Reading through the latest COVID-19 diabetes statistics from the UK/NHS , I’m reminded that I’m in a much stronger position today with my blood glucose levels than I was two years ago.
Thanks to DIYAPS.
I”m not about to kid myself that I’m invincible – far from it – But it’s sobering to realise that if I do get COVID-19, I’ve got a better chance of not dying from it than I would have, had my blood sugar levels remained the same as they were two years ago.
Reflecting on the breakdown of COVID-19 mortality by age in type 1 diabetes, I realise a lot of those in the older age groups that are dying at a greater rate from COVID-19, spent the first decade or two of their diabetes without access to blood glucose monitoring. They relied on urine testing. Compared with BG monitoring it was a blunt tool.
I can remember how blunt a tool it was because a Clinitest tablet in a test tube of urine is what I used to measure my glucose for my first year with type 1 diabetes in 1980. It was part of my therapy, along with one shot a day of long acting insulin.
Apparently my paediatrician loaned us a BG meter for a month when I was thirteen. I asked my mother how the data from this loan period was used. “The doctor told us your blood sugar was high,” she said. I guess he increased my daily dose of insulin when I went to see him at the end of the loan month.
There was a bit of resistance to the idea of patients having their own meters back then. “What would they do with the information?” was a question that was often asked, and some worried about the danger inherent in allowing patients to make their own treatment decisions.
Blood glucose monitoring had a major impact on long term outcomes for people with type 1 diabetes. And this impact can be seen now in the NHS stats.
There’s so much luck in when you were born, where you were born and what resources you have access to.
The latest data is a reminder that diabetes is a generational, historical phenomenon. And that the current moment is ripe with possibilities.
Closed loop systems for type 1 diabetes should make long term side effects of diabetes pretty much negligible. For closed loop people need access to affordable insulin, loopable pumps and CGM.
The solution is actually right here, now. It just needs funding.
Let’s speed the process up. Let’s close the gap in those graph lines.
This partnership is a step forward for a company that says it is committed to patient choice and interoperability.
Because this is a non-exclusive agreement with Dexcom, Ypsomed is also open to future integration with other CGMs.
Dexcom G6 data in mylife app
From October/November 2020, it’s expected that Dexcom G6 readings will be integrated into Ypsomed’s mylife app.
Although G6 readings can be used for dosing calculations through the app’s bolus calculator, people with the current version of the Ypsomed pump will still need to manually enter the bolus into their pump.
Next pump will enable bolus from phone
The next version of the Ypsomed pump, which is expected to be available in the first half of 2021, will enable bolus from phone.
The company says people using Ypsomed pumps will be able to automatically upgrade to the bolus from phone version of their pump, for no charge. Apparently this version will not need to go through the therapeutic goods administration approvals process in Australia.
This 2021 upgrade will not be the TypeZero looping version however.
The looping version of the Ypsomed pump will need to clear the regulatory approvals process, which can be lengthy. I look forward to hearing updates on this timeframe.
Also, it is unclear whether users of current or interim (bolus from phone) Ypsomed pumps will be in a position to upgrade for free to the TypeZero compatible pump, or whether additional costs will be incurred. It will be great to get more information on this too.
Discreet pump, open protocols
I’m not usually in the business of writing product endorsements. But Ypsomed does interest me because:
They were one of the first companies to sign up to JDRF Open Protocols initiative, which indicates a commitment to creating systems that are interoperable and give maximum choice.
It’s a tiny pump with a 160 ml reservoir. This will not suit everyone unfortunately, but as I use around 25 units of insulin per day, and I don’t have pockets in a lot of my clothing, this tiny pump is the first one I’ve found that I can slip into my my bra without a noticeable bump.
I’m not trying to sell anyone on this product. This is a very non-descript pump. I’d love to see something funkier. But…
I’ve been waiting for a tiny pump that will allow me to use either its ‘own’ algorithm or an algorithm of my choice.There are no guarantees here, but at the moment, I’m wondering if Ypsomed could be a good bet.
The non-exclusive agreement with Dexcom means Ypsomed is also open to partnerships with other CGM companies such as Abbott/Libre.
The contract covers both the G6 and G7 (future version) of Dexcom CGM.
Already, in Australia at least, Ypsomed has had deals offering six months free supply of Freestyle Libre sensors for new users of Ypsomed pumps, so this relationship seems to be in place already.
I’m guessing there may well be an announcement for integration with Libre 2 sensors at some point.
Will future Ypsomed pumps loop with DIYAPS systems?
This is a good question. I believe the Baker Institute in Australia will commence a trial this year using a bluetooth-enabled clinical trial version of the Ypsomed pump with AndroidAPS.
Meanwhile, Tidepool has a mission to create Tidepool Loop, an approved version of the DIY Loop app, to be available in the App Store for iOS users. I sincerely hope Tidepool and Ypsomed are talking. This would seem to fit with both Tidepool and Ypsomed’s interoperability/maximising patient choice imperatives.
So, I guess, it’s a case of “watch this space”…
New Mio-like sets
Ypsomed has just been granted therapeutic goods administration approval for a new type of set that is essentially the same as the Medtronic Mios (and discontinued Animas Inset II).
The sets are produced at the same facility as the Mios but have their own special Ypsomed proprietary connector.
These new sets are expected to be listed on the national diabetes supply scheme (NDSS) in Australia as subsidised pump consumables in the near future.
360 degree clip
A major consideration for me in any new pump commitment is wearability. My next pump has got to be able to slip into my bra and also clip onto my waistband. And if it’s on my waist I want it to be super grippy.
Ypsomed is a light weight pump, and although the 360 degree clip is not as grippy as Medtronic’s old slim waist clip for their 22 and 54 series pumps, it does rotate which could be useful, and it did pass my rigorous ‘going to the loo quickly without falling off’ test.
Data visualisation, sharing with healthcare providers
Pump and CGM data will upload to the cloud any time the mylife App is open. Data visualisation is available through mylife Cloud software which also allows people to share their data with their diabetes clinic.
It’s always worth checking real life user reviews of pumps before buying them. I’ve never used this pump myself.
Here is a snippet of feedback from one person I queried about Ypsomed about six months ago:
“I’ve only been using this pump for three weeks, so my opinions are still forming. So far, I quite like it. It’s very small and lightweight. I love the bright screen and large icons and fonts (I’m legally blind, so this is one of the main reasons I went with this pump).
I like the infusion sets, and in particular having an inserter available for steel sets, which I use. The tape on the infusion sets seems good and so far they cause me much less irritation than Contact Detach sets used to.
I also enjoy using the app to calculate boluses and log events and I love having the ability to pre-fill cartridges weeks in advance to store in the fridge. The cartridge-change process is the most simple and fastest I’ve had on any of my pumps. It takes 30 seconds and you’re done.
I do wish that the pump stored insulin on board on the pump itself (it stores it in the app), and the basal rates are a little annoying to get an overview of when changing (because you can only see one hour at a time). But those are fairly minor complaints.
The only big issue I’ve had is that I’m trying to use the pump with Fiasp and it appears to cause occlusions often in the tubing and infusion set. I’ve had five occlusions over the past three weeks, which is probably more than I’ve had in my years of pump experience. The good news is that the occlusion alarm works well!! I’m going to be switching to NovoRapid so fingers crossed tha t solves the problem. I’ve read that Fiasp causes occlusion issues with other pumps, so I think this is more of an issue with Fiasp than an issue with the pump.
