Gai Brodtmann (Canberra, Australian Labor Party) Share this | Link to this | Hansard source

Until recently, Australia’s organ donation rate languished near the bottom of the Western world’s league tables. Our annual rate stagnated at about 11 donors per million of population, or somewhere between 200 and 250 donors. By way of contrast, Spain has a donation rate of about 34 donors per million and is a world leader, the United States is at 21 donors per million, and the UK is at 15 donors per million. Our record in Australia was in spite of Australia being a world leader in transplantation surgery, with a record of stunning surgical outcomes and success. But, thanks to the reforms introduced by the Labor government in 2008, our performance in this area is starting to improve. This calendar year we have seen Australia’s first major improvement in organ donor rates in over 20 years, an improvement clearly linked to our reforms and our significant financial commitment to improving the lives of Australians.

In 2008 the Labor government announced a reform package worth more than $150 million to improve staff and resources for hospitals across the country. Prior, there was significant variation in organ donation management between jurisdictions. As a result of the reforms introduced by Labor, the states and territories have come together to provide a nationally consistent program.

There are more than 1,700 people on Australia’s waiting lists for transplants. Many more cannot get onto that list because they are either too sick or are unlikely to receive the transplant before death. The effect on them and their families is devastating and is the reason I rise on this issue today. Thanks to the Labor government, we have started on the long road to improvement. We now need to grow and sustain that improvement.

As a volunteer with Gift of Life I met many donor families, recipients and people awaiting a transplant who all want to improve Australia’s low organ donor rates. From my conversations with those people I also learned that you are more likely to need a transplant than to be an organ donor.

Let me tell you about Marjorie Taylor, who is the mother of the ACT’s first organ donor. Her daughter, Annette, died more than 30 years ago, in the very early days of this process. Fortunately, she had discussed organ donation with her mum before she died. In those days, it was a struggle to be an organ donor because systems just were not in place. It was thanks to the tenacity that is unique to a mother that meant that Annette’s wishes were respected and the lives of other Australians were saved. Thankfully, the struggle that Marjorie faced is now a distant memory. Systems are now in place and the focus is on ensuring that the wishes of our families are fulfilled.

The Labor government has introduced a range of reforms across every level of the health sector and also in the area of public awareness. It has established the Australian Organ and Tissue Authority to oversee the reform program. Its work is supported by a council of clinicians and community leaders. The DonateLife Network established by the authority in each jurisdiction is implementing the reform agenda. The national medical director, together with the state and territory medical directors, is leading the change management required at every level of the health system for sustained improvements in organ donation.

The reform program introduced through these multilevels of government and the health system is focused on two areas. The first is improving the capability and capacity of the health system to support an increase in organ and tissue donation—our greatest wish. Additional staff have now been appointed in intensive care units and emergency departments to ensure that all potential organ donors are identified. Most importantly, staff are also being trained to have the confidence to ask families for permission—which is very difficult to do—for their deceased loved ones to donate their organs. Just having gone through this process, with my mother-in-law recently dying, it is very difficult at that highly emotional time to seek permission, and these people are being trained to have the confidence to do that. In addition, new protocols have been developed to ensure that Australia is at the leading edge of organ retrieval. So, now, donation after cardiac death is a process across jurisdictions.

The second key reform relates to one of my passions and my former profession, which is increasing community awareness. We know that around 90 per cent of Australians support organ donation. However, at the time of request, less than 60 per cent accept that invitation. By contrast, in Spain there is an acceptance rate of about 80 per cent. The recent ‘OK’ campaign aimed to alert Australians to the importance of organ donation. That campaign focused on discovering the facts about organ donation, deciding what to do and discussing the decision with loved ones. This last step is the most critical because organ and tissue donation only occurs with the agreement of the next of kin. Advertising was run through the electronic, social and print media and the results speak for themselves, although I believe that further campaigns will be needed to sustain improvements in the rate of organ donation.

At the end of October this year, Australia had already exceeded the total number of organ donations achieved in 2009. This is a great outcome and suggests that we may reach 300 multi-organ donors by the end of the year. By ‘multi-organ donors’ I mean solid organs such as the heart, lungs, kidneys and liver. Tissue donation is just as important and includes corneas, heart valves and skin. One of the success stories in corneal transplantation is Felix Blumer, a resident of the ACT. Felix was about 14 when he started to go blind, which was overwhelming for both him and his family. He managed to receive a corneal graft and has now finished school and working hard for a living. The generosity of 258 organ donor families this year has resulted in 784 life-saving transplants, which equates to nearly 14 donors per million population. Record donations were achieved in May and October. In the ACT alone, we have already had nine multi-organ donors, equalling our best year. It is also heartening to see improvements in other jurisdictions that have traditionally not done so well in this area. We have seen improvements in New South Wales, Tasmania and the Northern Territory. These results mimic what has been happening in the UK and Spain where, once reform was introduced, organ donation rates went up, so we are following that trend.

As someone who has worked in the volunteer area of this sector, I want to pay tribute to all the people who support organ donation. Many individuals and groups give their time and freely speak at community, academic and corporate events. They tell the story of what it is like to commit to organ donation, what it is like to be waiting for a transplant and what it is like to give organs to other families when someone dies. One of those groups includes Gift of Life, which until very recently was led by the formidable Anne Cahill Lambert, who is here today and is herself awaiting a lung transplant. I also welcome David O’Leary, who is also in Gift of Life. Gift of Life has organised national and local events to raise awareness and to encourage people to discover, decide and discuss.

