge about organ donation at that time and, secondly, as professionals their first obligation is to save the person and that is exactly what they will try to do. I have every confidence in that. So anybody who is put off that by the myth that their life will not be saved in a serious emergency is certainly mistaken and should not make the decision based on that.

In the few seconds I have left, I simply want to make this point: apart from the fact that the process of organ donation gives life to and saves the lives of so many people, there are also huge economic benefits to the community at large. Those economic costs should be noted. To use just one example, the cost of transplantation of a liver is about $75,000 yet the cost of dialysis treatment for a person with kidney disease is $84,000 per annum. Purely from an economic point of view, there are a lot of good reasons why this authority and this bill are deserving of support. I support the bill, I appreciate the fact that it has bipartisan support and I certainly commend it to the House.

Danna Vale (Hughes, Liberal Party) Share this | Link to this | Hansard source

I thank the generosity of my colleague the member for Ballarat for allowing me to speak in the interlude for five minutes. I commend the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008 to the House and I support it wholeheartedly. I actually wanted to make a special note that when we think about donating organs we do not often think that we may one day need to be a recipient of such generosity ourselves.

My father contracted leukaemia when he was in his early 70s. The doctor told my father that it certainly was not going to be something he would die of but he would certainly die with it because of his age. He accepted and lived with that. But when my youngest brother, Roger, also contracted leukaemia in his early 40s, it was a very different issue. For many years, under the guidance of his medical advisers, he managed that particular condition for some time. But it became increasingly evident that he would require a bone marrow transplant.

I know that bone marrow is not considered to be the kind of transplant like an organ where there is a trauma that actually makes such a gift available. As it happens, we all as family members took the test to see if we were compatible for the transplant, but we were not. So a search began across Australia for a compatible donor. Eventually, two were found, so I think it is a wonderful thing that there will be a central authority that is going to be able to manage and coordinate such donations. My brother subsequently had the operation over 2½ years ago, and he has an excellent prognosis for the rest of his life.

I want to say on behalf of my brother and my family that we were not able to obtain the name of the person from Victoria who made such a generous donation. Through you, Madam Speaker, and through the Hansard, I want to say to that young man in Victoria: thank you for what you did for our family. We can never thank you enough. Your generosity has certainly touched all of our hearts and the hearts of all those with whom we come into contact. I commend this bill and, if ever you read it, my brother’s name is Roger Ward. He comes from Upper Lansdowne near Taree, so you might identify him by that. I just want you to know that we are grateful for your generosity and for the gift of life that you have given to my brother.

Janelle Saffin (Page, Australian Labor Party) Share this | Link to this | Hansard source

I thank the honourable member for her contribution.

Ms Catherine King (Ballarat, Australian Labor Party) Share this | Link to this | Hansard source

I also acknowledge the very lovely contribution by the member for Hughes to this debate. It is wonderful to hear that your brother is doing so well. There have been many emotional stories that have formed part of this debate. That really drives home for us here in this place just how terrible it is when your family members become ill and you feel so powerless that you cannot do anything about it. I think this bill touches the heart of that. The member for Hughes’s speech was a very personal one and I thank her for that contribution.

I rise today to support the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. Over recent years I have had cause to discuss with my own family the importance of organ donation. When I was going through my husband’s wallet—not that I do that on a great many occasions!—I discovered that he had an organ donation card. I did not know that he had registered as an organ donor because we had not had that discussion, so we promptly did have that discussion. He discovered that I too had registered as an organ donor, but neither of us had had any dialogue about it. That goes to the heart of many of the aspects of this bill—just how important it is not only to register as an organ donor but to have the discussions now, when we are well, within our families to make sure that people know our wishes.

It is not an easy thing to contemplate death, but unfortunately it is an inevitable part of our lives that we are eventually going to die. Hopefully we do not die in tragic circumstances, but if we do those of us who wish to make a contribution by way of donating our organs need to make sure that our family members absolutely know our wishes now so that they are in a position to carry them through. Certainly my family has had that discussion. Yesterday I had that discussion with my sister-in-law, who is here caring for my young son, Ryan, and I discovered that she also is an organ donor, which I am very pleased about.

There are many people across Australia who have had similar conversations with their loved ones, and there are also many families who have not. The Rudd government is aiming to make this a topic of conversation across every dinner table in Australia. Our aim is to position Australia as a world leader in best practice organ donations and transplantations.

