Why Would Anyone DIY Diabetes

The term “DIY diabetes technology” is being discussed a bit more this year especially since Diabetes Ireland brought our attention to the US Food and Drugs Administration FDAs “warning against the Use of Unauthorized Devices for Diabetes Management” in their current members magazine. Oh, and not to forget the DIY Diabetes Tech information day in Dublin we were part of last May- see videos of all our presentations here

The FDA’s warning was followed by a statement from the JDRF which I feel is a bit more understanding of the DIY community and explains the situation a little better but also this post from Katie DiSimone gives a very detailed and easy to understand description. 

Many of you might be wondering what the blazes IS DIY Diabetes tech, why would anyone even consider it and why lots of people are scared of it?

Well let’s go first to:

What is DIY Diabetes technology?

Do it yourself diabetes technology is where a person with diabetes creates their own solution to improve their management of their diabetes. One might argue that DIY diabetes has been happening for a long time: it’s how we came up with meal pre bolusing, the super bolus, spreadsheets for our data, etc. However, in this instance, the solution is in the form of an App, computer software or a self built device.

Two types of DIY Diabetes

I think it’s really important to distinguish that there are two types of DIY Diabetes:

  • Nightscout (CGM in the Cloud) and 

  • Automated Insulin Dosing Systems or Closed Loop

Nightscout (CGM in the Cloud)

Nightscout (CGM in the Cloud) is a DIY project in the form of computer software, that is made freely available and may be redistributed and modified (open source), that allows real time access to CGM data via a personal website, smartwatch viewers, or apps and widgets available for smartphones.

Nightscout was developed by parents of children with Type 1 Diabetes and was a solution specifically for remote monitoring of Dexcom G4 CGM data and predates Dexcom Share and Follow Apps. It has now evolved into a platform where you can see your information from both your insulin pump and your cgm, in real time, in the same place, regardless of who manufacturers those devices. 

Nightscout does not allow or is capable of automatic insulin delivery. However, it has not been approved by any regulatory body. There are several hundred people using Nightscout in Ireland.

DIY automated insulin dosing systems / Closed Loop

This is what’s causing all the hooha and controversy. JDRF UK give a good explanation of DIY Automated insulin dosing systems in their position statement

A small number of people have built “closed-loop systems based on “do-it-yourself” (“DIY”) technology to help manage their condition. These technologies are not commercially available and are ‘built’ by individuals with diabetes for their own use and they have not been approved for use by regulatory bodies.” 

A DIY automated insulin dosing system consists of:

  • an approved insulin pump with the facility for remote access (remember those remote control key fobs back in the day)

  • an approved CGM

  • an unapproved DIY closed loop App on your phone built using open source computer programming code

  • an unapproved device that acts as a “translator” that “helps get information to/from your pump by radio communications, and to/from your iPhone using Bluetooth”. (the pump needs communications in radio form, and the iPhone needs communications in Bluetooth form) - source Loop Docs

Just to be clear there is no “hacking” of the insulin pump or CGM: DIY’ers are taking advantage of a feature in the pump that is, mostly, no longer used. A number of years ago some insulin pumps came with a remote control key fob which meant that you could control your pump without having to pull it out to see the screen. 

So, Why Would Someone with Diabetes use an Unapproved Device or Software?

Diabetes educator Gary Scheiner, says in this video “Simple, it works!”

The current approved diabetes technology availability today is great - a vast improvement on Benedict’s solution and test tubes. BUT! It is, still, far from perfect. We live in a world where there is no perfect management tool, device or technology and We have a never ending list of struggles in our daily lives with diabetes: some of us: 

  • Have two to three different medical devices that don’t work with each other

  • Still struggle The many, many highs and lows of glucose 

  • Get Calls from schools who don’t know what to do for your child

  • Are Losing sleep from CGM alarms to prevent some of those highs and lows of glucose 

  • Have Alarms that are not loud enough to wake us up during low glucose

And all of this is from the approved and clinically tested devices.

The world we live in today is also one where we have unlimited access to information and knowledge. We have access to unlimited possibilities and we are crowdsourcing to create our own solutions to our everyday problems. Some of us are not willing to let another 5-10 years of our lives slip by while we struggle with all of this when we have the information now. I’m also not willing to wait decades for the clinical studies and research that proves what I already know.

Why I am using an unapproved automatic insulin delivery system

I have a list, I’m going to call them the Top 4 Reasons that Tipped me Over the Edge.

Simply put, I was completely fed up:

  • of the highs and the lows of glucose. The felt physically icky and horrible and they were exhausting. 

  • with the never-ending cgm alarms during the night that enabled me to stay in range but made me a zombie. 

  • working very, very hard and still having unpredictable highs and lows. 

  • of using paper to look back at my diabetes information. 

Why I’m using Nightscout?

In addition to the above, I was in the position where my insulin pump was discontinued and I wanted to keep my current CGM, it has the reputation of being the most accurate available in Ireland BUT! It does not partner with any other insulin pump available in Ireland. 

Now, my insulin pump data is uploaded to one software programme only viewable on a laptop and my CGM data is viewable on my phone but only the last 24 hours and on a completely different software programme. 

When I present at my clinic they have to decide if they want to see my glucose information or my insulin dosing information. Just like me, they can’t see all my data on one screen. 

With Nightscout I can see all of my diabetes data in one programme as well as quickly pull up older information On. My. Phone!

I’ve just had enough and that’s why I decided to become a DIY Closed Looper. #WeAreNotWaiting