Katie Allen (Higgins, Liberal Party) Share this | Hansard source

I rise to speak on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021, which seeks to transition the role of accountable authority under the PGPA Act from the board back to the CEO, and replace the existing governance board with an advisory board under the Australian Organ and Tissue Donation and Transplantation Authority Act 2008.

This bill will enable the board to have a more strategic and advisory role. It is an important technical change to ensure improved governance and strategic intent of what is a very important authority. There will be no change to existing roles and functions of the Organ and Tissue Authority, and the advisory board will continue to have access to the responsible minister and 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.

To put aside this amendment, I would like to speak further about the importance of organ donation. Organ donation is a gift. It's a gift of life for thousands of Australians. Indeed, it's a gift of life for millions of people worldwide. Organ donation is a very sensitive topic, and it is very prone to changes in the environment. In 2020 we saw a big drop in organ recipients. It was a disappointing decrease from the previous year and it was due to COVID-19. It was actually a result of a decrease in the number of organ donors.

Hospitals have faced so many challenges through COVID, and we know that the health system has had to pivot significantly through what has been a dreadful pandemic over the last 18 months. Hospitals have faced logistical challenges, including flight reductions and border closures, and we've heard some really devastating stories of patients not being able to travel across borders to capital cities that have been closer to them, and they have had difficult outcomes from a health point of view as a result. This has basically affected the national program of organ donation throughout the year. There have been precautionary steps taken with the transport sector, suspending adult kidney and pancreas transplant programs, and this occurred from March to May in 2020, and there have been difficulties during rolling lockdowns subsequently. Elective surgery, including kidney transplants, was suspended from late March last year. I'd just like to say that Australian doctors and nurses have been working conscientiously to ensure the impact of these events on patients is minimised, and they should be congratulated. It's a very difficult place to be working when you have the gift of a life being shortened by the fact that COVID has had such a significant impact.

One of the bigger issues for Australia is that organ donation and consent for organ donation need to be addressed even further. In Australia, we know that 58 per cent of families consent to donation when asked in a hospital setting. It can be a tragic time when you're beside the bed of a loved one, going through those agonising last few days and hours caring for them, and then after the event having to make an agonising decision about whether the organs of your deceased loved one will be the gift of life for others. Australian families understand that gift and they have given over and over again. But only 34 per cent of Australians are registered on the Australian Organ Donor Register, and we must make organ donation a national priority to increase awareness of the benefits of organ donation for all Australians.

There are different types of consenting processes around the world, and there is a hot debate in the medical research literature about what is the best form of consent. Of course, ethics, culture, a faith based approach—all of those issues play into the culture of a country and the approach a country may take to different forms of consenting processes. There is what is called hard versus soft consent. When we talk about different forms of consenting, we talk about 'opt in' or 'opt out'. In Australia currently we have an opt-in situation. As I said before, when asked whether they would like to have their deceased one's organs donated, Australians over and over again do consent in the vast majority of cases, but that number could be increased. It's very important that everyone in Australia think about having a conversation with a family member. That's because you never know, unfortunately, if you will end up being in that situation. What we do know is that, over and over again, patients' requests for their end of life can be overturned by their family members, who are obviously distressed and in a very difficult situation, having to make decisions. Sometimes the overturning of that decision can mean the loss of a precious donor organ. So there is the option of an opt-in system, which Australia currently has, but there's also the option of a system that is based on opting out. An opt-out system across a nation can have a spectrum of policy. There is a hard consent system, where organs would be removed after death if the individual has not opted out, and most people don't support that form of utilitarian approach. It has an authoritarian concept and it's something that most countries would not agree to. But there is also a soft consent system for opting out, where there is an assumption of favour of donation, a presumption that most people would be willing to give if they were given the opportunity but that the final say rests with the families and loved ones themselves.

I believe that Australia is ready for consideration of an opt-out situation, the presumption that people may like to be considered for organ donation, as long as their loved ones and family are apprised of the situation and their views. We know, unfortunately, that fewer than one in five Australians have had these sorts of discussions with their family. If there is one thing I would urge Australians to do, it is to have that conversation. The one thing about opt-out is it gives Australians an opportunity to put this conversation front and centre.

Spain is a country that has had an opt-out system for many years. In fact, it is the leader in organ donations and has been for the past 26 years. There are arguments about why that is the case. Certainly when it first introduced its opt-out processes they took a while for the organ donation rates to increase but it is now the world leader in organ donation, with 46 organ donors per million people in their country. We've also seen other countries move to an opt-out situation and have the success of Spain. England last year changed to the opt-out system under the newly introduced Max's law. As I said before, Australia currently has an opt-in system whereby an individual must record their consent with the Australian Organ Donor Register. Australia currently sees roughly half the frequency of organ donation that Spain has.

