Type 1 Diabetes (T1D), traditionally known as Juvenile Diabetes, is hard work. Often (although not always) it is young toddlers and children who get it. The cause is unknown. The consequence of getting it is your pancreas no longer manages your blood sugar levels properly and the pancreas’ job needs to be managed manually through diet, exercise and medications such as insulin.
For a parent of a child with T1D, this is a full time job. In the morning and at night, there are injections. Before every meal there are injections. There is constant monitoring of the child’s blood sugar levels with finger pricking, including every few hours during the night. If the child’s blood sugar goes too low they could slip into a coma and die.
Technology does help, albeit at a price. For the blood monitoring, there are Continuous Glucose Monitors (CGMs). These put a little needle under the skin and monitor blood sugar levels without the need for finger pricks. For insulin delivery, there are pumps which are attached and worn 24 hours a day delivering insulin.
Even with these tools the settings and monitoring are still manual. At meal times, the amount of insulin needed is estimated and the pump is manually adjusted. The parents still need to get up in the night and check the blood sugar levels.
Often the CGMs have an alarm if blood sugars are too low but they can be quiet, as Dana Lewis discovered. In Dana’s case she was the T1D and the alarm was supposed to wake her up if her blood sugar went too low in the night. It did not always succeed.
The Internet of Things Makes a Better CGM
Through Twitter, Dana discovered someone on the other side of the country (John Costik) had managed to get the data out of their child’s CGM and into an online spreadsheet so he could monitor his son’s blood sugar levels while at day care. Dana reached out to John and he gave her the code. She began building a better CGM. The plan was simple: pull the data out of the CGM, send it up to the cloud, send it back to her phone and, if her blood sugar went low, the much louder phone alarm would wake her. It worked.
Dana did not stop there. Dana lived alone and there was still the risk that, like many of us, she would sleep through the phone alarm. She reworked the system to send her data to her boyfriend and her mother. If she fell low and slept through the alarm, they too would be informed. It worked.
Collaborating with her boyfriend (Scott Leibrand), she made the alarms predictive. Rather than simply warn when she had gone too low, the alarm now warned her BEFORE she went too low so she could actively prevent it.
The Internet of Things Makes a Pancreas
Dana was still part of the system. The alarm from the CGM woke her up and she made adjustments to the pump to bring her sugar levels back in line. What if the adjustments could be made automatically? Again, someone else on the internet (Ben West) had figured out how to send commands to his pump using a radio transmitter and gave her the code. He too was a T1D looking to automate his pump. With Ben’s code, Dana removed herself from the system and it worked.
By the end of 2014, the system was fully working and it was clear this had the potential to improve the lives of many diabetics and their families. The sale of medical devices are, quite rightly, strictly controlled. Dana and Scott could not make and sell clones of their setup so they did the next best thing: they released the blueprints for free so others could build it for themselves and the OpenAPS (Open Artificial Pancreas System) was born.
The linking of a CGM and pump to automate insulin delivery is called ‘looping’ and there are three main projects on the internet for doing it:
- Loop (A loop based on Apple technologies)
- OpenAPS (Dana’s original project)
- AndroidAPS (A fork of OpenAPS which uses Android technologies)
Looping has been around for 3-4 years and there are hundreds of diabetics using the system to manage their disease. Only now are the first commercial equivalents coming to market with the most basic of functionality. The expanse of time between when the technology arose to address the problem and when it was commercially released is the reason the movement to make an artificial pancreas has adopted the hashtag #WeAreNotWaiting.
When you know, every night, you or a loved one might not wake up and the technology is available to prevent that from happening, wouldn’t you do the same?
For me, the story of OpenAPS shows the best of what the Internet of Things has to offer. Sure, the CGM and the pump use the internet to talk, with no human intervention; a traditional Internet of Things but, to begin with the ‘things’ were ideas and incremental advances. When these came together and interacted via the internet something was achieved which could not have been created in isolation. Something that has the potential to improve the lives and prevent the deaths of thousands of people around the world.