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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.

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.

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.

This morning I woke up, got myself organised for the day, headed to our local for our morning takeaway coffee. And then I ripped out my pump line on a door handle.

Which, all in all, seems like a pretty damn appropriate way to celebrate my twenty-second diaversary.

One day I might get good at diabetes. But I guess today is not that day.

Other diaversary posts

Twenty-one

Twenty

Nineteen

Eighteen

Seventeen

These days, I usually don’t show my glucose data online. When I first started Looping (about two and a half years ago), I regularly posted the flat CGM lines that amazed and surprised me. I also shared the not-flat lines that showed how hard my Loop app was working as temp basal rates changed almost every five minutes. The technology worked hard so I didn’t need to, and the results were astonishing to me. I shared them with disbelief. (And gratitude.)

I stopped doing that for a number of reasons. It did get boring, and I definitely recognise my privilege when I say that. I also acknowledge my privilege at being able to access the devices required for the technology to work. And there was the consideration that sharing these sorts of stats and data online inevitably lead to comparisons and competition. That was never my intention, but I certainly didn’t want to add to someone having a crappy diabetes day while I blabbed about how easy my day had been.

But today, I’m sharing this:

This was my previous 30-day time in range data from the Dexcom Clarity app on the day I arrived back home in Australia after returning from New York. (My range is set to 3.9mmol/l – 8.1mmol/l.) I’m not sharing it to show off or to boast. I don’t want congratulations or high fives. In fact, if anyone was to see this and pat me on the back, I would respond with the words: ‘I had very little do with it’.

I can’t really take credit for these numbers and would feel a fraud if anyone thought I worked hard to make this happen. Using an automated insulin delivery system full time means that I do so much less diabetes than ever before while yielding time-in-range data that I could once only dream of.

I want to share it, not to focus on the numbers (because it’s NEVER about the numbers!), but to explain what happens when diabetes tools get better and better, and what that means in reality to me.

Those thirty days included the following: End of year break up parties for work and other projects (four of those); ‘We-must-catch-up-before-the-end-of-the-year’ drinks with friends (dozens of those!); actual Xmas family celebrations (three of those over a day and a half– and I’m from an Italian family, so just think of the quantities of food consumed there). Oh, and then there were the three weeks away in NY with my family. Our holiday consisted of long-haul flights from Australia, frightful jet lag (there and back), a lot of food and drink indulgences, out-of-whack schedules, late nights, gallons of coffee, no routine, and more doughnuts than I should admit to consuming.

Add to that some diabetes bloopers of epic proportion that had the potential to completely and utterly railroad any best laid plans: insulin going bad, blocked infusion sets, sensors not lasting the distance, a Dex transmitter disaster.

And yet, despite all of that, my diabetes remained firmly in the background, chugging away, bothering me very little, with the end result being time in range of over eighty per cent.

This graph is only part of the story of why I so appreciate the technology that allowed me to have a carefree and relaxed month. Diabetes intruded so little into our holiday. I bolused from my iPhone or Apple watch, so diabetes devices were rarely even seen. Alarms were few and far between and easily silenced. I was rugged up in the NY cold, so no one even commented on the Dex on my upper arm. The few times I went low, a slug of juice or a few fruit pastilles were all it took, rather than needing to sit out for minutes or hours. Diabetes didn’t make me feel tired or overwhelmed, and my family didn’t need to adapt and adjust to accommodate it.

That time-in-range graph may be the physical evidence that can point to just how my diabetes behaved, but there is a lot more to it, namely, the lack of diabetes I needed to do!

As I spoke about this with Aaron, he reminded me of my well-worn comments about not waiting around for a diabetes cure. ‘You’ve always said that although you would love a cure, it’s the idea that diabetes is easier to manage that excites you. Ten years ago, when you spoke about what that looked like, you used to talk about diabetes intruding less and being less of a burden to your day. That is what you have now. And it is incredible.’

Busan is a very different city today than it was last week. There won’t be warmly dressed people hurrying into BEXCO with IDF2019 lanyards around their necks, eager to learn about diabetes. The word ‘diabetes’ won’t be uttered in almost every language of the globe. There won’t be Melbourne diabetes people loudly lamenting that Starbucks seems to be the coffee of choice in the city.

