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A few years ago, I was introduced by my endo for I talk I was about to give. I was there to do a bit about how I like to be treated by HCPs, and there was a whole bit in there about how I was more than my numbers.  We’d chatted about how I would like to be introduced and I suggested she should read my bio and then say ‘And Renza’s last A1c was…’ before I would cut her off. It was a good lead into my talk.

My endo is one of the very few people who actually does know what my A1c is. As a matter of course, I don’t share it. It’s my data. I own it. Sure, I may post a screenshot of a recent CGM trance because right there and then it contributes to how I am feeling. But it is my own and my decision to put it out there for others to see. I understand that there may be judgement from others, or they may want to share their opinion. That’s fine. I can take it.

I would never, ever ask another person with diabetes what their A1c is. Or what their blood sugar is in the moment. In fact, I deliberately look away if someone pulls out their glucose meter or checks the CGM app on their phone. Of course, if someone wants to tell me what their numbers are, I’m happy to listen.

But I would never, ever ask. And would very pissed off if someone asked me. Imagine if someone asked you your weight? How would you feel about that?

Why is it that even though there are so many different aspects to our health that are measured, it is glucose levels or A1cs that are the ones that get shared around – by ourselves and by others. Get onto any online diabetes group and you will see this happening. I have to sit on my fingers and keep them away from the keyboard when the data being shared does not belong to the person doing the sharing. Some groups have regular ‘roll call’ threads where they ask for most recent glucose results. People sharing their own numbers is one thing – sharing someone else’s is another thing altogether, especially when it is annotated with what the person ‘did wrong’ to ‘cause’ the out of range number.

How can we truly believe that people see us as more than our numbers if that is what is shared? That was the point my endo and I were making during her introduction…she read my bio outlining all the things that I do believe go towards defining me. Yet there she was at the end focusing on a number that I refuse to believe does.

Imagine participating in a ‘current weight’ thread. How comfortable would anyone feel doing that? Or would they even consider sharing someone else’s weight online? (Step down now if you’re a Kardashian and that’s just regular Insta fodder.) I know that there are weight loss groups who do online weigh-ins. While I would never do it, they’re adults making the decision to do it.

I have a number of adult friends who use CGM share apps so that their friends, HCPs or loved ones can keep an eye on what’s going on with their glucose levels. (I’ve done this in the past, but don’t do it now.)

I asked some of them if they set up rules around how this sharing works. Some do. For example, they share only at certain times; they are clear about when they want the person they’re sharing with to get in touch, (one friend said that her partner is allowed to call her if she is low and hasn’t messaged within 20 minutes to say she’s on it – if she messages, he leaves her alone); they do not want to hear any judgement calls from the person seeing their data (and that goes double, triple, quadruple if that person has a functioning pancreas), they do not want to be asked if they have bolused as their trace inches (gallops) higher.

I guess what everyone is trying to do is make sure that they don’t feel as though they are under surveillance.

I asked these friends if there had been a conversation about ‘on-sharing’ – that is, the person who had access to their CGM data sharing it with others. No one had. I never had that conversation when I was using share apps because I knew that no one would think for a moment that was okay. They knew that flashing what they could see on their app to anyone around them was not okay – the information was not theirs to share. My friends said they knew their data was safe too.

Some people may think I am making too much of a deal about nothing. That it is just sharing a number in the moment and that is it. Or it is a moment of pride, sharing a loved one’s A1c they have worked hard on or CGM graph for the day, or snapshot showing how much time they’ve been in range.

But actually, I think it is more than that. I see it as saying that in that moment, that person with diabetes is only about a number and data. That is never, ever the case.

POSTSCRIPT

I wrote this piece a while ago and have been reluctant to publish it but changed my mind after seeing a conversation about this online earlier this week (that I stayed well clear of).

Please see my musings through the lens with which I am writing: I am an adult with diabetes. I was diagnosed as an adult. My perspective is my own and I don’t for a moment claim to understand anyone who is not a woman in their mid-40s, diagnosed with T1D at 24, living near the middle of a large city, who drinks too much coffee. And is called Renza.

