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Today, there was an article in online publication, The Limbic, which reported on a recent study conducted out of Westmead Hospital Young Adult Diabetes Clinic

The top line news from this research was that there is a high discontinuation rate of CGM in young people (aged 15 to 21 years). 

Let me start by saying I know that CGM is not for everyone. I don’t believe everyone should use it, have to use or even necessarily be encouraged to use it. As with everything, your diabetes technology wishes and dreams may vary (#YDTWADMV really isn’t a catchy hashtag, is it?), and there is a lot to consider, including accessibility and affordability. In Australia, affordability is not such an issue for the age group that was studied in this research. Our NDSS CGM initiative means that access to CGM and Flash is fully taxpayer funded (with no out-of-pocket expenses) for pretty much all kids, adolescents and young people up to the age of 21, provided a healthcare professional fills in the relevant form. 

The top-level findings from this research are that within the first week of starting to use CGM, almost 60% of study participants stopped. The decision to start CGM was made after a one-hour education program that was offered to 151 young people with diabetes, and 44 of them decided to start CGM. Of those 44, 18 young people continued using it. They happened to be the 18 young people who were more connected with their HCP team (i.e., had more frequent clinic appointments) and had a lower A1c, which the researchers suggested meant that they were struggling less with their diabetes management. The 26 young people who chose not to continue cited reasons for stopping such as discomfort, and inconvenience.

I had a lot of questions after I read about this research. (These questions arose after reading the Limbic’s short article and the research abstract. I will follow up and read the whole article when I can get access.)

If the young people who chose to not continue were already struggling with their diabetes management, is adding a noisy, somewhat obvious (as in – it’s stuck to the body 24/7), data-heavy device necessarily a good idea? Was this discussed with them?

Was any psychological support offered to those young people having a tough time with their diabetes? 

Was it explained to the young people how to customise alarms to work for them? If diabetes management was already struggling and resulting in out-of-range numbers, high glucose alarms could have been turned off to begin with. Was this explained?

What education and support had been offered in the immediate period after they commenced CGM therapy? Was there follow up? Was there assistance with doing their first sensor change (which can be daunting for some)? 

In that one-hour education they were offered before deciding to start on a CGM, did they hear from others with diabetes – others their own age (i.e., their peers) – to have conversations about the pros and cons of this therapy, and learn tips and tricks for overcoming some typical concerns and frustrations?

What was in that one-hour education program? Apparently, 151 young people did the program. And only 44 people chose to start CGM. Now, as I’ve already said, I don’t think CGM is for everyone, but 29% seems like a pretty low uptake to me, especially considering there is no cost to use CGM. Did anyone ask if the education program was fit for purpose, or addressed all the issues that this cohort may have? Why did so few young people want to start CGM after doing the program?

Were they using the share function? Did they have the opportunity to turn that off if they felt insecure about others being able to see their glucose data every minute of every day?

What frustrates me so much about this sort of research and the way it is reported is that there is a narrative that the devices are problematic, and that the people who have stopped using them have somehow failed. 

CGM may not be for everyone, but it’s not problematic or terrible technology. I remember how long it took me to learn how to live with CGM and understand the value of it. It took me time and a lot of trial and error. I didn’t want to wear CGM, not because it was lousy tech, or because I was ‘failing’, but because I hadn’t been shown how to get it to work with and for me. I had to work that out myself – with the guidance of others with diabetes who explained that I could change the parameters for the alarms, or turn them off completely.

And these young people are YOUNG PEOPLE – with so much more going on, already struggling with their diabetes management, and not connected with their diabetes healthcare team as much as the young people who continued using CGM. Do we have any information about why they don’t want to connect with healthcare professionals? Could that be part of the reason that they didn’t want to continue using CGM?

I don’t think we should attribute blame in diabetes, but it happens all the time. And when it does, blame is usually targeted at the person with diabetes, but rarely the healthcare professional working in diabetes. If a person with diabetes is not provided adequate, relevant education and support for using a new piece of tech, there should not be any surprise if they make the decision to not keep going with it. 

The positives here is that there is data to show that young people who are already struggling with their diabetes management may need other things before slapping a CGM on them. Cool tech can only do so much; it’s the warm hands of understanding HCPs that might be needed first here. Someone to sit with them and understand what those struggles and challenges are, and find a way to work through them. And if CGM is decided as a way forward, work out a gently, gently approach rather than going from zero to every single bell and whistle switched on. 

I am a huge supporter and believer in research and I am involved in a number of research projects as an associate investigator or advisor. I’m an even bigger supporter in involving people with diabetes as part of research teams to remind other researchers of the real-life implications that could be considered as part of the study, offering a far richer research results. Growing an evidence base about diabetes technologies is how we get to put forward a strong case for funding and reimbursement, increased education programs and more research. But sometimes there seems to be a lot of gaps that need filling before we get a decent idea of what is going on because the findings only tell one very small chapter in the diabetes story.

An old Roz Chast cartoon from the New Yorker 1986. (Click for details)

Chances are, Australians with diabetes will know who Stanley Clarke is, especially those who have many years of diabetes under their belt. Pretty much every person with diabetes who checks their glucose levels is benefiting from his legacy. 

If you don’t know who he is, or his story, and don’t get Circle, let me give you a little taste of this remarkable man and his contribution to diabetes as we know it today.

I was thrilled to read a beautiful profile of Stanley in this month’s edition of Circle magazine, the quarterly magazine from Diabetes Australia. (And by way of disclosure I am employed for Diabetes Australia, and I write an article for each edition of the mag.)

