Wednesday, 20 March 2024

Legal and Social Issues Committee

Register and Talk about It: Inquiry into Increasing the Number of Registered Organ and Tissue Donors

Chris CREWTHER (Mornington) (10:18): I rise today to speak on the Register and Talk about It report following the parliamentary inquiry into increasing the number of registered organ and tissue donors. It was indeed an honour and a privilege to be part of the Legal and Social Issues Committee’s inquiry and, with the secretariat and committee, to produce the final report. I would like to acknowledge everyone who made submissions or appeared before the inquiry, as well as the Donor Tissue Bank of Victoria, which allowed us to visit in person. I would also like to acknowledge everyone who is or has been a committee member, including chair Ella George, who just spoke; deputy chair Annabelle Cleeland; Cindy McLeish; Meng Heang Tak; Gary Maas; Christine Couzens; and Jackson Taylor. I would also like to acknowledge the amazing secretariat: Jessica Strout, Katherine Murtagh and Danielle Broadhurst.

In particular I would like to acknowledge all staff, volunteers, organisations and community members who are or have been involved in organ and tissue donations, including everyone here in the gallery today, in particular those here and in our community who have been or who are tissue or organ donors or recipients or indeed stem cell donors or recipients or who are donor families. That includes Dee Ryall, a former member for Mitcham and Ringwood, here today in the chamber with her husband Jeff and his son Tim. Jeff submitted to the committee after donating a kidney to his son Tim. Some six years ago it became apparent that his son, now 40 years old, had declining kidney function and that a transplant was required at some point in the future. Throughout this process and his engagement with the live kidney donor program at the Austin Hospital he learned the following: there is a distinct lack of awareness of the opportunity to be a live kidney donor; that in a perceived wrong the decision for post-mortem organ donation can be overridden by family; and just how grateful he was to be able to provide the opportunity to his son to continue living a rich and fulfilling life.

There are many highlights as to the importance of this inquiry. Organ and tissue donation numbers increased in 2022 by around 30 per cent following the pandemic, within which there was a decrease in tissue and organ registrations. But only 23 per cent of Victorians have registered on the Australian organ donor register, which is well below the national average of 36 per cent and extremely far below South Australia, which is at 73 per cent. Victoria at this point had the second-lowest registration rate of all the states and territories, and the rate has only increased by 4 per cent since 2015. Notably, regional areas had a higher average registration rate at 30 per cent, as compared with metro areas at 22 per cent. This definitely highlights the need for this inquiry.

Key issues included general community lack of awareness with many willing to donate but not being registered, unclear donor registration status, the ability of family members to veto the deceased’s wishes to donate their organs and tissues and lack of talking to family members about this, with discussion with family members being a key factor in terms of organ and tissue donations going through to fruition, as well as cultural beliefs discouraging organ and tissue donation. We also discussed the need to ensure a focus on tissue donations and stem cell donations along with organ donations.

We looked at many potential solutions. A particular focus was licences, noting that South Australia retains the link between licences and organ and tissue donation registration and at the same time has the highest registration rate in the country. We also looked at opt-in, opt-out and in-between models, and there was much debate about this within the committee. We also in particular looked at family consent, noting that family members currently can override an individual’s decision, with this particularly occurring when family members have not talked about it sufficiently or at all, particularly in the midst of someone passing away, when there is a lot of emotion and grief at play.

In terms of our recommendations, we have looked at increasing awareness and overcoming myths, particularly through education. In recommendations 1 and 2 we support the return to a drivers licence approach, noting the experience in South Australia but also in America, where this system has led to some states having 70 to 80 per cent of the population signing up to organ and tissue donation. We also looked at a number of recommendations to improve stem cell donation rates.

I note the great work of the secretariat as well as all the committee – chair Ella George, as I mentioned before – and everyone involved. Thank you once again to all of those donors, recipients and donor families who are with us and in the community for all your efforts.

The DEPUTY SPEAKER: I remind members to use correct titles.