Good luck to everyone on making the decision on your next pump in this crystal ball gazing era we find ourselves in.
Looking forward to hearing about more companies taking an open protocol pathway and maximising algorithm and CGM options for people with diabetes.
Nate Racklyeft, developer of DIY Loop, described it as Ben’s magnum opus.
It remains the foundation of all the systems in use today, either literally or spiritually. (Nate, Facebook, 2017)
For more than ten years now, Ben has been involved in changing the status quo in diabetes through his work with the Nightscout Foundation, Tidepool and Dexcom and by making submissions to regulators.
When I discovered his writing, presentations and interviews, at the end of 2017, I also became intrigued by his integrity, his quiet activism, and the way he spoke about diabetes in a heartfelt, nuanced, and deliberate way. (See links at end of post.)
It was a breath of fresh air for me after 38 years of living with type 1 diabetes.
When I spoke with people who know Ben at D-Data last year, and recently on Twitter, the first thing that became obvious was the strength of feeling people have for him. Two people said outright, “I miss Ben.” One of them had moved to a different country. The other was in a different city to Ben, but had known him well during his decoding and Nightscout days in San Francisco.
I wondered, “What sort of person is it that is so deeply missed?” When I met Ben in San Diego a week later, things fell into place.
Firstly, Ben tells the truth. Although he sometimes keeps you on your toes by putting a cryptic (not to him) or evocative spin on things. A spade is definitely a spade with Ben, unless it’s a squirrel-shaped thing. Ben likes to play with words. But if you ask him, and he answers, you’ll get right to the core of the truth. That means it isn’t always going to be comfortable for everyone in the room.
Like others in the We Are Not Waiting movement, Ben has a strong drive to move things forward to a better place while many of us are still catching up with the past.
The thing with Ben is, his IQ is off the scale. We wanted to find an investor to set him up for six months and just leave him to it. (Weston Nordgren)
There are not many kinder or more selfless than Ben. (Melinda Wedding)
When my plane touched down in San Diego last November, to meet with Ben, I found he had sent me a photo of his car, told me exactly where the airport exit would spit me out using a clear symbol that I’d recognise, and got out of his car to greet me. Clear, confidence-building instructions. And a warm welcome. This is exactly the type of person I want designing my diabetes apps. In fact, these are exactly the things I want in my app.
And the good news is, Ben has been designing them.
When I met with Ben last year, he had been working for Dexcom for three and a half years, and had a sizeable list of features in mind that would make life easier for people with diabetes.
He also talked about his research into building trust through automation. I was intrigued, as someone who’s done research into user trust in technology myself, and I was grateful that someone was thinking about diabetes design through this lens.
As Katie DiSimone of Tidepool puts it: “The contributions Ben continues to make regarding quality of life considerations in device design, and access, are equally as impressive to me as his decoding and open source contributions. He’s a real asset to us all.”
Ben’s impact went even further for me.
His words and ideas, from the moment I encountered them, kicked me out of a kind of psycho-cultural ‘diabetic coma’. They jolted me into a new way of seeing diabetes and the culture I’d been immersed in since childhood.
The whole DIY movement turned the diabetes narrative around.
Here is how I tried to explain it in my first draft of this blog post:
I didn’t recognise the state I was in, because from age 12 it had become part of my identity. My schemas (the way I understood the world) were still being set up when I was diagnosed with diabetes.
The myths of insulin as cure, and diabetes as manageable, were pervasive.
But diabetes wasn’t manageable for me.
My attempts were misguided, the tools too blunt. And I wasn’t alone. But I didn’t realise it.
Like many others of my generation, I blamed myself and tried not to think about the future. Because of diabetes. And because of the diabetes myths.
The lightning struck for me in November 2017 when I discovered that people who had diabetes themselves, or had children with diabetes, had taken matters into their own hands and created closed loop systems. It was a serious overnight antidote. And I started my mission, with a kind of obsessive zeal, to try to find out as much as I could about the pioneers of the We Are Not Waiting movement.
War, truth and compassion
I loved Lane Desborough’s outing of diabetes itself as the common enemy. It was a war and it was a war we were going to win.
And John Costik, with his beautiful love and compassion for his son, Evan. When Evan asked him, “Make it better?” John responded, “If I can, I will.”
John’s cliff edge metaphor for diabetes was just one example of how the pioneers of this movement were the ones (for me) to finally call out diabetes for what it really was. His comments about insulin being a potentially lethal drug we are sent home with, and told, “give this to your son, maybe he needs this much. We don’t really know what the dose is. We’ll have to figure it out,” and “they don’t teach you how to integrate it back into your life. They don’t teach you how to be happy with it,” were spot on.
These were crumbs of compassion that many of us were not able to feel for ourselves, as children and teenagers (any age actually) due to the prevailing ‘pull yourself up by the bootstraps’ ‘if you just try hard enough’ attitudes towards type 1 diabetes at the time. Truth and compassion were being expressed by parents of children with diabetes. I absorbed every morsel I could find.
And the best thing was, it didn’t stop there. These same people were the ones actually doing something about it. Inventing tools that would change diabetes forever.
There he was, this young guy, with his thoughtful, ironic smile. Going back to first principles. Reframing the problem of diabetes and choosing his words carefully. There was no way he was going to let any of it stick to him. And this was incredibly powerful to see.
The words Ben used caused my brain to do a kind of quarter turn. It was like a deep mind reset button had been pressed and there was no turning back.
He referred to his insulin pump as the thorn in his side. He was toying with the audience and being serious at the same time. Weaving metaphor together with logic. Tentacles of layered meaning invoking the senses. I really enjoyed this use of language in the diabetes context. It was refreshing. Made me smile.
Ben spoke of the intimacyof the devices we have plugged into our bodies. Another quarter turn. We get so used to having these things on us and in us. By pointing out just how intimate our relationship with these devices was, and how our lives depended on them, he was strengthening the case for a patient’s right to access their own data, and to access their device protocols, in order to verify trustworthiness.
It was one thing for vendor reports to insist that the technology worked. It was another completely to be able to verify that it worked for your body.
Calling a spade a spade, ethics
In the Diabetes Hacking 101 article, Ben was asked about risk.
“What’s interesting with the risk is that [traditionally] we’re given a bunch of insulin and we’re told to take it. We hold people responsible for getting it right. That’s not a humane thing, there’s no way you’re going to be able to balance insulin with all your needs.”
It’s hard to know where to even begin when talking about the impact these words had on me. It was like a dose of soul medicine. And they got me thinking about ethics and responsibility in the whole post-DCCT era of type 1 diabetes care.
A sense of entitlement, right to your own data
How was the insulin pump making its decisions? Were the proprietary, hard-coded device settings making the correct decisions for your body? Ben called for the application of science to find out. He made the link to precision medicine.
I guess for me – when I stumbled on Ben’s writing, interviews and presentations, at the end of 2017 – it was the first time I felt a sense of entitlement. Why had I been settling for less? Forget the blame issues. I deserved better therapy.
The way Ben differentiated between the risks of diabetes and the risks of diabetes therapy, was another important distinction, as was his use of the term insulin reaction rather than hypo.
Even pointing out the risk that lay with reading a BG number from one computer (CGM) and typing it into the other computer (pump) was refreshing to hear. The practice was not only burdensome, but error-prone.
High fidelity therapy leads to humane care
Ben uses the term high fidelitytherapy to describe therapy where effort is rewarded with results. This is a psychologically important feedback loop, important for mental health.