There are approximately 1,800 people on a waiting list for organ donations in Australia, and it is the responsibility of government to reform our health system to improve and to save the lives of these people. We plan to do this by implementing a system that will improve organ donation rates across the nation—a system that has been supported by all Australian governments via the Council of Australian Governments. At the COAG meeting in Sydney on 3 July, all states and territories endorsed this organ and tissue donation support package. With support from state and territory governments, we as a nation can implement a nationally coordinated organ donation and transplantation system. That nationally consistent approach will be based on world’s best practice models.

The bill establishes the Australian Organ and Tissue Donation and Transplantation Authority. The authority will be established to lead a coordinated, consistent approach to organ and tissue donation and transplantation initiatives, including a network of organ and tissue donation agencies. The authority will work with the states and territories and with all stakeholders to build a world-class system. Progress has already been made towards having this authority up and running by the start of next year.

The authority will be managed by a CEO, and the position has already been advertised. The Australian Organ and Tissue Donation and Transplantation Authority, headed by the CEO, will be responsible for implementing this government’s $151.1 million reform package. The package reflects our commitment to improving our nation’s health system. The package includes $67 million to employ medical specialist staff and other clinical positions dedicated to organ donation. This funding will provide staff to both private and public hospitals. These specialist staff will work with hospital teams in emergency departments and intensive care units. The staff will work to support and educate hospital teams to coordinate organ and tissue donation actively.

Providing funding to employ specialist staff is a strong element in ensuring that our government’s commitment provides real outcomes in this area. The government has also committed $17 million as part of this reform package to provide hospitals with new funding for costs associated with organ donations. Associated costs may include additional staffing and bed and infrastructure costs. The costs will obviously vary between hospitals, and it is vital that the government provide funding to reflect the increased costs associated with lifting organ donation rates.

There have been many times not just in this place but also in the media and the broader community where the need for lifting organ donation rates has been talked about. It has been the subject of public campaigns. But unfortunately very little of that talk, sometimes involving quite substantial amounts of money, has resulted in lifting our organ donation rates. By concentrating energies and efforts in the public and private hospital system, it is hoped that organ donation rates in this country will increase.

Over the next four years, the package that the government is delivering will include $13.4 million to continue national public awareness and education—an important component. This funding will increase the level of knowledge given to Australian families by providing them with clear, factual information about organ and tissue donation. This should go a long way towards alleviating some of the anxiety or the ignorance that people may have about organ and tissue donation. This funding will better help individuals and their families to understand the difference a person can make if they choose to be an organ donor.

I would like to take a moment to reflect on the families of those wonderful people who have identified themselves as donors and whose deaths have meant life for others. We very recently saw the case of an Australian who died overseas, a young boy tragically killed in Greece, whose family took the decision to donate his organs to someone there who was in desperate need. That was an enormous credit to that family who had lost their son in very, very tragic circumstances.

As a government we recognise that, although around 90 per cent of Australians support organ donation, many are not registered as an organ donor and their families are not aware of their position, as was the case in my own family. Ninety per cent of people support organ donation, yet, last year alone, Australians met only a third of the demand for organ transplants.

Our government aims to further meet the demand for life-saving and life-transforming transplants by working with this high level of community support. I do understand that some choices to not donate organs are due to religious or cultural reasons, and we should respect those, but the great majority are not. This bill does not change how Australians give consent or objection to organ donation. All Australians have the right to object to becoming an organ or tissue donor. Instead, this bill will provide the appropriate resources to ensure that every Australian knows the benefits of organ donation, forms a considered opinion about organ donation and is able to easily access and consent to being on the donor register.

It really makes you think about what the impediments are and how they can be overcome. Funding for public awareness and education will help combat these problems. It also makes you think about the thousands of people who are waiting for an organ and what it would mean not only to them but to their loved ones were they able to get those organs. Some time ago I visited the dialysis unit at my local hospital. It is a really telling experience to see people of all ages, but particularly young people, whose entire lives revolve around their need to be close to a dialysis machine, and what a difference it would make to them and their families were they able to receive an organ donation.

When someone loses a loved one it is incredibly traumatic and it is a terrible experience, particularly if that loved one has lost their life in an accident or otherwise unexpectedly. The grief can be numbing and make ordinary decisions very difficult. When it comes to making profound decisions, it can seem almost impossible. Whilst organ donation may provide some relief for families in knowing that their loved one’s death has not completely been in vain, and may have assisted any number of people to perhaps prolong their own lives, the decision has to be made right at that very moment. It is not one that can be delayed. Many families are in extreme distress, grief and trauma and it is a very difficult decision for them to make.