Another group is Transplant Australia, which recently hosted the Transplant Games in Canberra. The games had recipients and their close supporters coming from all over Australia to celebrate the gradual improvements in the sector. I also want to acknowledge the Organ Donation and Transplant Foundation of Western Australia who are also working tirelessly to support organ donation. I would also like to acknowledge the work of Robyn Hookes and the David Hookes Foundation who have not only garnered support for organ donation and improved awareness about it but also garnered support from the cricketing community. We could not have made these improvements without the contribution of community partners. We also would not have been able to do it without the clinical leadership of the national medical director and the state and territory medical directors. The input of community leaders from the council through to the foot soldiers on the ground is valued and is playing a significant role in realising attitudinal change and raising awareness in the community.

Last Friday marked the 10th anniversary of the Australian Organ Donor Register, auspiced by Medicare. Over 5.7 million Australians have recorded their intentions on the register. It is important that every Australian on the register confirms their intentions in discussions with their loved ones so that they can be respected at the time of death. We know there is more work to do for Australia to be a world leader in organ and tissue donation rates. The Labor government’s reforms have underpinned the improvements of recent years, but further work is needed to enable all jurisdictions to develop and demonstrate world’s best practice. We need all of the brightest brains working on this: clinicians, the community and governments. We have arguably seen the best improvements in those jurisdictions when the community is embedded as partners with clinicians.

I want to tell you about a family in my electorate—Kit Crooke and Fiona West—whose three-year-old boy, Felix, is incredibly ill. He has not yet been listed for a liver transplant but he will need one soon. I would like to look that family in the eye very soon and tell them that he will get his transplant when he needs it. We do not want anyone, let alone a three-year old, lingering at death’s door with uncertainty while we hunt for a donor liver. I urge all members to consider what is happening in their own electorates on organ and tissue donation and to raise awareness. I personally record my appreciation to the clinicians and communities involved in supporting the steady improvement. I am proud of what we have achieved to date, but there is still more work to do. I would really like to be in the position where I can look Kit and Fiona in the eye and tell them that Felix is going to be okay. I encourage everyone to discuss this issue today. (Time expired)

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

I commend the member for Canberra for her motion and acknowledge the guests in the gallery.

Bob Baldwin (Paterson, Liberal Party, Shadow Minister for Tourism) Share this | Link to this | Hansard source

I would like to start by thanking the member for Canberra for drawing the parliament’s attention to organ donation. It is an issue very close to my own heart. Just three weeks ago I wrote a column for one of my local newspapers urging people to become donors, so I value the opportunity to raise the issue here today in this parliament. For anyone listening to or reading this debate, I would like them to take away two key messages: firstly, that Australia’s organ donation rate is not high enough and we need to do more; secondly, that it is absolutely vital you talk to your family and friends about becoming a donor.

Organ and tissue donors save lives. One person’s organ can save up to 10 people, most of whom are extremely sick and have endured very long waiting lists. As the member for Canberra has already noted, there are approximately 1,700 Australians on waiting lists at any time. They range from children to the elderly. Sadly, despite the number of people waiting, we have one of the lowest organ donation rates in the developed world. Most families do not even know their loved ones’ wishes.

In 2005 the former coalition government established the Organ Donor Register so that people could make their intentions known by registering their consent or objection. Doctors can now access that information 24 hours a day. What is vital to note is that registering your intention is not legally binding. That means that, when you die, your next of kin still has the final decision on whether or not your organs can be taken. Therefore it is imperative to discuss your decision with your family and friends. Even better, discuss it, register online and then remind your loved ones about it every couple of years.

Donating organs is a chance to give the gift of life, and not just to one person. For example, last year alone 247 donors gave 799 Australians a new chance in life. Seven hundred and ninety-nine lives is an amazing figure, and I cannot possibly describe what an amazing gift those people and their families receive. However, we need to do better because we still have people dying on waiting lists.

In the Hunter we are fortunate to have had donors at both John Hunter Hospital and Newcastle Mater Hospital. Figures from the Australian and New Zealand Organ Donation Registry show that at the John Hunter Hospital there have been 158 donors in the past two decades between 1989 and 2009. At the Mater there have been two in the same period.

In 2006 alone, the John Hunter had eight multiple organ donors, the highest for any hospital in New South Wales. The success of John Hunter Hospital is due in part to its involvement in the national organ donation collaboration. Twenty-one other Australian hospitals also take part in order to increase donation rates by improving their systems and best practice, and providing families with information and support. I believe that providing accurate information to people is absolutely crucial and it is something that I want to focus on. Sadly, there are a number of misconceptions about organ donation which I have heard in my years as a local member. I do believe that these contribute to our modest donor rate. I would like to try to dispel some of those misconceptions.

First is the idea that a doctor will not work to save your life if you are a donor. Doctors work every day to save lives. Doctors will do everything in their power to save your life. According to our government’s Donate Life website, doctors are extremely unlikely even to know whether you are on the donor registry before you have been declared legally dead.