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I have been interested in discussions about time in range (TIR) for some time now. It has become a key way that I assess just how I am tracking with Loop and, as I wrote earlier this year, really the only measure I’m interested in. I like it because it can give me real time information about how I am tracking. It shows that when I am at a conference and not eating properly, but doing more activity than I normally would, my TIR is going to be less than if I was at home in a regular routine. It also shows what happens when I’m not Looping for ten hours (thanks to a variety of factors) my TIR plummets!

At ATTD this year, there was a symposium dedicated to the topic and from the standing-room-only crowding of the hall, it’s clear that a lot of others are interested too. In the few presentations I attended about the Medtronic 670G, TIR was frequently referred to (in one study there was a slight increase in TIR after PWD had been using the device for 8 months, although significantly lower than what people using DIYAPS are reporting.)

Just as I did while live tweeting the session, I have to address the issue of access to the technology. TIR is all very well, but it takes tools, and those tools are prohibitively expensive. Some places have no subsidies available for CGM or Flash, others have limited reimbursement programs. And, of course, there are places around the world where accessing glucose strips is a near impossibility.

TIR is a measure for a very, very privileged few, and as much as it’s held up as the future of diabetes, it is simply incorrect and misleading to suggest even for a moment that most people with diabetes have this data at their fingertips. (They barely have finger prick data at their fingertips.)

But, this is a conferences about the latest in technologies and treatments, so let’s talk time in range…

Dr Irl Hirsch is an MD from University of Washington, Seattle. His session as listed in the program was: ‘Time in Range vs. HbA1c: Are our patients ready to change?’, but he changed it to a far more suitable ‘Time in Range vs. HbA1c: Are our patients and health-care colleagues ready to change?’

Irl’s short talk was an absolute cracker and started by exploring what we already know – A1c is flawed. We’ve known this for years, but it’s taken having easy access to CGM data to truly appreciate just how flawed. The two points he raised to back this up were A1c levels can’t be compared between two people (and yet that happens all the time!); each A1c comprises a wide median glucose range. In other words, A1c sucks (they were his words, not mine!).

And then the talk got fun as the focus shifted to just how ready different groups were to shift from a focus on A1c to TIR. The three groups were: people with diabetes (and their families), endocrinologists and non-endocrinologists. Irl presented the results from a survey of diabetes HCPs asking their thoughts on the readiness of those three groups to embrace TIR. Here are the results:

The HCPs surveyed all believe that PWD are by far the most ready to change from A1c to TIR. At the same time they believed that no non-endo HCPs were ready. We really have a problem.

The survey participants offered a lot more than just their assessment of the readiness for this shift. They provided extra comments about some of the barriers to the change. This is how some of the HCPs (all working in diabetes) assessed the inclination for PWD to move to TIR:

But perhaps the most unsettling was what they thought about non-endocrinologists willingness to start to talk TIR. (I think that they were mostly referring to primary care physicians.)

As the list was read out, and the audience responded accordingly, my confidence level about how likely it was that TIR would start to become the norm shrank away. This is despite the way that many PWD have already adopted the measure and use it daily.

In the online groups where I spend a lot of time playing, it is clear that we are already very comfortable and committed to talking TIR. People frequently post their Dexcom Clarity data showing the super-nifty image of how much time they have spent in and out of their self-determined range. This is the language we speak.

But despite my unease about just how quickly the shift will happen, it has definitely begun. The International Consensus on TIR was presented which included targets for people with type 1, type 2 and for women during pregnancy. Plus there was evidence presented that showed TIR can predict the likelihood of diabetes-related complications. With all this, and the demand from PWD, we will be hearing about this more and more in coming years.

Looking for more?  This piece by Irl Hirsh, Jennifer Sherr and Korey Hood was just published in Diabetes Care is a really interesting commentary on the issue.

DISLCOSURE

I attended the ATTD conference in Berlin. My (economy) airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference. 

I’ve been Looping for about 17 months now. I’m a fan (perhaps you may have picked that up).

