Kirsten Livermore (Capricornia, Australian Labor Party) Share this | Link to this | Hansard source

If you ask any member of this place why they got involved in politics and ran for parliament, they will tell you it was because they wanted to make a difference. The Australian Organ and Tissue Donation and Transplantation Authority Bill 2008, even more than most we debate, is really about making a difference. For those Australians anxiously and desperately waiting for transplants, organ donation is the difference between daily battles with pain and illness and good health. For many, it is the difference between life and death. If this bill succeeds in its aims, we will see the rate of organ donation in this country increase and, with it, the number of lives saved and transformed by that most generous of gifts—a donated organ.

Before I go any further I want to record here my thanks to all those families who have lost loved ones and, in the midst of their grief and pain, were able to offer hope to other families through the gift of organ donation. What a brave and selfless thing to do and what a wonderful legacy to create for their deceased husband, mother, son or daughter: knowing that they have given another human being—someone they may have never met—a second chance at life. Pope Benedict himself has declared that he is an organ donor and once stated that organ donation was an act of love.

The question of organ donation has come before the parliament in a number of forms in recent years. I make a point of participating in those debates at every opportunity. I always give my support to those motions as they come before the House because we need to do everything we can to keep organ donation on the agenda and take every chance to raise awareness and encourage people to register as donors.

We all know the statistics about organ donation in Australia. They have certainly been brought forward in the debate on this bill. Studies have shown that almost 95 per cent of Australians support organ donation but, on the other hand, only about 30 per cent of us are registered organ donors. Currently, there are just over one million registered organ donors. We have an enviable record of success when it comes to transplant procedures but too many Australians are denied the opportunity of a transplant because they do not survive the wait for a suitable organ. Today, there are 1,800 people on waiting lists around the country. Sadly, an estimated 100 people die each year while waiting for an organ transplant due to the shortage of organ and tissue donors.

Australians are generous people. We are known for our big hearts and our willingness to help others, so our low rate of organ donation compared to other countries—Spain and the US are often quoted as examples—is very out of place. It is clearly not a question of our character but of getting our policies and practices right. It starts with education and awareness. We must also reorient the relevant sections of our health system to make organ donation an integral part of training and procedures.

I am absolutely delighted that organ donation has been given such a high priority by the Prime Minister and the government. In saying that, I am not suggesting for a minute that it was not supported by the previous government—I know that lifting the rate of organ donation is something strongly supported by both sides of the parliament and that the previous government had a range of policies aimed at achieving that—but the work of this government in taking on the recommendations of the National Clinical Taskforce on Organ and Tissue Donation earlier this year has made organ donation a genuine priority, and this bill seeks to put those recommendations into effect immediately.

The bill does that by establishing the Australian Organ and Tissue Donation and Transplantation Authority. That was a key recommendation of the clinical task force. The authority will provide national leadership in organ and tissue donation and will drive, implement and monitor national reform initiatives and programs aimed at increasing Australia’s access to transplants. The authority will be spearheaded by a CEO who will report directly to the Minister for Health and Ageing. The CEO will be advised by the Australian Organ and Tissue Donation and Transplantation Advisory Council. That council will be made up of individuals with expertise in organ and tissue donation and transplantation, health consumer issues, management and public administration.

This bill contains measures that, over the next four years to 2011-2012, will cost $151 million. That includes about $136 million of new money put towards these initiatives. About $24 million of that has been allocated to setting up the authority. The other measures include $67 million to fund dedicated organ donation specialist doctors and other staff dedicated to organ and tissue donation in public and private hospitals around Australia.

The value of that measure in increasing the coordination of organ donation and having those donation specialists in hospitals should not be underestimated. Its value is illustrated by the findings of a study in Victoria that was reported a few years ago in the Medical Journal of Australia. That study looked at 17,000 deaths in Victoria over a period of time. It found that, of those 17,000 deaths, there were 280 potential organ donors. However, in 60 of those cases organ donation was not requested from relatives at the time of the potential donor’s death. So there were missed opportunities that were identified in that study. If that is multiplied across Australia, it really highlights the need for better coordination and specialisation in organ donation within our hospitals and our health system.

