Warming Up to Do-It-Yourself Diabetes Looping

When longtime type 1 Doug Boss in Texas first started exploring do-it-yourself closed loop diabetes technology, he didn’t have high expectations. As a self-employed IT analyst, the 30-year T1 began tinkering with his own “Artificial Pancreas” just as a little hobby project to learn about the work being done on these AP algorithms by other tech-savvy folk in the Diabetes Community.

Boss says his inspiration to experiment came because, like many T1s, he “hadn’t had five uninterrupted nights of sleep in a row in 20 years.” But by mid-February after only a week of Looping, Boss was sold. He’s been able to sleep through the night free of glucose highs and lows, and awakes each morning within 15 points of 100 mg/dL — without having to do the bedtime BG checks and insulin corrections he historically relied on.

“The technology is game-changing and amazing,” he says. “It’s good enough that it makes me want to slap the FDA and (commercial pump) industry because a group of volunteers has come up with this system that works so much better than anything else out there.”

This is the story of so-called “do-it-yourself closed looping,” creating and using homemade artificial pancreas devices that to the uninitiated, certainly must sound like mad-scientist stuff, minus the white coats. These creations combine a traditional insulin pump, a continuous glucose monitor (CGM), a wireless communication stick, and mini-computer loaded with an algorithm to command the pump to deliver micro boluses of insulin based on glucose levels.

Boss is far from alone, as this “Looping” trend has gone international and continues growing rapidly as more people in the Diabetes Community embrace this instead of waiting for industry to develop and commercialize their own product.

#WeAreNotWaiting for Improved Diabetes Tools

In fact, the whole movement behind charging ahead and creating these homemade systems is dubbed #WeAreNotWaiting, a mantra that was coined at DiabetesMine‘s very own first-ever D-Data ExChange event back in 2013. 

Long before Medtronic launched its first commercially-produced partial closed loop system, some folks were quietly using their own DIY tech off-grid. And the current wave of open-source innovation was set off when the brilliant Dana Lewis and Scott Leibrand unveiled their Do It Yourself Pancreas System (DIYPS) and started sharing that concept with the world.

The latest data shows that today, more than 600 individuals worldwide are using one of the three main types of homemade closed loop system — and that’s just what is actually known about. The number keeps growing, as do the number of options in creating these gadgets.

And yes, it’s making a huge difference.

“I think do-it-yourself APS and the broader #WeAreNotWaiting movement are vitally important on a number of fronts,” says Hamish Crocket, a type 1 himself and Senior Lecturer at the University of Waikato in New Zealand. His research examines how people people living with a chronic disease learn to self-manage, and the role of technology. He’s submitted an abstract on Learning Challenges for Closed Loop Systems for this summer’s big ADA conference.

“This DIY innovation is patient-driven and patient-centered, and it’s focused on what is possible rather than what’s profitable. So it has driven innovation in a different direction and at a different pace to industry-based innovation,” Crocket says.

Assembling a Closed Loop

Of course, as you might have guessed given this is a DIY project, there’s some assembly required.

As described on the Looping Facebook page, this type of system is not something you can purchase as a whole, but rather requires work to install, support to use and equipment to purchase. They caution: “If you want a perfect system, this is not for you.”

For Boss, he started by reading up on the grassroots open-source tech initiatives OpenAPS, Loop and AndroidAPS, which all provide guidance for people who want to build their own systems using off-the-shelf components. There are different versions that work specifically with either iOS or Android platforms, and vary based on what you prefer to carry around with you.

The OpenAPS website provides instructions and advice, and serves as a platform for users to share experiences and ideas, but it does not create or sell systems. Each “Looper,” as these DIY builders are called, is on his or her own. According to Boss, it took him about eight weeks to collect all the information and equipment needed for his hobby project. Yet, he accomplished the final assembly and initial programing in just a single day!

He purchased a thumbnail-sized computer module online and scored an old 2004-era Medtronic insulin pump from his second cousin.

“I assembled the pieces based on an open source recipe on the web,” Boss recalls. “It involved installing a version of Linux on the Edison computer, then I added the OpenAPS programs, and the closed loop algorithm, and set some basic settings.”

Which makes it sound a whole lot simpler than it really was. In fact, Boss admits, “it’s a pain to set up,” “a lot to learn,” and he’s had some issues with keeping all the components “talking” to each other.

Even though there is abundant documentation available online that can guide a new Looper through the process, according to Boss, “it’s not iPhone easy.” He suggests that anyone who regards him or herself as a tech moron might well be advised to consider one of the other options. He says he chose OpenAPS because, “I use an Android phone and for a number of reasons it is the best fit for me. It required less hardware to carry and seemed the best choice.”

But despite the headaches and some ongoing tweaking, within one week, Boss said, he was totally sold on his home-made closed loop pump system, and it has paid off. “I no longer do any (insulin) corrections like I used to. Most of the time I don’t have to, because the rig keeps me close enough to my targets as long as I do a decent job of counting and entering carbs.”