The latest edition of Circle Magazine

Stanley and his wife Audrey’s daughter Lisa was diagnosed with diabetes in 1972, aged 5 years. As was the norm at the time, she relied upon the only option for checking glucose levels at the time: using Benedict’s solution, drops of urine and colour charts to provide highly inaccurate and misleading results. That was as good as it got!

Stanley was an electronics engineer, and he knew that there had to be a better way. In fact, he’d seen the better way – machines that were available in hospitals that checked glucose in the blood. But these machines were large, and very expensive and not considered part of routine, daily, at home care for people with diabetes. Stanley set about to change that.   

He worked to develop a smaller, portable, battery-operated blood glucose machine and in two weeks had a prototype that he was ready to show his daughter’s paediatric endocrinologist. The endocrinologist, diabetes legend, Martin Silink, was impressed and ordered 30 and then an additional 200 machines to be given to children at the hospital. Apparently, within six months, every child with diabetes at the hospital had a home glucose meter, and monitoring blood glucose levels was part of their routine, changing their diabetes management forever. 

Clarke machines were ordered and sent to all corners of the globe as people with diabetes everywhere were keen to be able to access this new technology which improved outcomes and reduced diabetes burden. 

The machines were sold for what it cost Stanley to make them. He wasn’t interested in making a profit – only in that the machines were available and accessible to people with diabetes. 

I read the beautifully written tribute to Stanley in Circle, getting a bit teary at some of the beautiful stories of people who had benefited from this new technology. And my reading was also tinged with a sense of familiarity. I didn’t have diabetes when his home blood glucose meters became common, but I certainly did benefit from it. 

Even more so, I have benefitted from the ingenuity of people directly affected by diabetes. The #WeAreNotWaiting movement is built on the shoulders of people like Stanley and it continues to push boundaries and seek solutions for diabetes problems that we know matter. We know they are problems because we live with the consequences of them every minute of every day. We celebrate when the solutions are presented to us because we know what a difference they will make. 

I remember hearing Dana Lewis speak about her work that meant she could actually hear her CGM alarm at a volume that woke her up at night, and understanding why that was something so critical. 

I remember hearing about Nightscout for the first time, and how one of the benefits of remote monitoring meant that parents felt more confident allowing their kids to have sleepovers at friends’ houses, and understood just why that made all the difference to kids with diabetes.

I remember hearing someone tell me all about using DIYAPS, and I understood not only why it was a vast improvement on commercial diabetes therapies, but it made me determined to build a system for myself. And how glad I am that I did!

I find it unbelievable, and more than a little tragic, that at the same time that there is this incredible user-led innovation happening, there is also pushback. The opposition takes many forms, but it seems to come back to the same thing, and that is the discomfort of many working in healthcare and their reluctance to trust what people directly affected by diabetes are capable of. 

I wrote in this piece a few years ago about the predictable way that many HCPs recoil from new therapies. There are reasons thrown around for that: no money to fund it; no evidence to support it; safety concerns. 

But money doesn’t seem to be the driving factor propelling the innovators forward (a nod to Simon Lewinson who has been providing re-batteried CGM transmitters to people in Australia meaning that for them, that therapy is actually affordable). Safety is always the primary concern for those of us using these technologies, and to suggest otherwise is an insult. And the evidence is there, perhaps just not in expensive RCTs, which need to stop being considered as the be all, end all. 

Stanley Clarke changed the way that day-to-day diabetes was managed and so have others since then. And all I can think of is that we are so, so fortunate to have innovators like that whose only motivation it seems is to improve a life lived with diabetes. What a truly remarkable goal to have.

Last week, I posted this on Twitter:

I take no credit for these numbers or that straight CGM line, or the first thing in the morning number that pretty much always begins with a 5. Those numbers happen because my pancreas of choice is way smarter than me. Actually, in a perfect world, my pancreas of choice would not be outsourced, but what are you going to do when the one you’re born with decides to stop performing one of its critical functions?

Anyway. I should know by now that any time diabetes thinks I’m getting a little cocky or too comfortable, something will happen to remind me not to get used to those lovely numbers. 

And so, we have Tuesday this week. I woke up with a now very unfamiliar feeling. I reached over and looked at my CGM trace which immediately explained the woolly-mouth-extreme-thirst-desperate-to-pee-oh-my-god-I’m-about-to-throw-up thoughts running through my head. I found the culprit for that feeling very quickly – a pump with an infusion set that had somehow been ripped out overnight.

I didn’t get a screenshot of that number in the high 20s to share, because my head was down the loo. Ketone-induced vomiting is always special first thing in the morning, isn’t it?

I put in a new pump line, bolused and waited, all while resisting the urge to rage bolus the high away. Because that’s all there is to do, isn’t there? I hoped that just waiting and allowing Loop to do its thing would work, and that everything would settle neatly – especially my stomach which was still feeling revolting.

And as I lay there, I had another feeling that is somewhat unfamiliar these days: the feeling that I absolutely loathe diabetes. Beautifully mimicking the waves of nausea were the waves of my total hatred for this condition and how it was making me feel and the way it had completely derailed my morning’s plans.

I don’t feel like that most of the time anymore, because diabetes so rarely halts me from taking a moment out to deal with it. Hypos are so infrequent, and so easily managed; hypers that need real attention just don’t happen; sleep is so seldom interrupted because of diabetes anymore. Life just goes on and diabetes drones on in the background – annoyingly, but not too intrusively. 