Second is the notion that the body will be disfigured from the collection of organs. According to the Donate Life website, surgeons only take what is needed, with the minimum number of incisions, and they will repair those incisions. Prostheses can also be used if bones are taken.

Third is the misconception that only people who make bad lifestyle choices need new organs. Those on transplant waiting lists include those who have inherited a genetic condition, many of whom are just children—those with cystic fibrosis or congenital heart defects or who have suffered from a severe infection. There are also approximately 9,000 Australians now on kidney dialysis. I vividly recall picking up the Newcastle Herald earlier this year and reading the story of one donor recipient from the Hunter region, Jesse Hirst. I would like to recount that article by Gabriel Wingate-Pearse here today because I think it shows what an amazing gift organ donation is. I quote:

Jesse Hirst calls it his “best Christmas present ever”, a double lung transplant on Christmas Day that has given the Charlestown 16-year-old a new chance of life.

Jesse, who needed new lungs in his battle against cystic fibrosis, said he hugged his father when he woke early on December 25 after three hours in surgery.

“I told him it was the best day of my life,” Jesse said.

The article goes on:

Jesse’s father Simon Hirst said his family was very grateful for his son’s chance at a better life.

“In the initial stages, when they first talked about putting Jesse on the organ donor list, we felt like we were actually waiting for someone else’s brother, or sister, or relative to pass away so that our son can live,” Mr Hirst said.

“We were looking for a happy Christmas where someone else was going to have their worst Christmas. But then you think their family would get at least some relief from the fact that someone benefited.”

Mr Hirst said he had always been a potential organ donor.

“Some people really wrestle with that thought but … it’s the best thing you can do,” he said.

Cystic fibrosis is a genetic disease that affects various organs, but particularly the lungs, by clogging them with thick, sticky mucus.

Jesse, who had his first operation when he was eight hours old, was told weeks ago that his last hope was a lung transplant. He was put on a ventilator and transferred from John Hunter Hospital to St Vincent’s by helicopter.

Jesse said that as the days passed he began worrying that a transplant would never happen.

“After a few days I got a bit scared, because you start thinking, ‘I am not leaving until lungs come and I could be here for months’,” he said.

His spirits lifted when a nurse told him he had been through the same thing.

“He actually had [cystic fibrosis] just like me and he’d had a transplant 11 years ago,” Jesse said. “That made me feel really good, like if he can get to 11 years, I could get 20.”

But the teenager admitted he felt so ill in the lead-up to the surgery, “I really thought I was going to die”.

Then, at 3pm on Christmas Eve, a surgeon took Jesse’s mother Jackie aside and told her a set of lungs was on its way.

That story really touched my heart and it is just one of hundreds. Sadly, however, not all of these stories have a happy ending. That is what we need to fix. We need more happy endings. I call on the parliament to consider the importance of organ donation in its future decisions. I also call on everyone to sit down and talk to their families about organ and tissue donation.

Last, but certainly not least, I would like to say a sincere and heartfelt thank you to the families and friends of every single organ donor. I am so sorry for your loss and I am also grateful that you found it in yourself to give the ultimate gift to someone else. I hope that your gift of life sets an example that millions of Australians will follow.

I often think about my younger brother Bill. He is a type 2 diabetic and his kidneys have gone. How different his life would have been if he had been able to receive a kidney transplant years ago. The kidney disease that comes about with diabetes has led to further complications where he has now had both of his legs amputated and his eyesight is going, but he still retains his sense of humour. There are people who just want to live and who would rely on a generous gift, a generous donation, to enable them to live. Instead of being hooked up to a dialysis machine for around five hours every second day, Bill could have had a quality of life which would have made a substantial difference in the ability to work and to be out there in the community doing what he enjoyed doing. So I say to all Australians: please think about becoming an organ donor and let your loved ones know of your intentions. Again I congratulate the member for Canberra for bringing this motion before the House today.

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

I too congratulate the member for Canberra for bringing this matter to our attention. Organ donation truly is giving the gift of life and yet it is a gift that most people do not know how to give. According to a comprehensive survey undertaken last year by the Australian Organ and Tissue Donation and Transplantation Authority, one-third of Australians do not know that family consent is needed for organs to be donated when somebody dies. That is why I want to take the opportunity to encourage everybody—particularly those people in my electorate of Fowler—not only to sign up for the organ donor register but also to talk to their relatives and loved ones about what their wishes are. Thankfully, 93 per cent of people surveyed by the authority said that they would uphold the donation wishes of their loved ones. So long as people make it clear that they want to give the gift of life through organ donation, we should see a significant rise in our current donation rates.

One family who had these discussions was that of Debbie Roberts and her daughter Rebecca. In 2002 Rebecca tragically died at the age of 20. Before her death, Rebecca—a forthright young woman—spoke up and made her intentions about organ donation clear to her mother. Thankfully her mother, Debbie, the CEO of Youth Solutions, respected her daughter’s wishes. As a result of Rebecca’s donations four people were given the gift of life—two received kidneys and another two received her corneas. Debbie has graciously shared with me correspondence that she has received from those four recipients of Rebecca’s organs. It is very touching correspondence. The letters show just how people’s lives have been so profoundly affected and enriched and how life has been given through Rebecca’s selfless decision to donate her organs should she die. We owe Rebecca and many like her an enormous debt of gratitude for their decisions to donate organs.

