Gloria Friday was visiting her hometown of Borroloola a few weeks ago when she became sick.
Friday has kidney disease and now lives in Darwin, 700km away from the remote community, so she can receive the dialysis she needs three times a week. But separated from her country and her family, she gets homesick and returns occasionally.
“I just go for a couple of days; I miss one dialysis, I come up to Darwin and empty fluid,” she told BuzzFeed News. She can manage as long as she doesn't drink too much fluid, she said. But “the nurses [in Borroloola] want to have nothing to do with dialysis mob,” she said. “They’re very strict."
On this occasion, Friday said she was “overflowing with fluid”. She called Borroloola’s Community Health Centre for help.
"And then [the person who answered the phone] said to me, 'Well, I’m very sorry, we can’t do anything for dialysis patients'. I said: 'Why?'. She said: '‘You people ought to learn to look after yourself'.
"I said, 'Look, that’s not fair, you should come and check me out anyway'. That night, my life was threatening. I was short of a wind. And she wouldn’t come."
Friday said she sat up all night and flew back to Darwin the next morning, where she complained to federal senator Malarndirri McCarthy, who hails from Borroloola.
McCarthy’s office made a verbal complaint to the office of Northern Territory health minister Natasha Fyles, who undertook to investigate with a view to counselling the Borroloola clinic staff member. A spokesperson for Fyles confirmed an inquiry had been conducted, but declined to comment on its findings or outcomes. McCarthy's office has not yet heard back about the result of the investigation.
When BuzzFeed News contacted the clinic, it was referred to the NT Department of Health. Asked about Friday's claim, the department (which oversees the clinic) said confidentiality prevented it from commenting on specific patients.
Friday is one of many renal patients from remote communities forced to move to the NT's urban centres to receive the treatment they need to stay alive. Eighty percent of dialysis patients in the NT are forced to relocate from remote communities to urban centres.
Dialysis is expensive and complicated, and renal units are scarce. The Commonwealth and NT governments have also disagreed over who is responsible for funding remote dialysis.
Even if remote dialysis is available, for some people with other health issues it can be risky receiving treatment so far from hospitals. However leaving behind country and family can have debilitating psychosocial effects on Aboriginal patients, magnifying a sense of displacement.
"I feel so sad," said Friday, who moved to Darwin in 2015, leaving behind her husband Graham and family including five great-grandchildren. "I feel lonely. I miss my grandkids, I miss my partner. I miss hunting, fishing, going out on various places. I miss Borroloola and my family."
The separation of Friday’s family has also had financial consequences. She receives the disability support payment, but told BuzzFeed News she is currently repaying $100 a fortnight of a $7,000 debt to Centrelink, incurred because her partner Graham was working. Although he wants to work, Graham quit his full-time job as a sea ranger so that her payment would not be reduced, on top of her having to make the debt repayments. "If he were to continue to work, Centrelink would just wipe me clean off," she said.
"I don’t think that’s fair," she said. "I’m on the sickness benefit, how do they expect me to live? My partner’s got to live and pay rent and buy food too, and pay bills." She also said Centrelink did not notify her of the problem until the debt was an unmanageable amount, and that she was planning to challenge the debt.
A spokesperson for the Department of Social Services told BuzzFeed News privacy laws prevented them from discussing individual cases without consent. In general, they said that the income test uses the gross income of both people in a couple.
"Where a couple is living apart indefinitely, and unable to live together in their home as a result of illness, they may be considered as ‘illness separated’ and may be paid at the single rate of payment," the spokesperson said. "While the person may be paid at the single rate, the combined income and assets tests still apply."
Stefanie Puszka, a researcher with the Menzies School of Health Research and the Australian National University, told BuzzFeed News there was some evidence suggesting people who receive treatment in urban hospitals and treatment centres actually don’t live as long and get hospitalised at greater rates than those receiving dialysis in remote communities.
"The people that I work with tell me, ‘I’m not healthy in Darwin, what makes me healthy is having my family all around me'," Puszka said. "Patients describe to me experiencing a sense of health resulting from connection to people and land when they return to their communities, and nurses I have interviewed also recount stories of patients' health improving: blood pressure goes down, sometimes patients can be taken off medications."
One way to get back home is to learn to perform dialysis themselves, generally with a carer's assistance. But it can be difficult, and the only support patients get is on the phone. "They have to be very self-sufficient," Puszka said.
Borroloola has a renal unit with two chairs available for people who are able to self-dialyse. "I just don’t want to do it because it’s a bit risky for me," Friday, who has a cataract in one eye, said.
Another option is a kidney transplant, but it is difficult for Indigenous Australians to receive transplants, for reasons including institutional racism. Federal Indigenous health minister Ken Wyatt told BuzzFeed News the government was giving the Transplantation Society of Australia and New Zealand $2.3 million to establish a National Indigenous Transplantation Taskforce, "to drive improved access to the kidney transplant waiting list and better post-transplant outcomes for Indigenous patients".
Wyatt said dialysis was a state and territory government responsibility, but that the Commonwealth was providing $77.8 million over seven years for a range of renal support activities in remote NT, South Australia and Western Australia.
That includes $34.8 million for a new Medicare Benefits Schedule item, introduced in Nov. 2018, for dialysis treatment provided by health practitioners in very remote primary health care settings. This is "allowing Aboriginal and Torres Strait Islander with end stage kidney disease patients to dialyse as close to home as practicable", Wyatt said.
It also includes $33.7 million for the Purple House, an Indigenous-owned and run health service that operates 14 remote dialysis clinics and also runs the Purple Truck, a mobile dialysis unit. Wyatt said the funding would support the Purple House's expansion into more communities.
Gundimulk Wanambi is one of the lucky ones who got to go home. The Yirrkala woman was diagnosed with kidney disease in 2010, and she moved to Darwin.
Back then, Yirrkala, 700km from Darwin in Arnhem Land, had no dialysis unit. She lived in a hostel, then in public housing. But then Yirrkala got a dialysis service, which the Purple House operates in partnership with the Miwatj Health Service. Its two chairs and two nurses allow six patients to get treatment while living in community.
Wanambi now lives back in her home in Yirrkala with family. "I done my garden there," she told BuzzFeed News. "I’m a house-proud person. I turn up, do the garden, even my daughter do it.
"I’m back in community which is really good," she said. "Good and healthy and close to the family."
Hannah Ryan is a reporter for BuzzFeed News and is based in Sydney.
Contact Hannah Ryan at firstname.lastname@example.org.
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