Standing up for Canberra

Organ and Tissue Donation 2010

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 80 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.

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.

Download a copy of this speech.