Organ donation in Australia needs an overhaul, say advocates who have been personally impacted by the process — and the first step is automatically putting everyone on the donor register unless they specifically opt-out.

Allan Turner has been fighting to increase organ donation rates since the death of his seven-year-old daughter, Zaidee, in 2004.

Zaidee died after suffering a brain aneurism and her organs were used to save or improve the lives of seven other people — six of whom were children.

Mr Turner said Zaidee was one of only six children nationally to donate her organs that year.

In her home state of Victoria, she was the only person under 16 to donate.

"We're good at giving blood, blankets, food, money, but we're not good at giving our organs and tissue after we die," Mr Turner said.

Zaidee Turner died of a brain aneurism in 2004. Her organs saved or improved the lives of seven people, including six children. ( Supplied: Allan Turner )

His hope is that there would be a cultural change in Australians' views on organ donation.

"What we need to do is we need to sit back and think 'what if?'" Mr Turner said.

"What if it was you that was needing a transplant?

"How would you then sell that to a family that's just about to be told, or has been told, that their loved one is not going to come out of the hospital — that you need their heart, their liver, their kidneys, or even their corneas to live a better life and, in fact, live?"

Organ and Tissue Authority disagrees

The call by Mr Turner contradicts the position of the Federal Government's Organ and Tissue Authority, which states that an opt-out system could actually reduce organ transplants.

The authority's national medical director, Helen Opdam, said the existing opt-in register had the advantage of demonstrating a clear intent to donate because potential organ donors had to go to the effort of putting themselves on the register.

Organ donation campaigner Allan Turner says switching to an opt-out donation register would prompt a national conversation that would increase donor rates. ( ABC News Breakfast )

"People say, well, if we had opt-out, everyone would just say 'yes'," Dr Opdam said.

"I don't think that would happen, actually.

"I think, in the absence of families knowing that their loved one wanted to be a donor, they may still just say 'no', even with the presumed consent law."

By contrast, she said an opt-out system could create confusion about an individual's wishes, making it more likely a family might reject organ donation.

However, Mr Turner argued that the opposite was the case and that moving to an opt-out register, backed by a national education campaign, would increase donation rates by forcing a national conversation that would help normalise organ donation in Australia.

The teen who died waiting for a liver

Emily Hellowell had spent more than a year waiting for a new liver when she died just before Christmas.

The 19-year-old was born with a condition that meant she had needed, and received, a liver transplant when she was only four.

Ms Hellowell's mother, Michelle Crews, said that operation completely changed Emily's life.

Emily Hellowell pictured after her first liver transplant when she was 4-years-old. ( Supplied: Michelle Crews )

"Because she was already sick when she was born, she didn't really have much of a life," Ms Crews said.

"She couldn't really do much — we couldn't really take her anywhere in case she got a virus or anything like that.

"After the transplant she was a different kid … nothing was going to hold her back."

Emily Hellowell pictured in hospital around the time of her first liver transplant. ( Supplied: Michelle Crews )

Ms Hellowell still had some big challenges.

Immunosuppressant drugs to keep her body from rejecting her donated liver meant even a simple cold could put her in the hospital for weeks and that, in turn, made it difficult to hold down a job.

Still, she made the most of life and when her replacement liver eventually started failing, Ms Hellowell was living away from home for the first time with her step-sister in Dubbo, New South Wales.

Emily Hellowell aged 18, before she fell ill. ( Supplied: Michelle Crews )

When it was discovered she would need another transplant, Ms Hellowell was moved to the top of the transplant list.

Over the following year she was called in for the operation twice.

However, the first time the new liver was not compatible, and the second time, in November, the donor was found to have cancer, making the liver unusable.

During that time, Ms Hellowell was steadily getting sicker.

"She was very scared," Ms Crews said.

"She knew she was sick and she was hoping this call-up would have been the one.

"She had no appetite, she was very jaundiced, very weak."

Even then, Ms Hellowell might have made it to a third call-up had she not contracted pneumonia.

Between her failing liver and her already-ravaged immune system, Ms Hellowell deteriorated fast, despite the best efforts of medical staff, before finally succumbing on December 13.

"It happened so quickly," Ms Crews said.

