If you’re looking to get started with a DIY automated closed loop system for diabetes control, and you love the tubeless Omnipod patch pump — your time has arrived! Big news hit recently that diabetes Do-It-Yourselfers have finally been able to hack into the Omnipod to allow building a homemade AID (automated insulin delivery) system around that patch pump.

Meanwhile, Omnipod manufacturer Insulet Corp. announced earlier this week that they’ve now fully launched their new smartphone-compatible Omnipod DASH system, which was FDA approved in 2018. We’ll offer more on that soon…

But today, we’re excited to bring you an initial look at the new, Do-It-Yourself version of Omnipod Loop. Remember this is not an official FDA-reviewed product and it isn’t from Insulet; nor is it the version that nonprofit data powerhouse Tidepool is working on. Nope, this is completely from the #WeAreNotWaiting community and is simply the Pod-version of an open-source “artificial pancreas” system that hundreds of patients have been building to date using old, un-warrantied insulin pumps with tubing. There is a whole underground market using this DIY, homemade tech.

Incredibly, since the announcement that a build is possible with Omnipod, we’re told that 1,525 orders have been placed for the key piece of hardware needed to make these DIY systems. And over 1,400 new people have joined the “Looped” Facebook group since that time. One of those is Joanne Milo, a longtime type 1 from California who blogs over at The Savvy Diabetic. Joanne has been using this DIY Omnipod Loop or about a week now, and has generously offered to share her first impressions with ‘Mine readers.

I’ve had type 1 diabetes for over 54 years, have been insulin pumping since 2004 and started “Looping” in 2017 with a homemade, do-it-yourself version of a closed loop system using an older tubed pump.

In my years with T1D, I’ve used the Animas insulin pumps and Deltec Cozmo that was eventually taken off the market, and then I switched to the first generation of the tubeless Omnipod. I found a new pump with the Asante Snap but that too went away, and so I jumped back to the second-gen Omnipod. While I loved being tubeless, I longed for an option that would mean I didn’t have to always be in that 24/7 role of executive manager of all aspects of my insulin delivery.

That led me to using the DIY closed loop using RileyLink, which was developed and named after D-Dad Pete Schwamb’s daughter. So far it was only configurable using an outdated Medtronic pump, and I am one of the hundreds across the world who actually bought one of those on Craigslist for this purpose. With an unnerving bit of programming on a used MacBook that I also bought on Craigslist, it all connects via a DIY RileyLink communicator to command the pump through a Loop App on my iPhone. That Loop App is used to program the default insulin basal rate into the pump. Then it uses bluetooth data from the Dexcom CGM along with my inputs for food to adjust the basal rate up or down or to deliver a bolus in case I have signaled food is on the way.

My D-life changed dramatically on the RileyLink! My A1C stayed below 6% consistently with very few lows and stable blood sugars all through the night. It was miraculous, but I hated using an out-of-warranty pump which has tubing and wasn’t waterproof. And I knew the day would come when these amazing folks in the DIY community would find a way to do Loop with Pods. That day is HERE!

After three years in development with lots of programmers and lots of grit, Pete Schwamb, the developer of the RileyLink DIY closed loop insulin delivery system, announced on April 22, 2019: “I’m happy (and nervous!) to finally release my code as a public testing version of Omnipod support for DIY Loop.”

With this announcement, I was literally bouncing with excitement and a little bit of my own nervous anticipation. And I already knew I was going to jump on board right away.

Feeling Happy on Omnipod Loop

I’ve been using Omnipod Loop now for almost 6 days, and I’m in heaven! This is still not the “official” version within the DIY community, but rather a “testing” version where those using it are sharing their thoughts so the developers can make tweaks and update it as we go.

The first thing I noticed was just remembering what life is like without tubing! I wanted to do pirouettes around the house. I no longer need to deal with stashing my pump or PDM in a pocket or in my bra, and no more lapses for showers and getting dressed. Amazing!

Setup was very easy, as the LoopDocs guidance is simple to read and understand.