But this morning was completely handed over to diabetes to wait it out for my glucose levels returned to range – thankfully with a gentle landing and no crash – and for my stomach to stop lurching. Ketones were flushed and the feeling of molasses-y textured blood running through my veins subsided.

By the afternoon I was feeling mostly human, with nothing more than a slight hangover from the morning. But the feeling of diabetes hatred had been reignited and was flashing through my mind constantly. 

A couple of days later, with a full day of decent numbers behind me, there is no physical aftermath of those few hours of diabetes trauma. But there is a whisper of the absolute contempt I feel towards diabetes. It’s always there, I guess. It just had reason to rear its ugly head.

My email autoreply is on and I have a glorious four weeks of holidays to look forward to. The last time I took any time off was back in January when my family travelled to NYC. There is no travelling this year. We have a new, beautifully landscaped back garden to camp out in over the next month instead. (By ‘camp out’ I mean sit comfortably on a sun lounger and drink Pimm’s.)

My plans are simple – do as little as possible. I’ve rallied against taking any time off this year because I’ve not seen the point. Why would I take time off to simply stay within the walls that I’ve stayed within for most of the year? 

That was a mistake. I should have taken some time off. I should have stepped away from the computer and from work – even if it were just for a couple of days. 

And so, I’m going to truly try to log off, to not stare at my computer, or open my laptop to just write a quick thing, revise something I’ve been working on, message a friend. I’m going to remove SoMe apps from my phone so that it’s not all that simple to quickly check for an update of what is going on in the Twitterverse or the world of Facebook and Instagram. 

I wanted to finish the year on a positive by highlighting some of the people who have made the DOC truly remarkable. So, this is a little Interweb Jumble of the folks in the DOC who have made the place safe, happy and continue to truly be about community. Check them out if you already don’t. Expanding your view of the DOC is important if you want to learn about more than just your part of the world. 

Cherise Shockley has a new podcast…

…and you should subscribe! It’s called ‘Don’t Keep it to Yourself’ and it’s my favourite new diabetes podcast which is completely not about diabetes! Instead, Cherise is pushing people outside their comfort zones and asking them to share things that others may not know about them. I’ve loved hearing the episodes she’s already shared and had an absolute ball chatting with her. 

The thing about Cherise is that she IS community. Even though her podcast is not about diabetes, it is still about people supporting and looking out for each other. Because that is who this woman is! Subscribe and listen from wherever you subscribe and listen to podcasts. 

DOC friends who have made me uncomfortable – but in a good way.

First up is wonderful Steffi from Pep Me Up whose Instagram stories challenged me to look at what was going on in the world in different ways. She has been absolutely relentless in her efforts to elevate the stories of people who are forgotten or left behind and highlight the bias we inherently have. You can find Steffi on Instagram here.  

And secondly, the also wonderful Tine who you can find on Twitter at @SayTine. We’ve known each other for a number of years now and we bonded over a mutual love of food. We have been allies in the language matters movement. Tine’s feminism has always been aligned with my own, but she has introduced me to different people and ideas that have made me consider some of my own ideas. 

Accessible Dtech information…

…from the always enthusiastic and excited Nerdabetic. I met Kamil for the first time a year or so ago and discovered that he is every bit as awesome and lovely in real life as he is online. I love the way he makes the latest in diabetes tech accessible and relevant to tech-imbeciles like me while also making it relevant to people whose interest in and understanding of technology generally makes my brain synapsis short circuit. It’s great to see Kamil appearing in the global DOC more with appearances on diaTribe. Kamil’s YouTube channel is here.

Brilliant photography…

…from a DOC stalwart. Mike Durbin was one of the first people I noticed in the DOC when I started participating in DSMA tweetchats over ten years ago. I’ve never met him, but am always interested in what he has to say, and his thoughtful takes on the diabetes world. Mike appears in every single presentation I give about diabetes peer support and the DOC because I always share this picture. It speaks community to me. 

On top of being such an integral and wonderful part of the DOC, Mike is a truly outstanding photographer and this year, I have found myself absolutely obsessed with what he has shared. You can see his work on Twitter here.

More Clever creatives

I adore the gorgeous artwork Nicole Buchanan shares on her Instagram. She absolutely nails diabetes moments with stunning designs and clever captions. I’ve shared so many of her posts because it’s like she has climbed into my head and then perfectly explained the mess in there with a beautiful illustration. You can follow her on Instagram here

Another favourite diabetes creative is Katie Lamb, another talented illustrator who manages to capture diabetes in her lush drawings. She’ll even draw you for a small fee! Find her here.

Aussie Jenna Cantamessa continues to share beautiful drawings on her Instagram here, and she has just opened an Etsy store so you can own one of her beautiful pictures. 

Special mention to dedoc for keeping PWD at conferences…

…because it would have been all too easy for us to have been forgotten with conferences going online. Bastian has done a stellar job getting DEDOC Voices up and running, offering scholarships to PWD to be part of ATTD (the only IRL large-scale conference this year), EASD and ISPAD. 

CWD keeping people connected

Children with Diabetes did a herculean job of not only running hugely successful Friends for Life conferences online, but also churned out relevant content all year, and seemed to run a bazillion meetups to keep people connected. In case you missed the fireside chat hosted by Kerri Sparling about #LanguageMatters, you can play catch up here. 

