Posted August 02, 2015 10:33:57

In a room decorated with photos of kingfishers, ducks and eagles, Morgan Mununggurr has a dialysis machine named after his totem - Mana, the shark.

Three times a week he visits the Miwatj Health Clinic in Yirrkala community outside of Nhulunbuy, or about 30 minutes drive from the site of the Garma Festival, and sits in a chair hooked up to a haemodialysis blood filtering machine.

It takes about four-and-a-half hours to clean his blood. The machine clicks and whirrs and Mr Mununggurr, formerly a keen hunter, eats buttered toast and talks about the "unlucky" ones - those who have to leave their families and travel to Yirrkala or Darwin from even more remote communities.

Yirrkala has the only haemodialysis treatment outside of Darwin in the Top End of the Northern Territory - a region with the highest rate of kidney disease in the world.

Though kidney failure is the most pressing health problem affecting East Arnhem Land, at the Garma Festival it has largely been overshadowed by discussion of the Adam Goodes booing saga and the question of recognising Indigenous people in the Australian constitution.

We were homesick every day.

Malawuy Yunupingu

A panel discussion on the topic was cut short for a ceremony awarding an honorary doctorate to Gumatj clan leader Gallarwuy Yunupingu.

His elder brother Dr Yunupingu, who was the former lead singer of Yothu Yindi and remembered as a "giant among his people", died two years ago after a long battle with kidney disease.

On the panel, Dr Yunupingu's widow Malawuy Yunupingu described the "nightmare" of moving to Darwin five years ago for treatment.

At the time there were no dialysis chairs in Yirrkala.

"We were homesick every day," she said.

"That's how much we were missing home, and also missing the family."

The Yirrkala renal clinic has two machines - the one next to Mr Mununggurr is named after the totem of Dr Yunupingu - Baru, the crocodile.

Dr Yunupingu and Yalmay spearheaded the initiative to get two machines in Yirrkala. It meant he could go home and, when he died, it was on Gumatj land.

Fly in, fly out dialysis clinic suggested

Healthcare providers have advocated for more remote dialysis.

Eddie Mulholand, chief executive for local health care provider Mitwatj Health, proposed a hub-and-spoke model of treating dialysis in remote communities.

He suggested having two renal nurses in each community of north-east Arnhem Land and opening a fly in, fly out dialysis clinic out of the regional centre of Nhulunbuy.

About 1,000 people in north-east Arnhem Land have some level of kidney disease, and the rate is escalating.

Mr Mulholand estimated that without proper funding another 61 people in the region would develop end-stage kidney disease requiring similar treatment to Mr Mununggurr.

Treatment facilities are stretched to capacity. The lack of local dialysis machines means Yirrkala patients take turns travelling to Darwin for treatment, so others can receive treatment in Yirrkala.

But Mr Mulholand acknowledged more treatment was not the only answer - funding was also needed for prevention of the disease itself.

The Federal Government this week announced more than $25 million for dialysis services predominantly targeting Indigenous people living with chronic kidney disease in central Australia.

Ronald Morgan from the Kimberley region of Western Australia described how his mother donated him her kidney when he was five. It failed after 23 years of service and, seeking treatment, he moved his family 3,000 kilometres to Perth, where he struggled to find work and provide for his children.

"Even though I was sick I still had bills to pay," he said.

"I am still yet to get back to my home."