Only two years ago I had the privilege to speak on the legislation which led to the establishment of the Australian Organ and Tissue Donation and Transplantation Authority. I am happy to note that since the authority came into operation in 2009 there has been a steady increase in the number of donations in Australia. In fact, in 2009-10 there were 279 donations, the highest annual donation rate in a decade. That figure is to be celebrated, but it is also important to note that we have a heck of a long way to go. As we speak here today there are more than 1,000 people on organ donation waiting lists. Those people are living with the knowledge that a donor may not be found for them in time. At the same time we have a lot of people who are suitable donors dying without having registered their intention to donate. They never had the discussions with their loved ones or families.

On average, every deceased organ donor in Australia may contribute to between three and 10 transplants. Currently we have 11 in every one million people who have registered as organ donors. Simply imagine the number of people’s lives that could be saved if we had more people brave enough and with enough foresight to have that discussion with their loved ones as to their intention to provide the gift of life for their fellow man. I proudly carry with me a card which identifies me as a registered Australian organ donor. I encourage all Australians to do the same. It is a critical first step in being able to give somebody what can only be seen as the greatest gift that one human can give to another—that is, the gift of life.

Teresa Gambaro (Brisbane, Liberal Party, Shadow Parliamentary Secretary for Citizenship and Settlement) Share this | Link to this | Hansard source

It gives me great pleasure to speak to the motion of the member for Canberra, which draws attention of the House to the rates, successes, challenges and other issues regarding the number of organ donations in Australia. I am sure that members of this place, like me, have supported many worthwhile causes in their collective times as MPs. As a busy local member I see the tireless efforts of so many who work to improve the lives of Australians. My shadow portfolio responsibilities also bring me in contact with those who support countless millions of those in need overseas.

There is perhaps no greater cause—indeed, no higher and more selfless act to improve the lives of fellow Australians—than to become an organ donor. We are an innovative country, with medical services and knowledge second to none. Australians are well educated. Our standard of living is high. We value the traditions of mateship, kindness, compassion and a fair go. So how can it be that in a country as great as ours we only had 247 organ donors in 2009, while over 5.7 million Australians are registered to donate?

The member for Canberra earlier spoke about the organ donation rates in Spain and the great success in the United States. I have been a registered organ donor for several years as have been my family members. I have discussed my wishes with my family members and my husband, and we have come together with an agreed decision. This is perhaps the most important and critical factor for organ donation to go ahead, and it is where we must focus all of our efforts.

As mentioned in the motion, more than 98 per cent of Australians agree that organ and tissue donation have the potential to save and improve lives, yet less than 60 per cent of Australians accept this invitation from their loved ones and become organ donors when asked. So despite the $150 million investment figure announced by Prime Minister Rudd in July 2008, we need to go some way. Despite the great efforts and work of the Gift of Life Australia, Kidney Health Australia, Transplant Australia, the Organ Donation and Transplant Foundation of Western Australia and the David Hookes Foundation in the lives of many Australians, and the work of many clinicians in improving organ donor rates, we still have some way to go. Those issues stem from communication problems with hospitals and very sensitive aspects that come up, particularly at that critical point.

I was really pleased and honoured in 2007 to be asked to be an organ donor ambassador for AMA Queensland, and I did a considerable amount of work in improving the profile of organ donation in our community. A particular area that I want to focus on today touches the lives of many in my suburbs, and that is chronic kidney disease. One in nine Australians over 25 years of age has one clinical sign of existing chronic kidney disease, such as reduced kidney function, or evidence of kidney damage. A total of 10,341 people were receiving dialysis treatment at the end of 2009. Unfortunately, in 2008, only six per cent of people on dialysis received a transplant—an increase of five per cent on 2007 and six per cent on 2006. Sadly, the average waiting time for a transplant is about four years, and waits of up to seven years are not uncommon.

These are remarkable figures, particularly when you look at the survival rate. Ninety-eight per cent of recipients are alive at one year and 88 per cent are alive at five years. They bear great testament to the remarkable achievement of our medical institutes and treating specialists across Brisbane and Australia. We have incredible success rates in Australia. Giving life after death is always going to be a very sensitive and emotional process for the donor’s family, their friends and medical professions. Education and coordination are keys to success, and it is very important that families get behind these incredible donation efforts.

The other day as I was preparing to speak, I saw a quote that perfectly crystallised how modern Brisbane and indeed modern Australia should approach organ donation. Social commentator Maya Angelou said:

I’ve learned that you shouldn’t go through life with catcher’s mitts on both hands. You need to be able to throw something back.

Australians need to throw something back, with the knowledge that their precious gift will be so valued.

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

I too rise in support of the organ donation private member’s motion and would like to thank the member for Canberra for bringing this important issue to the attention of the House. I am sure that all of us in this House, of all political persuasions, have the same wish, and that is the wish for the life-sustaining and life-enhancing gift through organ donation to increase to meet the ever present need that is required. Many, many thousands of lives could be renewed through the practice of organ donation and transplant, relieving the pain and suffering of those directly concerned and improving their place in the world, in the community and in our health and hospital system.

