Dana Lewis wants to improve the lives of diabetics, and has spent the last three years working to perfect a DIY artificial pancreas system — and making the plans available and easy for others to implement.

The project, OpenAPS, allows a person to use the data from their continuous glucose monitor (CGM) with a small computer like a Raspberry Pi or Intel Edison to make micro adjustments to basal insulin being delivered through a pump. Connected apps allow a person to let their system know when they have done anything (like sit down for a hearty meal or run a marathon) that might make their glucose jump or fall unexpectedly. It makes managing diabetes more automated with the goal of making blood sugar levels more stable over time.

Cause for Alarm

Lewis, as a Type 1 diabetic living on her own, needed a CGM with an alarm that would be loud enough to wake her if her glucose levels dropped too low while she slept. Turning up the volume on an alarm seems like a simple request, especially considering that the consequences of it not waking her up could be a hypoglycemia-related death, but Lewis met resistance.

“I kept asking the device manufacturers for louder alarms,” she says. “The manufacturers usually responded, ‘the alarms are loud enough, most people wake up to them!’ This was frustrating, because clearly I’m not one of those people.”

Also frustrating was the fact that for the longest time she couldn’t access her own medical data from her CGM in real time. If she had that, she knew it would be simple enough to make a custom alarm.

Taking Control

In November 2013, by chance, she found John Costik tweeting about how he’d managed to get the CGM data from his son’s device. That tweet gave hope to Lewis, and other patients and their loved ones, and helped spark a movement: #WeAreNotWaiting — for those unwilling to sit tight until commercial tools become available. So she reached out.

With help from Costik, and an active open source community sharing information on how to access the functionality of CGMs and insulin pumps, Lewis was able to really get started. Within a year she and her boyfriend (now husband) Scott Leibrand moved from creating customizable alarms to creating algorithms to read data from her CGM and send the correct commands to her insulin pump to make proactive dosage adjustments, closing the loop and creating her first DIY pancreas.

With OpenAPS, this went from being a personal project to being an open source, community-focused effort. “The goal that Scott and I built the OpenAPS community around is to improve access to artificial pancreas technology,” Lewis says. On their site openaps.org, they’ve provided easy to understand documentation for setting up OpenAPS and have encouraged users to contribute, ask questions, and help expand OpenAPS compatibility to other devices.

A Calculated Risk

Apart from the existing diabetes devices (the CGM and insulin pump), the system is 100% DIY. “There are numerous ways to customize it, and you can use all the Lego pieces or sub in your own,” Lewis says. “This means you can use a community-built and -vetted algorithm, or create your own algorithm to drive the decision making for the system.” It is also worth noting that the system is not a “set and forget” setup; according to the OpenAPS website: “You’ll still be actively managing your diabetes and doing basic self-care as you were before — this includes everything from meal boluses, checking BG and calibrating the CGM, changing out pump sites, etc.”

Since the system is not FDA approved, people interested in using it must make it for themselves. Using unregulated devices is a risk, but many OpenAPS users feel it’s a chance worth taking. “It sounds dramatic to say that lives are at stake … but they are,” Lewis says. “People unfortunately still have a risk of dying in their sleep in the short term due to hypoglycemia, and are at increased risk long term for diabetes complications from hyperglycemia.”

As I write this there are at least 247 people using some form of OpenAPS to manage their diabetes, and as a community they’ve logged an estimated 950,000+ hours of real-world closed loop experience.

Freedom of Choice

“[Technology] has progressed so that we now have a choice to wait for a commercial system, or not,” Lewis says. “I’m proud that because of the OpenAPS community, those with access to the compatible devices can make the choice to DIY or to wait for a commercial system. It’s not right for everyone, but having the choice is a huge step above having to wait year after year after year. (For context, I’ve been living with Type 1 diabetes for 14+ years and have been hearing about this technology being ‘a few years away’ for most of that time.)”

After so many years of waiting the first (and only) commercially available and FDA-approved closed loop system for diabetics is actually due spring of 2017. This does not, however, spell the end for OpenAPS. “Even when one or two systems become commercially available, that doesn’t mean they’ll be perfect — or accessible to all,” Lewis explains. “As a community, we still have work to do to help manufacturers advance the features of these systems and make them more quickly available, and more accessible.”

Diabetes-Inspired Health Hacking

Nightscout is an open source project focused on allowing CGM users access to their blood sugar data in real time by putting that information on the cloud. Besides being behind the browser-based visualizations for OpenAPS, it can also be used to review data from a phone or smartwatch, or monitor children with Type 1 diabetes remotely.

EpiPens are used to administer emergency doses of epinephrine in the event of a life-threatening allergic reaction. When the price for an EpiPen suddenly increased to $300, Michael Laufer created a video showing the world how to make the EpiPencil using supplies more commonly used to treat diabetes. Not including the cost of the epinephrine (for which you would need a prescription) the EpiPencil costs less than $35.

https://www.youtube.com/watch?v=ldFFJRdhVs8