And you won’t see groups of people from all around the world standing together talking about what it’s like to live with diabetes. Most of us have gone home to our respective corners of the world, back to our families, back to our jobs, back to our real lives. But we will always have Busan and the incredible week of the IDF Congress.

By the time I arrived in Busan on Monday, the IDF was already a different beast. There was a new President and Board in place and some of the concerns that we’d had about the handover had melted away to nothing. This paved the way for what we really there for: a week of learning, networking, hearing different perspectives and truly uniting for diabetes.

We did that.

Was it a perfect conference? Of course not; they never are. There were hiccoughs and AV fun. There were controversies that played out online very differently to the way they actually happened in real life. There were sessions – critically important and brilliant sessions from all streams– with disappointing turnouts.

But these are all minor concerns that are the reality of every conference I have ever attended. There will be a time for post-mortems and evaluations and planning for improvements to future conferences. That time, however, is not now. Now is the time to celebrate.

IDF 2019 was a brilliant showcase of diabetes from around the globe. As expected, I only attended sessions from the Living with Diabetes stream and every single story was beautifully presented, and enhanced by the professional expertise of the HCPs who shared the stage. Amongst the incredible tales were moments of discomfort. It’s challenging to hear of the struggles many of my sisters and brothers with diabetes face in their day to day lives. I was forced to confront my privilege in a way that demands more than just acknowledging it there.

Also, difficult to accept is realising that sometimes the chasm between what people living with diabetes want and need and what HCPs and researchers think we want is gulf-like. For every HCP who ‘gets us’ and understands the value of lived experience in the healthcare space dialogue, there are many others who just don’t accept it, and, despairingly, don’t want to listen.

But more on that another day. Because for now, I’m focused on the people who did such a stellar job. So here are just some of them!

Two hours after touching down in Busan, and we kicked off the sixth Ascensia Social Media Summit with these gems.

Bright and early on day 1 of IDF2019, and the auditorium was packed to hear about diabetes and tech.

Always, ALWAYS, pleased to share the stage with Jane. Here we are just before the panel session.

Georgie excited to TALK ABOUT HYPOS! (We couldn’t understand why there was an explanation mark at the end of that sentence.)

Manny Hernandez gave the LWD Stream Award Lecture and there is no one more qualified to talk about the importance of diabetes community. How honoured I was to introduce him!

Celebrating Manny! (Photo courtesy of Boudewijn Bertsch)

From Melbourne to Busan. Neighbours at IDF2019. Jo was speaking about living with a rare type of diabetes and Andy was there for support (and photos from rooftops).

This woman! Sana, deputy lead of the LWD Stream and a bright, fierce force.

Anita eloquently explaining the challenges of living with diabetes-related complications in Indonesia.

Apoorva highlighting #LanguageMatters in her talk.

Some of the most dynamic young people I have ever met at the Young Leaders in Diabetes Training Summit.

Cherise can always be relied upon to ask thoughtful questions.

I’ve lost count of the cities we’ve done our #DiabetesOnTour this year, but these blokes have made all my travel so much better! Thanks Bastian and Grumps.

My favourite people at IDF2019? The two baristas running this uber-hipster coffee van.

We were all surprised to see the room packed full at 8.30am on the last day of the Congress. Sex sells. Or people just want to talk about it…

One of the best pieces of advice I was ever give was this: surround yourself with smart women. This is the LWD stream from IDF2019. I truly was surrounded by the smartest of women! Thank you Sana, Pei Yan and Elizabeth. 

The final session in the LWD and my highlight of the whole congress was my neighbour, Sol, talking about living with MODY 3. We could not have scripted a closing remark better than his: ‘Being at this conference has made me feel part of something and with people that understand.’ Welcome to the world of diabetes peer support, Sol. You are so, so very welcome here.

 

DISCLOSURE

I was the Chair of the Living with Diabetes Stream at the IDF Congress in Busan. My flights to Busan were covered by Ascensia Global (in order for me to get to Busan in time to co-facilitate their Social Media Summit). Flights home and accommodation were covered by the IDF.