The funding provided in this package will provide deceased donor families with support that is responsive to the individual needs of each family. That is a very important part of this package. The funding will provide best practice bereavement and family support resources. It is not only imperative that these potential donor families are provided with ongoing support; it is the most humane thing to do in these circumstances. I commend the allocation of $1.9 million to provide support for families of deceased donors.

The introduction of this bill is an example of how the Rudd government listened to the ideas of our nation’s brightest during the 2020 Summit. The Rudd government is determined to tackle this head-on. We are committed to reforming our nation’s health system by addressing critical problem areas. I am pleased that the opposition is showing such strong support for this bill. The bill and subsequently our $151.1 million reform package goes beyond party politics. It is an initiative that all members of the House are supporting. It is an initiative that we, as federal members, should publicise in our electorates across the nation. Our society is ageing, and we can no longer ignore the reality that we need as many people as possible to consider organ and tissue donation.

The bill is about improving the health of Australians. The bill is about improving the quality of life of Australians. The bill is about providing the opportunity for Australians to make the ultimate sacrifice—that of donating their organs and tissues when they die. Many of us do not wish to contemplate death; however, it is a reality of our lives. Organ donation rates across Australia absolutely need to be lifted. Even after death, many of us have the opportunity to provide better health or even life to our fellow Australians. There are too many people who are waiting for a second chance at life and too many people who are being buried without having known the options of being able to provide a second chance at life.

The gift of organ donation is something that will live on long past our own deaths. I hope this debate will reignite discussion between individuals and their families, and I have no doubt that most families in my electorate of Ballarat will get behind this initiative. I am proud to be part of a government that is delivering such a worthwhile package. I commend the bill to the House.

Kerry Rea (Bonner, Australian Labor Party) Share this | Link to this | Hansard source

I too rise to discuss the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. I know that there have been many people on both sides of the House who have contributed to the debate on this legislation and many stories have been told. Whilst possibly most of what I will say in my speech has already been said before, I wanted to very clearly add my voice to support this particular bill because it does have such significance for our Australian community.

I should declare that I have been an organ donor since I was 17, when I first got my drivers licence. I guess the getting of the licence was a much more significant event for me, but I automatically, without even thinking, ticked the box to agree to be an organ donor. It was only in subsequent years, as I had many discussions with other people, that I realised just how sensitive an issue this is and how important it is that we as leaders of the community allay some of the fears and concerns out there so that we can encourage many more Australians to agree to be organ donors. I think the most significant essence of this bill is that it will encourage and enable a much greater capacity both for people to donate and for people to benefit from those donations.

It is quite clear that we always embrace and applaud medical science in its innovation, advances in technology, discoveries of new ways of relieving suffering and even, in some cases, postponing the inevitable which is coming to all of us—that, unfortunately, is our death. What is important about this bill is that these laws embrace advances in medical technology and bring us as a nation up to speed with those advances, enabling the whole country to benefit in a much more meaningful way. This bill will put Australia on the world stage as a leader in organ and tissue donation and transplantation, and I think that is a wonderful thing for all of us. It is clear that, whilst many discussions are occurring, whilst many people are taking up these options and whilst medical science is advancing, there is still a way to go. The deceased donor rate over the last 10 years has stagnated at around 200 per annum despite the incredible population growth that we have seen in this country at the same time. Sadly, there are over 1,800 Australians on the organ transplant list at any given time, so it is very important that this bill pass through the House so that this tremendous $151.1 million four-year package can become law and start to be used for this very important cause.

The $151.1 million includes an extra $136.4 million of new funding over four years. It is designed to create a national authority that will oversee the implementation of the details in this bill, oversee and support a national network of clinical specialists, oversee a national network of organ procurement organisations, manage and monitor national professional education, manage and monitor community awareness and education, introduce and manage a world-class national data and reporting system, administer funds to non-government organisations to provide essential services such as clinical analysis, and more.

As I have already said, there is provision in this bill—$64 million, in fact—for specialist hospital staff and systems dedicated to organ donation. This particular aspect of the bill is very important. Not only does it acknowledge—along with the $17 million of new hospital funding that is also included—that we cannot simply expect our current health system to pick up the cost and expenditure associated with this new legislation, but also it brings confidence to the Australian community. They can now be comforted by the fact that there are specialist medical doctors, specialist staff and dedicated units within private and public hospitals that will specifically be devoted to organ and tissue donation and transplantation so that donors and their families are cared for in a sensitive and appropriate way but, more importantly, so that recipients are given full medical attention and specialised care to ensure that they are nursed back to health and enjoy a much better quality of life.