The new RileyLink app interface is wonderful, as was the original Loop interface that was so well-designed with information that I need. I’ve had great connectivity, and I just feel happy! My numbers are so steady through the night that’s it’s actually only one number — 90 all night without Loop failures. I show people the pod and the dashboard… they smile but have no idea of how wonderful this is. I felt totally emotional all day yesterday! Some notable changes that contributed to that are:

  • NO PDM needed! I’ve always found the Omnipod PDM clunky and large, and I have to make sure to not forget it whenever I’m leaving the house. But with Omnipod Loop, the iPhone app controls the Pod entirely — from the daily dosing functions, filling the reservoir, starting the insertion, and maintaining a calendar and countdown for when the Pod’s set to expire. I’m told that the Pods only connect to one device at a time, so that means it’s either my iPhone app or the PDM; once you start using one of them, that’s what you are using for the full 72-hour cycle of each Pod.
  • On the mobile app, the updated Omnipod Loop interface now includes a little picture of a Pod and a dial that shows how much time is left on the Pod. When it’s delivering a bolus, it shows the delivery so I know how much has been dosed.
  • I can use either the Omnipod or my old Medtronic pump. While I never thought I’d ever want to go back to the Medtronic, I have found one reason: I was scheduled for an MRI at the same time I am due for a Pod change. So instead of wasting a Pod, I switched back to my Medtronic 723 pump and changed the setting of my Loop to Medtronic, entered the serial number, and I was up and running. It was just that easy, with all my settings intact. It’s nice to have this option.

The Omnipod Loop App Interface

The app interface gives me a great deal of information on the home screen, at a glance:

  • A status circle that shows Green when the Loop is active, or Red or Yellow when there is an occasional lapse of bluetooth connection. To handle this, I often close and reopen the app, reboot my phone, or simply wait. The circle also shows how many minutes since my CGM last updated.
  • My blood sugar and a trend arrow.
  • A graph of my blood sugars plus a projected line into the next 3 hours.
  • A graph of my active insulin on board (IOB).
  • Amount of “active carbs” to account for entered food carbs.
  • My current basal rate and whether the Loop has increased or decreased my basal rate to bring my blood sugar back to the target.
  • The current bolus correction (plus or minus when it is correcting).
  • A little Pod icon that indicates when insulin in the pod reaches 50 units or less. Below that a time appears indicating the last communication received from the Pod.
  • Countdown circle icon showing how long until the next Pod change is required.
  • Bolus delivery when it’s in progress, similar to what you see on a regular pump, but you don’t have to look to a second place for this information.
  • The Omnipod Loop, as well as the original Loop, connect to Apple Health, which allows Loop to write and read data.

Omnipod Loop and Apple Watch

By connecting to an Apple Watch, I can view all my Loop information data on my watch as well as enter meal carbs and command the Pod to deliver the suggested bolus and enter information about exercise. The Watch face has two screens:

  • Data Screen: a condensed version of the Loop home screen, with the Loop circle (Green, Red or Yellow), my current BG and my projected BG, a simple BG chart and my IOB.
  • Action Screen: with the Loop circle, BG and projected BG, plus all that I need to bolus and enter exercise information.

Since Loop grew out of the DIY #WeAreNotWaiting community, it links to the data-sharing Nightscout app which allows me to generate a variety of reports, which I’ll bring to my endo appointments (he loves these reports!).

Living with Omnipod Loop

I’ve also been finding lots of new places for the Pod which would not have been possible on a tubing pump. My current Pod is attached to my shoulder blade, which is amazing with great absorption and almost never at risk for getting bumped off.

My blood sugars seem to be more stable, although I’m not entirely sure why. I do know that since I don’t have to remove my pump to shower or use the Jacuzzi or get dressed, I don’t have those recurring lapses in insulin delivery for 10-30 minutes.

I’ve never decorated my pump or pods. But I’m so joyful with this little pod, I’ve been following a group on Facebook called Pimp My Pod — the next Pod will have some artwork!

Downsides to Using Omnipod Loop?

So far, I’ve only noticed a few negatives to using this new DIY system:

  • Loop updates require that I do a little bit of programming on a Mac, which I am still trying to figure out. It takes time and produces a little anxiety until it all launches onto my iPhone successfully.
  • I have to keep track of and charge more devices. I have large USB multi-port plugs at my bedside and at my desk, with lots of cords, plus a set of charging cords in my car along with a power bank.
  • I’m just getting used to the need to change pods on a very strict time schedule of every three days.
  • I might need to use my PDM if I ever lose my iPhone, which is really unlikely.
  • The Loop app and the Apple Watch Loop app do not connect to Fitbit or other fitness trackers… that would be nice.

