Readers in Australia will have seen the Australian Story: Message from Mandaway last week about Mandawuy Yunupingu, the lead singer and front man for the world famous Yothu Yindi. Like many of us, his long term kidney failure has reached end stage and he’s joined the BigD club.
But unlike most of us, Mandawuy is an Aborigine. And for Australia’s indigenous population (and I suspect most indigenous populations around the world), they do the BigD tough.
Why? Because it affects many more of them (nine – and up to 30 times in some remote areas – the national average,) and many live hundreds or even thousands of Ks from a dialysis unit.
This chart from the Fred Hollows Foundation shows the relative incidence of end-stage renal failure rates between the Aboriginal populations in the Australian States and territories and in the non-Aboriginal population. That’s right, they are the orange columns. In fact, what is shows is that renal failure is an epidemic amongst Aboriginal Australians in remote areas, especially the Northern Territory and Western Australia.
The Foundation says that the rate of death from kidney disease among Aboriginal and Torres Strait Islander people is:
“ …approximately nine times the total Australian rate. In the Barkly region of the Northern Territory standardised end-stage renal disease (ESRD) incidence among Indigenous Australians is up to 30 times the national incidence for all Australians. The number of dialysis treatments in the NT is doubling every two years.
“The health service costs of this rapidly rising epidemic are a major demand on resources. Projected cost of medical services required in the next five years for the treatment of end-stage renal disease in the Northern Territory is estimated to be $50 million.
“The current epidemic is probably explained by the confluence of many risk factors over a short time period, associated with dramatic lifestyle changes and serious socioeconomic disadvantage.”
Doing it Tough
Mandawuy lives in Yirrkala about 1000km (600 miles) from Darwin, so he flies in three times a week. His new BigD life involves sitting at the machine or travelling to or from it. Like most of us, he had to work out how the deal with it. It took him a while, but he’s there now. With his wife, Yalmay, he has been training for months to use a dialysis machine at home. He hopes he will have a machine in Yirrkala by Christmas. At least that will give him back his life between sessions.
His is not an isolated case. Just today, 1 November 2009, The Age newspaper reported that the celebrated artist, Patrick Tjungurrayi has been told he must fly from his home at Kiwirrkurra in the western desert region of Western Australia, to Perth, more than 1,800 km away, for dialysis. What’s more galling in this case is that Mr Tjungurrayi helped set up a dialysis centre is a regional centre just (just) 250km (155 miles) from his home and is not allowed to go there because it is not in his home state, but across the border in the Northern Territory.
Let’s put that in perspective. Imagine flying from Brisbane to Melbourne, or Des Moines, Iowa to New York, or Rome to London three times a week for three hours of dialysis, for the rest of your life.
I’m not sure how well I’d cope. And many don’t. They go to their centre irregularly, often hugely overloaded with fluid, and very unwell. They leave sick and washed out; feel Ok for a day and lousy until the next visit.
While some of this behaviour is a result of depression and lack of education, it is overwhelmingly an infrastructure problem. We need to look at new ways of supporting remote people needing the BigD; something out of the box.
India has had a similar problem, not with dialysis, but with suicide. There has been an epidemic of farmer suicides across the country. It was simply not possible to send thousands of trained counsellors and pshchologists around the country, so they have taken a radically different approach. They have identified and trained one or two local women in thousands of villages, to act as counsellors. It’s not perfect, but it is working.
We need to find a similar solution, using local people in their community. For example, set up one- or two-chair “LittleD” units all around remote areas, using trained locals to do the sessions. Or develop mobile dialysis units, vans or trucks, staffed by local people, that visit remote areas every few days.
People in remote areas should not have to do the BigD so tough. Some smart, practical action, like a pilot Mobile Dialysis Unit run by locals could change their lives. The WA or NT Departments of Health would be a good place to start.
And I know that the BigD family are keen to help.