• Photo: A young dancer has the number 37 adorned on his back to honour footballer Adam Goodes. (ABC News: James Purtill)
• Photo: A man dances at the Garma Festival in north-east Arnhem Land wearing a Sydney Swans stripe in support of Adam Goodes, on Friday July 31, 2015. (ABC News: James Purtill)
• Photo: Galarrwuy Yunupingu receives an honourary doctorate at the 2015 Garma Festival. (ABC News: James Purtill)
• Photo: Dancers perform to celebrate Galarrwuy Yunupingu receiving and honourary doctorate from the University of Melbourne. (ABC News: James Purtill)
• Photo: Indigenous leader Galarrwuy Yunupingu receives an honourary doctorate from Melbourne University. (ABC News: James Purtill)
• Photo: A dancer shows his Sydney Swans stripe in support of Adam Goodes at the Garma Festival in Arnhem Land on July 31, 2015. (ABC News: James Purtill)
• Photo: A woman dances at the Garma Festival in north-east Arnhem Land on July 31, 2015. (ABC News: James Purtill)
• Photo: Indigenous dancers perform at the Garma Festival in north-east Arnhem Land on July 31, 2015. (ABC News: James Purtill)
• Photo: A man dances at the Garma Festival displaying a Sydney Swans stripe in support of Adam Goodes on July 31, 2015. (ABC News: James Purtill)
• Photo: Children watch the dancing at the Garma Festival in north-east Arnhem Land on July 31, 2015. (ABC News: James Purtill)
• 0Photo: A young dancer at the Garma Festival in north-east Arnhem Land on July 31, 2015. (ABC News: James Purtill)
• 1Photo: Children get ready to dance at the Garma Festival on July 31, 2015. (ABC News: James Purtill)
• 2Photo: Indigenous dancers display the number 37 in support of Adam Goodes at the Garma Festival on July 31, 2015. (ABC News: James Purtill)

Topics: liver-and-kidneys, indigenous-policy, yirrkala-0880

More stories from Northern Territory

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For Yalmay Yunupingu, moving to Darwin for five years so her husband, the Yothu Yindi frontman and renowned Yolngu leader Dr Yunupingu, could receive dialysis for his end-stage kidney disease was a nightmare.

Looking after her husband was no easy job, and it was compounded by the separation from their home.

"We both tried hard, looking after each other, but sometimes it was very hard ... it was a nightmare," she told a panel on renal health at the Garma Festival in Arnhem Land on Saturday.

"I was homesick nearly every day; that's how much we were missing home, and also missing the family."

Chronic kidney disease is a huge problem for Aboriginal people living in the remote Northern Territory, and many sick people choose to stay on country and not receive dialysis because they do not want to be isolated and alienated from their families, and because of cultural obligations.

The federal and NT governments this week announced more than $25 million in funding for dialysis patients in central Australia to be treated in their communities, but it remains to be seen whether there will be money for patients in the remote top end.

West Australian man Ronald Morgan had his first kidney transplant when he was five, donated by his mother.

It held out for 23 years before it failed and he had to move his family 3000 kilometres from Wyndham to Perth, disrupting his children's education and struggling to find work while he received treatment.

"The biggest thing about being sick is looking for support," he said.

Darwin-based kidney specialist Paul Lawton said he had "seen enough of the distress of Aboriginal people on dialysis, particularly the dislocation story".

Dr Lawton said a lot of the most severe cases of kidney failure could be prevented through good resourcing of primary health care services in remote communities.

Eddie Mulholand, chief executive of local health provider Miwatj Health, estimates there would be another 61 people needing dialysis in northeast Arnhem Land without proper funding.

As it stands, patients from Yirrkala are on a three weeks on, three weeks off rotation getting treatment at home and in Darwin, because of a lack of local dialysis chairs and a desire to stay close to home for as long as possible, where ties to country are very strong.

Gundumuk, a local patient, said she was happy to be able to receive at least part of her dialysis at home, which she administers herself.

"The mission is for us that we come together, Yirrkala mob, how we can get back home, because home is something we leave behind, rushing to Darwin just because of our chronic disease," she said.

"I feel really happy here at home, glad to see my family, glad to see my grandkids."

Alan Cass, of the Menzies School of Health Research, said kidney disease could fracture communities as elders get sick and are relocated together with their families.

"These are community leaders; when one person moves from Yirrkala to Darwin often a family of five goes with them," Dr Cass said.

"The impact of this disease is on the individual, on a family, on children, who have a disrupted education, on employment ... there are times when things are so intertwined we have to address health issues in order to get the outcomes we want in education, employment and community development."

AAP

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