Derryn Hinch (Victoria, Derryn Hinch's Justice Party) Share this | Hansard source

I know that a lot of senators rise from their seats in this place to talk about things that are close to their heart. Well, I stand here tonight to talk about something that is close to my heart, literally—a few centimetres from my heart—and that is my liver. Probably I am one of the few if not the only liver transplant recipient to stand here in the Senate. I stand here as one of those lucky Australians who received a new life through the generosity of a donor family, and, even more importantly, in their time of grief—in my case, the family of Heath Gardner, who died only a day before his 29th birthday. I lived and I live now because he died. That was more than five years ago. It was after I had been diagnosed with terminal cancer and given 12 months to live. After my transplant the pathologist showed me my old liver. I asked, 'Do you see many as bad as that?' He said, 'Usually at autopsies.' I asked, 'How long do you think I had to live?' He said, 'Well, now that I have got it out and had a look at it, I reckon about two weeks.'

We have had numerous campaigns to improve organ donorship in Australia. Former Prime Minister Rudd and his government deserve credit. They committed $151 million over four years, and I shudder to think how much of that was wasted on administration costs. That is why I applaud and approve of this move to streamline the system.

We have opt-in and opt-out systems for organ donation. I must admit that when I wrote the book A Human Deadline—A Story of Life, Death, Hope and House Arrest I devoted a chapter in it to the opt-out system, which is the way the Spanish people have gone. I thought that that was the way to go. I was a great advocate for opt-out, where everybody is presumed to be a donor. It is presumed consent—presumed approval. I have since changed my mind. Under opt-out everybody is in unless, for whatever reason, you sign a thing to say that for cultural, religious or whatever personal reasons you do not want to do it, and that would be enough. I have now changed and I believe that the opt-in system, which I now call opt-in-plus, is the best way to go. With opt-in-plus you would have what I call a living will, and in this parliament I hope to push to get this approved—a living will. It means that once you have become a registered organ donor in Australia that is a living will, and that will happen if your organs or tissue are declared to be suitable for transplant.

The sad thing in this country—keeping in mind that we have one of the worst rates of organ donation in the free world—is that even though you are on the list, even though something like six million Australians are on the Organ Donor Register, very few of them will be transplanted. Very few of their requests will be honoured.

About 150,000 people die in Australia every year, and, as Senator O'Neill pointed out, only something like 435 people's organs were used for transplants. Because of multiple uses and multiple organs, they gave new life to about 1,200 people. The reason why there are so few is partly the circumstances of death and that the organs are not suitable, but the main reason—and this is a national scandal—is that families overrule their loved ones. You are on the register. You say, 'I want to be an organ donor.' For more than 40 per cent of people on the register who die and who want to give the gift of life to somebody, their organs cannot be touched, because no hospital in Australia will transplant an organ from an organ donor, even if they are on that list, if the family in their grief says no.

You can understand it, because most people—to be macabre—who are suitable as organ donors die suddenly and often tragically in terrible circumstances. Another example I will give you probably would not have helped things, but just imagine it. Just imagine you were a mother of a 10-year-old girl. You wave your child off to school in the morning and say, 'Bye-bye darling; I love you.' Twelve hours later, after some terrible accident, you are standing in the intensive care unit at a hospital and they are saying, 'Would you donate your daughter's organs?' It takes enormous strength, enormous courage to say, 'My little girl's gone, but I can save somebody else's.' Out there are hundreds of kids desperately in need of organs to give them some sort of life. In that moment of grief of course it is going to be hard. But adults on the register say, 'I want to be a donor.' The hospitals just say, 'The family didn't approve,' and so it does not happen.

Good things are happening even now. People are being trained up following some of the Canadian systems whereby people are trained as counsellors and so can make it less of an emotional pain for people as they decide to give loved ones' organs out to be transplanted.

