Melissa Lee Talks DIY Closed Loop System
Beyond Type 1 got to sit down with Melissa Lee, the director of community relations at Bigfoot Biomedical, and one of the first people with type 1 diabetes to use a DIY automated insulin delivery system. Here’s what we found out from the well-known advocate in the DOC, who has lived with type 1 for over 27 years:
BT1: How long have you been in the type 1 space professionally and could you mention all the professional positions you’ve held in the type 1 space?
Melissa: I have been in the type 1 space professionally for more than five years, having served on the board of directors of three diabetes nonprofits, most notably Diabetes Hands Foundation. There I served on the executive board and later stepped forward as the interim executive director in the year 2015. Presiding over the day-to-day operations of the foundation, I was responsible for program strategy, fundraising and partnership development, leading an organization with an estimated worth of approximately $1.2 million in 2015.
I represented DHF and the broader diabetes community in an advocacy role with organizations like the Diabetes Advocacy Alliance and Partners in Patient Health as well as planned and facilitated DHF’s second annual Diabetes Advocates MasterLab Summit in July 2015. A blogger since 2010 at my own blog sweetlyvoiced.com, but from 2014 to early 2016, I also wrote as Tech Editor of the online diabetes magazine ASweetLife.org, covering the developing diabetes technology landscape. I have frequently been asked to deliver the technology information sessions at events like JDRF’s TypeOneNation and Diabetes Sisters’ Weekend for Women. In 2016, my technology and community paths converged into what I describe as my dream job, as I joined Bigfoot Biomedical as director of community relations where I serve handling social media and communications.
BT1: During 27 years with type 1, has your management changed at all? With the latest pump by Animas being discontinued, it’s a reminder of just how few options the type 1 community has in terms of their personal care, what is your experience of this?
Melissa: I have used a dozen pumps from six companies over a 17 year period —and I am an early adopter of the DIY automated insulin delivery system and was the 20th person in the world (by my best count) to jump into using it, which I’ve now used for over two years.
BT1: What made you want to go the DIY route?
Melissa: My husband Kevin was one of the original developers of Nightscout, so we knew already that DIY solutions could be life-transforming. I live by the philosophy that I’m savvy enough to assess whether something is working for me or not and that I can always go back to what I was doing before.
BT1: Can you speak to what makes your DIY closed loop system unique or how you and your husband went about building it?
Melissa: Most of the do-it-yourself automated insulin delivery systems that are available today are open source. This means that the instructions and software are freely and publicly available and may be redistributed or modified by anyone. In other words, you’ll find that when we (the DIY community) talk about our systems, we did not each create a system of our own in terms of starting from scratch. Rather, we built one for ourselves based on the open source instructions. In that sense, the systems do not vary greatly from one another but also might have subtle customizable differences depending on how the user puts it together.
When I first started using such a system in 2015, the only option was OpenAPS (created by Ben West, Dana Lewis and Scott Leibrand), which involves an older model pump, a glucose sensor and an external credit card-sized computer (like a Raspberry Pi) connected to a power source. I used OpenAPS exclusively for nine months before other systems were developed, like Loop (created by Nate Racklyeft and Pete Schwamb) and AndroidAPS (created by Milos Kozak). I then switched to Loop exclusively for over a year. Now that I’ve experienced more than one system, I actually use a combination of Loop and OpenAPS, as I like different things about each. I like that Loop is very user-friendly and portable, allowing me to initiate a bolus from a smartphone app, so I use it when I’m out and about; the only hardware I need for it is small enough to slip in my pocket. OpenAPS, on the other hand, seems to handle glucose scenarios better for me but needs a constant battery source and wifi connection, so I use it in places where I can leave it plugged in and connected to the internet—like my home or office. To my knowledge, I’m one of the only people using a combo of two systems, but it works for me.
BT1: If someone wanted to make one, where would you direct them or what would you want to share with them?
Melissa:I would send them to a fantastic blog post by Tim Street on the different systems available and how to choose which one might be right for you.
BT1: And what have you learned from your time using DIY?
Melissa: In the two years that I’ve used a DIY closed loop, I’ve determined that no company with a device on the market today is offering me what I have at my fingertips now in my homemade system. I spend less time on my diabetes and my time in range is improved, but more importantly, I feel like it takes the edge off of “mistakes” I make, turning a missed or miscalculated dose of insulin into a blip rather than a potential catastrophe.
BT1: What’s been successful or worked well in terms of your care with the DIY closed loop system?
Melissa: Compared to the early commercial versions of these systems we’re seeing come to market, it’s my opinion that the DIY systems just don’t require the same hoops to jump through. I don’t have to trick my system into doing what I expect to do. I don’t have to know some secret tip to be successful. I don’t have to feed it “fake carbs” or lie to it about my calibration like I see some people out there doing.
BT1: What has been most challenging?
Melissa: The three most challenging things about using a DIY system are (1) tracking down the hardware you need for the system you want to create, particularly a pump with the right kind of open radio frequency as there aren’t that many still in rotation, (2) setting it all up to get going and (3) becoming comfortable being your own tech support.
BT1: What role do you see Bigfoot playing in the future of type 1?
Melissa: My husband and I both had our sights set on being a part of Bigfoot from its inception, as our team seeks to both broaden access and improve ease of use for an audience that has neither the tools nor resources to access these technologies today.