The funding that this bill brings forward also includes $17 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 transplantation and to build confidence in Australia’s donation for transplantation system; and $1.9 million to support the families of deceased donors. I know that all members would welcome that recognition of what donor families go through, not just dealing with the death of their loved ones but understanding what donation means, to support the families as they go through that very difficult time.

Other measures included in the bill are the creation of a national network of state and territory based organ and tissue donation agencies to facilitate the donation process. You would have to say that the low rates of donation in Australia are not through lack of trying or lack of goodwill, but there just has not been that coordination of all the various initiatives that are going on. We really need to have national leadership and national coordination so that we are all working at the level of best practice.

The measures also include an enhanced national training and education program for hospital and other staff involved in organ and tissue donation for transplantation and equitable, safe and transparent national transplantation processes to manage waiting lists and the allocation of donated organs. They also include support to create and maintain a national eye and tissue donation and transplantation network and other national initiatives, including living donation programs such as paired kidney exchange.

These measures are expected to establish Australia as a world leader in best practice organ donation for transplantation. The goal is to achieve a significant and lasting increase in the number of transplants in Australia. The reforms have been designed using international and national best practice models with a proven track record of maximising donation rates. The experience of several comparable countries demonstrates clearly that a coordinated and integrated national approach followed by sustained effort will, over time, see real improvements in organ donation and transplant rates. Again, my research over the years has shown that that is correct. Spain is clearly a good example of those practices.

This bill, and the measures included in it, has received widespread support. It has the endorsement of all states and territories through COAG, which is very important. Following the July meeting of COAG, a communique was released by all participants in that meeting which stated:

This package will aim to establish from 1 January 2009, a world-class comprehensive national system of organ and tissue donation, led by the Commonwealth and delivered in partnership with the States. These reforms will provide long-lasting and transformative benefits for the approximately 1,800 Australians in need of an organ transplant at any one time.

The 2020 Summit reinforced the need for a reinvigorated national approach to organ and tissue donation. This package builds upon international models of best practice in the clinical systems for maximising the number of organ and tissue donors, for promoting community awareness and for supporting donor families.

I think almost all my colleagues in the debate have urged Australians to register as donors—to register and then also to talk through that decision with their families. I saw a very good quote from the executive officer of Transplant Australia, Mark Cocks, in the Australian a couple of years ago. He talked about their experience and studies they have done that show that, if the potential donor has told their loved ones of their intent to be a donor, 80 per cent of the time the family will agree to the organ donation. But, if that person did not tell their family, the refusal rate was around 50 per cent. Our job as MPs is, of course, to register ourselves as organ donors and also to encourage our constituents to take that step and, importantly, to talk it through with their family.

I know all members support this bill’s passage through the House, with those 1,800 Australians on transplant waiting lists in our thoughts. This bill is for you, and we hope with all our hearts that it makes a difference to you and your families.

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

I congratulate the government on introducing this legislation. I know it has the support of both sides of parliament. I do not think there would be a member in this parliament who is not committed to seeing that we increase the number of organ and tissue donations that take place within Australia. We all understand the need for this to happen. The Australian Organ and Tissue Donation and Transplantation Authority Bill 2008 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 access to life-saving and transforming transplants.

One of the key ideas discussed for the future of Australia’s health and hospital system at the 2020 Summit was the need for a national donation scheme. I am pretty sure that most members of this parliament have already registered as donors, as the member for Capricornia suggested. But for too long organ donation rates in Australia have lagged behind other nations. For too long, Australians have been left desperately waiting, month after month. These are Australians, mums and dads, waiting for a transplant. Currently, there are 1,800 Australians on the waiting list 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 the demand.

The International Registry of Organ Donation and Transplant reports that in Australia in 2006 there were just 9.8 donors for every one million people. That is a really low level. Spain had 33.8 donors for every one million people, more than three times the rate in Australia. Spain is the leader in this field, but the US is also up there, with 26.9 donors for every one million people, more than 2½ times the rate in Australia.

In the decades ahead, we will have an older population and a population with a much higher incidence of chronic diseases such as type 2 diabetes. I see the member for Parkes is in the chamber. He is also on the Standing Committee on Health and Ageing, and we are currently doing an inquiry into obesity. We know the connection between obesity and type 2 diabetes and kidney disease. It is imperative that we get this register right, because the need will be there, unfortunately. People who have chronic diseases often go on to need transplants.

