The growing number of type 1 diabetes ‘loopers’ who are building their own hybrid closed loop systems deserve support rather than disapproval from health professionals, according to Diabetes Australia.
There are already more than a hundred people with T1D in Australia who have built and programmed their own DIY ‘artificial pancreas’ systems because they are frustrated at being neglected and ‘left behind’ by manufacturers of insulin pumps and CGM systems, the group says.
In a new position statement, Diabetes Australia says that while it does not endorse the DIY technologies, health professionals should continue to support and care for people who choose to build their own systems.
Launching the statement at ADC 2018 in Adelaide, representatives of Diabetes Australia said it was needed to address the swelling #WeAreNotWaiting movement of T1D patients who were banding together to share technology, software information and skills to build DIY hybrid closed loop systems.
Cheryl Steele a Melbourne-based diabetes educator said there were currently three major DIY artificial pancreas systems (DIYAPS) that incorporate an insulin pump, a CGM and software system that allows a smart phone to monitor and control insulin delivery.
She said patients were able to acquire the necessary devices and equipment for a few hundred dollars and were doing so because commercial manufacturers only had expensive ‘one-size fits all’ systems available in the US market.
In Australia, loopers were supported by Facebook groups such as “Aussie Aussie Aussie Loop Loop Loop” and also in the community though ‘build parties’ at which she said would-be loopers get together in a classroom with wi-fi to help set up interconnectivity and troubleshoot while building their systems.
“Last year when I presented about this at a diabetes conference I got a mixed reaction with a lot of scepticism, fear and concern [about looping]. But this year the attitude is changing, people are more open, willing to engage and learn,” she told the limbic.
“And hopefully this new position statement will help break the ice and get across the message that doctors do not need to be afraid of it, and they should engage with and support patients who choose to go down that path,” she said.
Also speaking at the launch of the position statement, Diabetes Australia CEO Greg Johnson said the DIY technology movement had arisen because the diabetes technology industry had failed to develop interconnectivity and sharing of data.
He said the Diabetes Australia statement recognises that DIY technology is highly experimental and that patients use such systems at their own risk.
The position statement also warns that devices are not approved by regulators for use in Australia and thus they may create medicolegal risks for health professional and cannot be recommended.
“However if a person with type 1 diabetes (or a parent or family member) chooses to build a DIY system, they must continue to receive support and care from their diabetes healthcare professional and the health system,” the statement advises.
“Our fundamental view is that we need to be open about this, we need to make sure we are talking about the issues of interconnectivity and how information is shared across devices.”
“All that can be done in a way that is confidential and controlled by the right people – the person with diabetes and their chosen healthcare professional. None of it needs to be inappropriate or something that leads to us blaming or vilifying people,” he said.