His opening sentence was clear: “Type 1 diabetes is among the toughest health conditions to manage both by the affected patients and by the healthcare professionals who assist them.”
Now that we have high fidelity therapy, tools for remote monitoring and artificial pancreas systems, it is easier for us, collectively, to see and acknowledge how difficult the task of type 1 diabetes has always been, for all involved.
With tools to both understand the factors involved in a detailed way, and address them, a new, more honest, collaborative and useful discourse is emerging.
Time well spent – Time on task
Quality of attention, embracing life, being in the moment. The gift of giving someone or something in your life your undivided attention.
One of the answers to “why do people miss Ben?” is surely the fact that when you are with him, he gives you his full attention.
Ben was most generous with his time. I deeply appreciate all his initiative and leadership. (Martin Haeberli)
Ben uses the term Time On Task to describe the need to develop technology that allows us to focus on life and and not have diabetes break our flow. Technology that minimises the amount of time we are “pulled into screens” to manage our diabetes.
As someone who’s worked in usability consulting and education, Ben’s ideas about time on task really meshed with my own.
I’ve noticed differences between various diabetes systems in terms of how well they facilitate this, and have loved customising my own DIY systems to allow me to do things quickly on the fly.
I’ve been frustrated over recent years when new versions of insulin pumps emerged that seemed to decrease in usability with each iteration, presenting the user with an increasing number of steps to get a simple task done. I’m hopeful that this will change as human factors specialists, and people with diabetes themselves, are employed in industry.
Usable, intuitive design in medical devices is a crucial aspect of creating high fidelity, humane care.
I’m pretty sure I heard Ben suggest, at last year’s American Diabetes Association conference, that Time on Task could be used as an outcome measure for diabetes in addition to Time In Range. I really love this idea. What a great thing to focus on in a medical consultation. How’s your time on task going? How’s your ability to focus on life without being interrupted by diabetes going?
All, once again, part of Ben’s humane care principal for those developing diabetes technology to keep in mind.
Playing with diabetes
Like many programmers I’ve met, Ben is super creative.
He’s done some fun experiments with sonification of blood sugar levels.
And if you want to get a feel for the magnitude of his contributions to diabetes, check out this animation he created which includes every commit he made to Nightscout, Decocare and OpenAPS.
Ben studied music and computer science at university, and initially planned to major in music and embark on a career as a performer. When he was diagnosed with type 1 diabetes he changed his major to computer science, figuring he’d need a stable job in order to be guaranteed medical insurance in the US.
Ben sings and plays at least two instruments, piano and ukulele.
I also love the way Ben plays with technology to bring people together as a community. He has some really interesting ideas on ways to make the task of diabetes more of a shared, supportive experience.
In November 2014 he staged an ‘empathy building experiment’ where people added their Nightscout URLs into an aggregator to produce Halloween lights.
Who is Ben?
One of the things that really intrigued me about Ben was, where did he get his persistence and drive from, to continue with that initial reverse-engineering work, in the midst of so much uncertainty, for so many years?
Some clues lie in Ben’s background.
He is the son of a research scientist who worked for Lawrence Livermore National Laboratory. He came from a family that had their own Summer hackathons and provided him with a grounding in critical thinking and the classics.
When I asked Ben where he got his drive from he said:
I’m a white male raised by evangelical parents. I benefit from all of white male privilege in America. So I can use that in ways that will benefit people in general.
And the interesting and unfortunate fit is that needing insulin this way is destabilizing for a lot of people in ways that can be fixed – in ways I have technical expertise in solving.
Ben mentioned the parable of the two sons.
“But what do you think?
A man had two sons, and he came to the first, and said, ‘Son, go to work in my vineyard today.’ He answered, ‘I will not,’ but afterward he repented, and went. He came to the second, and said likewise. He answered, ‘I go, sir.’ but went not. Which of the twain did the will of his father?”
They said to him, “The first.” (Matthew 21:28–32)
A sense of purpose, mission
Ben encouraged people to share their code as open source. He asked people “what is your role going to be?” and helped establish the pay it forward ethos of the We Are Not Waiting movement.
Many people have found a sense of purpose in the movement, as well as a source of support, inspiration, new learning and community. There is a strong sense of loyalty.
Open science → innovation → high fidelity humane solutions
In Derek Russell’s interview with Ben for the Data Binge podcast, September 2019, Ben emphasised:
The important thing is not limit what could come in the future. It’s very difficult to know who is going to come up with the next great idea to enhance your own product.
There’s a lot of temptation in industry to say, well we shouldn’t leave any money on the table for someone else to collect. There’s an unfortunate harm that comes to society as a whole when we make decisions in such a way that it limits who has the ability to do that innovative work.
That’s one of the lessons we’ve learned from the DIY community. Given the chance, patients can help industry move towards greater innovation for the benefit of everyone involved.
When you have an ecosystem that’s accessible – an ecosystem that democratises the effort, and these humane concepts – this concept of high fidelity – the more effort that you put into the system, the results should be better for you.
If that becomes a requirement of every piece of technology you are working on, then the results are fundamentally going to be more humane for people.
Seeing new versions of artificial pancreas systems emerging from committed DIY developers every few months now, with increasingly advanced features, and a high degree of personalisation and customisation possible, it seems this vision is being realised in the open source community.
The energy is incredible. We all just feed off each other (Tim Gunn, AndroidAPS developer)
And who knows what the future holds? This process is also pushing industry and regulators to develop faster ways to bring more adaptive, usable systems to market.
In 2020, with the emergence of citizen science in the diabetes space, it feels like we are on the verge of gaining valuable new insights from collective n=1 experiments, and patient-led initiatives like the OPEN research consortium. These outputs are highly relevant to people with diabetes, because they are patient-led.
I like to keep in mind the fact that Ben, and the other early innovators in the We Are Not Waiting movement, were involved at a time when there was a great deal more uncertainty and trepidation about legal implications.
“I was keeping my head under the radar,” Ben said on Twitter.
There was a lot of excitement and community good will, but there was also a lot of pressure. A lot of responsibility.
My whole Nightscout/looping journey is thanks to Ben. (Kate Farnsworth, creator & moderator of Looped group on Facebook, which now has over 21 000 members)
Along with others, Ben was involved in early meetings with the FDA and sought legal counsel along with Hugo Campos, Karen Sandler and Jay Radcliffe, which resulted in patient access to data being legally endorsed through a DMCA exemption for medical device research.
He worked unpaid on the open source diabetes project for some time without health insurance. I can only imagine, that for someone with type 1 diabetes in the US, this must have been anxiety-inducing at times.
As the number of DIYAPS users grew, the demand for help online grew too. People chipped in from all parts of the globe to help answer questions. Exuberance and gratitude levels were high, but still, volunteers were stepping in to fill a need unmet by the diabetes establishment, and the need was significant.
I can only imagine that the pressure on some of the key people involved in the movement must have felt, and must still feel, very intense at times.
The questions, opinions, and imperatives rolled in from users and non-users alike in the chat room. It didn’t take long before I felt overwhelmed.
I hadn’t realized that passion projects could outlive their passion, but it happens every day in open-source projects. Loop was going to be an endless “loop” of development unless I took steps to slow down. (Nate Racklyeft, who now works at Apple.)
Ben described the pressure too, saying by the time he moved from San Francisco to San Diego to begin work with Dexcom in 2016, he’d been “living and breathing” open source diabetes 24/7 for years.