More than three-quarters of the people waiting for organ transplants are in need of kidneys. The cost for each person waiting on the kidney transplant list is $83,000 per annum, if they are receiving hospital based kidney dialysis. The cost of a kidney transplant is $65,000 per person for the first year and $11,000 for each year after that. So, on a pure dollars and cents basis, it is imperative that we look at increasing the number of people that can actually have those kidney transplants. How do we do that? We increase the number of people that have their name on the Australian Organ Donor Register.

I would like to share with the House a story. A friend of my son’s had a little boy, and this little boy developed a tumour on one of his kidneys. He had the kidney removed but, during the operation, his good kidney was damaged. So here we had a young boy who basically had no kidneys. He had to wait two years before he was able to access a donated kidney, simply because they had to be sure that the cancer had gone. After two years of waiting and extreme anxiety for his mum and dad, his father was found to be a compatible donor and he gave young Bryce one of his kidneys. Young Bryce is now a healthy young guy and is living a normal life. He would be nearly ready to go to school now, I think. If he had not had that transplant, if his father had not been compatible, young Bryce would have died. That is just one very human story of how important it is that transplants take place. I am sure most members in this parliament would be able to tell stories of constituents or family members that have needed a transplant. I will finish my contribution to this debate by talking about a constituent in my electorate who had a liver transplant.

Australians waiting for transplants require extensive, expensive and time-consuming treatment. In the case of young Bryce, he needed to have dialysis and full-time ongoing medical care. When we look at the nations that have enjoyed much success with organ donation rates, we learn one clear lesson, and that is that national leadership is needed to drive the change necessary to improve the rate of organ donation. That is what this legislation does. It sets up national leadership. It sets up a structure. It pulls the states on board. It is government working together to get the best outcome for all Australians. Who knows? Next time it could be someone that is close to you that needs a donation.

As I said, nations that lead the world in organ donation and transplant rates have a national coordination system. The bill that we are discussing today reflects international best practice. Organisations that have played such an important part in promoting awareness of organ donation and that have helped in the development of the government’s national plan are the Transplantation Society of Australia and New Zealand, the Cognate Committee on Organ and Tissue Donation and Transplantation, Transplant Australia, Gift of Life, Zaidee’s Rainbow Foundation and ShareLife.

I would like to share with the parliament the story of a constituent of mine, Keith Galdino, who had a liver transplant. I spoke to him a couple of years ago. I spoke about Keith in the House when there was a private member’s bill on organ donation, in September 2006. I often see Keith down at the Windale bowling club. He is a pretty mean bowler and he represented Australia at the World Transplant Games. When I asked Keith what organ donation meant to him, he told me it had given him new life. He received his liver in 1994, at a time when he was so close to dying. He had been told he had one week to live. He received a phone call at 7.40 on a Thursday night, the ambulance arrived shortly after, he was taken to Royal Prince Alfred Hospital in Sydney and he was on the operating table at 3 pm the next day. He had a 17½-hour operation and then spent six weeks at Prince Alfred. Then he went to Queen Mary’s Hospital for another six weeks and returned home after three months.

Keith’s story is one of success. He went on to represent Australia at the transplant games, and he is very active in his community and very active in the transplant society. I asked him what message he would like to give to parliament and the Australian people. His words were: ‘Don’t bury or burn your organs. Donate them.’ That is a really important message for all Australians. I think this legislation we are debating today is going to make it much more likely that people do not burn or bury their organs. It is about making people aware and making it easier for more Australians to be given the opportunity to live a long and fruitful life.

Justine Elliot (Richmond, Australian Labor Party, Minister for Ageing) Share this | Link to this | Hansard source

I am very pleased today to have the opportunity to sum up debate on the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. The Minister for Health and Ageing regrets that she is unable to be here herself to sum up on this very important debate due to prior public commitments.

As has been acknowledged during the debate, too many Australians have suffered or died while waiting for a life-saving transplant. Families have been devastated and the economic and social costs are growing. For too long Australia has lagged behind other countries in its organ donation rates despite widespread community support for organ donation. For too long the benefits of tissue transplantation and our need to do better in this area have taken a back seat. For too long there has been a lack of national leadership to address this problem. While this government is determined to emphasise health maintenance and disease prevention, it is inevitable that, as Australia’s population ages and more Australians are affected by lifestyle diseases such as obesity and diabetes, the demand for transplants will continue to grow.