About two years ago we spoke in this place on a government bill, the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. That was a little over two years ago, and we spoke of the 30,000 Australians who had benefited from organ transplants over that time. But we also spoke of the longstanding shortage of donors and the number of organs for transplant stagnating at around 200 donors per annum, contributing approximately three times that number of organs to those who needed them most—200 people contributing some 600 to 700 transplants per year. The motion that we are debating here today mentions 228 donations having been made this year to date. This and the contributions of previous years are clearly a long way short of meeting the needs of the approximately 1,800 people who are awaiting an organ transplant at any one time.

Australia has not historically contributed towards successful transplants at anything like the rate of people within other developed countries, but we are improving. Earlier, we heard the member for Brisbane talk about Spain and that 35 Spanish people per million are registered donors compared with 10 Australians per million. Australians are increasing our registrations but we can clearly do so much more. Today I hope that this motion will encourage more Australians to put their names on the register as donors.

It is interesting to note that the highest concentration of Australian organ donors in 2006, live and deceased combined, were in the age bracket of 15 to 24. There were 105 donors in this group, compared with 59 between the ages of 25 and 34; 50 between the ages of 35 and 44; 77 between the ages of 45 and 54; and 45 between the ages of 55 and 64. Beyond these ages, the number of donors decreased substantially. In that one year there were 202 deceased donors, yet 360 donors in total—a substantial number, as a proportion, of living donors. Over the 12 months from January 2006, Medicare Australia consent and intent registrations rose from 5.57 million to 5.66 million. That is an increase of some 90,000-odd people, or 1.6 per cent of potential donors.

We can do much more, and much more is needed. It is the good and the right thing to do. To this end, we introduced and passed the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008 back in 2008. Our world’s best practice reform package on organ and tissue donations for transplantation commenced last year, funded to the tune of $136.4 million over four years. Drawing from both international and Australian experience and tailored to fit with the Australian context, the reform package consists of the following: a coordinated, consistent approach spearheaded by the national organ donation authority and a network of nationally coordinated organ procurement organisations to facilitate the donation process; new funding for medical specialist positions and other clinical positions in public and private hospitals around Australia dedicated to organ and tissue donation; a new funding stream for Australia’s public and private hospitals to cover the additional staffing and infrastructure costs associated with it; an enhanced national education and training program for health professionals involved with organ donation; and an ongoing, nationally coordinated, community awareness and education program, which is ever so important to get the message out to get people registered. (Time expired)

Andrew Laming (Bowman, Liberal Party, Shadow Parliamentary Secretary for Regional Health Services and Indigenous Health) Share this | Link to this | Hansard source

It is right to talk up the importance of organ donation and placing our names as Australian citizens on the register. It is also right that we debate this twice in two sitting weeks. So if anyone thinks they have heard this before—dead right, they have, and it is worth speaking about on more than one occasion when it is as important as life and death decisions. I guess the great moral unease that many of us have is that 98 per cent of us would take an organ, just like that, but only 25 per cent of us are prepared to donate one. As I contemplate those figures, I look at how other economies promote organ donation and realise they are facing very similar challenges. So maybe I will use the short time available to me to look at what is happening in nations like New Zealand, Canada, the US and even Vietnam to raise organ donation rates.

The figures are well known to all of us. Only 20 per cent of Australians can recall specifically having had a discussion about organ donation, 40 per cent can say they do not actually know the positions of their own relatives as to whether they would donate an organ or not and only about 60 per cent of Australians at the moment would—when at that crunch point—decide to allow the organs of their relatives to be donated. I call it the 20-40-60 rule. We can do better, but we should never believe it is a simple matter to run a public awareness campaign and have those figures go up. It is much harder than it looks.

So I commend the work of the Organ Donation Register in Australia in putting out a very simple message: you can donate from the age of 18, and from the age of 16 you can indicate your interest to do so. It is not about medical research and it is not about looking at biomedical products and their development. This is about making a life-changing decision, because one person can change the lives of 10 or more people. At the moment, while 25 per cent of Australians are on the register in our nation, that is relatively low when we compare it to the levels in other countries. Whether or not you have ticked a box on your drivers licence, you have to make sure that you have made it really clear not just to one relative but to as many as you can, and to your close friends, that you wish to be a donor. And the Medicare card number is an important way of finding individuals as their information about donating and their consent to do so can follow them via a Medicare number, and that has significant advantages over not providing one. These are important messages to provide.

If we look across the Tasman, New Zealand have particular challenges with a large Maori population and, to reconcile the traditional concepts of mind and body with the more Western notion of donating organs, they have responded in an innovative way with radio shows referred to as ‘Te Ahi Kaa’. They are doing that exceptionally well. Those TV shows went to air only two or three weeks ago. There are inspirational stories in this seven-show series that are basically raising the issues but also making the populace aware of the massive benefits that can accrue from this one, single but timely decision often made by relatives who have not had that specific conversation. The UK have the Heart to Heart campaign, which encourages people to have dinners with colleagues, friends, family or fellow students to talk about the idea of donating. The UK, like Australia, have a large and well-funded transplant week and their organ donation percentages are slightly higher than ours. The UK also have the My Life, My Gift campaign, in which radio, cinema, libraries as well as health outlets are used to promote the idea of donating. The UK have a very detailed portfolio of things that you can do to increase organ donation rates. Some of the innovative ideas would not at first have come to your mind, such as being a mystery shopper and walking into health establishments and asking: ‘Where are the donation consent forms? They should be here.’ Another idea is for people to go to an empty office or unlet piece of real estate—of course the UK has plenty more of that than we do—and say: ‘Why can’t we put up posters inside those glass windows to publicise organ donation?’ The UK have lots of innovative ideas. They even provide a logo that you can drop onto anything that is being printed and disseminated about organ donation.