"We were sitting around the hospital room joking and laughing and two-and-a-half weeks later we had to say goodbye."

'I've got my life back'

Marcel Mayne (far right) pictured at a lunch with friends at Portarlington, Victoria, in August 2018. ( Supplied: Marcel Mayne )

Geelong resident Marcel Mayne also had to wait about a year for an organ transplant.

She survived the wait, but said it was too close for comfort.

Ms Mayne, 64, received her double lung transplant in March.

After the operation doctors told her they had not expected to make it until the end of the year had an organ not become available.

On top of that, Ms Mayne said her wait for a transplant was punctuated with the stories of others who did not survive the wait.

Now she has her donated lungs, Ms Mayne was not simply surviving, she had been given a new beginning.

"It's given me my life back. I went to a Christmas party and danced for the first time in five years — I can do anything anyone else can do," she said.

"There are side effects.

"I'll never be the person I was, but I have got my life back."

Ms Mayne said the past few weeks had been particularly emotional as she watched the time she had expected to die approach and pass, all while feeling better than she had in years.

Opt-in versus opt-out

Helen Opdam has said Australia was better off staying with an opt-in organ donor register, in which people had to choose to sign up to become a donor, because it avoided confusion at end-of-life when doctors and family members were trying to divine whether a person would want their organs donated.

Mr Turner said the experience of countries internationally backed an opt-out system, saying Australia was ranked 17th in the world for organ donations and that 14 of the higher-ranked countries used an opt-out system.

He cited the example of Wales in the United Kingdom, which changed to an opt-out system three years ago, following a two-year information campaign by the government.

That had started to result in a slight growth in donor rates in 2018.

Mr Turner said the feedback from the Wales experience was discussions between the families of the recently deceased and medical staff inquiring about donation had become easier.

"In fact, in most cases the family are now approaching the staff and saying 'yes', we're going to be an organ and tissue donor," he said.

Critically, the discussion triggered by Wales' decision was now spreading with Scotland and England looking at making the change, as was the Irish republic.

Dr Opdam said only about 1,200 people in Australia each year died in a way that allowed their organs to be donated.

In 2017 just over 500 of those became organ donors.

As a result, some people awaiting a life-saving transplant died before an organ became available.

Allan Turner with a picture of his daughter, Zaidee, who donated her organs when she died at the age of 7 ( ABC News )

Mr Turner said making the register opt-out would encourage conversations in the public and within families that would increase awareness of the importance of organ donation and increase donor rates.

Ultimately, it was that increased discussion and awareness that he said Australia was in dire need of.

"It's not a system that you just turn on overnight and say 'okay, it's happening on Monday," Mr Turner said.

"It's a long process to re-educate the community, to give them the facts and figures, to give them more information about making a wise choice — to be an organ donor or jump off the list and say 'no, I don't want to be an organ and tissue donor'.

"That way we create a whole new discussion within the family and that, through the education, should allow people to make a conscious decision at the end of life versus the confusion that some people feel that the opt-out system will have."

Push for cultural change

Ms Mayne expressed a similar view, saying she was frustrated at the lack of understanding many people had about the issue.

She now hoped to become a volunteer speaker for DonateLife to help spread the word about organ donation and how important it was.

"The general public just don't understand, they just don't get it," Ms Mayne said.

"I didn't understand it either — until you are in that position you don't understand it.

"You don't think about breathing until you can't do it, and you don't think about organ donations until you need it."

Ms Crews also backed the idea of shifting to an opt-out system.

"It's totally up to the person whether they want to donate their organs but, personally, once you've passed away, you're really not going to need them," she said.

Emily Hellowell, aged 16 in this image, had wanted to be an organ donor herself to help save the lives of others, like someone had done for her. ( Supplied: Michelle Crews )

Ms Hellowell had wanted to be an organ donor and had spoken to her mother about it while awaiting a transplant.

"'If something does happen to me and I don't get this transplant, I would like to be put down as a donor,'" Ms Crews recalled her daughter saying.

"'Someone died and saved my life, so I want to be able to do the same thing.'"

Sadly, because of the extensive damage her illness had done to her body and its organs, Ms Hellowell never got her final wish.

However, the other members of her family all made sure they were registered as donors before Emily's first transplant operation as a four-year-old.