TRANSCRIPT:
I proudly rise today to make a contribution on the Legislative Assembly Legal and Social Issues Committee Register and Talk about It report following the inquiry into increasing the number of registered organ and tissue donors in Victoria.
There are many, many thankyous that I would like to make quickly, because so many people have contributed to this epic inquiry. Firstly, I want to thank everyone who entered submissions to the inquiry. We received 49 submissions, and across seven days of public hearings we heard from 73 witnesses. Each of them was integral to contributing to this report. We are deeply grateful to all who shared their personal stories. Sharing their stories was integral to improving our understanding of the organ and tissue donation process, and I hope it can lead to some real improvement in the number of donors as well as the process itself.
I want to note the support, passion and dedication of Allan Turner of Zaidee’s Rainbow Foundation, who has been a major advocate and champion, raising awareness of paediatric organ donation. Allan Turner has been running Zaidee’s Rainbow for 17 years, since his daughter died at the age of seven and donated her organs to seven other children to save their lives.
I would also like to thank the rest of the committee members, including chair Ella George, the member for Lara, for putting in an enormous amount of work to make sure this inquiry and the report was a success. I also want to thank the secretariat team, Jess, Danielle and Katherine, for their professionalism and assistance throughout the inquiry and reporting process. It was emotional, it was heavy and we always felt supported with your professionalism and expert research skills throughout the journey.
As deputy chair of the committee the inquiry itself was an eye-opening experience. I am sure all members involved learnt so much about what would not generally be considered when it comes to organ and tissue donation. The standard concerns during this inquiry related to being a registered donor and improving those numbers. After the hearings between June and September last year, we ended up going a lot further than that. We heard contributions about the difficulties associated and the logistics of organ and tissue donation, such as arranging transplant teams and the need to have hospitals and medical facilities fully resourced. The logistics and facility side of things is something felt particularly hard in regional areas with far less transplant specialists and facilities to carry out the necessary transplants.
Registration still remains an issue. Some of the submissions we received criticised moving to a national register and removing it from the drivers licence process, and this is evident in our extensive recommendations in this space. Alternative options, including opt out rather than opt in, were discussed too and have been included in depth throughout this report, as was adding opting in through drivers licence registration. Contributions from hospitals and transplant centres for both tissue and organs are included in this. This includes international perspectives after we heard firsthand how the systems operate in other countries like Spain and the UK. There is also a section dedicated to cultural concerns over organ donations and what can be done to improve awareness in communities like Indigenous, Muslim and English as second language communities.
I want to share examples of stories we heard during the inquiry. One recipient of organ donation twice, Alison Mackay, advocated for people to sign up as donors, as it has saved her life. She wrote:
I have completed the online form myself, and it was ridiculously quick, easy
…
I honestly believe organ donation should be an opt out program. I think the lack of care, interest and “it doesn’t affect me” is why so few people fill in the form.
Leonard Dark also said that we should:
Make it opt-out rather than the current opt-in scenario, just as it is in Singapore.
Leah Macey supported that, saying:
I strongly believe that the option of being an organ donor should be included in request for a licence of any kind; driving, boating, hunting etc.
The report highlights some statistics, including that the nationwide consent rate has decreased from 56 per cent to 54 per cent in the last year. Victoria has a 52 per cent consent rate, one of the lowest in the country, despite having the largest amount of transplant recipients. There are around 1800 Australians waitlisted for a transplant and around 14,000 additional people on dialysis.
It has been a mammoth amount of work, and we genuinely hope to improve this space and save and improve lives. Thank you, everyone, for your contributions. Just quickly, I want to draw attention to the front-page art from the Donor Tissue Bank of Victoria. Green, yellow and red leaves reflect the cycle of seasons and grief and bear the first names of people who have donated. I encourage all to register.