I’ve been asked lots of questions about WHY I love this DIY technology and why not just use the traditional, approved devices. Am I concerned because they’re not officially approved by regulators? And what do my healthcare providers think? What happens if it fails? All valid questions and concerns.

When I started on the original RileyLink Loop in January 2017, nothing like this existed. My approach was to read a lot about how it worked and how well people were doing on these devices. I asked a lot of questions. What I heard more than anything else was the peace of mind so that I can sleep without concern or being awakened by CGM alerts. So I guess I am a “late” early adopter of technology. I’ve lived with this disease so long, I just want the best that is available to manage my diabetes as best as possible.

Was I scared? No, but maybe a little apprehensive. It was just easy enough that I calmed down quickly.

What do my doctors think? They seem fascinated and amazed. Of course, they really don’t want to be overly-involved as it is not FDA-approved. But they do appreciate the reports and the great blood sugar charts with low standard deviation (particularly overnight) and the good A1C readings with very few highs and lows. They just look at the data and smile and say, “Good job! I can’t make any improvements here!”

To be clear, this is all on me. It’s an N of 1 study, so to speak, and there’s no one to hold liable if something goes wrong. I am OK with that.

Personally, I simply do not think the corporate-developed devices like Medtronic’s Minimed 670G or the Tandem Basal-IQ (and future Control-IQ) are good for me. I don’t think algorithms are the best and most adjustable in their first generation. I like to be able to set my own target rates and control how long my Loop shuts off. That is just me. I do know of several RileyLink loopers who have made the switch to mainstream closed loop insulin delivery systems and are happy with the ease of use, lack of necessary updating, having insurance coverage, using a current in-warranty pump.

But for me, until the algorithms are more customizable and I feel that they are truly the best for each individual, I’ll stick with Omnipod Loop.

Other DIY Loopers Share Comments

You can get a sense of how others in the Diabetes Community feel about this just by browsing Facebook and other social media sites. A few comments that stood out:

  • “I am truly giddy with joy I feel free. So so grateful.”
  • “It has been rock steady for me… I was on Omnipod before I started looping almost 2 years now… I forget how much I love Omnipod… as I have stated many times on here and anyone that will listen to me… Dr’s, friends, business associates… and people I run into on the street… that this is life-changing.”
  • “Biggest surprise awesome factor has been the watch app, honestly. I showed both the phone app and the watch app to a non-diabetic coworker and they were impressed overall but BLOWN AWAY by the watch app. It is so useful and pretty. It’s so satisfying to tap the target change buttons and watch the target line jump on the app.”
  • “Left the Pod to go to t:slim for the CGM integration. Left that to Loop! The only thing I ever hated about it was the damn long-a** cord. I missed my Pod SO SO much. I’m a happy chick right now.”

Does This Work with New Omnipod DASH Product?

No, it doesn’t.

Sure, I think the new DASH platform is very exciting news and it gives T1s a greater range of choices. That’s wonderful. However, it still requires a PDM which is bulky and just one more piece to carry.

Insulet’s future hybrid closed-loop system, known as Omnipod Horizon, as well as Tidepool Loop or the Beta Bionics dual-hormone iLet system, might eventually lure me away from the DIY life. But those seem far away, into 2021 or later. For now, I’m just as happy with this.

The #WeAreNotWaiting Community in Diabetes

Our #WeAreNotWaiting community is amazing and driven to make life with diabetes the best it can be. Since starting in 2013, some have described this being “one of the fastest-growing grassroots movements in T1D history.”

When I shared this statement with Dr. Francis Duhay (former chief of cardiothoracic surgery and cardiology at Kaiser Permanente, Asst. Professor of cardiothoracic surgery at Duke University School of Medicine, former CMO of Edwards Life Sciences and current VC investor) he noted that instead of saying it’s one of the fastest-growing grassroots movements in T1D history, it’s actually one of the fastest growing grassroots movements in medicine.”

This is a very exciting time in T1 history with technology leaping forward. To that end, Omnipod Loop is right up there as an outstanding step forward.

Thanks for sharing your POV with us Joanne. We agree it’s an exciting addition to our expanding diabetes toolbox!