In my former life I was a paediatrician. I trained in a fellowship program in the United States in a liver transplant program, so I've had a lot of professional experience of being involved in liver transplantation. In fact, the University of Chicago, where I trained, was the pre-eminent paediatric liver transplant unit in the world and undertook 65 liver transplants each and every year. In fact, our unit had undertaken the world's youngest liver transplant on a 12-week-old baby who had a neonatal form of liver failure. It was an incredibly young liver transplantation. Subsequently, I have also worked in Australia and I know how awful it is when a family is waiting desperately with their child for a precious organ so that they can help their child to live a more normal life.

Research suggests that opt-out countries see 32 per cent more organ donors. If that was to happen in Australia, a 32 per cent increase would translate to 148 more organ donors saving and transforming the lives of roughly 405 Australians. I believe Australia's ready for a conversation to consider opt-out going forward, with hundreds of Australians privy to the life-saving benefits of such a scheme. Australia is a world leader in successful organ transplant outcomes. We clearly have the skills in our medical industry but we always need more willing donors.

The key to Spain's success may not simply be the opt-out system; it may also lie in the fact that they employ medically-qualified donor coordinators. An essential aspect of the system is that intensive care specialists who are busy working to save lives should not be given the job of obtaining the consent of families for organ donation. It is very, very important that an independent, medically qualified, third party is engaged in the process of obtaining consent. We know that in Spain there have been a large amount of resources directed to ensuring that every hospital has a medically qualified donor coordinator. This has had significant positive effects not only in Spain but in other countries too, such as Italy, Portugal and Croatia, which have also followed suit, with each of these countries privy to larger donor rates than Australia.

There is no doubt that the adeptness of the Australian medical industry has led to a very successful organ transplant program. We know that we have some of the best surgeons in the world but we need Australians to put up their hand as organ donors and speak to their families regarding their wishes. We need Australians to think not just of the prospect of being an organ donor but the prospect of being an organ recipient. An organ transplantation can be needed at any time, even for the healthiest of individuals. With only one in three adult Australians registered to donate organs but 69 per cent believing it is important to do so, now is the time to have the conversation on how we can increase donor rates. Australians are the ones to do it.

In Australia the different states and territories have different forms of legislation and different types of services, and there is a huge range of donor registration rates across Australia. The Northern Territory, unfortunately, sits at the lowest rate at 14 per cent, but I am pleased to say South Australia has the highest rate at 71 per cent. South Australia is the only state where individuals can register to be a donor on their driver's licence. I really welcome this initiative. I think this is a really great way to make sure people think about this form of care and it's likely why South Australia has the highest donation rate. If this initiative is introduced to other states, it has the powerful potential to influence life for so many Australians.

I'd like to tell the story of Jim, a recipient of an organ transplant. He became jaundiced overnight and within a week he'd been flown by air ambulance to the Royal Prince Alfred Hospital. Doctors were confused about how a healthy 49-year-old man suddenly became life-threateningly ill and why his liver was shrinking and dying. Within three days his major organs began to shut down and he was going to pass away if he did not receive a liver soon. Luckily, a liver was available and he pulled through after a massive operation that was life-saving.

This story is just one example out of over a thousand every year in Australia where someone has benefited from the gift of life of an organ transplant. I had many similar experiences in the United States when I was a fellow in the liver transplant unit. A 12-year-old girl who had non-A to non-E hepatitis was waiting desperately for an organ transplantation. She had a number of days to live; she was in intensive care. Her uncle from Texas, who had not spoken to her family for many years, came forward after there was a public request to try to save this young girl's life. He became what is called a 'living organ donor'—he donated part of his liver to his niece. That was an incredible story and an incredible experience, watching a child's life be saved by her uncle who she hadn't seen for many years. It was a reuniting story for that family as well. We can speak about numbers as much as we like, but in the end we are dealing with human beings and every single human is important.

To conclude, this is an incredibly important area of medicine. It is life transforming. It can be a difficult conversation for people to have, but I encourage those listening to understand that the gift of organ donation is an incredible one and that it's treated with the utmost respect and the dignity it deserves by the medical health professionals doing the work and by the families receiving the outcome. As the national advertising campaign slogan goes, 'Become an organ donor—heaven knows we need them.' I commend the bill to the House.

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