In Canada, the Organ Donation and Transplant Association are also doing great work by reaching out to around five million households and distributing nearly two million organ donor cards. They have a particular focus on teens. Their ‘Teens 4 Transplants’ contest encourages young people to talk to their families about organ donation. This is another great idea that we could take on. The USA have OrganDonor.gov—obviously doing work on an even grander scale. Even a nation such as Vietnam, a single party state, finds a way of involving its 7.6 million members of the Communist Youth Union to be pure of heart and mind and to step forward on Blood Sunday and give blood. They do that in large numbers. As a developing economy, they are finding ways to do that very successfully. Countries around the world are applying different solutions to the same problem. Australia can learn from some of these great ideas, and I commend the work of everyone working in organ donation.

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

I commend the member for Canberra for her motion on organ donation, and I support it wholeheartedly. I have spoken about this issue several times in this place. Indeed, it was the subject of my very first notice of motion, in February 2008 and, like a number of my colleagues, I continue to regard it as a matter of great importance.

The health problems that require organ transplant are often life threatening, and the gap that exists between the availability of organ and tissue material and those whose health problems can only be solved by transplant of such material is far too high. No great leap of discovery or innovation in medical science is required to make real progress in this area—we simply need to increase the number of people who are prepared to donate organs upon their death and we need to improve the clinical infrastructure and administrative coordination that will support a lift in transplant rates. The health benefits that follow a successful transplant are obvious; and the social and health benefits are similarly profound.

Australia is a country that is rightly proud of its leading record in a number of areas, but that is not to say that there are not areas in which Australia underperforms and, unfortunately, we must acknowledge that organ donation is one of those areas. Of course, as the member for Canberra rightly notes, this Labor government has already made significant strides in this area. In the first year of government, we established the national Organ and Tissue Donation and Transplantation Authority with the mandate and resources needed to begin delivering on the recommendations contained in the February 2008 report by the National Clinical Taskforce on Organ and Tissue Donation. The relevant bill, passed in 2008, provided new funding of $136 million over four years as part of a total package costing $151 million. As with a number of Labor government initiatives, the purpose here was to create a nationally consistent approach so that better health outcomes for individuals could be provided through more efficiently coordinated clinical service frameworks.

The Australian Organ and Tissue Donation Authority has made good progress in that time, and I would like to mention two aspects of their work. The first is the national protocol for donation after cardiac death, which was adopted in July 2010 and provides the first clear and consistent protocol for this aspect of clinical practice. As members would be aware, donation after brain death is at the more straightforward end of the clinical spectrum, as a person whose brain function has ceased can nevertheless continue to have circulatory and respiratory function, which means that the transplant of their tissue or organs can occur in a relatively calm and considered manner. Donation upon cardiac death presents a very different clinical challenge, and with that goes challenges in terms of patient and family communication, and in dealing with certain ethical concerns.

This new national protocol represents a clear advance as a document that consolidates the work and analysis already done in this area, and sets out a step-by-step procedural  framework for donation upon cardiac death. I congratulate Dr Gerry O’Callaghan, the chair of the Donation after Cardiac Death Working Party and the national medical director of the authority itself.

The second initiative of the authority that I would like to mention is one that I have a special regard for as it was pioneered by Dr Paolo Ferrari in his work at Fremantle Hospital. As part of its early work, the organ authority has now established a nationwide live kidney donor program, the Australian paired Kidney eXchange or AKX, which cross-matches compatible donors across family pairs so that a willing but incompatible family donor of one person needing a transplant can be matched with a similarly willing but incompatible donor-recipient pair to facilitate two compatible live kidney transplants. This innovation is the perfect example of how creative thinking and coordination can help solve a serious health problem. Approximately 30 per cent of potential donors cannot fulfil their wish to donate because they are incompatible with the family member they would like to assist. The AKX program will hopefully help to cross-match a large proportion of those people, thereby allowing them to assist their relative by a matched exchange of kidneys.

Finally, I would like to again emphasise how important it is that donation rates are lifted through programs which encourage and facilitate the registration of Australians as organ donors. On that point I welcome the move by the Western Australian government to commission a report on the creation of an opt-out—or possibly a single opt-in—approach to organ donation, rather than the double opt-in system that currently applies. It would surprise some people to know that currently a person who has chosen to be a donor can only have their organs or tissues donated if their family consents after their death. Full and informed consent is important but a double opt-in approach is, in my opinion, setting the bar too high and it is an approach that does not respect the individual’s decision, which is intended to be an act of generosity reflecting true altruism. This is an important motion and a critical health issue in Australia. Once again, I congratulate the member for Canberra and all the speakers to this motion.

