Selina and Rhonda Bob await a life-saving phone call – one that could take years.
Their kidneys are failing and they hope they don’t have to wait too long for the organ transplant list.
“I felt sad when I heard the doctors tell me you’re going… being in the kidneys [failure] soon. I thought, ‘You must be lying’,” Selina said.
Each week, the sisters are strapped to a chair for 16 hours while their blood is pumped from their bodies and filtered through a dialysis machine.
The couple were both diagnosed with diabetes – a disease that can damage the kidneys – at a staggering young age.
And in this isolated part of the world, these sisters are not alone in their prognosis.
New research has found that the rate of diabetes in Central Australia is among the highest ever seen worldwide – and they are getting worse, with more people being diagnosed at a much younger age each year than ever before.
The study, published in the open access medical journal BMJ Open, analyzed seven years of health data from more than 21,000 Aboriginal people from 51 remote communities in the Northern Territory.
Lead author is Matthew Hare, an endocrinologist at the Royal Darwin Hospital and senior research officer at Menzies School of Health Research.
He said the new research revealed a growing diabetes epidemic in remote NT communities that was “unprecedented in terms of prevalence.”
“Diabetes rates in these remote communities are increasing to such an extent that now 29 percent of adults in remote Aboriginal communities have diabetes, and this is largely type 2 diabetes,” said Dr. hair.
“The findings of our study were of particular concern for the Central Australia region, where communities have diabetes prevalence rates of up to 40 percent of adults.”
dr. Hare said the last time this type of investigation was conducted was in 2012, and things have gotten much worse since then.
Diabetes no longer a disease of the elderly
Until now, diabetes was thought to be a disease that mainly affected older people, but Dr. Hare said that type 2 diabetes is increasingly common in children.
“We’ve seen cases diagnosed as early as age four,” said Dr. hair.
“And that’s type 2 diabetes, which we previously thought was a condition that’s mostly seen in adults.
“We find that the average age at which type 2 diabetes is diagnosed is in the mid-thirties, which is decades younger compared to national data.
“If you look at the Australian population, most people diagnosed with type 2 diabetes are in their 60s or 70s.”
Co-author Dr Amy Rosser, a senior remote physician in a desert community about 300 miles from Alice Springs, said Aboriginal people aged 20-39 in remote parts of the NT were 26 times more likely to develop type 2 diabetes than people of the same age in the national Australian population.
Epidemic related to effects of colonization
dr. Hare said there were numerous drivers behind the growing epidemic, including the intergenerational effects of diabetes during pregnancy and the social and economic inequalities that many people in remote communities still experience today.
“But really, we think this epidemic is largely based on the effects of colonization and the dramatic changes in way of life that have brought about many people in remote Aboriginal communities,” he said.
Selina and Rhonda Bob said diabetes ran in the “family line”.
“[Our mother] went through the kidneys,” Selina said.
“We found out we have diabetes when we were young…I found out when I was 18 years old.”
It meant the couple were eventually forced to leave their home and family because their community of Areyonga, like many remote places in the NT, did not have access to dialysis treatment.
Urgent need for prevention strategies
The top doctor from one of the most important Aboriginal health agencies in Central Australia, Dr. John Boffa, said he rarely saw diabetes in his patients in the late 1980s.
But today his big challenge is to close the gap in life expectancy caused by preventable chronic diseases.
While the statistics seem dire, the chief medical officer of the Central Australian Aboriginal Congress said there was good news.
“Diabetes is a potentially reversible condition,” he said.
“And there are significant numbers of Aboriginal people who have completely reversed their diabetes, got off all their drugs by losing weight.”
He said bariatric surgery was one way people in Central Australia lost weight, despite the high price tag that came with it.
“Some of those people pay close to $30,000 to access that surgery, and they use pension and other funds to do that because the wait time in public hospitals is extremely long,” said Dr. boffa.
dr. Hare said that while the government put a lot of money and resources into diabetes treatment, it was time to invest in prevention strategies in collaboration with members of the Aboriginal community.
“We need to improve access to fresh, high-quality and nutritious food and tackle the challenges of education and employment [and] crowded homes that are all social determinants of chronic conditions like diabetes,” he said.
The Bob sisters are living proof that a healthy lifestyle goes a long way in managing diabetes.
Every week they dance, beat and lift the sugar during exercise classes at the Purple House, a health service owned and run by indigenous peoples in Alice Springs, and they’ve never felt so good.
And while the workouts won’t repair their kidneys, exercise and healthy eating can reverse their diabetes.