Ashley has type 1 diabetes. Like more and more patients, she decided to take charge of her future rather than wait for solutions from the health industry. Thanks to technology and the open source movement, it is now possible to “hack” your disease:
Most people are no stranger to diabetes, a disease in which the body either can’t produce insulin or can’t properly use the insulin it produces. Nearly one out of ten people in Canada have diabetes, and of those, about 5–10% have type 1, where the insulin-producing beta cells in the pancreas have been killed off. This type of diabetes is sometimes also referred to as insulin-dependent diabetes, or even juvenile diabetes, as it usually develops in children.
I was one of those lucky children. And I suppose I truly was lucky, because a wide variety of synthetic, injectable insulins have always been available to me. I started out as most type 1 diabetics do, checking my blood sugar by “finger pokes” and injecting insulin with a syringe. The amount to be injected was based on an ever-changing mathematical formula that seemingly had to take into account every variable in my life.
However, Frederick Banting, the co-discoverer of insulin, reminds us that “insulin is not a cure” — even with injections, there is the constant fear of blood sugar levels rising too high or falling too low, contributing to diabetic complications. “Dead in bed” was a term that caused me great anxiety and fear as a child, where a diabetic would go to bed seemingly fine and pass away overnight.
As I became an adult, I switched from injections to an insulin pump. An insulin pump attaches to the body via a cannula and can be programmed to perform all of the math. I also adopted CGMs (Continuous Glucose Monitors): a tiny device that attaches to the body and tests blood sugar every five minutes. If blood sugar is low or dropping too quickly, it beeps an alert.
MiniMed Revel insulin pump developed by Medtronic. © iStock.
Eventually, though, I got to the point where I needed more help. I started having severe lows, day and night, and my doctor and I both struggled to figure out what was going on. The beeps weren’t enough to wake me during the lows. I was also working remotely and therefore spent a lot of time alone — I realized that having access to my CGM data wasn’t useful if a low was so severe that I was unable to help myself.
That’s when I stumbled upon something called CGM in the Cloud, and first heard of #WeAreNotWaiting: a group of diabetics and the loved ones of diabetics who wanted the ability to put their CGM data in the cloud, where they could access it from anywhere. They had created an open source project where you could collect your CGM data via a Bluetooth receiver and a mobile app and upload it every five minutes to a MongoDB database. The data could then be used however you liked: display it on a website and allow others to check in, display it on a Pebble, analyze it for trends, etc. The options were only as limited as your creativity.
I got to see how others were using their data and it was incredibly eye opening. A lot of the contributors were parents of type 1 children who simply wanted to be able to monitor their children’s blood sugar levels at a distance. That meant that parents could stay in their own beds all night. They could check on their child’s well-being while at work, with a simple glance at their wrist. And the kids could now have freedom like they had never experienced. They could stay away from home longer, check in less frequently. They could go to sleepovers, or travel with their sports teams, or go to summer camp. They could be kids.
On a technical level, this project reignited my love of coding. It sparked my interest in open source — I actually created my first GitHub account just to fork the project. I took my first steps working with cloud technology, I learned about NoSQL databases, I got to experience Node.js long before I had the opportunity to do so professionally, and I had the chance to experience the power of large sets of data.
But even more than that, I witnessed the real, tangible benefit of what open source and technology as a whole can offer to others. It shows the power that the everyday person can take into their own hands. It’s a real-world example of how access to technology at home, combined with the curiosity and desire to learn, can actually improve someone’s health. It can decrease mortality and morbidity. It can allow us to live happier lives despite chronic illness.
Eventually, CGM manufacturers began adopting and implementing some features of CGM in the Cloud (which evolved into Nightscout), but the hacking never ends. In fact, it’s only growing, as companies are notoriously slow to innovate and release updated features and devices. End users are continuing to hack both the hardware and software of their diabetic devices to improve their quality of life and reduce device costs.
One particularly exciting project I’ve been playing with in recent days is OpenAPS (Open Artifical Pancreas System). Diabetics have been waiting for decades for an “artificial pancreas” — a device that is essentially part CGM and part insulin pump. In a process that has been referred to as “closing the loop”, a programmer can essentially construct an external organ from these two devices that many diabetics already use.
I’m excited to see diabetes continue to be “hacked” in these ways. I hope it sparks both a love of technology and a love of health and self-care in every diabetic it reaches. We have the power, we are capable, and #WeAreNotWaiting.