“There was a lot of pressure” (Ben)
Ben said he intentionally didn’t get internet connected at his new home for some time.
I’m guessing he needed a break. Some recovery time.
We visited a beach where Ben used to spend as much time as possible, gazing out over the ocean, after his move to San Diego. It was a beautiful spot.
Power and control
As with all areas of health and society, power imbalances and issues around control have influenced the evolution of care and innovation in diabetes.
Right, as the world goes, is only in question between equals in power, while the strong do what they can and the weak suffer what they must. (Github – Bewest Insulaudit)
Getting access to the data in a usable format, and having access to the insulin pump protocol, was an absolutely critical aspect of restoring power and agency to people living with diabetes.
With so much already achieved, Ben continues to advocate for open source practices to become a mainstream part of medical device development.
As recently as September 2019, Ben testified at the FDA’s Patient Engagement Advisory Committee meeting about the need for device manufacturers to invite patients to examine medical software prior to devices reaching the market, in order to help iron out bugs and safety issues.
As Ben notes, in the Data Binge podcast, there is still work to do:
Across the board in healthcare, the fidelity of the experience that we get is not where it should be.
Ben mentions some of the initiatives that are emerging to help create better health outcomes and increase patient satisfaction, leveraging the power of data and technology to drive better incentives and a better patient experience.
Ten years on, with three DIY closed loop solutions available, remote monitoring through Nightscout, diabetes management solutions through the non-profit, Tidepool, and user-centric industry solutions finally coming to market, the power balance has shifted significantly.
As one Australian DIY looper said:
“In 34 years of living with type 1, it’s the very first time that I’ve felt absolutely in control of what’s happening.” (Schipp et al, 2020)
As Ben hangs in there, like the rest of us, through this crazy 2020 COVID-19 lockdown period, I hope he can pause and feel good about the incredible difference his efforts have made to so many peoples’ lives, including my own. I hope he can feel it deep inside his heart.
To all the pioneers of this movement, to everyone out there on Gitter, Zulip, Facebook, Slack channels, Twitter, everywhere. To everyone writing code, trouble shooting, advocating for access, holding build events, researching, developing user-centred solutions for non-profits and industry, fast tracking knowledge as citizen scientists, moving things forward…
Let us all consider how we can unify our demands for trustworthy, high fidelity therapy that in adapting to our lifestyles allows us to return to the lives we want to pursue with the people and activities we love. Let us make the benefits we discover accessible to as many as possible. (Github Bewest/Insulaudit, 2018)
And finally – Quantified Self Public Health meeting, May 2016 – In response to the suggestion that “in a few years we might just have a closed loop artificial pancreas system,” Dana Lewis announces that actually, eight people in the room have one right now, and Mark Wilson, Ben West, Jason Calabrese, Jim Matheson, Jason Curry, Mikel Curry, Erzsi Szilagyi and Scott Leibrand, file onto the stage.
I sometimes wonder how life would have turned out if Julie really was my diabetic sister. Maybe I never would have thrown the baby out with the bath water? Maybe I never would have felt the need to make the pact?
Life turned out pretty well anyway, but it could have been so much easier.
For all of us.
I still remember it, forty years down the track. I was twelve and Julie was the ‘diabetic sister’ assigned to me when I was admitted to hospital after diagnosis. She was gorgeous, warm, totally reassuring and calmly confident. She explained diabetes to me over a couple of days – showed me how to give myself injections (just one a day), and made the list of food exchanges seem perfectly reasonable (which of course they weren’t).
Julie recommended the red book with the artificial pancreas diagram and my mum bought it for me. There was a sense of relief and exuberance in feeling alive again after the confusing weeks of DKA.
On Julie’s third visit, the day after I got the drip out, I must have said something that gave away my gullibility, that indicated my mistake. Because I saw her face. A fleeting, startled look, and then what was probably a look of compassion when she realised.
The penny had dropped for me that Julie didn’t actually have diabetes herself.
I was “a diabetic” and she was “a diabetic” sister, so it was an easy mistake for a 12 year old to make. But I didn’t realise that then. I was mortified at my own error.
It was as though something I was holding on to, a kind of lifeline, was let go. Julie’s visits tapered off quickly and I began a kind of psychic drift.
I studied the red book, did my maths homework, and lurked around the kids ward, imagining what everyone was in for. There were colourful posters on the walls, bright lights, and quiet children spaced out in their beds. No one said much.
The world seemed a little cooler and lonelier. A bit more fragile too. I think I saw Julie once or twice again briefly, before I was discharged at the end of the two weeks.
But I still had Doctor Montgomery.
Doctor Montgomery came every morning to visit me on his rounds. He was my paediatrician. A kind, round man whose eyes crinkled when he smiled. He seemed middle aged, just like all the other adults did when I was twelve.
He told me his mother had type 1 diabetes and he used to give her her injections.
Doctor Montgomery’s office had giraffes on the walls and stuffed toys on the examination table. On the one hand this felt too childish, on the other it was comforting.
I could always see one of the giraffes when I looked across the desk at him after I’d handed over my log book for inspection.
I noted -, +, ++ or +++ in the logbook to represent the amount of sugar in each urine test. And I kept to the same once-daily insulin dose between appointments. I started making some of my results up just like all the other kids. Filling in the blanks. There was no HbA1c then. No way of knowing.
It wasn’t about being rebellious or lazy. It was just a matter of logistics. I took my test tubes, eye dropper and Clinitest tablets to school for the first two days and it was awful. Embarrassing. You had to go out of the toilet and add water to the tubes etc. One male friend who’s had diabetes even longer than me just laughed when I told him I took the kit to school. He didn’t even contemplate it.
I’m not totally sure that anyone explained to me exactly what would be done with the results in the log books either. I don’t remember anyone pointing out what it was we were looking for. I guess the insulin dose was adjusted based on the readings. Once every three months.
My mother always sat next to me during my appointments with Doctor Montgomery. I could feel her anxiety and I sensed that pleasing the Doctor was a priority.
For some reason, at one of the appointments, my mother was not there. It felt more relaxed and Doctor Montgomery managed to coax me into speaking.
I really enjoyed this appointment, but right at the end he said something that puzzled me. He took off his glasses, winked at me, and said, “Mary Anne, one day you’re going to just sit down and eat a whole bag of Minties, and that’s absolutely fine.”
I remember thinking this was really weird advice. There must have been about 100 ‘portions’ of carbohydrate in a full bag of Minties, and no way for the insulin to process it. Also, I didn’t really like Minties.
Anyhow … one day, not long after, I did actually find myself with a bag of Minties. I ate every one of them and sat there afterwards with the Mintie wrappers, tearing them into thin strands. Then I joined them together, in a chain.
The whole thing was very satisfying.
And I never did go back for another appointment with Doctor Montgomery. I was moved into adult care.
Ruby was five, in overalls and fairy wings, legs swinging fast beneath the chair that was too high for her. “Would it be ok for Ruby to touch your Dexcom?” her father asked. “Sure,” I said, and shimmied over to where Ruby was sitting.
She reached over and traced the Dexcom bump through my sleeve.
I asked her if it was ok for me to touch her Libre. She said “yep!”
I touched her Libre/Miao Miao through the pink rock tape that was wrapped in a band around her upper arm. Then I turned sideways and we chinked our devices together. “Shazzan!”