The reason I am a fan has nothing to do with my A1c. In fact, right now, I couldn’t tell you what my A1c is (more about that later). I love Looping because it works for me. It takes away a shedload of my diabetes tasks. It helps me sleep better. It gives me more energy. It means I think about diabetes less. It significantly, significantly, significantly reduces the number of hypos I have, and the impact of the almost-hypos that have replaced the doozeys used to have. It means I get to wear cool t-shirts.

Badge of honour…

Because in exactly the same way as if I have tried a different eating plan it’s never been about numbers on the scale, Loop has never been about A1c.

It’s especially never about a measurement that is so flawed that it really is time to wonder why, for me and those of us who are able to access far more informative and useful data, even bother to have this checked. (Read this piece by Dr Steven Edelman from TCOYD for more on that.)

I have to say that I feel a lot of discomfort when I see A1c as such a focus. Some if it is for the reasons I’ve already stated, but also, it reinforces that we measure our success as PWD and how we are managing with this number. If my A1c went up this time, I really couldn’t care less. I’ve not long come off three weeks of holidays where diabetes barely interrupted the flow of sunshine, sea and sleep. And family, friends and food. I have not had a hypo in months. I have not had days of wanting ‘I hate diabetes’ tattooed across my forehead.

I went to my endo appointment last week still in slight January holiday mode. I completely forgot to call ahead for a pathology request – in fact, I’d forgotten all about the appointment until I was sent the text reminder a few days earlier. I used to think it was a waste of time not showing up without results waiting for me. But I wasn’t really all that concerned this time. I had some other information at hand including how much time I am spending in range. That gave me enough to focus on before I moved onto other things I wanted to talk about: the things that are really important to me with my diabetes.

Living well with diabetes is about so many factors. Those factors will be different for different people (and yes – A1c may be how some people consider living well).

As someone who has had really dark times with diabetes, it’s the light times that demonstrate how well I am doing. Those times may not be the times that I am ticking boxes that we are told gauge our success. They have certainly not been times necessarily marked with a low or in-range A1c. They are the times when the impact of diabetes is lightest. When it dances across my conscious rather than lives there. When it casts a gentle shadow rather than a thunderous cloud. A1c has never had anything to do with that.

I had an endo appointment yesterday. It was my first in over six months, but this was by choice, rather than inattention. Last November, I decided that I really didn’t need a three month follow-up appointment, and my endo agreed. So, after settling my account for the visit, I made an appointment for May this year. A work trip to Copenhagen via London necessitated a reschedule and this was the first appointment time available that worked for me. The six month follow-up timeframe was pushed out to eight months.

Early last week, I called for a pathology request to be sent to me so I could have a blood draw before heading in. While I had a list almost as long as my arm of things I wanted to discuss, I really am trying to stay on top of having regular screenings so that we can compare results year to year.

Clearly, I am in a really good headspace about my diabetes and, in particular, diabetes HCP care, at the moment. I am happy to attend appointments. Even though I needed to cancel the May appointment, I made a follow up and kept it. I had all my bloods done beforehand. This is a far cry from how I was just a couple of years ago … when actually, I was crying just thinking about it all.

So, last Thursday, I made my way to a local pathology clinic, my request slip scrunched tightly in my hand. And I realised that even with my generally low level of worry about all-things-diabetes, I felt my anxiety levels going up in the days leading to, and the day of, the blood test.

I’m nervous about having my A1c done,’ I said to someone last week, and, puzzled, she asked why. It was a sensible question to ask, because truthfully, of all the things I was being checked for, that was the one that I had a pretty good idea what the result would be.

I estimated my A1c and got it right to 0.2 percentage points. The truth is, I am totally ambivalent about A1c. I couldn’t care less about the number because my TIR is where I want it, and I knew this would be reflected by a way-in-range A1c number. (I take no credit for it – it’s all Loop.)

But my kidney function? My cholesterol? My thyroid function? Coeliac screening? Everything else? I have no idea how they are tracking. There is no app on my phone to remind me how I going with those, or helping me guess what they me be. I have no Loop for my kidneys!

I realised that was the source of the anxiety, not my A1c, even though that’s where I was pointing. I guess that makes sense: feeling nervous about A1c results is expected and easy to explain. But the truth is that wasn’t my I was feeling uneasy.

