Lachlan Ross describes his more than a decade-long battle with kidney failure as "very long, and very hard."
The 54-year-old from the NT remote community of Lajamanu has been lucky enough to receive a kidney transplant, meaning he no longer has to receive thrice-weekly dialysis treatments.
But, he said chronic kidney disease — which Indigenous residents of remote Central Australia are up to 30 times more likely to suffer from — has no quick fix.
"You get [a] transplant doesn't make you any better you know because you've still got the hard work of looking after yourself and the transplant and that's what a lot of people don't understand, they think a kidney is a cure, it's not."
Mr Ross now works as a mentor for others living with kidney disease at Darwin dialysis centre The Purple House, where Assistant Minister for Indigenous Health Malarndirri McCarthy announced today that people with the disease would now have more affordable access to a drug which slows its progression.
The drug dapagliflozin, also known as Forxiga, is already used to treat diabetes and heart failure, but will now also be available to people with kidney disease under the Pharmaceutical Benefits Scheme.
It would have previously cost renal patients more than $700 a year, with the expansion of the scheme meaning it will now cost $42.50 per script, or $6.80 for people with a concession card, from tomorrow.
"Chronic kidney disease takes a heavy physical, social and economic toll on First Nations communities, with Aboriginal and Torres Strait Islander people twice as likely to have the condition," Ms McCarthy said.
Kidney Health Australia chief executive Chris Forbes said it was a life-changing decision for thousands of Australians.
"Now we have more tools which GPs can work with to help slow the progression, to stop kidney disease from getting into kidney failure," he said.
"For all those people who have risk factors of kidney disease, they can talk to their GP, get a kidney health check and they can get in front of that silent killer."
Announcement comes too late for many
Forxiga works to slow the progression of kidney disease to prevent a patient from reaching kidney failure.
So, Mr Ross said it won't do any good for people like him — or the thousands of people who rely on dialysis to survive — because their disease had already progressed too far once they realised they had it.
Instead, he said there should be a focus on educating those most at risk about the disease before it's too late.
"It should have been done earlier, not when everything is starting to get worse, you know, because when you don't educate people in the community, things get worse, people don't know how to prevent the diseases they get," he said.
"There's no prevention, not much talking about prevention, and it's all about getting new drugs, getting more of that sort of stuff, what about educating people about prevention?
"Not being done here in the city and in the towns, but in the community."
Ms McCarthy, who suffers from polycystic kidney disease herself, agreed more education on kidney disease was needed. ''
"It needs communication…through every form possible, certainly through multi-cultural languages, First Nations languages," she said.
"This chronic disease is a silent disease and we need to make sure we're not silent in terms of letting people know they can prevent it."
Dialysis remains a heavy burden on remote residents
Kidney disease accounts for just over 10 per cent of all deaths in Australia.
And Indigenous people are four times more likely than other Australians to die from the chronic disease.
Having kidney failure is especially difficult for remote Territorians, who often don't have access to life-saving dialysis in their home communities and have to move away for treatment.
Purple House support worker Stella Bambra is responsible for helping patients who travel to Darwin for dialysis feel as comfortable as possible.
"I feel a bit sad for my Indigenous people, for my family. People feel lonely when they come into town for dialysis," she said.
"There's a big problem with stress and for family issues and with [sorry business] it's a really big problem."
Ms McCarthy said she was looking at ways to provide dialysis for more patients in their home communities.
"I now also have to look at assisting those people who are on dialysis and how we can assist them and help them try to stay on country and stay closer to country," she said.