It is also important that we acknowledge the $13.4 million in this legislation for the community awareness and education campaign. All the speakers on this bill have acknowledged that, while we have the medical expertise and technology, while we have the extra funding for the services in our hospitals and in allied health care, it is absolutely critical that we also bring the community along with us and encourage Australians to discuss with their families and friends the importance of organ donation and in fact to register as donors. Out of all the elements of this legislation, it is the most important. We need more people willing to donate their organs in what we would hope would be a very few tragic circumstances but, unfortunately, as the previous members said, is in reality many. An education and awareness campaign is important but not just for encouraging people to donate. As I said before, it is also about instilling confidence that, in tragic circumstances, if they donate their loved one’s organs, the grieving family will be cared for in an appropriate and sensitive manner.

It is also important to take the time, as everyone else has, to talk about personal stories. Although $151 million sounds wonderful, and although we have a national authority with all of its financial, administrative and medical expertise and we have an expert advisory committee supporting that authority, the personal stories bring it all home—stories of people who have benefited already in this country from organ donation. As a result of this debate in the public arena, I was contacted by a woman in my electorate. She wishes to remain nameless and I respect her privacy but at the same time I am happy to put her story forward as part of this debate. She is a 45-year-old mother and wife of one child who required a double lung transplant. As a 45-year-old wife and mother of three myself, I find the stresses and strains of life hard enough sometimes without even contemplating the incredible suffering and pain that that particular woman would have been going through and the emotional distress she would have been feeling for her family if she was unable to receive a donation, while struggling to deal with what was obviously a very serious illness with a prognosis that was not all that good. She was able to receive a transplant and is now living a much happier and healthier life. She wished me to pass on her story because, as she said, anything that enables other people to benefit in the way she did is important for many more families like hers.  I wish to put that personal story on record—just one story out of the many we have heard in this debate.

In conclusion, I thank the Prime Minister for this initiative. I think it is the first piece of legislation that he has had the opportunity to introduce into the parliament since being elected as Prime Minister. I think that says it all when it comes to his personal and very deep and passionate commitment to this issue and his encouragement of everyone to take up this matter, to discuss it with their families and hopefully to register as donors.

I would also like to pass on my congratulations to Senator Jan McLucas, who I know, both in her position as shadow minister and now as the Parliamentary Secretary to the Minister for Health and Ageing, has worked tirelessly to develop this policy and to see it all the way through to being legislation put before the House. We need to commend her for her efforts in negotiations and discussions and for finding a path through what is a very sensitive issue in a way that we all know will result in much greater benefits for our country.

I would also like to congratulate the opposition. It is wonderful to be standing in this place to debate something that is unanimously supported. Of course, anything that will save the lives of Australians is something that transcends bipartisan politics and something that we can all feel very good about and very pleased to support, both as individuals and as leaders of this community. I commend the bill to the House.

Darren Cheeseman (Corangamite, Australian Labor Party) Share this | Link to this | Hansard source

The Australian Organ and Tissue Donation and Transplantation Authority Bill 2008 focuses on key elements of the Rudd Labor government’s health policy. This policy is a commitment to the Australian people that health resources are used efficiently and effectively and that priorities are set on the basis of the needs of patients. Applying these commitments has the direct effect of achieving the best health outcomes.

This bill is about boosting the number of lifesaving organ transplants and improving and providing quality of life for Australians currently waiting for organ or tissue transplants. In Australia there is widespread acceptance and support for these procedures, which provide hope for Australians who are currently on waiting lists for organ and tissue transplants. The Australian public support the idea of organ donation, with nearly six million Australians registered on the Australian Organ Donor Register. Included on the register are an additional one million registrations since 2002. This represents 37 per cent of the eligible population. Surveys show that over 90 per cent of Australians overall support organ donation. On paper, this groundswell of support is phenomenal.

In a climate of such support for organ transplants, it is easy to believe that the current system is an outstanding success. However, according to data on organ donation in Australia maintained by the Australia and New Zealand Organ Donation Registry, at any one time over the past few years, approximately 1,800 Australians have been on transplant waiting lists. This beggars belief. Even though an additional one million registrations have been accepted since 2002, the rate of organ transplants in Australia has been stagnant.