I told Ruby we shared the same special super power. She looked up at me, right into my eyes and beamed.
I smiled back at her.
Biggest smiles ever.
Ruby’s father told us that no one had mentioned closed loop as an option for diabetes when his daughter was diagnosed less than a year ago. But he figured something “had to be out there” and did an internet search. Ruby’s family are currently investigating DIY looping solutions for her.
In the meantime, Ruby gets her insulin through an insulin pen with this nifty spider-like device collared around the needle tip. It was designed by an engineer with type 1 diabetes. Ruby’s parents explained that it hides the needle, distracts her, and stabilises the pen on her body during injections.
Just another example of clever patient innovation.
When I switched on my OpenAPS ‘artificial pancreas’ in May 2018, it was the end of a long wait. A 38 year dream come true. I bounced around like a maniac for months on a high, and my gratitude to the smart, kind people who developed the system knew no bounds.
What I wasn’t prepared for, was that within an hour of ‘closing the loop’ I’d be hit by a wave of emotion so powerful that it would pretty much render me incapable of moving. I was lying on my bed, gleefully texting some old diabetes pals with screenshots of my Nightscout site, to show them the algorithm controlling my diabetes, when the true impact of the technology hit me.
The impact of the burden, finally being lifted. The impact of the burden, finally being shared.
My mind wandered to the generations of people with type 1 diabetes that had gone before me. Born at the wrong time to benefit from closed loop technology. I thought about a friend, diagnosed in the ’70s, who’d had a very difficult experience with diabetes and was on dialysis after the kidney part of her kidney-pancreas transplant failed. I thought about Mary Tyler Moore (!) and pioneers like Deb Butterfield, born too soon. I thought about friends who did not have the resources, tools or finances to benefit. Yet.
And then, as the tears started to stream down my face, I realised that I was crying for myself.
We don’t like to feel sorry for ourselves with diabetes. We are great stoics. We just get on with it because we have no choice.
We don’t all get a diabetes hug. We don’t all get a whole lot of compassion. And it can be hard to dredge it up for yourself, especially given the prevailing medico-social context of diabetes with its unintended insults.
So I just lay there, for about an hour, feeling things I hadn’t felt (or allowed myself to feel) for 38 years. And thus began, not just the process of reclaiming decent blood sugar levels, but the process of recovering, re-integrating and healing from type 1 diabetes itself.
‘What if an insulin pump was like an extension of the human body?’
It’s always nerve-racking walking into a conference where you don’t know anyone. But I was thrilled to be at DiabetesMine’s D-Data19 in San Francisco last November, and when I spied a serene looking man a bit younger than me, sitting alone near the front, I figured it was a good bet.
It worked out well because I’d perched myself next to Richard Spector of Cam Med. Richard introduced himself and told me he’d had type 1 diabetes for over 30 years. I was using AndroidAPS. He was using DIY Loop. We talked about what it was like to be teenagers with diabetes and then I asked him what he was there for.
He showed me.
Richard procured a multi-layered, bendy, slip of a thing from his pocket and told me it was an insulin pump. The EvoPump. Well, not quite a pump. Yet. A moldable pump prototype still in development. Animal trials are planned for this year, with hopes that a USA IDE submission will be followed by human trials in 2021.
There are plenty of hurdles for Cam Med to overcome if their pump is to actually make it into the marketplace, but it’s won awards for its microfluidic design (Mass Challenge, CASIS/Boeing, T1D Exchange) and has had some promising investment (Massachusetts Life Sciences, ATTD, NEPDC, JDRF).
It certainly captured my imagination, and the version of the prototype I saw at least, appeared thinner, more pliant and smaller, up close, than it does in any of the photos I’ve seen so far.
At less than 1cm thin, the Evopump is set to have a lower profile than any patch pump currently on the market. (Less likely to catch and bump on things?). It has multiple drug delivery channels so has potential for use in fully closed-loop dual hormone systems (with both insulin/glucagon).
And, yes, I do realise this post is reading a lot like an advertising pitch. But…
Sometimes you need a dream, and this prototype ticked a few of my ‘dream’ boxes.
1. Creative ‘outside the box’ design thinking
Innovative design is tricky at best in the medical device industry. It’s hard to get projects up, even when the ideas are good ones that could reduce pain and burden for people with diabetes. It felt like a tonic to me in this ultra-conservative med tech environment to find a company that had re-thought both the insulin delivery mechanism and the form factor.
‘Invisible under clothing’
I’ve had a lot of clothing restrictions over the past 20 years of pumping and 37 years of NLD (don’t google it).
The idea of being able to wear the clothes I want, including tight-fitting tops, dresses & pocketless outfits, because I have a slender, soft insulin pump that molds to the contours of my body, is very appealing.
Plenty of women who clip or slide their tubed insulin pumps into their bras lament the ‘third boob of diabetes’, an effect caused by clunky insulin pumps. The EvoPump promises to solve that problem.
I liked imagining a future that was free of undignified insulin pump disasters caused by floppy insulin pump clips.
I liked imagining all the new insulin pump site locations that would be possible with this type of design. All that extra site real estate opened up for use. Absolute gold for a long time injector and pumper like me.
And as funky as it was to be a cyborg sometimes, I liked the idea of not having to resort to precarious solutions like this.
Then again, would this EvoPump actually stick well, and stick without causing skin reactions? What sort of wear and tear effect would it have on your skin? I’ve heard varying reports about existing patch pumps which make me wary. Would the EvoPump sweat off in hot climates like the one I lived in? Plenty of open questions.
But if this pump, or another like it, does actually work the way it’s being imagined, it could be an appealing option for all of us – men, children, teenagers.
I remember being shocked the day I excitedly rocked up to a friend’s place to show her and her 21 year old daughter (who has T1D) my new DIY loop system, thinking I was supplying a piece of magic information that might transform their lives. The gorgeous 21 year old daughter just shrugged off the prospect and shot me a horrified, embarrassed look. No way was she even going to contemplate having such a clunky, bulky insulin pump system attached to her. “They need to make it smaller, invisible!!” she said. I like to think the EvoPump, or a pump like it, could be a solution for her.
What else is the company saying about their plans for the Evopump?
‘Algorithm-agnostic, any CGM’
EvoPump is being positioned as an ACE Pump (Alternative Controller Enabled pump category in the FDA approvals process) so it’s being designed to be interoperable and work with a user-chosen controller app and CGM. I’d like to think this would mean it would be compatible with Tidepool Loop, AndroidAPS and perhaps other looping systems that are either still in development or haven’t even been thought of yet. Maybe a machine learning algorithm based on differential game theory, who knows?
The bottom line is, at least based on what Cam Med is saying at the moment, the user gets to experiment and decide for themselves which algorithm / system / smartphone or smartwatch works best for them.
An industry insider commented to me that this type of interoperability would require extremely good bluetooth communication to work. The EvoPump uses bluetooth low energy (BLE). The bluetooth communication is just one aspect of this technology that needs to be developed and proven before we can assess its reliability.
Microfluidic insulin delivery mechanism
Most insulin pumps use mechanics to drive insulin delivery. With the EvoPump, an electro-chemical reaction generates gas bubbles which cause medication to be delivered from multiple reservoirs through a structural membrane. Watch this space.
Again, this is too premature to speculate on really – as I understand it, gaining regulatory approval is an expensive, time-consuming process – but Cam Med has stated they have an international market in mind for their insulin pump, and as an Australian, even the mention of this makes me smile.