Spare a Rose…

…will be back next year, but I just wanted to mention the amazing efforts of the community this year as we smashed all previous records and delivered a magnificent USD$73,748 straight to Life for a Child. How remarkable is it when the DOC stops looking inwards??

The offline DOC friends who kept me going…

…are the reason that I have reached this stage of this year with some sense of balance. A huge thank you to the squad of four friends from the US & UK who have shared their lives with me throughout this clusterfuck of a year in an endless message thread that has kept me going. And the IRL friends too – with special mentions to Georgie and Jo. I am so grateful we live close to each other. 

And don’t forget…

please do consider making a donation to Insulin for Life’s Secret Santa Campaign.

Finally…

…that’s all from me for 2020. I’ll be back in the new year, but for now I am switching off and doing everything in my power to be less busy, less online and less engaged. Probably the only downside I see with Loop is how reliant it is on being close to my iPhone at all times, because honestly, I would like to let my phone battery run flat and not charge it up again until the end of January! But I am making a concerted effort to turn off and ignore notifications and be more present with the people I am so, so lucky to spend my life with. To those celebrating, have a wonderful festive season. Thanks to everyone who has stopped by. See you in 2021. 

The OPEN Diabetes Project is currently running a survey to look at the impact of do-it-yourself artificial pancreas systems (DIYAPS) on the health and wellbeing of users. There are stories all over the DOC about how people with diabetes (and parents of kids with diabetes) have taken the leap to Loop. These stories provide wonderful anecdotal tales of just why and how this tech has helped people.

The idea behind this new survey from the OPEN Diabetes team is to continue to build evidence about the effectiveness of this technology as well as take a look into the future to see just what this tech could have in store.

And important part of this new study is that it is not only OPEN (see what I did there?) to people who are using DIYAPS. That means anyone with diabetes can participate.

This project is important on a number of levels. It was conceived by people with diabetes and a significant number of the people involved in the project team (and I am one of them) are living with diabetes. We very much live the day-to-day life of diabetes and that certainly does make a difference when thinking about research. Also critically important is the fact that the ACBRD has recently joined the OPEN Project consortium. Having a team of researchers exclusively looking at the behavioural impact of diabetes technology will offer insights that have not necessarily been previously considered in such a robust way.

All the information you need can be found by clicking on the image below – including who to speak with if you are looking for more information. Please share the link to the survey with any of your diabetes networks, healthcare professionals who can help pass on details and anyone else who may be able to help spread the word.

A reminder – this is open to everyone with diabetes – not just people using DIYAPS. (I’m stating that again because it may not be all that clear as you are reading through the material once you click through to the survey.) You do not need to be Looping or ever tried the technology. Anyone with any type of diabetes, or parents/carers of kids with diabetes can be involved.

Click on link to take survey

DISCLSOURE

I am part of the Open Diabetes Project Team.

I am, of course, concerned about privacy. In a world where pretty much everything there is to know about me is contained in a device I hold in my hand, I am well aware that there is a lot of data (diabetes and non-diabetes) available. 

Obviously, I’m not all that concerned. I have my location settings switched on all the time. I check into places I visit – or rather, used to check into places because these days those check ins would be ‘bedroom’, ‘living room’, ‘kitchen’, ‘home office’, ‘garden; and not much else. I use social media extensively, at times offering a pretty intimate picture of my day-to-day activities. I happily installed the COVIDSafe App without a second though to what that would mean in terms of being able to trace where I had visited. I have done so much online shopping in the last few months that Amazon will have a very accurate and specific profile of my buying habits and what the inside of my house looks like. I happily sign up to new apps and websites, and pretty much every non-Murdoch news outlet has my details so I can access the latest in news. I do ridiculous, mindless quizzes on Facebook, signing up to have the privilege of finding out what my birthstone says about me. 

But the thing about it is that I am happy to choose to hand over that info (and yes, I get that I have little idea which third party organisation is then given access to my data, but really, if they want to know ‘what 1970s song’ I am, they are welcome to that information). I also keep an eye on just who I have given access to, and frequently unauthorise apps and subscriptions.

Because I can do that. 

I have the same attitude when it comes to my diabetes data. My personal situation is that I don’t share my data with anyone. I don’t have anyone real time monitoring my CGM. I don’t ever give access to my data to my HCP unless there is a specific issue I need help with and then sharing data is limited and on my terms. To be honest, I haven’t had anything downloaded for a HCP in the whole three years I’ve been Looping. And yet, the medical appointments I’ve had in that time have been the most rewarding, the most satisfying and the most relevant consultations I’ve ever had. I walk out with clear ideas about what I need to do to keep going with my diabetes, and feel so satisfied that the things that I wanted to discuss have been addressed. 

I have recently done a couple of meetings where discussion has been around what is important when it comes to the development of an app or program. One meeting was referring specifically to an app that would be collecting data about day-to-day feelings of wellbeing, the other was about collecting data from a connected device. The meetings included a discussion about who would be able to see the data, and how they would be shared. 

For me, the undeniable most important thing is being able to determine who sees my data, when they see it, how they see it and why they see it. I remember a few years ago, when Cellnovo was launching in Australia, attending a workshop where the inventor of the pump was showing off the fancy data collection app and how it was set up. I was a little astonished when we were told that the default setting for data sharing was up to the HCP. It was automatically turned on, and could be turned off, but that had to be done by the HCP. There were a couple of diabetes advocates in the room that night, and none of us seemed all that impressed about that. 