Cost, Supplies and Skills Required

All roads led to Rome in the olden days, but no one road leads to Looping. Each system is individually created by its wearer, and while the OpenAPS website estimates the cost of creating a system at $150, for Boss it was more.

“All in all I’ve easily spent $1,200 to $1,700 on the parts and pieces,” he said, including his spare components.

Spare?

The Edison computer that’s the heart of Boss’s system has been discontinued, so Boss scoured the Internet and came up with two spares. But that wasn’t the only spare he needed for his comfort level.

Currently, OpenAPS will only work with older Medtronic pumps (because those radio communication signals can be hacked), which is ironic to Boss since he’s never officially owned that brand. While volunteering for the JDRF many years ago, Boss describes he was so upset by the “lies” he heard MiniMed sales reps telling to the parents of newly diagnosed kids that he “vowed to never support the company.”

Boss’s cousin set him up with an older pump, but once he was up and running on Looping he realized that he needed a backup of this part of the system as well. So he purchased another pump from a fellow Looper who had a spareable spare. That left him with the need for appropriate pump supplies, which Boss is able to find in pay-it-forward groups online and from third-party distributors, so he doesn’t have to purchase from Medtronic — keeping his vow not to be their customer. Boss suggests Loopers ask their doctors for a generic pump supply subscription, and he also points to the customer support he’s gotten from DME supplier Pumps It.

Once up and Looping, Boss built an Alexa app for his rig so that the talking Amazon technology can tell him about the status of the pump and system.

Boss notes: “It’s cool that I can just say: ‘Alexa, ask the pump how am I doing?’ and she responds with my BG, if it’s steady, rising or falling, how many minutes ago that was, and whether the rig has me on a temp basal, and if so how long, and how many units of IOB (insulin on board) I have.” 

Boss says he originally called his pump “Smart Pump Two,” but that Alexa “had trouble understanding two words,” so he’s programed the App to recognize it simply as “The Pump.”

While some novice DIYers have IT-related careers or hobbies that make them familiar with this stuff and help in building their systems (like Boss), others have a steeper learning curves because they don’t have that background experience. Sometimes these novices may face challenges in getting support from the community, if they don’t understand the IT lingo or aren’t as connected to developer tools and resources in trying to build and trouble-shoot their systems. That can be a challenge, but the giving back spirit in the DIY community often helps work around that issue.

Better Sleep, Less Bolus Hassle

It’s all been very worth the investment in time and money, Boss says. “The biggest thing for me about diabetes is the constant nature of it… It can be very mentally draining… I’m still amazed that I sleep through the night most nights with no BG alarms from the Dexcom CGM. What would I pay for a good night’s sleep?”

Boss is also tickled that he no longer needs to worry about square waves or temporary rates, and that he has a greater range of meal options then ever before. His rig has simplified his life, allowing him to eat meals that used to be more challenging to bolus for even with complicated square and extended boluses.

Other than the need to re-charge his DIY system every 18 hours, Boss says the day-to-day operation is simple. The device itself is small enough to carry around, and he’s able to enter carbs from his smartphone.

“So for the last week or so I’ve not had to enter anything directly on the pump. All I do now, for example, is to hit a button on the phone to tell Nightscout that I ate 30 grams of carbs. The rig picks that up in a few minutes and begins to deliver insulin to adjust for it,” he explains.

Boss says that his “little hobby project” with Looping has led him to become a real evangelist to get other patients on this type of technology, and get the industry on board.

DIY Driving Industry

“The more the FDA and major pump companies see people turning to this, the more they might have to embrace the advantages,” Boss notes, adding that as a Tandem Diabetes shareholder himself, he plans to contact investor relations and encourage Tandem to look at these options. “My brand new t:slim X2 is like a glass syringe with a dull needle, compared to this OpenAPS technology.”

It’s this way of thinking that has led at least one international pump company, the DANA RS pump-maker based in Korea, to actually weave open-source connection capabilities into their newest products, in the spirit of embracing #WeAreNotWaiting.

That shows the influence of DIY movement and OpenAPS, specifically.

“Overall, to have innovation on multiple fronts is to the benefit of all people affected by diabetes,” says D-peep and researcher Crocket over in New Zealand, who is even building his own homemade closed loop system. “The DIY communities have shown the huge potential for the community of people affected by diabetes to make a positive contribution to how the disease can be managed. This potential is something that industry could draw on if it can find the right way of engaging with the patient community.”

Crocket notes that the movement has quickly grown from a small group of “user-developers” to include a much broader community of users, who don’t directly contribute to developing the underlying code or tech configurations. That shows an incredible market and need for these systems — that even many non-tech-tinkerers are willing to go great lengths to become Loopers.

“My hope is that industry and regulators recognize that a one-size-fits-all approach does not meet the varied needs of the community,” Crocket says. “I also hope that industry and regulators no longer view the community as passive recipients of treatment, care and technology, but as active and creative participants in treatment, care and technology.”

Amen.