 

Two years ago, I walked off the stage at the inaugural ADATS event feeling very shaken. I’m an experienced speaker, and regularly have presented topics that make the audience feel a little uncomfortable. I challenge the status quo and ask people to not accept the idea that something must be right just because ‘that’s how it’s always been done’. Pushing the envelope is something that I am more than happy to do.

But after that very brief talk I gave back in 2017, a mere three months after I started Looping, I swore I would never speak in front of a healthcare professional audience again.

That lasted all of about two months.

In hindsight, I was more than a little naïve at how my enthusiasm about user-led technologies would be received. I can still remember the look of outright horror on the face of one endo when I cheerfully confirmed:‘Yes! Any PWD can access the open source information about how to build their very own system. And isn’t that brilliant?!

Fast forward to last Friday, and what a different two years makes! The level of discomfort was far less, partly because more than just a couple of people in the room knew about DIYAPS. In the intervening years, there have been more talks, interviews and articles about this tech, and I suspect that a number of HCPs now have actually met real-life-walking-talking loopers. Plus, Diabetes Australia launched a position statement over a year ago, which I know has helped shape discussions between HCPs and PWDs.

I’ve gotten smarter too. I have rejigged the words I use, because apparently, #LanguageMatters (who knew?!), and the word ‘hack’ scares the shit out of people, so I don’t use it anymore. (Plus, it’s not really accurate.) And, to protect myself, I’ve added a disclaimer at the beginning of my talk – a slide to reinforce the sentiment that I always express when giving a talk about my own life with diabetes, accentuating that I am speaking about my own personal experiences only and that I don’t in any way, shape or form recommend this for anyone else. (And neither does my employer!)

I framed my talk this time – which had the fabulously alliterative title ‘Benefits, Barriers and Burdens of Diabetes Tech’ by explaining how I had wanted to provide more than just my own perspective of the ‘three B’s’. I am but one voice, so I’d crowd sourced on SoMe for some ideas to accompany my own. Here’s just some of the responses.

(Click to enlarge)

And this:

One of the recurring themes was people’s frustrations at having to wade through the options, keep up with the tech and customise (as much as possible) systems to work. And that is different for all of us. One person’s burden is another person’s benefit. For every person who reported information overload, another celebrated the data.

What’s just right for me is not going to be just right for the next person with diabetes. So, I used this slide:

I felt that the story of Goldilocks and the Three Bears was actually a really great analogy for diabetes tech. Unfortunately, my locks are anything but golden, so I needed a little (basic and pathetic) Photoshop help with that.

In this fairy tale, Goldilocks is presented with things that are meant to help her: porridge for her hunger, a seat to relieve her aching legs and then a bed to rest her head after her busy day. But she has to work through options, dealing with things that are not what she wants, until she finds the one that is just right.

Welcome to diabetes technology.

On top of working out what is just right for us, we have to contend with promises on the box that are rarely what is delivered to us. Hence, this slide:

Apart from the Dex add circled in red, all the other offerings are ‘perfect’ numbers, smack bang in the middle of that 4-8 target that we are urged to stay between. These perfect numbers, obviously belonging to perfect PWD with their perfect BGLs, were always completely alien to me.

A selection of my own glucose levels showed my reality.

I explained that in my search for finding what was ‘just right’, I had to actually look outside the box. In fact, for me to get those numbers promised on the box, I had to build something that didn’t come in one. (Hashtag: irony)

Welcome to Loop! And my next slide.

And that brings us back to two years ago and the first time I spoke about my Looping experience in front of healthcare professionals. It was after that talk, during a debrief with some of my favourite people, that this term was coined:

Funny thing is, that I am now actually the very definition of a ‘compliant’ PWD. I attend all my medical visits; I have an in-range A1c with hardly any hypos; I am not burnt out. And I have adopted a Goldilocks approach in the way I do diabetes: not too much (lest I be called obsessive) and not too little (lest I be called disengaged), but just right.

It turns out that for me to meet all those expectations placed on us by guidelines and our HCPs, I had to do it by moving right away from the things there meant to help us. The best thing I ever did was start Loop. And I will continue to wear my deliberate non-compliance as a badge of honour and explain how it is absolutely just right for me!

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