When asked in these meetings what was important about the set up of these new data collection apps, the first thing I said was the PWD being in absolute control of who they share the data with. In my mind, that is a non-negotiable. 

Last week, I was surprised to hear that some of the meeting participants say that it is a condition of access to diabetes devices that downloads by HCPs are compulsory. I asked for that to be clarified, thinking perhaps I’d misheard, but no, I had heard correctly the first time.  

I have thought about this a lot over the last week. I thought about my ‘old days’ when I used to ‘forget’ to take in BG record books to avoid having to go over them with my HCP, or not have a meter with me in case I was asked for a download. This was, of course, before I realised that I didn’t need to agree to sharing the information on my device. It’s much harder in 2020 when we have our devices literally strapped to our bodies and driven by our phones to make the ‘I left it at home’ claim.

And I’ve also wondered how it is possible that in 2020, the agenda for a diabetes consultation is not being set by the PWD. It seems that data remains king to a lot of HCPs who have made the determination that access to data is not negotiable. I have been on advisory boards here in Australia and know that there is no way that this sort of thing would fly as national policy. Some centres may insist that data be downloaded, but PWD could still push back if they were comfortable doing so. (For the record, there should be no need to do that. Permission should be asked each and every time access to data is requested, and consent should be granted for it to happen. This also refers to the idea of having to be weighed at all appointments as matter of course.)

Obviously, in the true spirit of YDMV, there is no one way to do this and if people are happy to share their data, and for their HCP to have access to it, then brilliant! But that actually isn’t the point of today’s post. It’s not about deciding that you are okay with it. It is about not having a say. It’s about the idea that HCPs consider themselves the gatekeepers of MY data, or that they have a right to it. To me, I don’t think that is okay at all.

Postscript

This post is referring to adults, but if you want to read about my unpopular posts about kids consenting to sharing their data as they get older, try here or here

This was one of the first things I saw when I opened my email this morning: the lead article in the latest edition of The Limbic – Subsidised CGM has not improved outcomes in Australian children with T1D’.

I’m relying on the The Limbic’s commentary as the study is not open access (I have requested a copy from one of the authors), and according to the report, the focus of the study was improvements in A1C and reductions in severe hypoglycaemia.

It will come as no surprise to anyone who has read anything I have written about technology or heard me give one of my many, many talks on user experience that I found this report problematic. Screaming that a well-funded and hard-fought for program, providing much needed diabetes technology to children (and adults) is ‘underwhelming’ does not sit well with me at all, especially when the main way the program’s success has been evaluated is a highly flawed clinical measurement.

When I look at the benefits I list when it comes to using any sort of diabetes tech – or other diabetes management, whether that be a drug, an education program or even peer support – changes to my A1C is far down on the list. I understand that for some people, this is certainly a measure of success, but it is not even close to one of the first things I would consider.

My history of using diabetes technology is long and elaborate. Perhaps one of the best examples of just why A1C gives a very incomplete picture of how I measure success is my initial foray into using an insulin pump. It was almost 20 years ago, and I was only three years into living with diabetes. That story is one that could be used as an example of ‘How NOT to do pump therapy’.

I was educated (and I use that term very loosely) by a rep from the pump company. She talked at me for three hours, pressed buttons, loaded some numbers into the device and then stepped out so a dietitian could teach me all I needed to know about carb counting. She was in the room for forty-five minutes. (For context, this was my introduction to carb counting, because my first dietitian encounters were only about low GI, with a general direction of ‘Eat as much as you want of it as long as it is low GI’).

I was released from the hospital with this new device strapped to me, step by step instructions for how to do a cannula change in three days’ time, and absolutely no idea what I was doing.

But here’s what happened: I could sleep in again. I didn’t need to eat unless I really wanted to; eating by the clock became a thing of the past! I could eat brunch out with friends again, without having already had breakfast at 7am. I ate more of the foods I wanted to and stopped stressing out each time I sat down for a meal. I felt more relaxed. My life felt just a little bit more mine, rather than dictated to my a most unwelcome health condition. And sleep! Did I mention sleeping in?

My A1C was the highest it ever was. By all clinical measures, I was absolutely messing this up. But by my measures – which were based on how I was feeling, how emotionally robust I was, how burnt out I felt, how late I could sleep in on the weekend (I see a theme) – I was ticking every single box.

My endocrinologist told me that I was wasting my money (and his time) being on a pump, and nothing I could do to explain that for the first time in three years I felt like myself. Sure, I knew that I had work to do on my A1C, but I finally felt emotionally resilient enough to do that. He just shook his head and sent me on my way…and was promptly sacked.

(Luckily for me, the story ends well because about eight months later, I came across a woman called Cheryl Steele. Suddenly I could use a pump properly. My A1C came down; my quality of life remained elevated.)

My story is not uncommon. I have spoken with dozens and dozens of people who have benefited from the CGM initiate and overwhelmingly, the stories I hear are people who are grateful for the tech for what it has offered them. Interestingly, we rarely talk about those measures that HCPs and researchers seem to think are the best way to gauge the success of any sort of intervention. They talk about those same things I mentioned earlier. When the CGM initiative was first launched, parents of kids with diabetes told me they had slept for more than three hours at a time at night for the first time in years. They told me how they stopped fearing hypoglycaemia so much, because they were being alerted if their kids glucose levels were trending downwards. They told me that their kids were having sleepovers and heading off to school camp for the first time.

A1C? Maybe we would mention that somewhere down the track, but that wasn’t what got us the most excited. That wasn’t the bit we spoke about when we uttered the words ‘life changing’.

