Anne Webster (Mallee, National Party, Shadow Assistant Minister for Regional Health) Share this | Hansard source

I rise to support the premise of the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023 and its potential to raise awareness of organ donation, although I believe more work needs to be done before the bill passes both houses. Allowing organisations such as the Organ and Tissue Authority and DonateLife to obtain consent from authorised family members of a donor or recipient to share information regarding their loved one helps to promote organ donation. The amendments allow family members to further commemorate the gift from their loved one in remembrance services. When donor families shared their story, not only is their loved one honoured for giving the gift of life but also it raises much-needed awareness that organ and tissue donation is life-saving.

Legislation of this type has already been passed at the state and territory level—for example, in November 2022 by the ACT government. It should be noted that this amendment is not intended to facilitate direct contact between donor families and organ and tissue recipients. The right of both donor families and transplant recipients to remain anonymous remains paramount. I support any measure that may further help the cause of organ donation. However, there are potential issues with the bill in its current form, particularly with the large expansion of the list of authorised family members who are able to provide consent for the disclosure of information. There is also limited detail around the process by which this consent will be sought. Once again, we are seeing a pattern emerge with this Labor government, which refuses to allow for appropriate levels of consultation on their legislation and fails to follow proper process. My colleagues and I will support the passage of this bill through the House, to then be explored in the Senate with a committee inquiry. Referring this bill to the Senate Community Affairs Legislation Committee will allow further adjustments to ensure that the bill is watertight and is as effective as possible.

I want to see this legislation be the best it can be, as organ donation is a subject that is extremely close to my own heart. My granddaughter Emmeline was the recipient of a liver transplant at the tender age of 14 months. Emmy was diagnosed six weeks after birth with biliary atresia. Without surgery, this disease cuts the life of a baby very short indeed. Emmeline underwent a simpler procedure initially, which unfortunately did not work. The only hope for her was a liver transplant. I have to say, I hope she never has to undergo another one. She was a very sick baby for the first 14 months of her life, and we dared not think about the only alternative she faced without a transplant.

The Royal Children's Hospital in Melbourne was Emmy's home for months, and the care she received was absolutely exceptional. It is impossible to speak of how grateful we are to her donor and their family for the gift of a replacement liver. It took about 24 hours for Emmy's skin colour to change from sickly yellow to vibrant white and for her eyes to change from yellow to perfectly white. It was simply extraordinary. Emmy is now a thriving, bubbly almost-10-year-old—she's not 10 yet, she tells me all the time!—who is afraid of pretty well nothing and lives life to the fullest.

It is from my granddaughter's experience that I re-established the Parliamentary Friends of Organ Donation along with my friend the member for Macarthur, Dr Mike Freelander, in 2019. We thank all members on both sides of the House who have supported this cause over the past few years.

Just recently I attended the World Transplant Games in Perth. The World Transplant Games were first held 45 years ago, and this year they returned to Australia for the first time since 2009. There were recipients and donor families from 45 countries represented in Perth, with such a powerful message to share: that organ transplant not only saves lives but allows recipients to thrive. The World Transplant Games is the world's largest event with a goal of raising awareness of organ donation.

In supporting this legislation, which aims to raise awareness, I note there is still so much work to be done with regard to organ and tissue donation. Currently, if a deceased individual is registered as a donor, their family must be informed of the donor status of their loved one, and the family's approval must be obtained to begin the donor process. At present, should the family object, the donor process is abandoned and the wishes of the deceased to save a life through organ and tissue donation cannot be fulfilled. Australia's Organ And Tissue Authority, the OTA, states that nine out of 10 families gave consent to donation when their family member was registered to be a donor and they were aware that this was the case; however, this dropped to four out of 10 families when a family had not been informed by their loved one that they wanted to be a donor.

Organ and tissue donation is a selfless, noble decision that should be not only encouraged but also upheld and carried through at the wish of the donor, as it is life-saving. According to the OTA, only around one in three people are registered to be an organ donor. And that is something that needs to change.

This is not a political issue. It is bipartisan.

Currently, in Australia, there are around 1,600 Australians on the waitlist for organ transplant. These are everyday people—mothers, fathers, children, sisters, cousins and friends. They are people just like you and me, just like our children and grandchildren. On top of the 1,600, there are more than 13,000 additional people on dialysis, many waiting for a kidney transplant.

But, while the numbers I have just highlighted seem concerning, there is cause for hope. Australians have been doing well. Since the OTA was established in 2009 to lead the national program to improve organ and tissue donation in Australia, more than 15,500 people have received life-saving organ transplants from 5,450 organ donors.

The coalition has long been a supporter of organ donation and oversaw an increase in donors through various investments and marketing when in government. In Australia, in the first 10 years of the organ donation program, the deceased donation rate grew by 122 per cent, resulting in an 81 per cent increase in people receiving an organ transplant.

How can you help? It is as simple as registering to be an organ donor, if you haven't already. Organ donation is a rare event, fortunately. Organ donation can only occur when someone dies in a hospital, as organs need to be functioning well to be transplanted. In 2021, around 1,250 people, or two per cent of those who'd died, were in a condition where organ donation could be considered.

Life is precious. You can ensure that, whatever happens to you, that could save the life of another Australian. But we must be intentional about this. I am registered. Are you? Registration is easy and can be done through donatelife.org.au. Anyone in Australia aged 16 or over can register. It takes only one minute, but that one minute can give another person a chance at life. It could be you or your loved one. And I know, you would be forever grateful. Everyone in this House should be appreciative of the work of DonateLife.

I would like to take this opportunity to recognise DonateLife for the work they do across the community, including with individuals and families affected by organ, eye and tissue donation and transplantation. I acknowledge their work in collaboration with donate agencies in every state and territory and the specialist donation medical nursing and support staff who deliver the nationally consistent program. Their work in increasing the rates of donation and improving outcomes for Australians who require an organ or tissue transplant is crucially important. Improvements in this area literally change and save lives.

Once again, I reiterate my support for the premise of this bill and the awareness it will create for organ and tissue donation. I just want to see some more work done on it before it is ready to pass into legislation; hence, while this bill will be supported through the House, there are some questions that need to be teased out in the Senate.

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