Steve Irons (Swan, Liberal Party) Share this | Link to this | Hansard source

I rise to support the motion from the member for Canberra and further to the member for Fremantle for giving a Western Australian perspective on this. I would also like to thank the member for Canberra for bringing this matter to the attention of the House. It was good of the member for Fremantle to mention the state government’s plan to do an inquiry and also the draft but she failed to mention that it is actually the Liberal state government, so I thought I would let that be known. She gave accolades to the Labor Party federally, so I thought I would give the state Liberal government a plug as well.

Members may recall the last time I spoke about organ donation in this place I was in the process of organising a community walk for organ donation awareness around the picturesque Tomato Lake in my electorate of Swan. I organised the event to tie in with Organ Donation Awareness Week. I am pleased to report the event was a success with a good number of people turning up on the day for the walk. The number of people attending reflected the fact that organ donation had been at the forefront of news in Western Australia during the preceding weeks.

A Perth woman and drug addict Claire Murray had sparked debate in the community over her bid for a second liver transplant. This was controversial because Claire had continued to use drugs after receiving her first liver transplant. Her serious condition meant that she needed an urgent transplant to survive. The community was divided, with some arguing that Claire did not deserve another chance, given the shortage of organs in Australia, with others contending that it would be wrong to condemn a young girl to death. On the day of the walk around the lake, some of the organ recipients who attended had mixed views on how this young lady’s position should be treated but most of them saw the organs they had received as a gift and as something to be treasured and valued from the people they had received them from.

Claire’s distressed father was courageous enough to speak to the public on talkback radio about his family’s experience. The Western Australian state government responded to Claire’s situation by offering a $258,000 interest-free loan for Claire and the family to travel to Singapore for a live liver transplant. The family took up this offer, but Claire Murray, sadly, did not survive the surgery.

While this sad tale highlighted some tough ethical questions about organ donation, I think it is fair to say that the issue would have not been so contentious had there not been such a shortage of organ donors in Western Australia. On 4 January 2010, there were still 1,770 people on the national organ donation list, many of them in a life threatening condition. In 2008, only one-third of the demand for solid organ transplants was able to be met.

Western Australia has the lowest rate of donation in the country, so organ donors are desperately needed. That is why so many people took note when last month the Liberal state government of Western Australia commissioned the WA health department to start drawing up proposals for the introduction of an opt-out organ donation system. Opt-out systems automatically assume adult donor consent unless there is advice to the contrary. The alternative is an opt-in system, a version of which all Australians are currently subject to.

As members would be aware, opt-out systems have been used in many countries across the world to solve the problem of low rates of organ donors. In fact, 24 European Union countries use some form of opt-out system. Western Australia’s Minister for Health, Dr Kim Hames, said that legislation would be drafted once a model had been agreed upon, and I, like many others, will be interested to have a look at it when it comes up. Until the legislation is passed, I advise people who wish to be organ donors to register through the Medicare system or through the online organ donor register. I also encourage potential donors to discuss their wishes with their family. Almost half of organ donations do not proceed because the donors do not have this important conversation—but I, for one, have had this conversation with my son.

Once again I congratulate the member for Canberra for bringing this matter to the attention of the House. As the Deputy Chair of the House of Representatives Standing Committee on Health and Ageing, I always take a keen interest in issues such as this, and I am open to working with the member for Canberra on this issue in the future. As I have a little bit of time left, I mention Simone McMahon, who herself is waiting for a transplant and is the Executive Director of the Organ Donation and Transplant Foundation of WA. Simone held an event recently to name stars after organ donors in Western Australia, and that was a great way to highlight the efforts and commitments of people who have made organ donations. Again, I congratulate the member for Canberra for bringing this issue to the attention of the House.

Ms Anna Burke (Chisholm, Deputy-Speaker) Share this | Link to this | Hansard source

I again thank both the member for Canberra for bringing this motion before the House and all the speakers on the motion. We need to put the matter into context. The reality is that less than one per cent of deaths occurs in such a way that the donation of the deceased’s organs is possible, and currently across Australia an average of only 50 per cent of families consent to the donation of the organs of deceased loved ones. That is why this debate is so important—less than one per cent of deaths permit the donation of organs and only 50 per cent of organ donations from those who have consented to be organ donators proceed. We need to have discussions with our families. Many of the statistics have already been cited, but I am going to restate them so that my speech is complete:

One organ and tissue donation can save the lives of up to 10 people and significantly improve the lives of dozens more.

Australia has a world class reputation for successful transplant outcomes.

Australia also has one of the lowest donation rates in the developed world.

98 % of Australians agree that organ and tissue donation has the potential to save and improve lives.

40% of Australians do not know the donation wishes of their loved ones.

Less than 1 in 5 Australians (only 17%) have had a memorable discussion with their loved ones about their donation wishes.

The most important thing that helps a family’s decision is their knowing the wishes of their loved one.

Australia’s family consent rate is low with just 58% of families giving consent for organ and tissue donation to proceed.

Around 1700 people are on Australian organ transplant waiting lists at any one time.

On average, people on the transplant list must wait between 6 months and 4 years.

Many of those people, of course, die while on the list. Some further statistics are:

In 2009, less than half of the demand for organs was able to be met.

In 2009, 247 organ donors gave 799 Australians a new chance in life.

So the actual donation rate is good—247 donors resulted in 799 Australians having a new chance in life.