Obviously, research is important. Data is essential. It was data that provided the strong case for Diabetes Australia, JDRF, ADS, ADEA and APEG to advocate for CGM funding as part of the NDSS. But the case that was put forward also included research that looked at QoL, because the organisations know that this matters.

Research that focuses on A1C is always going to be problematic in a health condition that will never only be about that number. It’s problematic for a number of reasons – not just because it gets my shackles up before I’ve had my morning coffee. We know the pot of money that goes to supporting and funding initiatives, such as the one in this study, is very limited. Funding authorities don’t have the nuanced understanding of all the different interventions that need funding, so if a study like this comes across their desk, it could raise red flags.

I am not for a moment saying that this sort of research should not be conducted or that negative results should be buried. What I am saying is that any results need to be flagged as only ever presenting part of the issue as a whole.

I am looking forward to reading the whole study – and truly, I’m hoping that this blustering post is all a waste of time because somewhere in there, I will get to see that the researchers spent a fair bit of effort evaluation QoL as well. I’m hoping that the trumpeting heading from The Limbic is nothing more than their typical sensationalism.

My fear, however, is that there won’t be more, and that once again, PWD will have been reduced to nothing more than a flawed metric that shows only one corner of the picture of our lives with diabetes.

I’ll finish with one final thought. I advocate for PWD’s involvement in every single step of diabetes research (not just as participants of studies), and one of the reasons I do that is because when we are at the table when studies are being first mapped out, we are given the chance to remind those conducting the work that the answers they are seeking are coming from people. Real people who will always be far more than their diabetes. And somehow, that needs to be reflected in the study they are doing. It can be done. Unfortunately, this seems to have missed the mark.

At the best of times, I’ll celebrate any kind of anniversary, but it seemed even more important to acknowledge my ‘loopiversary’ this year in what can really only be termed as the most fucked of times. Last week, I clicked over three years of looping, a decision that remains the smartest and most sensible I have ever made when it comes to my own diabetes management.

In reflecting just how Loop has affected my diabetes over the last three years, I’ve learnt a few things and here are some of them:

  • The words I wrote in this post not long after I’d started looping are still true today: ‘…this technology has revolutionised every aspect of my diabetes, from the way I sleep, eat and live. I finish [the year] far less burdened by diabetes than I was at the beginning of the year.’
  • The #WeAreNotWaiting community is but one part of the DOC, but it has provided the way forward for a lot of PWD to be able to manage their diabetes in ways we never thought possible.
  • Even before I began to Loop, the kindness and generosity of people in that community was clear. I took this photo of Dana and Melissa, two women I am now lucky to count amongst my dearest friends, at an event at ADA, just after they had given me a morale boosting pep talk, promising that not only could I build loop for myself, but they would be there to answer any questions I may have. I bet they’re sorry they made that offer!

  • Loop’s benefits are far, far beyond just diabetes. Sure, my diabetes is easier to manage, and any clinical measurement will show how much ‘better’ I am doing , but the fact that diabetes intrudes so much less in my life is, for me, the real advantage of using it.
  • That, and sleep!
  • I get ridiculously excited when other people make the leap to looping! I have watched friends’ loops turn green for the very first time and have wanted to cry with joy because only now will they understand what I’ve been ranting about. And experience the same benefits I keep bleating on about.

  • It’s not for everyone. (But then, no one said it was.)
  • You get out what you put in. The more effort and time and analysis you put into any aspect of diabetes will yield results. But with Loop, even minimal effort (I call the way I do loop ‘Loop lite’) means far better diabetes management than I could ever achieve without it.
  • It took an out of the box solution to do, and excel at, what every piece of commercial diabetes tech promises to do on the box – and almost always falls short.
  • It’s amazing how quickly I adapted to walking around all the time with another but of diabetes tech. My trusty pink RL has just been added to the phone/pump/keys/ wallet (and, of course, mask) checklist that runs through my head before I leave the house.
  • Travelling with an external pancreas (even one with extra bits) is no big deal.

  • I was by no means an early adopter of DIY tech, but I was way ahead pretty much any HCPs (except, of course, those living with diabetes). The first talk I gave about Loop still scars me. But it is pleasing to see that HCPs are becoming much more aware and accepting of the tech, and willing to support PWD who make the choice to use it.
  • The lack of understanding about just what this tech does is astonishing. I surprised to still see people claiming that it is dangerous because users are ‘hacking’ devices. Language matters and you bet that this sort of terminology makes us sound like cowboys rather than having been thoughtful and considered before going down the DIY path.
  • The lengths detractors (usually HCPs and industry) will go to when trying to discredit DIYAPS shouldn’t, but does, surprise me. The repeated claims that it is not safe and that people using the tech (for themselves or their kids) are being reckless still get my shackles up.
  • Perhaps worst of all are those that claim to be on the side of those using tech, but under the guise of playing ‘devil’s advocate’ do more damage than those who outwardly refuse to support the use of the technology.
  • The irony of being considered deliberately non-compliant when my diabetes is the most compliant it ever has been hurts my pea-sized brain. regularly.
  • There is data out there showing the benefits and safety of looping. Hours and hours and hours of it.
  • My privilege is on show each and every single time I look at the Loop app on my phone. I am aware every day that the benefits of this sort of technology are not available to most people and that is simply not good enough.
  • Despite all the positives, diabetes is still there. And that means that diabetes burnout is still real. But now, I feel guilty when feeling burnt out because honestly, what do I have to complain about?