Let’s make no bones about this. This is an opportunity that has gone begging for some considerable time, and I believe that we should be looking to establish world’s best practice reform in this area. I do not wish to imply that the current systems have failed; we do have an excellent transplant record. The current and previous systems have provided for over 30,000 Australians who have gone on to have a better quality of life thanks to organ and tissue transplants. Our ability to facilitate transplants is second to none, and the technology and techniques we use are some of the most advanced in the world.

However, without detracting from the excellent work that has preceded the need for this new legislation, the fact of the matter is that there are six million potential donors that we should really have included on this list, with only 200 donations happening per annum at the moment. Despite the best efforts of government agencies, the organ and tissues sector and community and consumer groups, the current systems are not providing increased numbers of lifesaving transplants concurrent with increases of registrations for donorship.

We need a national body to coordinate efforts under a standard set of protocols to maximise the efficiency of the governing bodies and to build on them, expanding the ability to facilitate organ and tissue transplants across the whole nation. In observing the models of the world’s top-performing nations in organ donor rates, a common theme has delivered lasting improvements. Experiences of other countries point to a central coordinating agency that is dedicated to leading and driving change.

This is another example, I think, of this government getting on with the business of governing. Australia today has the opportunity to set a whole new standard in the delivery of organ and tissue transplantation. The establishment of the Australian Organ and Tissue Donation and Transplantation Authority is an essential part of the government’s strategy to facilitate coordination and provision of life-saving transplants. The new reform package will provide national leadership to the organ and tissue sector. The measures contained in the government’s reform package will drive, implement and monitor national reform initiatives and programs. The new reform package will include funding for more hospital staff to be dedicated to organ donation, including funding for hospitals to cover associated costs. The new reform package will provide funding for increased education and awareness campaigns and funding to support the families of deceased donors. I think this is very important work.

Through the national professional awareness component in this bill, the Australasian Donor Awareness Program will be extended to drive cultural and organisational change in public and private hospitals and the communities they reside in. The new reform package is significant because all Australian governments have signed up to the reform package through the Council of Australian Governments. It is also very pleasing that all parties within this place, I believe, will support these very worthy reforms.

To this effect, there has been a similar response from stakeholders in the areas that will be affected by this legislation. This support is mirrored by the organ and tissue donor sectors, and community and consumer groups, who agree that a nationally consistent and coordinated approach to organ donation is critical. The solid foundation that underwrites this support is that the Australian government is committed to providing $151 million for this fresh, new approach to achieve these goals.

The goodwill that is extended by the wider Australian community to organ and tissue transplants needs to be better focused and coordinated. There is an opportunity here to provide a real increase in the rate of organ and tissue transplants. In meeting the challenges of implementing an Australia-wide system of organ transplantation, the best system in the world is only as good as its facilitators. The fact of the matter is that we can improve efficiency through these measures. We can improve public knowledge through these measures. We can streamline the currently fragmented system that has evolved over the years and provide a nationally consistent process and system to facilitate more organ and tissue transplants and provide a better quality of life for all Australians on waiting lists. I commend this bill to the House.

Annette Ellis (Canberra, Australian Labor Party) Share this | Link to this | Hansard source

What a pleasure it is to rise this evening in this place to talk about the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. It is not that long ago—in fact, it was in February this year—that I was given the opportunity to speak in the parliament on a private member’s motion on organ donation. I want to reflect on that because at the time I told a story about two people in my electorate whom I knew personally. Very sadly, one had recently passed away. That was the late Justice Terry Connolly, who was a very dear friend of mine. He died very suddenly at the age of 49. His wife, Helen, and her two daughters, Lara and Maddy, consented to having Terry’s corneas donated. The family felt very strongly about organ donation and, as I believe it does in a lot of cases like this, it assisted them in dealing with their grief. That was a generous thing on the part of that family.

At the same time, I spoke about young Cordelia, whom many of us have heard of since. At the time I made reference to her, in February, she was a tiny tot 10 months old, desperately in need of a liver transplant. She had a very rare liver condition. The family had done all they could at that point to publicise the fact that they needed a liver donation, understanding of course that some other child or person had to pass away for that to happen. Happily, we all now know that a liver did become available to Cordelia, and the last reports we have had suggest that she is doing extremely well.