Does 2020 finally herald the dawn of a new decade in usable, freedom-inducing design for type 1 diabetes tech?
It works for me. Let’s shine a light on how important usability is for those of us living with type 1 diabetes. The small things matter. It’s a tough condition to manage on a practical and emotional level. Let’s embrace the best possible design ideas to give people with diabetes maximum joy and freedom in this new decade of promise. It might just make good business sense too.
Links for further information below.
Thanks to any reader that’s made it this far and especially to anyone thinking of reaching out to suggest wearability solutions that I might not have thought of 🙂 I really appreciate this, but no, I don’t want to wear a garter or a waist belt for my insulin pump, & I already do, and love, the ‘hide it in the Spanx’ trick from time to time.
I’m excited by all types of innovative design in diabetes, and would love to hear from people in DIY spaces or commercial, working on solutions that embrace user centred design.
There are a couple of tubed pumps I have my eye on at the moment that are small and seem to be thinking more about wearability and aesthetics. I hope to write more about these in 2020.
Disclaimer: I have not tried the Omnipod patch pump. I would be interested in doing so but we don’t have it in Australia. Yet.
Image 1 of this post: Zhifei Ge, co-founder and CTO at Cam Med Inc. Zhifei Ge was a roommate of Yanzhe Qin, the visiting fellow at Harvard’s School of Engineering and Applied Sciences, who thought: Why not make a pump that’s an extension of the body? The two started working on the EvoPump in 2013. Zhifei Ge was a PhD candidate in mechanical engineering at MIT at the time. Image from Boston Herald’s 2014 article.
Further information on EvoPump
T1D Exchange article has a good explanation of EvoPump’s micro pump / multi-layered design, June 2019
I was invited to give a guest lecture to final year Health IT students at The University of Queensland last month about the DIY artificial pancreas technology I’d been using for the past year and a half.
I thought it was important to explain:
history of type 1 diabetes therapy 1980-2019 (personal perspective)
the impact of decisions made by the tech industry
where we are at now in 2019
how it was patients taking matters into their own hands that made all the difference.
and as Slideshare
Like any personal historical account it will contain biases and omissions.
Don’t hesitate to comment below if you notice anything that needs correction or want to add to the story in any way. I’d love to hear from you.
The federal government of Australia is conducting a survey to determine whether continuous glucose monitoring devices (CGM) should be subsidised under the National Diabetes Supply Scheme (NDSS). The following research and outcomes data shows that yes, CGM should be made affordable for all people living with type 1 diabetes as an urgent priority.
Using CGM with an automated insulin delivery (AID) device has had an enormous positive impact on my life.
Artificial pancreas/AID systems are entering the Australian marketplace and have been used by members of the DIY community for over three years. They require CGM. This is the biggest development since insulin in 1922. But there is no use having it if people can’t afford it. Unfortunately the cost of CGM in Australia is currently prohibitive for most people.
This 17 minute ABC Science Show podcast (I’m interviewed with Jim Matheson and Tien-Ming Hing) highlights the urgency very well and explains the health outcomes that are possible IF people can afford CGM
Current situation using blood glucose test strips alone
Australia’s peak diabetes medical body, The Australian Diabetes Society, has set a HbA1c target of less than 7 (NGSP) as the glycaemic goal for people with type 1 diabetes because it is believed to give people the best chance of a healthy, long life. This is currently being achieved by less than 21% of adults with type 1 diabetes (Foster et al, 2019). The major limiting factor in achieving this target HbA1c is hypoglycemia. As discussed in the DCCT trials, achieving target HbA1c using currently subsidised methods only for blood glucose control leads to a 300% increase in hypoglycemia and one in five with type 1 diabetes now have hypoglycaemic unawareness which can be life-threatening.
It is recognised by leading medical practitioners and researchers that the desire for hypoglycemia avoidance contributes to the higher than recommended HbA1c outcomes (Choudhary & Amiel, 2018).
As described in research outcomes below, CGM use alone reduces the incidence of hypoglycaemia and improves HbA1c. When CGM is used in combination with AID ‘artificial pancreas’ systems, HbA1c and hypoglycemia are further reduced (Braune et al, 2019), there is a reduction in glycaemic variability, which has also been linked with a reduction in diabetes complications (Hirsch, 2015), and there are major improvements in quality of life including sleep, mood, well-being and energy levels (Hng & Burren, 2018; Crabtree et al, 2019).
This is a major breakthrough. It is difficult to convey to someone without type 1 diabetes just how significant the impact of these psychological, social, and quality of life improvements can be. Many people using these systems describe them as life-changing.
Automated insulin delivery outcome studies
Over 1440 people around the world are currently using DIY automated delivery systems which means there is over 13,700,000+ hours of user experience and data to draw conclusions from.
CGM improves glycemic control, reduces hypoglycemia, and may reduce overall costs of diabetes management. Expanding CGM coverage and utilization is likely to improve the health outcomes of people with diabetes.
“CGM may also provide a cost-effective means of lowering A1c in the general population. It is important for individuals with type 1 diabetes to have affordable access to and education about this technology”.
Subsidising CGM is an investment up front to save money on:
hospital ‘sick day’ admissions
admission for severe hypoglycaemia
Avoidance of Royal Flying Doctor trips to major centres in DKA for rural patients
Prevention of losing drivers licences due to severe DKA (maintenance of independence/livelihood/survival in rural areas)
cost to the Australian healthcare system of treating complications
“Achievement of target HbA1c in individuals with HbA1c ≥69 mmol/mol (8.5%) would reduce expected chronic complications from 6.8 to 1.2 events per 100 person‐years, and diabetic ketoacidosis from 14.5 to 1.0 events per 100 person‐years. Potential cumulative direct cost savings achievable in the modelled population were estimated at £687 m over 5 years (£5,585/person), with total (direct and indirect) savings of £1,034 m (£8,400/person).”
Currently blood glucose (BG) test strips are subsidised on the NDSS. People using CGM require significantly fewer strips and therefore receive less subsidy. Once newer CGM sensors become available in Australia (eg Dexcom G6) there will be only minimal need for BG test strips for those using CGM. Patients should be able to use their allocated subsidy for CGM.
CGM use reduces hypoglycaemia
Many with type 1 diabetes lose hypoglycaemic awareness over the years so cannot even detect hypoglycaemia in the midst of it. They need outside help to recover from the hypoglycemia and if it is not received the situation becomes life-threatening. According to researchers, between twenty and forty percent of people with type 1 diabetes experience hypoglycemia unawareness. Since it is repeat hypoglycemia that causes hypoglycaemic unawareness to develop, it stands to reason that CGM use is prophylactic. CGM use reduces the likelihood of developing hypoglycaemic unawareness in the first place. This, in addition to the quality of life, wellbeing and productivity improvements with CGM, is why it is crucial that we subsidise all people with type 1 diabetes, not just a sub group.
As Pratik Choudhary and Stephanie Ariel point out in Diabetologia (2018), ‘hypoglycaemia and the fear it causes make a significant contribution to the higher than desired glucose results seen in national audits and registries.’
More CGM and hypoglycemia research
Real-time continuous glucose monitoring significantly reduces severe hypoglycemia in hypoglycemia-unaware patients with type 1 diabetes. (Choudhary et al, 2013).
