Deborah O'Neill (NSW, Australian Labor Party) Share this | Hansard source

Thank you very much, Senator Hinch, because I do know that you have been a recipient of such a gift of generosity as part of the Australian medical structure. It changes things. You are here. That is probably a very powerful thing for us to be discussing in the consideration of the bill this afternoon.

The Australian Organ and Tissue Donation and Transplantation Authority Amendment (New Governance Arrangements) Bill 2016 establishes the Australian Organ and Tissue Donation and Transplantation Board, which is a replacement of an advisory council. As others have said, it is a consequence of a recommendation of review in 2014 by Ernst & Young. The bill continues the work of the Labor Party, which, in 2008, pioneered the establishment of the Australian organ and transplant authority. In 2008 organ donation reached a record low level. I do note Senator Siewert's comments about a current decline again, but that particular time prompted us into action. The low level was in fact as few as 10 donations per million Australians. In response, the Rudd government announced a new program, expressing the very frank frustration of many Australians by stating that the government had been stuffing around for too long over who would fund the dedicated program.

A result of that action is what is known today as the Australian Organ and Tissue Donation and Transplantation Authority Advisory Council—the body that this bill seeks to replace in a way that updates it rather than dismisses it. The funding included $67 million for dedicated specialists and staff for public hospitals, and $46 million to establish an independent national authority. So, it was no small commitment. We did this because Labor believe that the health of Australians is a concern for all Australians and that authorities such as this are very much a part of the fabric of making sure that Australians get access to what they need, when they need it. We know today that that Labor initiative grew the number of organ donations per million people to 18 from 10—almost a doubling. That is a great outcome, but, as has been alluded to, there is much more work to on do.

The member for Hasluck, Ken Wyatt, stated that the OTA had achieved a broadly effective agenda. But, despite the success, there is still work to be done to improve the function of the OTA, especially to encourage the normalisation and acceptance of organ donation in Australia. This bill builds upon the great work of the OTA and helps it consolidate its position as a world leader in organ transplantation and donation. Labor hasalways fought for a fair and equitable health system, where the people of Australia are looked after, whatever their background or whatever the condition or whether their wealth gives them the capacity to determine their health outcomes. This was a significant investment to improve life outcomes for many Australians.

Through Medicare, Labor has constructed a support network for Australian families. Our efforts to keep Medicare free and public are reflected in the priority that we place on health and, consequently, the significant funding to establish this authority in the first place. As the chair of the Select Committee on Health in the previous parliament and now as the shadow assistant minister for mental health, I speak with people in the sector on a regular basis. Nurses, doctors, patients and their families all speak about how much health matters to them. It matters particularly at the moment when people are passing and at the moment when your life might not be able to be continued unless somebody is generous enough to give you an organ or a tissue that will enable you to survive. We know the OTA has proved a very effective body in reforming the donation system and tapping into that generosity of Australians. Those goals to increase donation rates continue to drive the agenda of the OTA.

Labor understands the personal challenges to donation are complex and rooted in social and cultural issues, especially when gaining consent from family if the deceased person has not left clear wishes. Senator Moore is here in the chamber. We were just responding to Senator Siewert's contribution and she said, 'Nobody really knows why we've had this dip because it is such a complex issue.' Hopefully this change of structure to the board is going to provide research that might give us a better understanding of why this is happening.

We know that some of the things that the OTA have done included employing a family donation conversation professional who came to train staff and specialists to help clarify potential fears of families of donors. This has certainly increased the rate of family acceptance to 75 per cent. That is particularly in the case where family donation conversation trained staff members have been in place with specialists when having these conversations. It is a very difficult conversation to have and a very challenging part of a family's journey together. That was a piece of information that came from the OTA's 2016 report.

The focus, as I said, of this proposed bill is to change the current structure where there is an advisory council that sits underneath the CEO. The change to the board structure means that the CEO will now account to a board. Echoing the expression of perhaps concern and perhaps hope by Senator Siewert, the quality of the people on the board is going to be critical in determining how successful this change that is mooted in the bill will be.

Improving the OTA and continuing the Labor led focus on the health and welfare of the people of Australia is something that I am very proud to support. I do not often want to speak the same words as Senator Nash, but when she says she is not interested in personalities but is interested in saving lives I have to concur. I think all Australians would agree with that. It gives me great hope that there has been such widespread support for the arrangement that has been put in place over some period of time.

There was a threat at one point to the OTA in the last parliament. I was very pleased that the Senate Select Committee on Health had hearings into that and Labor was able to draw sufficient public attention to the different functions of the OTA as opposed to the blood authority which meant that it could get a stay on the threat of a merger of those two authorities. I am pleased to see that what we are debating here in this bill is a change of shape for the OTA as an independent body rather than what we might have had, which was two organisations doing very different things being forced together. I have to say that the Liberal and Nationals parties with regard to the OTA may have seen the benefit of not going ahead with that.