Those complications screenings that I am diligently trying to make sure I have annually still terrify me. Both in the lead up to having the checks done, and then as I wait for the results.

The beast of diabetes that lives within our very core behaves in different ways. Often it is slumbering, lying almost dormant, lulling us into a false sense of all is well. I guess that is how I have felt since I started looping. I say that I am the least burdened I’ve ever been my diabetes because my diabetes is not thrashing around and making itself known so much. But this last week, it has started to wake, reminding me of its presence. I have felt diabetes more in the last week than I have in the last ten months.

I tried to describe this to a close friend the other day – a friend who has seen me live through some pretty horrid diabetes times, and celebrate some damn fine ones. She asks sensible questions and is always listening and learning. She gets it. But she struggled to understand how I could move from saying I’ve felt the best I have ever felt in relation to my diabetes to suddenly speaking of the anxieties that I hold so deep; especially when nothing had changed.

It’s the unknown. It’s the waiting. It’s the fear of what I may be told. That is the beast.

Today, the lightness in my step and in my heart as returned. The appointment went well, the results showed little, if any, change from the last screening checks. I am back to feeling the way I was before last week. After stirring, and stretching, the diabetes beast has curled up and resettled, and is hibernating again. At least, for now…

Waiting with diabetes

Yesterday an article was published across Australia detailing a new report showing that Australians with diabetes are missing out on the recommended levels of diabetes care. Most of these people receive their diabetes care in general practise.

A couple of things before I go on:

  1. The article was behind a paywall, but Diabetes Australia shared an image of a portion of the it, and that can be accessed here. If you have access to a News Ltd. account, you can read the article here.)
  2. I want to say that in writing this post today I do not want to be seen to be doctor-bashing. I don’t believe that is constructive in any way whatsoever. However, I do think that there needs to be acknowledgement that the level of diabetes care in general practise is not ideal for a lot of people.
  3. The language of the article was atrocious. It appeared first under the heading ‘How diabetes sufferers are dicing with death’ Seriously, journos, ready the freaking Diabetes Australia Language Position Statement.

Onwards…

There was some discussion online after the article was shared, with a few doctors believing the article wasn’t all that helpful and feeling that it was unfairly unfavourable towards GPs. Someone also commented on the language used. (I’m not sure if they meant on Twitter or in the article. The language in the article was strong and very critical of GPs.)

The report is damning, and it shows that the results for people with diabetes are not good at all with only one in three people diagnosed with diabetes receiving expected standards of diabetes care. Only half had their A1c checked, and of those, only half again were in range.

This is despite there being a documented diabetes annual cycle of care (for which GPs receive funding). If completed fully, the annual cycle of care includes: annual A1c, cholesterol, and kidney checks, weight and blood pressure checks, as well as two-yearly eye and foot checks.

For me, it shows yet again how stacked the decks are against so many people with diabetes. We don’t receive the level of care recommended and then, when we don’t meet expected outcomes, or develop diabetes-related complications, we get blamed.

If we want to talk about things that are unhelpful and not constructive, let’s begin with that.

We seem to forget that most people don’t innately know what is required to manage diabetes, or what screening checks are required – especially people newly diagnosed with the condition. A lot of people rely on their healthcare professional – in the case of diabetes, usually their GP – for this.

I’ve written before that in my case, my GP is not in any way involved in my diabetes care. This is a deliberate decision on my part. I understand it is also a privileged decision – I have easy access to my endocrinologist, and other diabetes specialists for all my diabetes healthcare needs.

But that’s not the case for everyone, and a lot of people are reliant on their GP for all their diabetes clinical care.

People with diabetes are being let down.

Even though pointing fingers and appropriating blame is not necessarily helpful, it’s what we seem to do. We can blame the system. We can blame a lack of funding. We can blame a lack of continuity of care. We can blame the fact that there are no coordinated screening programs. We can blame the need for more specialist care. We can blame a lousy and ineffective electronic records system.

But what we can’t do is blame people with diabetes. No one asks to get diabetes. No one asks to get diabetes-related complications. So how is it possible that in a system that is letting us down, we are the ones blamed when it happens?

