Anne Webster (Mallee, National Party) Share this | Hansard source

[by video link] Mr Deputy Speaker Goodenough, it's a pleasure to join you virtually to speak on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021. Organ and tissue donation is a subject that is very close to my heart. In my first speech in Parliament House, I spoke about the importance of organ and tissue donation and the experience of my granddaughter, Emmeline. Emmy was the recipient of a liver transplant at the age of just 14 months. This gift of life is the reason Emmy is still with us today, eight years later. We're also grateful to her donor and their family for her gift of life. Organ donation is an experience of our shared humanity—when, out of terrible loss, hope is delivered through the life it can give. Our Emmy's life was possible through the gift of a grieving family. We hope that the gift will go some way towards helping to comfort them in their grief over the years ahead.

Shane is an inspiring young man in my electorate of Mallee. Shane has experienced two double-lung transplants. I had the privilege of visiting him at the Alfred hospital in Melbourne just prior to his second surgery. Today, he is a healthy life coach and has married his sweetheart. How life-changing is organ and tissue donation? It's why I was inspired to establish and co-chair the Parliamentary Friends of Organ Donation with my colleague the member for Macarthur, Dr Mike Freelander. The parliamentary friends group for organ donation was established to raise awareness of organ donation, to communicate the importance and the benefits of donation and to help enlarge Australia's organ donation pool. I'm pleased to say that the group is going strong in its second year.

Australia has one of the world's best records in clinical outcomes for transplantation. The first transplant operation in Australia was a corneal transplant performed in 1941. Our first successful kidney transplant from a living donor occurred in 1965, and the first successful heart transplant in 1984—and I do remember it.

In 2018, the lives of 1,544 people in Australia were saved through organ donation. Just 554 deceased organ donors, with the support of their families, saved the lives of these 1,544 people through their most generous gift of organs and tissue. In fact, in 2018, Australia recorded its highest ever donation rate, at 22.2 organ donors per million population.

Unfortunately, in 2020, Australia's organ and tissue transplantation rates dropped due to the emergence of COVID-19 in Australia. Challenges facing hospitals, and logistics including COVID-19 restrictions, flight reductions and border closures affected the national program throughout the year. Last year, we saw a 12 per cent reduction in the number of people receiving a transplant and a 16 per cent decrease in organ donors, compared to 2019. Most significantly, 18 per cent fewer kidney transplants were performed, resulting in 153 fewer renal patients receiving the kidney transplant they needed.

Despite the obvious impacts, 1,270 Australian lives were saved in 2020 through an organ transplant, thanks to the generosity of 463 deceased organ donors and their families. Families have continued to show their strength and generosity in agreeing to donation, even with the added COVID-19 complexities in intensive care units. Around 1,800 Australians are on the waiting list right now, and more than 12,000 others are on dialysis, many of whom need a kidney transplant. The best chance we have to address the challenge of longer waiting lists is to have more Australians say yes to donation registration.

As a nation, we need to think more, talk more and do more about organ donation. We need to explore opportunities to expand the program, we need to tackle the myths and misconceptions, and we need to identify and break down barriers to organ donation. We know most Australians actually support organ and tissue donation. In fact, a recent poll of 60,000 Australians showed that four out of five say they would be willing to donate their organs when they die. We know that 90 per cent of families say yes to donation when their loved one is a registered donor. However, the actual national consent rate is only 64 per cent. We know that 71 per cent of Australians think it's important to talk with their family or partner about being a donor, but only half of Australians have had that discussion.

So the problem isn't that Australians are against organ and tissue donation. It's that they are not sure if they're eligible to register, they don't know how to or they simply haven't got around to it. This is why initiatives such as DonateLife Week are so important. DonateLife Week is the Organ and Tissue Authority's annual community awareness campaign to promote organ and tissue donation throughout Australia. This year the Organ and Tissue Authority is running the Great Registration Race in DonateLife Week to encourage up to 100,000 more Australians to register as organ and tissue donors. The key message this year is that it takes just one minute to register to be an organ donor. All you need is a phone, a Medicare card and one minute of your time to register. This small action can lead to life-changing outcomes for people across the country.

The bill before the House today is supporting the work of the Organ and Tissue Authority. The bill will transition the role of accountable authority under the Public Governance, Performance and Accountability Act from the board back to the CEO and will replace the existing governance board with an advisory board under the Australian Organ and Tissue Donation and Transplantation Authority Act 2008. Importantly, stakeholders are expected to support the change, as there will be no change to existing roles and functions of the Organ and Tissue Authority. The advisory board will continue to have access to the responsible minister and will be free to focus on strategic activities. The governance changes will align the Organ and Tissue Authority with the governance structures of most other non-corporate Commonwealth entities. These changes to the governance structure of the Organ and Tissue Authority will allow the board a greater strategic focus to provide expertise and advice to the work of the Organ and Tissue Authority and will be imperative in informing the implementation of two key reviews—the 2018 review of the Australian organ donation, retrieval and transplantation system, and the 2016 review of the Australian eye and tissue sector. This work will be fundamental in setting the priorities for the future to improve organ and tissue donation, retrieval and transplantation outcomes, which will better support the authority to more-effectively achieve its strategic goals, saving lives, like those of my Emmy and Shane, and improving the quality of the lives of more Australians.

As I've said today, the key barrier to more donations is a lack of registrations. There are around 13 million Australians aged 16 years and over who are eligible to register as an organ and tissue donor but haven't. In terms of Australia's organ and tissue donation system, I believe we need to have a conversation about implementing an opt-out scheme, where it is assumed that individuals wish to donate their organs unless when alive they have registered an objection to donating.

It is interesting to note that the five countries with the highest donor-per-million population rates all have opt-out systems. In this respect, I'd like to echo the points made earlier in this debate by the member for Higgins, Dr Katie Allen, by highlighting Spain and its outstanding organ and tissue donation system. Spain is widely acknowledged as a world leader in organ and tissue donation. It has maintained a sustained increase in organ donation over more than 20 years and currently has a donation rate of 46.9 donors per million population, more than double Australia's rate. In 2018 Spain had 2,183 deceased donors, who made 5,260 transplant surgeries possible. These included more than 3,200 kidney transplants, 1,200 liver transplants, 360 lung transplants and 300 heart transplants. Spain has the highest rate of organ donation in the world, which is largely due to its approach to improving organ donation rates throughout the entire healthcare system.

In Australia, the opt-out system has been widely debated but has been rejected on several occasions. I believe that we need to consider how we can improve organ donation rates in this country and that means looking at what has been successful elsewhere. It means gathering evidence to inform our efforts into the future. I'm not proposing that opt-out is the only way forward but it is well worth considering given its success in other parts of the world.

Organ and tissue donation is life-changing. It helps to improve health outcomes for thousands of Australians every year. I'm pleased that our government continues to support the Organ and Tissue Authority with positive changes such as those contained in this bill. All measures to support our fantastic organ and tissue donation system will mean more lives are saved.

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