According to the OTA, one organ or tissue donation can save 10 or more lives. Organ transplants are a very effective and well-researched treatment. They currently provide the best quality of life for many in need and, as I said earlier, save lives. It is this spirit of kindness when donating that the DonateLife organisation refers to as the greatest gift. While I am speaking about that, I notice that we have a number of Christmas trees around the place. In the spirit of Christmas, I recall that in one of my Christmases as the member for Robertson I took some of the documentation and some of the flyers from DonateLife to my local stations—Gosford station and Woy Woy station. I asked people to think at Christmas. And I also put this on the record today. I ask people here in the parliament and people who might be listening to think about it. We talk about Christmas as this time of gift giving. There is perhaps no greater gift that you can give than to decide you are going to register as an organ donor.

One of the things that the DonateLife campaign has been funded to do is raise awareness that if you do make a decision to record your support to donate life then it is important you have a conversation with the people who are most likely to be with you at the time at which a decision might be made about whether your organs and tissues might be harvested to bring life to someone else.

When I think about all the Australians I come in contact with in the community—and I have doorknocked tens of thousands of doors—I meet amazing people every single time. They inspire me with their passion, with their work, with their commitment to the community. There is a generosity of spirit that is quintessentially Australian. Yet we are not quite there with donations. So, again, I say: if you have not decided to register to donate your organs, think about that as a Christmas gift that you give your community. You never know, somebody might be able to save a family member of yours, or you might be able to help another family.

I would also like to take the opportunity to acknowledge the incredible community leadership shown by a family on the Central Coast when faced with a particularly challenging situation. I am talking about the Pilon family. On the coast we know of a young boy called Banjo Pilon. His older brother, Fletcher, is more known to people because he was a performer on The Voice,one of those wonderful music shows, and he was a winner. He is an amazing young man. His career was really starting to take off. On a Sunday in August last year he was with his young brother, Banjo, and his sister, Gabbi, and things were looking wonderful for that family. But just before 5 pm, when skating with friends in Prince Street in Wamberal, Banjo was, very sadly, struck by a young local person on the Central Coast who was on their P-plates. It was a horrific accident.

The Pilon family responded in a way that was so open to the whole community and with such generosity that they modelled how a family might respond in grief. Banjo's mother, Jilly Pilon, wrote a very moving online tribute to her son, who she described as being 'full of huge smiles, filled with love, always having fun and living in the moment'. In her tribute, she said:

You have put up the greatest fight these last two days our angel. So proud of you and how strong you've been.

On the Wednesday night of that week, she wrote:

At 3.01pm today, whilst your precious little heart still beats strong, it was time to declare you've moved into another dimension. We now savour every last minute with you our little hero before you are taken to donate your organs tonight to other sick little children and give them your special gift of life. Keep smiling sweetheart. We all love you so, so much and you will always be with us wherever we are.

When I think of being able to write that—I am barely able to say it. This is what I am talking about: these are the sorts of people that Australians are. There are great people who understand this, and it is just a technical thing that we need to do—we just need to register. And we need to have these conversations with the people we love. That is really the outcome that we want to achieve so that we can give this gift of life to other people. The gift of people's creativity and the technological capacity we have give us the opportunity to do something remarkable that was impossible 40 years ago. It is time for Australia to embrace this. It is time for us to take the lead from people like Jilly Pilon, who honours her son Banjo and who shows us what can actually be achieved, to manage through that terrible grief to make something very positive. They continue to be a remarkable family. There are many stories about the Pilon family that I could tell. That makes this personal.

I do want to make some remarks about what the OTA program can do. As a 2014 report of the Senate Select Committee on Health stated:

The benefits of organ transplantation both to the recipient and the broader society are undeniable.

The benefits of organ donation are clear in the numerous stories shared by transplant recipients, such as those seen in the many reports of the OTA or on their annual 'thank you days', where there is a common theme of 'beginning anew', 'doing what I never would have been able to do before' and of being 'provided with a life that otherwise would have been lost'.

In 2016 the OTA recorded the amazing and life-changing contributions of 435 donations—435 amazing Australians who made a choice. We are a population of close to 24 million; I think we can do better than that. Those 435 donations transformed the lives of 1,239 people. As I said, I think that much more can be achieved. Through Labor and the OTA's efforts Australia has gained a reputation for a world-leading number of donations, but not as much as we could possibly do. We do have fantastic facilities for transplants, and we need to make sure that our hospital funding is maintained at a level where that is possible. I have some more remarks to make about that later this evening, when I will talk about the hospital funding cuts that came in as part of the 2014 budget brought in by Tony Abbott and banked continually by Mr Turnbull.

The OTA has been provided with $½ million of funding by this current government to establish and maintain a governing board and to allow it to continue to expand the scope of its operation, continuing the originally Labor-led initiative for the welfare of Australians with regard to tissue and organ donation. According to its 2015-20 strategy report, the OTA will follow a three-step plan: firstly, increasing the number of potential donors to minimise the number of people left waiting; then it will improve its conversion rate or acceptance of organ donation in the community; finally, it will improve the systems to support organ and tissue transplantation.

By cementing Australia's position as one of the world leaders in organ and tissue transplantation and donations and ensuring that the people of Australia receive the best possible care when they are in need, this bill will continue the great work around providing help that I stand by and the Labor Party has always stood by. Can I indicate to those who are interested that there is a capacity for you to register or change your registration details to donate organs. The number is 1800777203. There is an email, which is aodr@medicareaustralia.gov.au. If you are thinking about a Christmas gift, this is a really good one. Please consider giving this gift to your fellow Australians. I commend the bill to the Senate.