Hypoglycemia is the limiting factor to excellent glycemic control in insulin-treated subjects. Intensification of glycemic control was associated with a 300 % increase in the rate of hypoglycemia in the Diabetes Control and Complications Trial. CGM use revealed an alarming rate of daytime and nocturnal episodes of hypoglycemia in patients with type 1 diabetes (Awoniyi et al, 2013).
The studies I have listed in this article are just the tip of the iceberg.
The bottom line is, people with type 1 diabetes have been advised by the medical establishment, since the DCCT trials in 1993, that if they are to remain healthy they need to maintain tight blood glucose levels. Less than 21% of people with type 1 diabetes are able to do this with the tools currently subsidised in Australia. The use of CGM and AID systems means that these glycemic targets are finally achievable, but only if people can access and afford them.
If the government decides against making CGM affordable for all through the NDSS, it really is time to change glycemic reporting to reflect,that no, patient glycemic control is not ‘poor’ or ‘suboptimal’ but, in fact, as has always been the case, people with diabetes are doing the best they can with the blunt tools they have under difficult circumstances.
But why not follow in the footsteps of other countries and fund the thing that works?
“How much is one, pain and complication free, life really worth?”
This is the economic and ethical dilemma for the Australian government. To make your voice heard on the matter, please take a few minutes to fill out this government survey which runs until 25 August 2019 to ensure a healthy future for all with type 1 diabetes in Australia.
Patton, Mary Anne. “One year of DIY looping after 38 years of type 1 diabetes.” Australian Diabetes Educator, vol. 22, no. 2, 2019.
Diabetes Control and Complications Trial Research Group. “The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus.” New England journal of medicine 329.14 (1993): 977-986.
Choudhary, Pratik, and Stephanie A. Amiel. “Hypoglycaemia in type 1 diabetes: technological treatments, their limitations and the place of psychology.” Diabetologia 61.4 (2018): 761-769.
Braune, Katarina, et al. “Real-World Use of Do-It-Yourself Artificial Pancreas Systems in Children and Adolescents With Type 1 Diabetes: Online Survey and Analysis of Self-Reported Clinical Outcomes.” JMIR mHealth and uHealth 7.7 (2019): e14087.
Hirsch, Irl B. “Glycemic variability and diabetes complications: does it matter? Of course it does!.” Diabetes care 38.8 (2015): 1610-1614.
Hng, Tien‐Ming, and David Burren. “Appearance of Do‐It‐Yourself closed‐loop systems to manage type 1 diabetes.” Internal medicine journal 48.11 (2018): 1400-1404.
Crabtree, Thomas SJ, Alasdair McLay, and Emma G. Wilmot. “DIY artificial pancreas systems: here to stay?.” Practical Diabetes 36.2 (2019): 63-68.
Lewis, Dana, Scott Leibrand, and OpenAPS Community. “Real-world use of open source artificial pancreas systems.” Journal of diabetes science and technology 10.6 (2016): 1411.
Lewis, Dana M., Richard S. Swain, and Thomas W. Donner. “Improvements in A1C and time-in-range in DIY closed-loop (OpenAPS) users.” (2018): 352-OR.
Choi, Soo Bong, Eun Shil Hong, and Yun Hee Noh. “Open artificial pancreas system reduced hypoglycemia and improved glycemic control in patients with type 1 diabetes.” (2018).
Provenzano, Vincenzo, et al. “Closing the loop with OpenAPS in people with type 1 diabetes—experience from Italy.” (2018): 993-P.
Fonseca, Vivian A., et al. “Continuous glucose monitoring: a consensus conference of the American Association of Clinical Endocrinologists and American College of Endocrinology.” Endocrine Practice 22.8 (2016): 1008-1021.
McQueen, R. Brett, et al. “Cost-effectiveness of continuous glucose monitoring and intensive insulin therapy for type 1 diabetes.” Cost effectiveness and resource allocation 9.1 (2011): 13.
P. Choudhary, P., de Portu, S., Delbaere, A., Lyon, J. & Pickup, J. “A modelling study of the budget impact of improved glycaemic control in adults with Type 1 diabetes in the UK.” Diabetic Medicine 36.1 (2019).
Martín-Timón, Iciar, and Francisco Javier del Cañizo-Gómez. “Mechanisms of hypoglycemia unawareness and implications in diabetic patients.” World journal of diabetes 6.7 (2015): 912.
Choudhary, Pratik, et al. “Real-time continuous glucose monitoring significantly reduces severe hypoglycemia in hypoglycemia-unaware patients with type 1 diabetes.” Diabetes Care 36.12 (2013): 4160-4162.
Awoniyi, Omodele, Rabia Rehman, and Samuel Dagogo-Jack. “Hypoglycemia in patients with type 1 diabetes: epidemiology, pathogenesis, and prevention.” Current diabetes reports 13.5 (2013): 669-678.
First published in Australian Diabetes Educator, 8 July, 2019.
Patton, Mary Anne. “One year of DIY looping after 38 years of type 1 diabetes.” Australian Diabetes Educator, vol. 22, no. 2, 2019.
One year ago I started do-it-yourself (DIY) looping with the hybrid closed loop system, OpenAPS. I’d been living with type 1 diabetes (T1D) for 38 years and had dreamt of a closed loop solution since I was diagnosed at 12 years of age.
The impact of this technology on my life has been so profound, both physically and psychologically, that it feels as though I am no longer even dealing with the same medical condition. I now have access to ‘high fidelity therapy’ , and I am thrilled that commercial products are beginning to roll into the market so that, provided we get funding systems in place to ensure access, all people with T1D could soon have an opportunity to reap the benefits that people in the DIY community have been able to experience.[4-9]
In this article I aim to show how great the impact of hybrid closed looping has been for me, and to outline the features of OpenAPS and Nightscout  that have stood out for me as being particularly beneficial. Note that people with diabetes have found all three DIY systems (AndroidAPS, Loop and OpenAPS) to be extremely effective, and each system has its own advantages.[1, 11-13]
As for most people  my main motivation for using a DIY system was to improve glycaemic control by automating it. The results were immediate and dramatic.
Figure 1. HbA1c over the last 13 years
I’d made many attempts to stabilise my diabetes and reduce my HbA1c over the years, but unfortunately, pre-looping, when my blood glucose levels (BGLs) were in the normal range I often felt hypoglycaemic, or as though I was about to have a hypo. This ‘living on the edge of a hypo’ feeling led me to subconsciously develop strategies, such as under-bolusing for meals, in order to avoid hypoglycaemia. In hindsight I think continuous glucose monitoring (CGM) may have helped with this – I relied on manual blood glucose monitoring until two months before starting OpenAPS – but there were many features of OpenAPS and Nightscout that provided the real key.
I needed a system I could learn to trust over time that would minimise my glycaemic variability, help me to avoid hypoglycaemia, and put me firmly in the driver’s seat.
Adjusting to a new sense of normal
The OpenAPS algorithm, by adjusting insulin delivery through setting temporary basal rates, based on CGM readings every five minutes, automatically reduced my BGLs towards the target I’d set. I initially set my target to around 6.5mmol/L while I was getting used to the system and the lower levels, but within weeks I had reduced my target to 5.5mmol/L.
The ambulatory glucose profile (AGP) from Dexcom Clarity over this first year of looping shows this BG normalisation process and the reduction in glycaemic variability over time.
