The $10,000 price tag for latest diabetes technology leaves many children with type 1 going without

Automated insulin delivery is the gold standard in type 1 diabetes management for children, but a lack of subsidies and the $10,000 price tag means many WA kids go without. The hybrid closed-loop pump is recognised as the most effective method to improve diabetes management, but the technology can cost up to $10,000 and is restricted to those with expensive health insurance. The lack of access meant that when Olivia Saint was first diagnosed, her parents Yvette and Jack Saint had to finger-prick her every two hours to check her glucose levels and then administer insulin injections. Ms Saint said having to finger-prick made learning how to manage her nine-year-old daughter’s diabetes much more stressful. “We went straight to injections and finger pricking,” she said. “We didn’t have access to the technology, which is a bit of a shame because it would have made the transition a lot easier. “Liv was really resilient, but it was a lot she went through. She had to have multiple injections and had bruises everywhere, and we would have to wake her if she was low to give her treatment. “It was just really stressful not having access to the latest technology.” Olivia is now using a continuous glucose monitor — a small wearable sensor that automatically measures glucose levels. The HCL pump means her diabetes is automatically managed. The monitor is subsidised for people with type 1 diabetes, but having access to the pump has come at a cost for many families like Olivia’s due to it not being subsidised by the Federal Government. The Saints have to spend $700 a month on insurance in order to access the technology. “When she was diagnosed we didn’t have private health, so we then had to get private health because we didn’t have access to other funding for the pump,” Ms Saint said. “The pump was $10,000, so we couldn’t just afford to take that out. “When we finally got the technology, we were wondering how we survived without it. It’s just amazing to have her levels all the time and not have to finger-prick.” The technology also means Olivia can self-manage her diabetes while at school, rather than having to be pulled out of classes for a teacher to check. Olivia’s little sister, Emily, has now tested positive to diabetes antibodies, meaning she will eventually develop type 1 diabetes. Ms Saint said if the HCL pump became subsidised for children with type 1 diabetes it would take off the stress of having to spend thousands of dollars a year on health insurance. “If Olivia didn’t have diabetes we wouldn’t be paying that much in insurance, so it would be good to have those pumps subsidised for families that can’t afford it,” she said. Diabetes Australia is calling on the Federal Government to invest $200 million over four years in increased subsidies for insulin pumps and CGMs. “Right now, insulin pumps are unaffordable for many people, including families with children living with type 1 diabetes. This has to change,” Diabetes Australia chief executive Justine Cain said. “At the moment, people living with type 1 diabetes are eligible for a subsidy from the Federal Government for a CGM device. That’s half of a HCL system. “If we can get insulin pumps subsidised as well, that will go a long way to increasing access to this life-changing technology, which is now considered standard care around the world.” Perth Children’s Hospital diabetes centres and the Kids Research Institute have been working to fix the lack of access by researching the impact and cost-effectiveness of making these devices available and free for all immediately after being diagnosed. The study will take place over three years, allowing every child newly diagnosed with type 1 diabetes at PCH to receive an HCL pump. The call for more subsidies comes after Diabetes Technology Network UK chair Pratik Choudhary warned Australia was so far behind that people with diabetes were missing out on the latest management tools. “I think a lot of energy is going towards getting more subsidies for CGM, so I don’t really hear a noise about automated insulin delivery hybrid closed-loop systems,” he said when he visited Perth in August. “We’ve got a five-year rollout plan where we’ve been given the target by the English government to make sure all people with type 1 diabetes have access to closed-loop therapy. “Diabetes has a 10-year reduction in life expectancy and I think for people diagnosed in the UK today who get access to the hybrid closed-loop therapy that just won’t be the case. We won’t see that reduction in life expectancy.”