Andrew's artificial pancreas

Andrew is a leader in more ways than one. He’s among a small but growing number of New Zealanders with type 1 who are constructing artificial pancreas systems for themselves.

Most people with type 1 have a method of monitoring their glucose, and a method of administering insulin, and the two operate completely separately from each other. But would it be better if you could link these processes so that your real-time blood glucose levels automatically controlled exactly how much insulin you received?

Connecting a glucose monitor to an insulin pump like this requires some sophisticated technology, but, as many already know, this technology does exist. The end result is called “closed loop insulin delivery” or an artificial pancreas system (APS).

While the technology is out there, getting access to it through the conventional medical system can be difficult or impossible. However, the global #WeAreNotWaiting movement, led by people with type 1, is on a mission to change this.

In this country, an organisation called Nightscout NZ is leading the charge, and Andrew is one of Nightscout NZ’s founding members.

Andrew first came across the international #WeAreNotWaiting movement in early 2018. When he realised it was possible for someone to make their own APS, he seized the opportunity. “After ordering the various items needed, I successfully ‘closed the loop’ in July 2018 with a FreeStyle Libre; MiaoMiao (a device that converts the Libre into a continuous glucose meter, or CGM); a Medtronic 554 pump; and an 'OpenAPS' rig – a small computer device used to process all the data.

“The artificial pancreas system automatically adjusts basal rates and delivers bolus doses based on the CGM result (and recent history), insulin on board, and carbs eaten.

“While it's not a set-and-forget system, it’s helped to improve my control and taken a significant amount of manual calculations out of day-to-day life. I spend less time managing my diabetes and I get better results. I now wake up right on target every morning. I can trigger different blood-glucose targets based on what's happening in my Google Calendar – like automatically increasing my target blood glucose before going to the gym. And I enjoy more freedom and less stress, both in everyday life and when I’m active.

“It’s reassuring that my system’s actively working to prevent hypoglycaemia by shutting off the delivery of insulin if it predicts I’ll go low, as well as bringing my glucose levels down to avoid sustained high blood sugars.”

It does take some time to set up and learn how to use it, says Andrew, “but plenty of people who aren’t techy have done so successfully. The growing community worldwide as well as the presence of Nightscout NZ, means you don't have to do-it-alone.” He believes that “between community support and easy-to-follow online guides, anyone can get an artificial pancreas up and running in a short timeframe.”

You do currently need the financial resources to do it, though. “I self-fund the FreeStyle Libre sensors and also the FreeStyle Optium blood glucose test strips to allow for a higher accuracy blood glucose result. That gives me confidence that when calibrating my APS I’m able to achieve the desired control. These costs add up quickly.” For Andrew, “it’s a small price to pay given the additional flexibility and control gained and reduction of long term health risks.”

However, Nightscout NZ is well aware that many people with type 1 diabetes don’t have the financial resources to take advantage of recent technology. One of their aims is to advocate for funded access for all people with type 1.

Andrew adds that, “While DIYAPS is an unapproved and unregulated system, safety is the number one priority. Overall, I’ve experienced it as a much safer way to managing my diabetes compared to MDI (multiple daily injections) or a pump on its own.”

For more on Nightscout and the #WeAreNotWaiting movement,

Linked to blog ‘ Nightscout New Zealand’ and Andrew’s Story ‘From camper to leader’

**This article first appeared in the Winter 2019 issue of Diabetes Wellness magazine. Subscribe Diabetes NZ today to receive your copy.

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