Also, this week, we have heard story after story of missed type 1 diabetes diagnoses with people reporting that despite seeing their GP (often repeatedly) about their symptoms, they were not checked for type 1 diabetes.

It is undeniable that some GPs simply do not know enough about diabetes to diagnose it in the first place, and then to treat it in an ongoing and effective way, and this is leading to those of us living with it not receiving an adequate level of care to live as well as possible with diabetes.

While there may be some hard truths in the report, hopefully the result will be better care for people with diabetes. Because, surely, that is all that matters.

I wrote a piece last week about how nervous I was about a talk I was giving at the Victorian ADEA Branch Conference about my personal Loop experience. The conference was held on Saturday, and I did my talk and escaped unscathed. It’s a good news story!

Thanks to everyone who encouraged and sent me words of support before my talk. I decided that I’d come clean before starting and admit to the audience that I was feeling a little nervous because I understood just how contentious many may consider what I was about to say.

Having legendary CDE Cheryl Steele share the stage with me – and her story with the audience – certainly helped!

Here are my and Cheryl’s talks.

A reminder – I am not recommending using Loop. This is my personal story and my personal experience. If you would like more information, please search ‘Loop’ on the blog. (There’s lots here because I keep banging on and won’t shut up about it!)

Three days in Vienna is never going to be enough, and neither were three days at ATTD. But mother guilt is a very strong motivator for getting back home as quickly as possible.

This is the second ATTD conference I attended. Last year, I returned a little bewildered because it was such a different diabetes conference to what I was used to. But this year, knowing what to expect, I was ready and hit the ground running.

There will be more to come – this is the initial brain dump! But come back from more in coming weeks. Also, if you emailed me, shot me a text, Facebooked me, Tweeted me or sent me a owl last week, I’ll get back to you soon. I promise. Long days, and long nights made me a little inaccessible last week, but the 3am wake up thanks to jet lag is certainly helping me catch up!

So, some standouts for me:

DIY

The conversation shift in 12 months around DIY systems was significant. While last year it was mentioned occasionally, 2018 could have been called the ATTD of DIY APS! Which means that clearly, HCPs cannot afford to think about DIY systems as simply a fringe idea being considered by only a few.

And if anyone thinks the whole DIY thing is a passing phase and will soon go away, the announcement from Roche that they would support JDRF’s call for open protocols should set in stone that it’s not. DANA has already made this call. And smaller pump developers such as Ypsomed are making noises about doing the same. So surely, this begs to the question: Medtronic, as market leaders, where are you in this?

It was fantastic to see true patient-led innovation so firmly planted on the program  over and over and over again at ATTD. After my talk at ADATS last year – and the way it was received – it’s clear that it’s time for Australian HCPs to step up and start to speak about this sensibly instead of with fear.

Nasal glucagon

Possibly one of the most brilliant things I attended was a talk about nasal glucagon, and if diabetes was a game, this would be a game changer! Alas, diabetes is not a game, but nasal glucagon is going to be huge. And long overdue.

Some things to consider here: Current glucagon ‘rescue therapy’ involves 8 steps before deliver. Not only that, but there are a lot of limitations to injectable glucagon.

Nasal glucagon takes about 30 seconds to deliver and is far easier to administer and most hypos resolved within 30 minutes of administration. There have been pivotal and real world studies and both show similar results and safety. Watch this space!

Time in Range

Another significant shift in focus is the move towards time in range as a measure of glucose management rather than just A1c. Alleluia that this is being acknowledged more and more as a useful tool, and the limitations of A1c recognised. Of course, increasing CGM availability is critical if more people are going to be able to tap into this data – this was certainly conceded as an issue.

I think that it’s really important to credit the diaTribe team for continuing to push the TIR agenda. Well done, folks!