The other story that I want to refer to—without revealing names because I prefer not to do that—is that of a family in my electorate known to very dear friends of mine. They were recently devastated by the suicide of their 14-year-old son. It happened only in the last four to six weeks. That family was struck down by this tragedy, but if there is a positive and a negative side to an agenda then the positive side of that agenda was that five people were beneficiaries of organ donation from that young man, through his family. Again, it gave them some means by which they could deal with their grief, and the family obviously had a very positive attitude to organ donation.

I understand that around June 2007 there were just on 47½ thousand ACT residents on the Australian Organ Donor Register—that is, approximately 18 per cent of the eligible ACT population had formally registered at that point. As local members, we all put out community newsletters. Earlier this year, in fact around the time of Organ Donor Awareness Week, I took the step of including in my community newsletter the official form for registering for organ donation, provided by the HIC. While we will never know, I would like to think that there was some positive outcome to that.

The reason we are here tonight is to talk about the bill the government has brought forward, which we all hope—and I think we know—is going to make an enormous difference to the very tough road that some people have to go down in looking at the question of organ donation. I am really proud to be part of a government that has taken such a wonderful lead, and I thank the Prime Minister and commend him for that. I do not think anybody in this building could do otherwise than commend the action to bring a national approach to the question of organ and tissue donation in this country.

As other speakers have said, just over $150 million will be put towards this package. Money is easy to talk about in terms of figures; what we really need to talk about is what it is going to do. It is going to make a huge difference to the way in which the question of organ donation is approached in this country, be it for the family of someone recently deceased or be it in the staffing and resources that are available in hospitals and elsewhere where these decisions are made. The reason for this legislation is to bring things together in a national way to ensure that everything that can enhance and smooth over this difficult process is put in place.

Mr Deputy Speaker Scott, I do not whether you were home early enough on Monday night to see the Andrew Denton show. I happened to get home and turn my TV on towards the end of it. On that program Denton makes a habit of having show and tell, I think he calls it, at the end of the program. There was this enthusiastic young woman sitting next to him whom he interviewed. Her story was that she contracted diabetes at the age of 12 and here she was, I think by now in her late 30s, telling her story of how as a result of the diabetes she had developed very, very serious kidney disease.

Earlier this year she was facing the possibility of having to go onto permanent dialysis and maybe not having a very good health outcome overall anyway. She had been on the organ donation waiting list for years. She told the story of how one Saturday morning at half past six there was a phone call to say that there was action at the hospital. She was a successful case of kidney and pancreatic donation, which means not only did it save her from the kidney disease but it took away the diabetes as well. For the first time since she was 12 she no longer had to deal with diabetes, sugar levels and injections. Again, that is another wonderful story. The problem for our country is that, as marvellous as those stories have been, there have not been enough of them. We have not had enough opportunity to push, argue, cajole and convince people that this is really the right way to go—to do organ donation.

The establishment of the national authority to run the new national organ and tissue donation process is to be applauded by everyone. It is a terrific initiative and something that I know is going to benefit so many people. When I think about the individuals I have referred to very briefly this evening and while I thank those who made the lives of those people all the better—and we pay regard to the grief behind those donations—this is one way that we can actually pull it together nationally. We can have a fully responsible process for donation and encourage far more involvement from the general community at large in listing themselves for organ donation. Not only that but, if and when the question arises, the process of organ and tissue donation can go ahead in the most seamless and the most convenient way for everybody concerned. It is a pleasure for me to endorse this bill heartily to the House, and I look forward to its passage, knowing that on its passage we will see this whole process begin on 1 January 2009.

Craig Thomson (Dobell, Australian Labor Party) Share this | Link to this | Hansard source

Over the last 10 years, organ donation rates in Australia have fluctuated at around 200 donors per year. To get straight to the point, Australia needs more donors. Last month, a young Australian man, 20-year-old Doujon Zammit, tragically succumbed to injuries sustained while holidaying in Greece. Doujon’s wish was for his organs to be donated, and he has provided the gift of life to four individuals who were in urgent need of organ transplants. The Zammit family, together with Transplant Australia, have established the Doujon Zammit-Transplant Australia Gift Fund to recognise Doujon’s donations and to honour his legacy. The fund will be used to raise awareness in the community of the need for organ and tissue donations and transplants.

Doujon’s father, Oliver, said his son had made it clear to his family that his wish was to be an organ donor and, although it was a difficult and emotional decision, they wanted to respect his wishes. Not only did they make a commendable decision to respect Doujon’s wishes and see through the donations but the Zammits have since also urged all families to discuss the issues concerning organ donation.

