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Health

Heart patients call for change to Australia's tissue and organ donor opt-in system

Cara Curan and Brian Clarkson are both waiting for a lifesaving heart transplant.

Neither knows what the future will bring, but both are certain their friendship is forever. 

Ms Curan has pulmonary atresia, which is a congenital heart disease, and Mr Clarkson has Mafarn syndrome, a genetic disorder.

The pair, aged 38 and 65 respectively, are both residents of the coastal village of Sawtell on the NSW Mid North Coast.

They met at a cardiac rehabilitation class in Coffs Harbour during the COVID-19 lockdown. 

"We got talking, and then we realised we were under the same heart and lung transplant team at St Vincent's Public  Hospital, Sydney, and we have the same cardiologist, and the rest is history," Ms Curan said.

"We've become really close friends, and we will be for the rest of our lives."

But how long they have left depends upon how quickly they can secure a transplant. 

While Mr Clarkson doesn't like to think in terms of numbers, Ms Curan has been told she has just "12 months to a couple of years" to live without a transplant.

Calls for change to system

As the duo wait for their lifesaving transplants, their plight has led them to call for change to Australia's tissue and organ donation model, which currently allows people to opt in. 

This means those wanting to donate their organs or tissues have to sign up through the Australian Organ Donor Register.

But Mr Clarkson believes organ donation should be an "opt-out of, rather than opt-into" system.

"So many people want to donate, "he said.

"But they aren't aware that they have to register, and it's not a tick on the licence anymore."

Transplant Australia chief executive Chris Thomas said they supported Australia's current opt-in system.

Mr Thomas continues to have an "open mind" about different models around the world but is not convinced changing the system would increase the number of organ and tissue donors.

According to Transplant Australia, 7.5 million Australians are registered to donate tissue and organs.

However, Mr Thomas said more needed to be done.

He said it was time to go back to the previous system, which allowed people to tick a box on the driver licence consenting to organ donation.

The drivers licence system has been phased out in all states and territories except South Australia, where 73 per cent have registered to donate. 

"It was a mistake to delete this option."

The Organ and Tissue Authority (OTA) chief executive Lucinda Barry said "the OTA would welcome discussion to increase the number of Australians registered as organ and tissue donors, including via drivers licences".

Ms Barry says it is important for those who are already registered to let their family know as "they'll have the final say".

"In Australia registering as an organ and tissue donor is an indication of intent, not a legally binding decision," she said.

"We know if someone is a registered organ and tissue donor, and their family knows this, they will say yes to donation almost every time [nine times out of 10]."

If the family had not been informed, the number of families agreeing was half, she said.

More vulnerable since mask mandate end  

As social distancing measures and mask mandates around COVID-19 have ended, Ms Curan and Mr Clarkson said they felt more vulnerable than ever.

"Society has dropped its guard," Mr Clarkson said.

"If Cara and I got COVID now, we'd be in a really bad way."

Ms Curan said they would be even more vulnerable after a transplant.

However, she said she did not want to live a secluded life either.

"You're getting an organ to live, so you don't want to become a hermit."

First in line

But whatever comes, the pair say they will be there for each other and are focused on a happy ending.

In the spirit of true friendship, Mr Clarkson hopes Ms Curan, who is marrying her fiancee on June 21, 2023, is first in line.  

"I've told the doctors down there, Cara's to get the call first, and I'm to come in the following week," he said.

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