Earlier this year at the Australia 2020 Summit, one of the key ideas put forward was the establishment of a national organ donation scheme. Building on this idea, the government have recognised that national leadership and a coordinated national system are required to significantly reduce our transplantation waiting lists. We have recognised that a significant injection of new funding is needed to harness the efforts and skills of our hospital staff and the sector and the strong community support for organ donation. The government have recognised that we need to take the proven practices of the world’s top-performing countries and apply them to Australia.

The bill before us is at the core of the government’s response. It establishes the Australian Organ and Tissue Donation and Transplantation Authority to build a new, best practice system. To realise the implementation of the government’s $151.1 million package of reforms, including $136.4 million in new funds, underpinning everything is a new national approach, spearheaded by the authority: nationally consistent processes and systems, in the local hospital; enhanced professional education; ongoing community awareness efforts that focus on the facts and encourage family discussion; sufficient resources in hospitals to maximise and measure the conversion of potential donors to actual transplants; a national approach to give the best support possible to the families of deceased donors; and national policies and protocols for consistent implementation throughout Australia. The new authority will work with states and territories, clinicians, consumers and the community sector to build this new system for Australia.

As noted when the bill was introduced, the rationale for the establishment of the authority, along with the various elements of the government’s reform package, is firmly grounded in best international and national practice. The experience of several compatible countries shows us that a coordinated and integrated approach followed by sustained effort is the only way to see real improvements in organ donation and transplantation rates. These lessons have informed this reform package and put us in the best possible position to achieve lasting, positive change for thousands of Australians and their families.

Also critical to lasting, positive change will be the ongoing support, focus and effort of all Australian governments and the organ and tissue donation and transplantation sector itself. To date, the Commonwealth has been delighted by the strong support of all governments and the sector, all of whom have recognised the significance of this reform package and the need to get on with the job of improving access to life-saving and transforming organ and tissue transplants.

I greatly appreciate the many heartfelt contributions of many members from both sides of the House to the debate on this bill. A number of speakers have contributed personal stories of how, in difficult circumstances, families have been extraordinarily generous in making the gift of organ and tissue donation. It has also been inspiring to learn of how many people’s lives have been transformed by this gift. In the light of the stories of these extraordinary families, it is important to highlight that the government’s reform package also includes $1.9 million for a national donor family support program. This will offer a coordinated, best practice approach to supporting the families of deceased donors, regardless of where they are located.

A division having been called in the House of Representatives—

This package will be underpinned by the principle that each family must be provided with respectful support which is responsive to the needs of that family, from the time when donation is being considered to when donation proceeds and thereafter. All families whose next of kin are identified as possible donors will be offered bereavement counselling, information and support at the time and ongoing contact and support, whether or not the potential donor proceeds to donation.

Before closing, I would like to thank all of those who have directly or indirectly been involved in the development of the reform package and this important legislation. Over the past year the Minister for Health and Ageing and the Parliamentary Secretary to the Minister for Health and Ageing, Senator McLucas, have been fortunate to meet with many people involved in organ and tissue donation and transplantation, including clinicians, transplant recipients, support and advocacy groups and individuals who have made the difficult decision to proceed with the donation of their loved ones’ tissues and organs. The insights offered by all these people have helped us to identify the best means by which to improve the system.

Through this bill, along with the integrated package of reforms underpinning it, and through the generosity of individuals and families who make the ultimate gift, Australia will become a leader in best practice organ donation for transplantation. We hope to achieve a significant and lasting increase in the number of life-saving and transforming transplants for Australians.

Finally, I would like to make an appeal to my fellow members of parliament and all Australians. Please discuss organ and tissue donation with your family because it is your family who will make the critical choices if ever the day arrives when it might be your organs that can save the lives of others. If you are not on the organ donation list, please think about it and get your name onto it. It is an extraordinary gift by an individual and their family, made in very tragic circumstances. It is something we will support nationally through this bill before us today. I commend the bill to the House.

Question agreed to.

Bill read a second time.

Ordered that the bill be reported to the House without amendment.