On the one hand, this country is internationally recognised for a strong record of successful organ transplantations—more than 30,000 Australians have received transplants in the last 60 years. But, on the other hand, we also have one of the world’s lowest rates of organ donations. Unfortunately, the demand far outweighs the supply, and the consequence is that substantial numbers of people die while waiting for suitable organs to become available. This is something we need to change.

As the former National Secretary of the Health Services Union, representing hospital and health workers throughout the country, I was able to see firsthand the lack of quality of life that many of those waiting for organ donations had to endure. For people with serious or life-threatening illnesses, organ or tissue transplantation may mean a second chance at life. It also means a much better quality of life. Improved survival rates now mean that most recipients of organs or tissues can look forward to a better quality of life. Anyone can choose to donate organs and tissues—there is no age limit on the donation of some organs and tissues. What is important is that, as families, we sit down and make sure, as the Zammits did, that they are fully aware of the wishes of the family member that their organs be donated.

While a person’s age and medical history will be considered in relation to their suitability for donation, he or she should not assume they are too old or not healthy enough. Organ donation can involve kidneys, heart, lungs, liver and pancreas, while tissue donation includes heart valves, bone tissue, skin tissue, corneas and bone marrow. In most cases, organ and tissue donation occurs after brain death. Brain death occurs when the brain stops functioning with no possibility of recovery. Organ donation is only considered after several tests are carried out by two appropriately qualified senior doctors to establish whether brain death has occurred. The way in which a person dies will generally determine what they are able to donate. In most cases organs such as the heart, lungs, liver, pancreas and kidneys can only be donated if a person has died in an intensive care unit under special circumstances. Less than one per cent of all people who die in hospital each year die this way. That ratio helps explain why the rate of suitable organ availability is so low.

But that is not the only explanation. The other explanation is that it is something that we do not talk about with our families before we are in these circumstances. When our families are in that pressured situation of having to decide what to do, to make those sorts of decisions, unless they have been clearly told—unless that discussion has actually happened with their family member, unless they know that when their loved one passes away in those circumstances their organs should be donated—the whole situation around a tragic death usually means that it is too difficult a decision to take. That is why it is so important that we make sure that we let our families know if we are prepared to donate our organs.

In some cases organ donation may be possible after a person’s heart has stopped beating, but this is extremely rare, and we get very few donations in relation to that particular situation. A greater number of people have the opportunity to donate tissue for transplantation, such as eye tissue, heart valves, bone tissue and skin tissue. This is because tissue donation does not require the same special circumstances as organs usually do for transplantation to be successful.

The Australian Organ and Tissue Donation and Transplantation Authority Bill 2008 being debated today will allow the establishment of the Australian Organ and Tissue Donation and Transplantation Authority. This organisation will provide national leadership to the organ and tissue sector to drive, implement and monitor national reform initiatives and programs aimed at increasing Australians’ access to life-saving and -transforming transplants. As we have heard in this debate, a higher rate of access to, and availability of, transplants is vital if we are to increase the rate at which recipients can truly have a second chance at life.

The new authority will be managed by a chief executive officer with direct accountability to the Commonwealth Minister for Health and Ageing. The CEO will be advised by the Australian Organ and Tissue Donation and Transplantation Advisory Council. It will comprise a chair and up to 15 members. Members will have expertise in a wide range of areas related to organ and tissue donation and transplantation, and also areas such as business and management, to assist the CEO to run the authority efficiently and effectively.

The authority will spearhead the government’s comprehensive, best practice reform package aimed at achieving a significant and lasting increase in the number of transplants for Australians. The functions of the CEO will include formulating, in writing, policies and protocols relating to organ or tissue donation and transplantation matters and declaring, in writing, standards and codes of practice relating to organ or tissue donation and transplantation matters. The CEO will also collect, analyse, interpret and disseminate information relating to organ and tissue donation and transplantation matters and support, encourage, conduct and evaluate training programs that are directed towards improving the skills and knowledge of people involved in organ or tissue donation and transplantation services. The CEO will also support, encourage, conduct and evaluate educational, promotional and community awareness programs relevant to organ or tissue donation and transplantation matters and conduct and evaluate research about organ or tissue donation and transplantation matters.

Some of the main objects of the new authority are to promote a coordinated and consistent approach to organ or tissue donation and transplantation matters, to improve access to organ or tissue donation and transplantation services, to improve the identification of potential organ or tissue donors, to minimise waiting times for potential organ and tissue recipients and to improve the management of waiting lists for potential organ or tissue recipients.