One of the Justice Party's main promises when we campaigned was to improve organ donor numbers in Australia, and we want to get one million more in a living will. It can be done. My surgeon, Professor Bob Jones at Gosford Hospital, was talking about the old system where on your driver's licence you had a little tick. 'Will you be an organ donor? Yes or no.' Most states have phased this out, but anyway. He said to me, 'They asked the wrong question.' He said, 'The question on the driver's licence should have been, "Would you accept a donated organ?" and you would get a 95 per cent acceptance rate on that one.'

Senator Rice was talking quite rightly—and I applauded the move by her and Senator Abetz this morning—about organ harvesting in places like China. When I was told I had 12 months to live, as the months ticked by and there did not seem to be any chance, other than a couple of false alarms, of getting a new liver, I was told by a senior businessman in Melbourne that I could go to Shanghai and for $150,000 get a new liver next week. I presume from that that they would almost execute on order. How you could morally extend your life by doing that I cannot believe, but I was also told I could go to India and do the same thing.

I think it was an apocryphal story, but at a function one night a Chinese businesswoman said to me: 'Don't worry about China; there's a hospital in London. A lot of Middle Eastern people go there, and you can buy an organ.' And some well-known people have bought organs for transplant over the years. But I condemn those practices in China and I am happy to support Senator Rice and Senator Abetz.

As I mentioned, in this country we have one of the lowest donation rates. We have had efforts—great efforts at times—by Transplant Australia and by DonateLife. We have the biennial Transplant Games. Several months ago I opened those games when they were held in Penrith. Those sorts of things do give awareness and, yes, people get on the register, which is very good, saying, 'I am happy to donate my organs', but, as I said, it is the families who knock it back. Bob Jones, who I mentioned, said to me that he could conduct 50 more liver transplant operations a year if he had access to the organs. Most people do not know but, if you are on the list, generally, the organs you donate will go to somebody in your state. That is the first prerequisite, unless there is a red alert of some sort and somebody in another state is in desperate need; then, they will cross state lines. That is what he said—50 more a year—it is just extraordinary. He and his team have transplanted more than 1,000 people here in Australia.

This bill has 24 recommendations from the 2015 review into the implementation of a national reform agenda on organ and tissue donation transplantation. By setting up the Australian Organ and Tissue Donation and Transplantation Board to replace the Advisory Council, they say this will allow strategic oversight, which is currently lacking. The report in August 2015 stated:

Current governance arrangements for the OTA are advisory in nature only and do not provide any strategic oversight, performance monitoring, succession planning or mentoring of the CEO. The Review found that stakeholders were generally in support of the establishment of a Board of governance for the OTA who would be responsible for these functions (noting that legislative amendments—

I mentioned those before—

would be required). Some concerns were raised by a number of stakeholders over the observed ‘defensiveness’ of the OTA and tendency to limit debate about controversial issues; …

Well, they were spot-on about that one because I was a DonateLife Ambassador—I am very proud of it—until I spoke out in favour of opt-out rather than opt-in, and I had my ambassadorship removed. I did not add that to the list of 16 sackings I have had in my life; I just put that as an ambassadorial removal!

This is a small step but a very important step in reforming organ and tissue donation in this country. I will be fighting in this place to get one million more donations onto the register. I want to do that because I will be able honour Heath Gardner, his mother, Lyn, his father, Trevor, and his sisters, Kimberly and Melanie. I have met them all. I could not know when I promised them after I met them after my transplant—they tracked me down and I knew I wanted to honour their gift—how I would ever be in the position I am in now, five years later. Thanks to their son and the decision of his sisters and his mother I am here to try to do something about it. It was so whimsical: he was brain dead from a gunshot wound to the head. In the hospital, Heath's father had been told that he was not going to make it. He walked down to the car to meet his daughter, who had just arrived at the hospital, and Trevor Gardner said to his daughter, Kim, 'You know, they have asked me would we donate Heath's organs.' Trevor said, 'What do you reckon', and Kim said, 'Why not.' Those two words are why Derryn Hinch is standing here now. That is why, five years later, I am now in a position that I can do something about it. Heath Gardner: I am going to keep that promise.