BITS AND PIECES

MedAngel again reminded us how their simple sensor product really should become a part of everyone’s kit if they take insulin. This little slide shows the invisible problem within our invisible illness

Affordability was not left out of the discussion and thank goodness because as we were sitting there hearing about the absolute latest and greatest tech advantages, we must never forget that there are still people not able to afford the basics to keep them alive. This was a real challenge for me at ATTD last year, and as technologies become better and better that gap between those able to access emerging technology and those unable to afford insulin seems to widening. We cannot allow that to happen.

Hello T-Slim! The rumours are true – Tandem is heading outside the US with official announcements at ATTD that they will be supplying to Scandinavia and Italy in coming months. There are very, very, very loud rumours about an Australian launch soon but as my source on this is unofficial, best not to add to the conjecture.

How’s this for a soundbite:

GOLD STARS GO TO….

Massive congrats to the ATTD team on their outstanding SoMe engagement throughout the conference. Not a single ‘No cameras’ sign to be seen, instead attendees were encouraged to share information in every space at the meeting.

Aaron Kowalski from JDRF gave an inspired and inspiring talk in the Access to Novel Technologies session where he focused on the significant role PWD have in increasing access to new treatments and his absolute focus on the person with diabetes had me fist pumping with glee!

Ascensia Diabetes packed away The Grumpy Pumper into their conference bag and sent him into the conference to write and share what he learnt. Great to see another group stepping into this space and providing the means for an advocate and writer to attend the meetings and report back. You can read Grumps’ stream of consciousness here.

Dr Pratik Choudhary from the UK was my favourite HCP at ATTD with this little gem of #LangaugeMatters. Nice work, Pratik!

ANY DISAPPOINTMENTS?

Well, yes. I am still disappointed that there were no PWD speaking as PWD on the program. This is a continued source of frustration for me, especially in sessions that claim to be about ‘patient empowerment’. Also, considering that there was so much talk about ‘patient-led innovation’, it may be useful to have some of those ‘patient leaders’ on the stage talking about their motivations for the whole #WeAreNotWaiting business and where we feel we’re being let down.

I will not stop saying #NothingAboutUsWithoutUs until I feel that we are well and truly part of the planning, coordination and delivery of conferences about the health condition that affects us far more personally that any HCP, industry rep or other organisation.

DISCLOSURE

Roche Diabetes Care (Global) covered my travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #ATTD2018 (more to come on that). They also assisted with providing me press registration to attend all areas of ATTD2018. As always, my agreement to attend their blogger day does not include any commitment from me, or expectation from them, to write about them, the event or their products. It is, however, worth noting that they are doing a stellar job engaging with people with diabetes, and you bet I want to say thank you to them and acknowledge them for doing so in such a meaningful way.

This week, for the first time ever, I had no anxiety at all as I prepared for my visit to my endocrinologist. I always feel that I have to put in a disclaimer here, because I make it sound like my endo is a tyrant. She’s not. She is the kindest, loveliest, smartest, most respectful health professional I have ever seen. My anxieties are my own, not a result of the way she communicates with me.

Anyway, now that the disclaimer is done, I walked into her office with a sense of calm. And excitement. It was my first post-Loop appointment. I’d eagerly trotted off for an A1c the week earlier (another first – this diabetes task is usually undertaken with further feelings of dread) and was keenly awaiting the results.

But equally, I didn’t really care what the results were. I knew that I would have an in-range A1c – there was no doubt in my mind of that. I know how much time I am spending in range – and it’s a lot. And I have felt better that I have in a very, very long time.

The eagerness for the appointment was to discuss the new technology that has, quite honestly, revolutionised by diabetes management.

I sat down, she asked how I was. I marvelled – as I always do at the beginning of my appointments with her – how she immediately sets me at ease and sits back while I talk. She listens. I blabber. She never tries to hurry me along, or interrupts my train of thought.  I have her full attention (although I do wonder what she must think as my mind goes off on weird, sometimes non-diabetes related tangents.)

And then I asked. ‘So…what’s my A1c? I had it checked last Wednesday.’ She told me and I took in a sharp breath. There it was, sitting firmly and happily in what I have come to consider ‘pregnancy range’. Even though that is no longer relevant to me, it frames the number and means something.