The large gap between demand and supply of organs and tissues has enormous personal costs for more than 1,800 Australians currently on organ transplant waiting lists at any one time, as well as significant economic costs for the country. As Australia’s population ages and more Australians are affected by lifestyle diseases such as obesity and diabetes, the demand for transplants will grow. In Australia we are now only second to Japan in terms of life expectancy, with a life expectancy of around 81 years. While we might be living longer, our bodies are not necessarily living younger as we age. The problems with age and with an ageing population mean that the issue of transplants will continue to grow and to be a problem in Australia if we are unable to address the big shortage in the supply of organs and tissues for transplantation in this country.

To address this issue, on 2 July this year the Prime Minister announced a national reform package to establish Australia as a world leader in best practice organ donation for transplantation and to achieve a significant and lasting increase in the number of transplants for Australians. These evidence based reforms have been designed using international and national best practice models which have a proven track record of maximising donation rates. The reform package was endorsed by the Council of Australian Governments on 3 July 2008. So this program does involve the states and has been endorsed by the state governments. Through that cooperation, it is a program perfectly suited to making sure that Australians can lift the rate of organ donation from the current rate of around 200 a year.

Think about the numbers that we have now: 200 donors a year on average over the last 10 years, yet at any one time 1,800 Australians are on the waiting lists. That is a deficit of more than 1,600. Unfortunately, many of those on the lists are not going to survive until organs become available. And those that are lucky enough to receive transplants will have had to wait for extended periods of time, fearing that, any day, their life may end because they cannot get access to organs. At the same time, their quality of life is dramatically affected because the organs for which they need a transplant are in such a poor state that they cannot function as they normally would if they were in good health. So this problem affects both the quality of life and the chance of life. It is absolutely important that we support this bill and encourage as many Australians as possible to make sure they become donors.

Even with this bill, it will be an enormous task to raise the number of organ donations per year from 200 to 1,800. This is a task that will not happen overnight, and it is one that needs a plan as to how we can make the improvement. It needs a plan that involves the state governments in terms of their role in our public health system. It needs a plan that is integrated. It needs a plan that sets out the way in which this can happen. It needs a plan that uses evidence based methods to make sure that if people find themselves in tragic circumstances they know that they have spoken with their family member and are prepared to honour that family member’s wishes. That will make sure that the donation of those organs takes place and that the lives that can be saved by such a donation are saved and that the quality of life that can be given to many Australians by such a donation is given to them.

Over the next four years, there will be $151.1 million spent on creating a nationally consistent, coordinated system of organ and tissue donation. The key features of that expenditure include $67 million over four years to fund dedicated organ donation specialist doctors and other staff in public and private hospitals, as well as $17 million over four years in new funding for hospitals to meet the additional staffing, bed and infrastructure costs associated with organ donation. That particular item is very important. All too often in health planning we lay some bricks and mortar and put particular programs in place but then do not make sure we have the staff so that programs can operate and function properly. It is crucial in this very important area that this plan makes sure that there will be enough staff for it to take place.

There will be $13.4 million over four years to continue national public awareness promotion and education. I have said a number of times during this speech that one of the key things is public awareness. As members of parliament we are in a unique position to influence and promote this very important issue. There are other significant measures in this bill, including enhanced professional education programs, consistent clinical protocols, clinical trigger checklists to help hospital staff appropriately identify potential donors and data collection for organ transplants in hospitals.

The new approach will be spearheaded by a national authority to be established by 1 January 2009, with funding of $46 million allocated to establish a coordinated, consistent national approach, including a network of organ and tissue donation agencies. Of this, $24.4 million over four years will fund the new authority’s operation and infrastructure. The authority is to drive, coordinate and be accountable for national organ and tissue donations and transplantation initiatives and will provide world-leading access to transplants and transplant outcomes.

This is a bill that all members of parliament will support. All members of parliament can go out and say: ‘We’re proud that we were part of passing this legislation. We’re proud that we played a role in helping those 1,800 people who are on waiting lists waiting perilously for the availability of transplant organs.’

Organ donation is a very difficult issue for families who are grieving. It is important as a government that we make sure we put in place the best systems to allow families in those very trying and difficult situations to make the right decision—to make sure that the organs of their loved ones, if they have expressed the view that they want to donate them, end up where they can do the most good. That is the purpose of this bill, that is why we have had so many speakers come out and support this particular bill and that is why this bill should be supported by the House. I commend the bill to the House.

Debate (on motion by Mr Raguse) adjourned.