By Poppy Solomon
Australia’s waitlist for organ transplants is far beyond the amount of organ donations occurring each year. With a population diverse in age and ethnicity, the demand for organs that match those who need them is continually increasing.
In 2016, the Australian Bureau of Statistics recorded 158,504 deaths. Donatelife, the Australian Government Organ and Tissue Authority, recorded 503 deceased organ donors. Therefore, only 0.32 per cent of deaths resulted in a donation in 2016.
Donatelife donation specialist nurse coordinator Shona McDonald says organ donation is the process of procuring organs from a deceased person and transplanting them into a living person whose own organs are failing.
“Less than one per cent of people die in a way their organs can be donated,” she says.
This rare death is known as brain-death, which usually occurs after a stroke or tumour. The person cannot live without life support, as their brain has died, however their organs are perfectly healthy. This means, with care, the organs can be transplanted.
ShareLife is an Australian organisation which advocates for better organ transplantation systems. Co-founder Brian Myerson says although a brain-dead patient on a ventilator may appear alive, blood circulation to the brain has stopped permanently.
“So, there’s a machine that’s pumping oxygen into you, and keeping your heart, and therefore everything else going,” he says.
Myerson says once these patients have been identified, the transplant doctor must take the family aside and get their agreement to donate their loved-one’s organs.
Next is the process of procuring the organs. The donor will be taken to the operating theatre as quickly as possible. Organs cannot survive long once taken off life-support, therefore the faster the process is completed, the higher quality and quantity of organs.
Due to the high demand of organs, those who require a transplant are placed on a waitlist.
In August 2017, Minister for Aged Care and Indigenous Health Ken Wyatt gave a speech regarding organ donation to the House of Representatives.
“Last year, a record 1,713 Australians received a transplant thanks to the generosity of 503 deceased and 267 living organ donors and their families,” he says. “However, with 1,400 Australians still currently on waiting lists and a further 12,000 people on dialysis, I would ask all Australians to consider becoming an organ donor.”
Myerson says the organ allocation process ensures transplant doctors do not create bias.
“Obviously, all doctors want to take care of their own patients, so you have to have a totally independent system,” he says. “All the dying patient’s details are entered into the system, and that system then identifies the best match. In general, the sicker you are, the better chance you have of getting an organ.”
McDonald says several people on the waitlist die every week waiting for a transplant.
“There’s a very strict set of criteria and guidelines to just make sure it’s fair and equitable, in order for someone to actually be placed on a transplant waiting list,” she says.
“They need to be seen by the transplant teams and deemed that they do need a transplant.
“Because it’s such an amazing gift that someone can give another person, we just want to make sure that the people who are getting them do really need them.”
McDonald says the organ must also match the recipient.
“There’s different height and size requirements. Then one of the other ones is blood and tissue typing,” she says.
The Australian Organ Donor Register is based online and allows people to opt-in to making a donation upon their death.
As shown in the below map, Queensland is a leading state in Australia, with 21.3 donations per million deaths. However, this number remains significantly lower than the amount of organs needed.
In some countries with higher donation rates, such as Spain, an opt-out system is used. In this system, a person is assumed to be a donor unless they register otherwise.
In recent years, many calls for countries to adopt opt-out systems have been made. Although some countries with opt-out systems do display higher rates of donations, organisations including Donatelife and ShareLife agree this is not the issue.
The Australian Medical Association (AMA) released a position statement in 2017 regarding organ donation registration.
In a media release, AMA president Dr Michael Gannon said although the position statement acknowledged the debate of “opt-in” vs “opt-out”, the organisation did not support one over the other.
“It upholds the principle that either system must be based on free, informed donor choice involving the right to choose, as well as to refuse, to be an organ and tissue donor,” he says.
Shona McDonald says one of Donatelife’s major messages is for people to discuss their wishes with their family, then sign up to the register.
However, Myerson says the government’s push for the population to register is simply a distraction.
“It makes no difference, in my opinion,” he says. “We [ShareLife] went overseas and looked at a large number of countries. All the evidence shows that it depends what you are doing in hospitals.
“If you’ve got trained people identifying and taking care of those dying patients, and trained people doing the requesting, you will achieve a higher donation rate.
“If the population actually knew that it’s the systems in the hospitals that are responsible… suddenly, when some young baby dies because there’s no liver available… they are going to hold the minister responsible, they will hold the hospitals responsible.”
Myerson says the general population has been “conned” into believing low donation rates are their fault.
“On the Donatelife website, you open it up and all you see is registration, but if you actually go inside it… there are studies. It’s way, way down, they don’t want to public to know about it,” he says.
This lack of successful organ donations is quickly increasing as an issue, as more people require healthy organs.
One reason for this increase in demand is Australia’s ageing population, but a more prevalent cause is the country’s diverse ethnic population.
An organisation in the UK found people from minority groups can wait up to a year longer for a transplant, and therefore it is vital for people of all ethnicities to be donors. Further, people of different ethnicities are also receptible to different diseases.
As shown in the graphs below, Australia’s population mostly consists of Caucasians, with minority groups including Chinese, Indian and Australian Aboriginal.
This data suggests people of less prevalent or mixed ethnicities will have more difficulty finding an organ match.
Donatelife says Aboriginal and Torres Strait Islander people may be hesitant to donate organs due to cultural beliefs. Unfortunately, making up only 3% of the population, this means it is extremely difficult for people of this ethnicity to find a match.
Myerson says most indigenous Australians are not on the donor register.
“They’ve been separated from other groups for thousands and thousands of years,” he says. “Therefore, you are far more likely to find a compatible donor for an Indigenous person here, from the Indigenous population.”
A News.com.au article also found several examples of this issue, including that Asians make up 19.8% of the waitlist for a kidney, but only 2% of donors.
Myerson himself is an organ transplant recipient, which is a reason he co-founded ShareLife.
“I found my donor family and was absolutely astounded,” he says.
“My donor’s grandparents actually came from the same city that my grandparents came from. That’s not just chance… the more things you have in common, the more likely you are to find a closer tissue-typing match.”
Another issue is the cost of keeping people on dialysis, which is far greater than the cost of a transplant.
Myerson says many people should be on the waitlist but are not.
“These people who virtually are stuck in hospital with failing lungs and livers and hearts – the cost of keeping those people alive goes into the hundreds of thousands per annum,” he says.
“The first year of a kidney transplant costs $20,000 to $100,000, and the second and following years are around $5000 per annum… the ongoing cost in comparison is very minimal.”
With technology and medicine constantly advancing, organ donation is likely to steadily increase in success, especially if hospital systems improve.
A recent advancement in transplantation is ‘heart-in-a-box’, an organ care system which can keep an organ alive for several hours more than currently possible.
However, it seems, until hospital systems and the government work to reform transplant practises, the best the public can do to help is sign up to the register and ensure their wishes are known.