Gordon Reid (Robertson, Australian Labor Party) Share this | Hansard source

I rise today to talk on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023. What this bill seeks to do at the end of the day is, as we've heard honourable members say today, improve and strengthen our organ donation systems, because it will empower families, it will empower loved ones, to tell the story of the donor, who they were and the life they led and to advocate for organ donation, which is so vital in our health system.

We talk a lot about organ donation and the importance of organ donation and advocacy in this space, but I want to take the House through a bit of what organ donation actually is from a clinical sense. We know that transplantation is the process of transferring an organ or part of an organ—whether that be liver, kidney, lungs—which is a graft, from one donor to another. There are different types of transplantation. We look at autologous, we look at allogeneic and we look at isograft transplantation.

I'm going to focus more on the allogeneic transplantation for this debate today. Then, on top of that, there are also requirements for the donor and the recipient to be histocompatible, so basically making sure that when the organ is donated that it's going to function and work without fear of rejection into the future.

There are indications for the transplantation of different organs. When we look at the kidneys, we look at renal transplantation. That's primarily reserved for patients with end-stage renal disease of multiple causes. We look at liver transplantation, where a liver or part of a liver can be transplanted into a patient for a multitude of reasons, whether that be hepatocellular carcinoma, fulminant hepatic failure, cirrhosis, biliary atresia and the like. The list for the hepatic transplantation is quite extensive. Looking at cardiac and heart transplantations, we see patients with end-stage heart failure and untreatable and intractable ventricular arrhythmias that cause severe debilitating suffering and also pose a significant risk for loss of life. Finally I'll touch on lung transplantation. That's particularly for patients with advanced lung disease that's now refractory to medical or surgical therapy or with cystic fibrosis.

This may seem like a long list of diseases—and it is—but each person with these conditions that I have just mentioned who requires a transplant, who requires an organ, is a patient experiencing incredible and unimaginable suffering in a lot of cases. That pain is often also felt by families, friends and carers who know that patient or know that person. Organ donation truly is the gift of life. It's not just a slogan. It allows people not just to see an improvement in their symptoms and quality of life but to celebrate their next birthday. It allows people to hug their children. It allows people to travel around and experience our beautiful country and the world. It allows people to live a long, happy, healthy life.

This leads me to be donors of organ transplantation—and their families—who give the ultimate gift. The ultimate gift here in this case is a strong and full life for another. I want to take a moment to thank every donor and their families for the incredible gift that they provide under the most challenging and often most horrendous of circumstances. It's so important that we have these conversations with our families. Everyone in this chamber should have these conversations with our families about what we want at the end of our lives and whether or not we want to be an organ donor. Furthermore, the ability to communicate the stories of those who have given that gift of life and those who have received that gift is vital to saving lives and improving the quality of life for more Australians.

Before I go on a bit more, I want to thank an incredible advocate for organ donation in my electorate of Robertson on the Central Coast, Rob Manning. He is an amazing and inspiring human being. He works and volunteers quite literally night and day to raise awareness for the importance of organ donation, because he knows, like so many others, of the importance of organ donation and how it does save lives, how it does improve symptoms and quality of life.

Australia's best-practice organ and tissue donation system is a proud legacy from former Labor governments, particularly the Rudd Labor government. Our government here is now committed to extending that legacy and improving organ donation. The bill we are talking about today, the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023, is part of that next step. It's the next stage in this process and in this journey. The bill is intended to allow authorised family members to give consent to the disclosure of information about an organ and/or tissue donor. This bill will allow the transplant authority and DonateLife staff to obtain consent from family members of a deceased donor before including information about the deceased donor in their promotional or educational activities. If that consent is given by what is deemed an authorised family member as defined in the terms of this bill, a law of a state or territory will not prevent the publication or dissemination of that information by the transplant authority or DonateLife. I will repeat that again. This is going to allow the families of organ donors who've made that brave, generous decision to say yes to organ donation in one of the most difficult times of their lives to tell their stories.

I've worked in the intensive care unit and had many a shift where I've had these conversations about organ donation with family members, and it is generally the worst night or day or time in a family member's life. This is a way that families can commemorate the gift their family member has given, which can generally improve the lives of or save up to seven people. It's going to let the families tell their stories and, in doing so, it's going to encourage the broader Australian public to do the same: to sign up to be an organ donor, to sign up to be a tissue donor and to have that important conversation. It's so important that we know what our family members want and what their wishes are, particularly at the end of their lives.

There was a member who spoke recently about privacy. This bill maintains the safeguards in relation to privacy that are vital to the functioning of our best-practice organ and tissue donation system. The bill will not facilitate direct contact between donor families and organ and tissue recipients, and all governments are committed to continuing to protect the rights of both donor families and transplant recipients who wish to remain anonymous.

I just want to reiterate that the families of donors and the donors themselves provide one of the greatest gifts—the ultimate gift—that can be given, and that is a full, strong and healthy life. I say thank you to those families and thank you to those donors. It is so important that we support them through that time. On a final note, I know I've said it once already, but I'll say it again, Rob Manning is a powerful advocate for organ and tissue donation on the Central Coast. He is literally working night and day, contacting our office nearly daily, because he knows the importance of organ donation, not just on the Central Coast but right across the country.

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