Canberrans are some of the least likely Australians to be registered as organ and tissue donors, new data shows.
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The federal government's Donate Life is urging more territorians to register themselves, an act they say only takes one minute.
In 2023, 29 per cent of ACT residents 16 years and older were registered to donate.
This is well below the national average of 36 per cent.
![Ludmila Milo is on the transplant list, waiting for a kidney. Picture by Keegan Carroll Ludmila Milo is on the transplant list, waiting for a kidney. Picture by Keegan Carroll](/images/transform/v1/crop/frm/135763310/c171d375-2e99-40ce-b58b-aa59fadd060d.jpg/r0_500_5000_3322_w1200_h678_fmax.jpg)
Last year, 29 ACT residents received an organ transplant, but only ten residents became donors.
There were nine eye donors, and three tissue donors. While many people donate after death, kidneys and livers can be donated by live people.
One donor can save up to seven lives, Donate Life says.
In 2022, 54 per cent of families said yes to donation when asked in a hospital setting compared to 56 per cent in 2021.
- Donate Life
Griffith resident and former teacher Ludmila Milo has been waiting for a kidney for four years through the Westmead Hospital program in Sydney.
Ms Milo developed endocarditis, inflammation in the heart caused by an infection, after having dental surgery in 2019.
Following this, Ms Milo was diagnosed with kidney disease and is now in end-stage renal failure.
![Ludmila Milo. Picture by Keegan Carroll Ludmila Milo. Picture by Keegan Carroll](/images/transform/v1/crop/frm/135763310/84b2d2b1-ac88-4ca0-9876-7c2d8c8a0df8.jpg/r0_433_5000_3255_w1200_h678_fmax.jpg)
"They say on average it takes four years from when you start dialysis before a kidney is offered to you," Ms Milo said.
"But you just never know where you are on the list, and I think COVID slowed a lot of things down.
"If I get to the top of the list, and a kidney comes along that is a suitable fit for me, I might get a call ... and I have to get myself to Sydney [and hopefully] they can go ahead with the transplant."
Ms Milo has dialysis, a treatment which essentially replaces the functions of a kidney, once a week.
![The percentage of population aged 16 and over and registered as a organ donor. Source: Donate Life The percentage of population aged 16 and over and registered as a organ donor. Source: Donate Life](/images/transform/v1/crop/frm/135763310/cb5559ea-6ee6-4ea9-a79c-16b191340841.jpg/r0_5_1096_621_w1200_h678_fmax.jpg)
Many patients with kidney failure will have dialysis for four to five hours several times a week.
"It is like life support. You don't have a life," Ms Milo said about having the treatment tri-weekly.
For someone on dialysis that regularly, a kidney transplant "would be an absolute life changer", she said.
"You cannot do anything spontaneously, everything's got to be organised.
"It really affects your lifestyle and the things that you can perhaps do with your life. Definitely, travels out of the question."
![Organ and Tissue Authority CEO Lucinda Barry. Picture by Sitthixay Ditthavong Organ and Tissue Authority CEO Lucinda Barry. Picture by Sitthixay Ditthavong](/images/transform/v1/crop/frm/135763310/b0bcd51b-c210-458a-9136-f91fc6756aed.jpg/r0_352_4800_3061_w1200_h678_fmax.jpg)
Ms Milo said she was surprised to learn only 29 per cent of ACT residents were registered to be organ donors.
In 2022, the organ donation registration rate in the ACT dropped by about half compared to the year before.
However, 2021 appeared to be an anomaly, which thousands more Canberrans registering than in previous years.
Australia-wide, there are currently around 1800 people on the waitlist for an organ transplant.
![From left to right: Mallie Taylor, whose husband died from organ failure; Gift of Life president Cath Scott; double lung transplant recipient Steve Williams, and Jane Brennan, a heart transplant recipient. Picture by Sitthixay Ditthavong From left to right: Mallie Taylor, whose husband died from organ failure; Gift of Life president Cath Scott; double lung transplant recipient Steve Williams, and Jane Brennan, a heart transplant recipient. Picture by Sitthixay Ditthavong](/images/transform/v1/crop/frm/135763310/25c7a4e9-2efa-49f8-8721-047a2a47fd18.jpg/r0_491_4800_3200_w1200_h678_fmax.jpg)
There are also around 14,000 additional people on dialysis, some of whom may need a kidney transplant, Donate Life said.
Despite the wishes of someone who has recently died, a family can refuse their intention to donate.
This is one of the biggest barriers to saving lives through organ or tissue donation, DonateLife ACT Medical Director Dr Sean Chan said.
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The chance of a registered donor's family giving permission to a donation doubles if they make their wishes clear, Dr Chan said.
"In hospital, discussing organ and tissue donation comes at an intensely emotional time for families," he said.
"Registration helps families know what their loved one wanted.
"Across Australia, eight in 10 families say yes to donation when their loved one was a registered donor. Unfortunately, though, this number is halved when a person is not registered and hasn't told their family their wishes."
- Register your intention to donate your organs at www.donatelife.gov.au
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