I learned to customise my settings during this time and to adjust them ‘on the fly’ to achieve the results I wanted. Trust in the system developed quickly. Real time data visualisation through the Nightscout website meant I had the confidence to adjust my diabetes behaviours (such as bolus and hypo treatment behaviours) based on feedback I was getting from the system. Over time, the positive feedback loop of OpenAPS and Nightscout visualisation enabled me to readjust to what ‘normal’ levels felt like as I developed a new blood glucose homeostasis.
Realtime data visualisation
Being able to see my detailed data on my mobile phone, at a glance, any time, and to be able to interact with it ‘on the fly’ was exactly what I needed. Mostly I just glance at the CGM glucose line to see what my glucose level is doing (green), the basal line (blue) to see how much insulin I’ve got on board, and the prediction lines (purple) to see what’s likely to happen next. But I can also see how many carbs I’ve got on board, when I last changed my insulin pump site, when I last changed my CGM sensor, how much battery charge is left in my pump and in the Edison/Explorer board rig that runs the system, and how much the glucose levels are deviating from what was expected. I can change the view to a two hour, three hour, six hour, twelve hour or 24 hour view, and I can run reports on predicted HbA1c, average sensor glucose, time in range, standard deviation and more, with just a couple of clicks.
I can’t overemphasise how valuable it was to be able to see this information in real time during my first year of looping, and how much it contrasted to the old way of doing things – downloading BG test results and pump data, using proprietary systems retrospectively, with a lot of effort.
In addition to what I can see at a glance about what is happening in the moment, I can run reports from my mobile phone or computer any time, to check my predicted HbA1c, time in range, average glucose and glucose variability. Most importantly, I can interact with the system quickly and easily to get it to behave differently.
Am I about to have a hypo?
Here is one example of a typical circumstance in which the OpenAPS/Nightscout combination has been critical for establishing trust and changing behaviour.
I loved the Dexcom display, and CGM was a major step forward from finger-prick BG monitoring alone, but as someone concerned about ‘living on the edge of a hypo,’ this type of visual feedback would likely have sent me reaching for glucose.
Compare that to what I was able visualise through Nightscout using OpenAPS just a few moments later.
I could see from the basal line (figure 7) that I had had no insulin delivered for the previous hour and a half because OpenAPS had suspended the insulin due to predicting a low BG. I can also see from the prediction lines that my BG is expected to level off at, or just below, 4mmol/L. If I click on the OpenAPS pill, I can see that the system is recommending I consume 2 grams of carbohydrate in the next 30 minutes to remain in my BG target range. Many people using OpenAPS have this ‘carbs required’ information sent to them automatically as a notification.
Not only is this reassuring, but it gives me options. If I am about to drive, or have a work deadline, for instance, I will choose to eat carbohydrate. If I’m at home relaxing I might just wait it out and see what happens because I have the reassurance from the system that my BGs are not likely to drop too low. Note that with hybrid closed loop systems only a small amount of carbohydrate is generally needed to correct lows because the system has already been suspending insulin.
One brilliant feature of OpenAPS is Autotune. It is a program that runs automatically every night and iteratively calculates insulin sensitivity factor (correction factor), basal rates and carb to insulin ratio, based on real data, and uses these values in the next day’s predictions. Most people find testing settings difficult, particularly basal testing, so this program is extremely helpful.
Autotune enabled me to discover that I was much more insulin sensitive than I realised. It turned out that one unit of insulin dropped my glucose level by almost 10mmol/L. This sensitivity, along with my pre-looping glycaemic variability (standard deviation pre-looping was 3.6mmol/L, post-looping it is around 1.8mmol/L) gave me insight into why I’d often felt on the verge of hypoglycaemia prior to looping. If my BG was 5.5mmol/L it really could drop to 2.5mmol/L very quickly. And the under-bolusing behaviour I’d developed for meals also made sense to me now that I realised how insulin sensitive I was. Overestimating the amount of carbohydrate in a meal, and bolusing for it, could lead to severe hypoglycaemia.
The fact that OpenAPS allowed separation of carbohydrate announcement and bolusing for meals was incredibly helpful for me. Prior to looping I had used the normal bolus, dual wave or square wave bolus functions of my pump, for example giving a three-unit bolus with one unit up front and the rest over a one-hour period. Given that three units would drop my blood glucose by around 30mmol/L, a miscalculation (overestimate) of carbs could easily lead to hypoglycaemia, and so I often subconsciously under-bolused.
I was now able to tell the system how many carbohydrates I was about to eat, but I only needed to bolus for part of it. I had a system using a dynamic carbohydrate absorption algorithm to sort out the rest of the insulin via temporary basal rates, based on how rapidly my blood glucose was rising or falling after a meal. This reduced my tendency to under-bolus, and increased my carb counting accuracy, as I no longer had the fear of bolus-induced hypoglycaemia.
An advanced feature of OpenAPS that I enabled after the first month of using the system is Unannounced Meals. This gives the algorithm the power to detect when I have underestimated carbohydrates, based on blood glucose deviations, and give more insulin accordingly.
Another excellent advanced feature I have enabled is Autosens. This detects and responds to sensitivity changes that are caused, for example, by hormones, pump site changes, sick days and stress. Like all features of OpenAPS there are safety caps which constrain how much OpenAPS can adjust settings, but it helps keep BGs in range by modifying basal rates, insulin sensitivity factor and temporary BG targets.
Ease of use
Good usability of diabetes devices is absolutely critical for quality of life with diabetes. I love that I can interact with the system ‘on the fly’ either through the Nightscout site or through the iPhone shortcuts that I’ve set up.
With only a swipe and a click or two I can tell the system how many carbs I’m about to eat, that I’ve changed my pump site or sensor, or set a temporary BG target. The ‘eating soon’ button gets the system to aim for a BG of 4.5mmol/L for one hour, which gets the insulin going before meals, helps control post meal spikes, and can be a safer option for many people than pre-bolusing.
A reassuring shortcut is the hypo recovery shortcut. It tells the system I’ve had 4 or 8 grams of carbohydrates and also tells it to raise my BG target for the next half hour to allow me to recover from the hypo.
Note, some people have set up ‘Hey Siri’ or ‘Ok Google’ voice commands as an alternative to interact with their systems and once again, each DIY system will have different options for this type of control.
Every morning when I wake up to a BG of 5.5mmol/L or close to it, I am reminded of how grateful I am to have access to looping technology. I am extremely grateful to the pioneers who created these systems and shared them openly via open source software. [3, 18-24] I am also extremely grateful to the people testing and enhancing these systems, and the people supporting this vibrant community. The years of dedication involved are staggering to contemplate. Finally, I am grateful to my partner, who has IT expertise, for setting OpenAPS up for me.
I share my story to convey just how powerful this type of technology can be. The three DIY systems in use in Australia are all highly effective. AndroidAPS, which uses the OpenAPS algorithm, can be used with brand new in-warranty pumps.[13, 24] US-based non-profit, Tidepool , has initiated a project to build and support an FDA-regulated version of the DIY system, Loop, and has a vision to partner with a range of commercially available insulin pump companies. Commercial off-the-shelf solutions are emerging. But there is no point in having the technology if people can’t afford it. I believe this technology holds the key to putting an end to T1D complications. Now is the time for us to ensure that funding and subsidies are in place so that all people with T1D can benefit.
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Street, T. Meal times when closed looping: some points to consider. Diabet-tech Diabetes and Technology. 2019 Jan 25. Available from: https://www.diabettech.com/artificial-pancreas/ meal-times-when-closed-looping-some-points-to-consider/