But perhaps the most startling thing I learnt on this: The most variable – and dangerous – aspect of my diabetes management has always been … me! Loop takes away a lot of what I need to do – and a lot of the mistakes I could, and frequently did, make. Loop for me is safer and so, so much smarter and better at diabetes than I could ever hope to be. I suspect that as better commercial hybrid closed loop systems come onto the market, those who have been wary to try a DIY solution will understand why some people chose to not wait.

And finally, perfect numbers are never going to happen with diabetes. But that’s not the goal, really is it? For me, it’s about diabetes demanding and being given as little physical and emotional time and space in my life. With Loop, sure numbers are better – but not perfect – and I do a lot less to make them that way. It took a system that did more for me, keeps me in range for most of my day, and has reduced the daily impact of diabetes in my life to truly understand that numbers don’t matter.

Spend enough time trawling through social media posts with a #DOC somewhere in the hashtag, and it is inevitable that you will see photos of people’s CGM graphs. Often, it’s PWD getting excited at their flat line graphs because they have managed to stay within range for a certain period of time. Or perhaps it’s to show shock and utter disbelief at loop systems doing all the work. It can be because we won’t to show how we have managed to nail the timing and amount of a bolus, and that usually-difficult to manage food nemesis (hello, rice!), completely avoiding a spike. Or, it could be just because we feel like sharing.

I don’t share my graphs a heap these days, but have in the past. It’s a personal decision as to whether we want to share their data online, and if you do, knock yourself out. Your data, your rules! I understand why some feel that it can be considered not especially helpful for others, setting us up to feel we are failing if we compare. But the conversation sharing can generate is really useful for a lot of people.

Every now and then, a non-PWD will share their libre or CGM trace to show that even those with a perfectly working pancreases are subject to glucose fluctuations. This is done with the intention of support and encouragement and to show that flat lines really are unrealistic. While I’m sure that those sharing glucose graphs of people without diabetes is never done with any malice – in fact, completely the opposite – I believe it is nonetheless problematic, and misses the point.

I get it. It’s a noble goal to try to make PWD feel less negative when we are unable to manage a perfectly flat line at 4.0mmol/l for hours on end. And to also understand that’s not how the body actually works, even when everything is doing what it should be doing.

But it is totally redundant. And downright annoying. And also, completely inconsiderate.

I live with diabetes and am fixated on trying to limit the variation of my glucose levels because I have to. PWD are told that keeping those numbers between 4mmol/l and 8 mmol/l is the goal. And we’re told that when we go outside of those numbers – especially when we go beyond the upper limit, all manner of nasty things will happen to us. That’s what was told to me the day I was diagnosed with diabetes, and repeatedly what I have seen since.

Showing me your graph that just happens without any effort on your part is not reassuring. It’s pointless. And somewhat heartless. When your level goes up to 12 because you ate a family block of chocolate, it comes back in-range fairly quickly. And not because you had to do any fancy-pants calculations, or micro (or rage) boluses.

When I eat a block of chocolate, whatever happens next is pretty much 100% due to my efforts. I have done some fancy pants calculations. I have had to bolus – maybe once, most likely a number of times – to get my glucose level back in range. And then I sit there and hope that I haven’t over bolused…

Oh – and when you show me that your glucose levels dipped into the low range or sat there for a while, it doesn’t reassure me or make me feel ‘normal’. Because the difference is that when that happens to me, I am doing all I can to make sure that I am okay, that I don’t pass out, that I don’t overtreat (again!), and that I am safe. And then I get to recover from a hypo hangover – something you are fortunate to never experience.

To be honest, I actually find it completely ironic when it is HCPs sharing their data to make me feel better, and a little thoughtless because the reason that I am in constant pursuit of these straight, tightly-in range lines is because it is HCPs that told me in the first place that is where I must stay to ‘prevent’ all.the.nasty.things.

And finally, when this happens, it centres people without diabetes in a conversation that should very much have the spotlight firmly shone on us. Your glucose level data, and the patterns they make are not like ours. They do not represent the blood, sweat and tears, the emotional turmoil, the frustration, the fear that that is somehow reflected in our data.

Perhaps rather than sharing non-PWD data, instead acknowledge just how difficult it is to do diabetes, and commend people with diabetes for showing up, day after day, to do the best we can – regardless the shape of our CGM graph.

A real-life PWD CGM graph. Mine, from about 10 minutes ago.

Sometimes it feels as though discussions in the diabetes are seasonal. Like clockwork, we see the same conversations happen at the same times. Without missing a beat, almost as soon as a scientific conference is over, someone will comment about how difficult it is for PWD to get to conferences (true, however this year, #dedoc° voices could have assisted a number of the people who were stating that), and then there are discussions about disclosure by PWD who are fortunate to attend, even though pretty much every advocate I know who attends these sorts of things does a stellar job of disclosing. 

And of course, the nature of the first big meeting of the year, ATTD, means that there inevitably will be noise about the gap in technology access. And you bet this is a discussion that we need to be having on regular rotation. 

After attending my first ATTD, I wrote a piece about the complete and utter dichotomy of being at a conference that was only talking about the latest and greatest in technology while, at the same time, whilst the community was in the midst of its usual Spare a Rose month of fundraising. I struggled to balance the idea that we were talking about automated insulin delivery at the same time as urging donations so people could just get insulin!

