Malarndirri McCarthy (NT, Australian Labor Party) Share this | Hansard source

I would just like to share with the Senate an editorial that I wrote in the Sunday Territorian of 4 August 2019, and I take note of all the Australians who suffer from polycystic kidney disease, or PKD, and also give tribute to the PKD foundation and to the DonateLife foundation as well.

TODAY is the final day of Donate Life Week, a campaign urging Australians to register to become organ and tissue donors, and encourage friends and family to do the same.

For many readers, this week may be the first time you have thought about donating an organ, or considered discussing the issue with loved ones.

In the Northern Territory in 2018, fewer than 13 per cent of people were registered on the Australian Organ Donor register. For me, it is an issue I am acutely aware of and live with every day.

This week in the Senate—

this was in August—

I intended to speak about kidney disease and the high need for organ transplants in the NT. As a federal senator for the Northern Territory, I know I am in a privileged position to be able to draw attention to issues which might not otherwise receive the attention they deserve. It's why I do this job: to help make a difference.

Instead, I write this from a hospital bed in Canberra as I recover from a flare-up of my own kidney disease that has left me in pain.

The disease I live with is polycystic kidney disease or PKD, a lifelong genetic disease that worsens over time as fluid-filled cysts form and enlarge both kidneys. There is no cure.

The discomfort and often pain that comes with PKD is frequent for me. But I believe I can be a voice for other sufferers of kidney disease and in particular, Territorians desperately needing organ donations.

The ultimate destination for PKD is renal dialysis or a kidney transplant, so campaigns like Donate Life are immensely important and immensely personal to me.

Registering to become an organ donor makes a huge difference to the lives of patients and their families. It is an extraordinary act of generosity to give the gift of life—

often to someone you have never met. I know it is something which would never be taken for granted by recipients.

Like many Aboriginal and Torres Strait Islander people, I have seen multiple family members affected by renal disease end up on dialysis far from home.

My beautiful mum struggled most of her adult life with kidney disease, as well as other health complications like rheumatic heart disease and lupus. She died after several years of dialysis treatment, her chances of a kidney transplant pretty much zero.

Esteemed kidney specialist Dr Paul Lawton—

mum's clinician—

now with the Menzies School of Health Research, monitored Mum's condition in her final years of life as she endured renal treatment far from home in Darwin.

Dr Lawton now monitors mine. He also works with the clinician who first identified my PKD while I was working as a journalist for NITV/SBS in Sydney—

prior to my becoming a senator.

My youngest brother, just 40 years old, has had to move from Borroloola to Darwin for three months to begin dialysis.

His adult daughters are learning how to do haemodialysis to assist him when he returns home. His wife drives the nearly 1000km every weekend to see him and then returns to her job—

in aged care—

in Borroloola.

Once he is able to return home, my brother will be in a fortunate position in comparison to many. Nationally, only 12 per cent of indigenous people on dialysis get treatment at home, compared to 21 per cent of non-indigenous people.

Many indigenous people from remote communities will end up on dialysis in Darwin or Alice Springs—far from family, community and homelands.

Treatment is required for at least four hours, three days a week for the rest of their life. Making a return journey home for the weekend is unlikely, and the chances of maintaining a job impossible. Because of this, people requiring dialysis might ultimately make the tough decision to quit treatment and return home to live their final days on country.

For those of us who've lived with the trauma of seeing family members on dialysis and then passing away from complications of kidney disease and dialysis far from home, it's incredibly challenging and a heart-wrenching personal problem.

Indigenous Australians nationally are seven times more likely than non-indigenous to need dialysis or a transplant.

Of the 750-800 patients on dialysis in the Northern Territory, roughly 90 per cent are indigenous and of those, three-quarters come from remote communities.

It is a disease rooted in poverty, often starting before birth, with nutrition issues in the mother affecting kidney development in utero. The lack of affordable nutritious food in remote communities, poor education on healthy living, overcrowding and poor health hardware such as running water for bathing are all factors leading to kidney disease.

Yet of the more than 1000 Australians who receive a new kidney each year, fewer than 40 are Aboriginal or Torres Strait Islander. The number of indigenous people getting transplants should be much higher.

I would like to express our heartfelt thank you to those people, and their families who have donated kidneys and changed the lives of people needing a transplant.

My family's story is just one story. I'm sure readers know of hundreds of Territory families doing similar trips to Darwin, Alice Springs, Katherine and Tennant Creek in preparation for renal treatment.

This weekend is the 11th anniversary of my mum's death. I'm proud to say I've inherited her resilience and determination to do the best I can for others who also suffer from renal disease.

Please, talk to your families, especially during Donate Life Week. Register at donatelife.gov.au. And support organisations like Herd of Hope, who support patients in rural and regional Australia in areas requiring organ donation.

I just want to say that there are 25,000 Australians who suffer from PKD. There is no cure. There is not enough research on and understanding of this wretched disease which impacts people in many different ways, with impacts on their kidneys and on blood pressure. Just to get to ordinary, day-to-day events requires a great deal of management.

I do have to say that there are terrific people at the Menzies School of Health Research, and nephrologists around the country who do amazing work. I just want to say thank you to each of you, and especially to the board of PKD Australia; you are doing everything you can to create greater awareness. But it does need so much more.

Just recently, 4 September was PKD Awareness Day. Again, I think it's just another wretched part of the disease that impacts Australians that we just have to put so much more energy and research into, and I certainly am enormously grateful to those people who do work in that area.