A rainbow of hope dimmed: Zaidee’s Law a missed opportunity for organ donation reform

As founder of Zaidee’s Rainbow Foundation, Mr Turner was invited to the tabling of the 2024 report on increasing the number of registered organ and tissue donors.

There, the Victorian Parliament released a 211-page document with 41 recommendations to increase the registration rate.

“I think they made a big mistake,” Mr Turner said.

“Trying to increase the organ and tissue donation register will not affect increasing the donation or transplant rate — it never has and it never will.

“The reason we say that is because more people each year donate at the end of life that are not registered on the national database than those that are.

“We need to increase the donation rate, not the registration rate. It’s as simple as that.”

Furthermore, the recommendations target those working in the sector, not the community.

Mr Turner called the report “a huge lost opportunity for not only Victorians but for Australia-wide”.

“Last year, I was invited to present to the committee about organ and tissue donation,” he said.

“My presentation was predominantly about the opt-out system and why we need it in Victoria.”

Since 2015, Zaidee’s Rainbow Foundation has been campaigning for ‘Zaidee’s Law’, a policy change to move Australia from an opt-in to an opt-out system.

Under the opt-out system, individuals no longer have to register to be organ donors.

Instead, a person is presumed willing to donate their organs at the end of life unless they communicate otherwise, usually by signing a form.

Countries that have implemented an opt-out policy are Chile, Finland, Greece, Uruguay, Wales, Colombia, Spain, Iceland, the Netherlands, England, Scotland and Nova Scotia in Canada.

These countries with presumed consent generally have higher donation rates than those with opt-in systems.

Despite advice from those in the sector, an opt-out system was not one of the parliament’s recommendations.

“They keep putting it in the too-hard basket, but the rest of the world doesn’t seem to be,” Mr Turner said.

“Many people say we’re 20 years behind in things we do in Australia, and this one we are — we’re 20 years behind on what the world is doing with opt-out and increasing the donation rate.”

So, what happens now?

Discouraged, Mr Turner asked the same question at Parliament House.

“Their response was the report goes to the Victorian Government, it might take six months before it's ticked off, then we don’t have any control over it, we just let it go,” he said.

The parliament has not disclosed any individual or group accountable for following up on the 2024 recommendations.

“It’s frustrating for those that work in the sector,” Mr Turner said.

And it felt like déjà vu.

The last report on organ and tissue donation was conducted in 2012.

To date, none of its 21 recommendations have been implemented.

“The 2024 report will sit on the shelf, as the 2012 report did,” Mr Turner said.

“They could make 100 recommendations, but if no-one is there saying, ‘Recommendation 16, what’s happening with it?’ then what’s the point?

“Really, these recommendations say the system’s broken.

“You don’t write 41 recommendations if the system’s working fine.”

Although most Australians support organ and tissue donation, many do not register their intentions.

Only 36 per cent of Australians are registered organ donors, according to the Federal Government’s 2023 Donation and Transplantation Activity Report.

Currently, 1800 Australians are on the waiting list for an organ transplant, while about 14,000 others languish on dialysis and could benefit from a kidney transplant.

“We’re in a crisis,” Mr Turner said.

“The donation rate is going down, our waiting list is going up... it’s increased dramatically over the last five years.”

Currently, there is no way to record the number of individuals needing a transplant.

If someone is on the waiting list but falls ill, they will be removed.

And if they recover from their illness, they will have to go through the process of being added to the waiting list again.

“That’s the catch-22 of the waiting list,” Mr Turner said.

As their names slowly crawl up the queue, hundreds succumb to the wait, dying before they can receive treatment.

The demand for organ and tissue donations exceeds the supply, and Mr Turner believes Zaidee’s Law is the solution to addressing the donor shortage.

“(Zaidee’s) has been out there for nearly 20 years bashing doors down,” he said.

“We’ve gone a long way with awareness and education, but it’s the next steps we want to take to save people’s lives.

“The opt-out is the only way I can see that will change our culture.

“It’s not going to be the silver bullet where everybody gets a transplant tomorrow, but if you look around the world, it seems to be one of their greatest tools to engage the community, to get donors at the end of life, and for organ and tissue donation to become just another normal conversation.”

To read the 2024 report on increasing registered organ and tissue donors, visit https://tinyurl.com/2hmmhd72

To learn more about Zaidee’s Rainbow Foundation, Zaidee’s Law, and organ and tissue donation in Australia, visit https://www.zaidee.org/