Today, I’m revisiting the piece I wrote after last year’s ATTD, where my worlds of diabetes technology and language matters merged, and combined this with the over-representation of those at the super-dooper-tech-y end of the diabetes technology spectrum. (‘Super-dooper-tech-y’ is, obviously, a very technical term.)

I don’t for a moment think that meetings with a strong tech focus should end, or that those who are innovators in technologies should take a seat and let others speak. I don’t believe that at all. I will be forever grateful to the pioneers who continue to push the envelope and make things better for people with diabetes. But I do think that we need to ensure that there is equal attention to those who – by choice or because of their circumstances – are not walking around with an algorithm driving their diabetes.

If we truly believe that all diabetes stories matter, then we need to hear from people doing diabetes in every way possible. Perhaps if we make more of an effort to find and hear those stories, we will stop minimising our experiences, and starr seeing that whatever we are managing to do is truly enough…

DISCLOSURE 1 (for ATTD 2020) 

I was an invited speaker at #ATTD2020, and my registration was covered by the conference organising committee. My airfare and part of my accommodation to attend ATTD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place on Friday, Saturday and Sunday. Other accommodation was covered by DedocLabs (I am an advisor for the #dedoc° voices program) and Novo Nordisk (I am a member of DEEP). I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference. 


We all do a good job at undermining ourselves at times. We use a four letter word that diminishes what we are doing, and limits the value of our experience and expertise. That four letter word is ‘just’.

In diabetes, we hear it all the time: ‘Oh, I just have type 2 diabetes’ as though it is insignificant and doesn’t have any challenges. ‘I’ve lived with diabetes for just a couple of years’ because we think there is only currency in decades of living with the condition, when really any length of time with diabetes is meaningful.

And we are all about minimising our experience when it comes to the treatment of our diabetes. ‘just use diet and exercise to manage my type 2 diabetes’ or ‘I’m just on tablets’ or ‘I’m just on injections twice a day’ or ‘I’m just on MDI’. The list goes on and on. And on.

I realised just how ridiculous we have become with this when I heard myself, during a conversation with a fellow Looper, ‘Oh, I just use Loop’. (More on that later…)

At the Ascensia Social Media Summit at ATTD we spoke about this, specifically how there is almost a stigma within the diabetes for those seen to not be using the shiniest and brightest and newest of technologies. It seems that some people almost feel embarrassed if they are not constantly updating their technology toolkit with the most recently launched product.

The idea that anything that we are using today is ‘yesterday’s technology’ is wrong. Blood glucose monitoring can’t be ‘yesterday’s tech’ if it is what most people are using to track their glucose. And syringes and pens can’t be considered the ‘old way to deliver insulin’ when that is how the vast, vast majority of inulin-requiring people with diabetes get insulin into their bodies. Plus, every single one of us using a pump must be able to deliver insulin this way because machines break.

Somewhere in discussions about our treatment technologies, we seem to have forgotten that, actually, not everyone wants to be using the latest kit. And that is okay. There is a spectrum of diabetes technology, and as long as we are on it somewhere and managing our diabetes the way that works best for us, then elephant stamps all around!

There is clearly an over-representation of people at one end of that spectrum dominating on and off line conversations. Spend a couple of hours in a diabetes Facebook group and it would be a reasonable assumption that most people are wearing pumps and CGM. But that’s not true.

And it could appear that DIYAPS is the way to go for most people with T1D, when the fact is that numbers are relatively low. It’s hard to estimate exactly, but there may be somewhere between 2,000 and 3,000 worldwide how have ‘built their own pancreas’. That is just a drop in the type 1 diabetes ocean.

It’s fantastic for those of us interested in this technology to be able to (virtually) congregate and talk amongst ourselves. I learn so much from my peers in these groups – just as I have with all aspects of life with diabetes. The lived experience continues to trump any other way of learning about diabetes.

Of course, that doesn’t mean that we shouldn’t be talking about technology used by limited numbers. Of course we should. We want others to know about it so they can make an informed choice about whether it may be right for them.  We want our HCPs to know about it and to support those of us using all sorts of technologies and treatments.

Where it becomes problematic is when there is the misconception that this is the norm. Or when those not using the newest technology feel that they are wilfully doing diabetes the ‘old way’. It’s unfair to think for a moment that those who are not using the tech ‘don’t care’ enough about themselves – especially when decisions are made based on a very good understanding of what is available and what they have decided works best for them.

So, back to my ‘Oh, I just use Loop’ comment. It was directed to someone far more technologically advanced than me; someone who runs all sorts of other programs alongside their DIYAPS. They generate lots of reports and make lots of changes and seem to have far more bells and whistles than I even knew were available.

I nodded as they told me all they were doing and then, when they asked me how I manage my diabetes, I answered that I just use Loop. I heard myself saying it and stopped and corrected myself. ‘I meanI use Loop. It works for me. Perfectly.’

We don’t need to make excuses for doing diabetes our own way. If we truly have choice (which I know is not always the case), and we have made the choice based on what we believe to be the best possible treatment and technology for us at that moment, then surely that’s a great thing. We shouldn’t ever be made to feel less committed to our own health and wellbeing. That’s not how it works.

DISLCOSURE 2 (for ATTD 2019)

I was invited by Ascensia to co-chair the Diabetes Social Media Summit at ATTD (#ATTDDSMS). I did not receive any payment or in-kind support from them for accepting their invitation. I have co-written a piece for the blog, however this was not edited (apart from inevitable jet-lag-induced typos) and all words are those of mine and the piece’s co-author. You can read that piece here.  

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