More than 1 million Australians with diabetes can't access a subsidy for costly 'life-saving' device
For Edwina Murphy, living with diabetes has been a painful daily reality since she was 12 years old.
She describes her experience as "getting sick, being in and out of hospital for years".
Like most of the 1.5 million Australians living with diabetes, the 22-year-old from the Northern Territory has to used a finger-pricking device to measure her blood sugar two to three times a day.
The relatively cheap measurement provides a blood sugar level reading at the moment the blood is sampled.
"I used the pricker for six or maybe five years … it definitely damages your skin. I don't use the pricker [anymore] because it hurts," Ms Murphy said.
She said access to newer sensor technology has changed her life.
"It has a plastic needle, it won't hurt. Just clip it in and connect it to your phone."
This continuous glucose monitoring (CGM) gives real time feedback on blood glucose levels, making it easier for patients to change their behaviour — which ultimately leads to better outcomes.
The device has the potential to save lives but each unit costs thousands of dollars, making it prohibitively expensive for patients and costly for governments to subsidise.
A year-long federal parliamentary inquiry into diabetes has looked at management of the condition and is set to table its report on Wednesday.
Expanded funding for CGM will be one of the considerations.
Real-time monitoring
CGM devices attach to a person's arm and feed back blood sugar level data to their phone or a reader wirelessly for up to 14 days.
"They measure what the tissue sugar level is, and they measure that every minute and then you can put it into a graph and see what's happening over a period of 14 days," Glen Maberly from University of Sydney's School of Public Health said.
The technology is changing the way people with diabetes understand their condition, he said.
"If you are pricking your finger occasionally, you get a glimpse of what's happening, but with a CGM you open the curtain up as if it's a full day and you can see exactly what's happening in real-time."
According to Professor Maberly, people using CGMs can change their behaviour because they gain a better insight into their blood sugar.
"We can see enormous benefits … as they use them, they actually begin to change more and more their behaviour and we actually get better and better outcomes."
Angela Titmuss is the only paediatric endocrinologist in the NT.
For years, she has looked after Edwina and her brother Waylon who also has type 2 diabetes.
"It's really helpful to titrate medicines up really quickly to get to the optimal dose of the medication, so we can target sugar levels to prevent complications," Dr Titmuss said.
Complications from diabetes could lead to amputations, cardiovascular issues, kidney failure and even death.
Only type 1 diabetes subsidised
A CGM sensor could cost anywhere from $3,000 to $5,000 a year.
The figure rises to $8,000 if the person requires an insulin pump.
While CGM sensors are subsidised for people with type 1 diabetes, they are not subsidised for those who have type 2 diabetes, who represent 85 per cent, or nearly 1.3 million people in Australia, according to the National Diabetes Services Scheme.
Edwina only has temporary access through a compassionate application made to a sensor company in Australia.
Despite the benefits of CGM, 19-year-old Waylon can't get access.
Dr Titmuss said many of her young patients with type 2 diabetes cannot afford it.
"They're not subsidised, so in order to access that, we need to get compassionate access from the companies.
"And we need to apply for every young person … and that would usually only be giving them one to two months of supply."
Type 2 diabetes is disproportionately represented worldwide and in Australia, with disadvantaged and vulnerable communities suffering from it the most.
"Diabetes is highly prevalent in Aboriginal and Torres Strait Islander people, the highest prevalence in the world in recent years, as well as Māori, Pasifika young people and refugee young people," Dr Titmuss said.
Diabetes Australia CEO Justine Cain said access to "life-changing and life-saving" is difficult for many people with diabetes.
"We want to make sure that as many people with the medical need as possible can get it, and let's make sure that we align policy and pricing to enable that to occur," she said.
Potentially 'billions' in savings
Chair of the standing committee on health MP Mike Freelander, led the parliamentary inquiry and received submissions from hundreds of experts and people with lived experience of CGM across the country.
Experts like Professor Maberly, Dr Titmuss and Diabetes Australia are all calling for increased subsidies for CGM devices.
"We know there are very large numbers of people with type 2 diabetes, so we have to look at the cost of widening access," Dr Freelander said.
But he's also aware subsidising it for everyone with type 2 diabetes would be "cost-prohibitive" for the government.
An argument is being made that a short-term government investment in CGM subsidies now, could save the healthcare system "billions of dollars" in diabetes management in the long run.
A Diabetes Australia report says diabetes costs the healthcare system $3.4 billion a year.
Ms Cain said international evidence showed people who have CGM have an 86 per cent reduction in ambulance call-outs and a 60 per cent reduction in hospitalisations.
Professor Maberly said "diabetes is the largest burden of disease and is costing an absolute fortune and it's only getting worse, so we have to do something dramatic to make a difference."
He estimated it costs the healthcare system in Western Sydney about $18,000 a year to treat someone with type 2 diabetes.
"If we can add a CGM which costs about $100 every two weeks, then we can begin to reduce the burden on the hospital system," Professor Maberly said.
He also believes it's not necessary for people with type 2 diabetes to be wearing a CGM all the time.
"We've been having our patients wear it four or six times and getting really good outcomes.
"So, I'd rather see CGMs made more widely available to a greater number of people but maybe only using it once a month. And that would be a way to keeping the cost down."
Dr Freelander said he can see a role for CGMs to be subsidised for one month in three, or one month in six.
The inquiry is set to publish its report on Wednesday, likely recommending wider access to CGMs for those who need them the most.