In 2009, the Australian population had 11.3 donors per million people. In 2008 the Australian population had 12 donors per million; Spain had 34, the US 24, Estonia 23, Italy 21 and the United Kingdom 15.

As many speakers have said, Australia needs to lift its rate.

Australia has one of the highest retrieval rates per donor (3.4 organs per donor in 2008).

The reality is that when a person dies it is not just one organ that can be harvested and then utilised.

Australia’s rate of cornea donation puts it in the top five countries for corneal donation rates.

In 2008, 1096 people donated their corneas. As a result, 1696 people had their sight restored.

Each year, 3000-4000 skin, heart and musculoskeletal tissues are transplanted.

So it is not just major organs that can make a huge and defining difference to an individual’s life.

Being married to a MICA paramedic, I know it is often a fairly sobering thought at the end of the day’s work, having kept a person alive to get them to hospital so that organs can be harvested, that somebody will say no. It is a fairly confronting issue. My husband took a friend of ours out with him in the ambulance one night. I do not think he has ever been the same again. They worked tirelessly on a 33-year-old who was brain dead so that her organs could be donated. My husband will never find out if they were, as that is not appropriate, but it is a sobering thought that they might have worked all night to get somebody to hospital so that their organs could be used and then somebody turned around and said no.

Last year I went through a harrowing time with my father at the Alfred Hospital in intensive care for 10 weeks, 10 weeks that probably he should not have spent in intensive care. I had to have with doctors numerous conversations that I did not wish to have. One was when I had to fly home on a Wednesday night to discuss whether we would turn off his breathing apparatus. At the end of the harrowing experience my father did die, not that his organs would have been of use to anyone—I must put that on the record—but he had donated his body to Melbourne university to be used for students. This caused untold grief in my house because we were not going to have a body at the funeral. My argument was it was my father’s wish; he had conveyed it to me in no uncertain terms and we were going to do it. It saved us a small fortune too into the bargain, I can say. It was a very funny conversation with the undertaker because it was finally revealed that, yes, he had signed it over, but we respected his wishes. The easy thing in that family conversation was that I knew what my father’s wishes were and so I could say to my numerous brothers and sisters and to my uncles and aunts and my mother, ‘That is what he wanted to do.’ Have that discussion now before it is too late.

Kelly O'Dwyer (Higgins, Liberal Party) Share this | Link to this | Hansard source

I rise in support of increased awareness of organ donation, specifically to support an improvement in the organ donation numbers in Australia, and I congratulate the member for Canberra for bringing this to the House’s attention. I am very fortunate that I have not been in the personal situation where I have been impacted by the critical nature of organ donation. But my husband and I are two of the 5,622,362 people in Australia who are part of the Australian donor register. The reason we have both made the decision to be part of that register is we understand the significant impact that an organ donor can have on the lives of others. To repeat some of the statistics already given, one organ donor can save the lives of, or dramatically improve the lives of, up to 10 people. We know that as at 30 November 2009 there were about 1,770 people waiting on a list for organ transplants, transplants for things like a kidney, a heart, a liver, a lung, a pancreas or an intestine.

We know that we can have a significant impact, through these incredible transplants, on the lives of those people who are currently suffering from chronic illness because Australia has been at the forefront of technological advancement regarding organ and tissue donation. In fact, in the early 1940s Australia was the nation that began corneal transplants, in Sydney and in Melbourne. In 1965 Australia had the first successful living kidney transplant, and in the mid-1980s right through until the late 1980s we had some breakthroughs with the first successful heart transplant, Australia’s first successful kidney transplant from a deceased donor along with some great innovations in the early 2000s with the first single segment liver transplant on a baby. We can very rightly be proud of the medical advancement in this particular area.

But what concerns me today is the fact that we do not have the requisite number of people on the organ donor list for the number of people who are waiting for transplants. When you consider these statistics in Australia compared to those in the rest of the world, it is quite telling. The number of people who donate in Australia per million is in stark contrast to the rest of the world. That figure is tripled in Spain, per million people, more than doubled in the USA and doubled in France. Clearly, there is more work to be done here. The reason there is more work to be done is that it is a very difficult issue. Organ donation is a very emotional issue and the most critical aspect in all of this is to understand the wishes of loved ones when it comes to the point where a decision can be made.

The coalition has got an incredibly proud record trying to bridge the gap between the number of people who require transplants and the number of people who are able to offer their organs on the register. In 2006 we spent $28 billion trying to boost organ donation and trying to close that gap. As I have said, there is still much more work to be done. While 96 per cent of Australians are supportive of organ donations, only 54 per cent of people who suffer brain death become donors because in 46 per cent of cases the family refuses consent. This is why it is so critically important that people tell their family members of their wish to become a donor. According to the International Registry of Organ Donation and Transplantation, Australia is currently ranked 17th in the world, but we do need to consider how we can become even more innovative in trying to get people to register their wishes early on. Certainly, we have done that work when it comes to people applying for their licences. I think we can perhaps also come to consider whether there might be other critical points in people’s lives where they might also consider making their wishes known. I would like to again congratulate the member for Canberra for bringing this to the attention of the House. It is an issue that has support among the coalition, the Labor Party and the Greens. I commend this motion to the House.

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

Order! The time allotted for this debate has expired. The debate is adjourned and the resumption of the debate will be made an order of the day for the next sitting.