I shrugged a little and I think perhaps she was surprised at my lack of bursting into tears, jumping up and down and/or screaming. I wasn’t surprised. I repeated the number back to her – or maybe it was so I could hear it again. ‘And no hypos.’ I said. ‘And minimal effort.’

I’ve had A1cs in this range before. In fact, I managed to maintain them for months – even years – while trying to get pregnant, and then while pregnant. But the lows! I know that while trying to conceive and during pregnancy, I was hypo for up to 30% of the time. Every. Single. Day.

It was hard work. No CGM meant relying on frequent BGL checks – between 15 and 20 a day. Every. Single. Day. And it meant a bazillion adjustments on my pump, basal checking every fortnight and constantly second guessing myself and the technology. Sure, that A1c was tight, but it was the very definition of hard work!

This A1c was not the result of anywhere near as much effort.

Surely the goal – or at least one of them – of improved diabetes tech solutions has to be about easing the load and burden of the daily tasks of diabetes. I’m not sure that I’ve actually ever truly believed that any device that I have taken on has actually made things easier or lessened the burden. Certainly not when I started pumping – in fact, when I think about it, it added a significant load to my daily management. CGM is useful, but the requirement to calibrate and deal with alarms is time and effort consuming. Libre is perhaps the least onerous of all diabetes technologies, yet the lack of alarms means it’s not the right device for me at this time.

These tools have all been beneficial at different times for different purposes. It is undeniable they help with my diabetes management and help me to achieve the targets I set for myself. But do they make it easier to live with diabetes? Do they take about some of the burden and make me think less about it and do less for it? Probably not.

Loop does. It reduces my effort. It makes me think about my own diabetes less. It provides results that mean I don’t have to take action as often. It takes a lot of the thinking out of every day diabetes.

So let me recap:  Loop has delivered the lowest A1c in a long time, I sleep better that I’ve slept in 20 years, I feel better – both physically and emotionally – than I have in forever. And I feel that diabetes is the least intrusive it has ever been.

Basically, being deliberately non-complaint has made me the best PWD I can possibly be.

Oh look! Your phone can now be deliberately non-compliant too, thanks to designer David Burren. Click on the link to buy your own. (Also comes in black and white.)

A recurring theme throughout last week’s ADS ADEA meeting in Perth was the need to manage expectations. I think, in general, we do a really lousy job of this in diabetes.

We’re told that can expect to live a ‘normal life’ after a diabetes diagnosis, when that’s not necessarily the truth.

We’re told we can expect to eat whatever they want, when really, the effort that goes into calculating medication doses depending on the nutrient value of our foods is hard and it may be easier for some to actually limit food choices to make things a little easier.

We’re told to expect a cure in five years’ time, when the truth is that a cure is not even on the distant horizon.

We’re told that we can expect new technology to significantly reduce the burden of living with diabetes, when the reality is that sometimes, it’s more – not less – work.

We’re told to expect person-centred care, when, really, our health system, is not designed to cater for the individual needs of people living with diabetes.

We’re told that emerging technology will be fully automated, smart and cure-like, but we are not told that there will still be human-input necessary and that the devices are not as smart as a functioning pancreas.

We’re told that if we keep our A1c below 7% we can avoid complications, and yet, there is no guarantee, and some of us do develop complications despite an A1c regularly hitting that magic number.

We are told that if we count carbs and dose the right amount of insulin at the right time, we can keep our glucose levels in range, often neglecting to be told that there are a lot of other factors at play.

We are told all this, and then, when these expectations are not met, we are told we’ve failed. Or we are disappointed.

Here’s the thing. The tools are actually really great. Our health system here in Australia is mostly terrific. The majority of our HCPs genuinely do want to give us the best care they can. We don’t need to oversell things as much as we do.

Our expectations are being set so realistically high, that it’s impossible to meet them.

So, THIS is what I would like to say about all the things I’ve covered above to help manage expectations:

Your life will be different after a diabetes diagnosis. But that’s okay. Your new normal is going to be different to your old normal, but hopefully, there will be very things that diabetes will prevent you from doing. Acting like a pancreas is not really normal, but you can do it!

Yeah, you can eat whatever you want. But it’s undeniable that certain foods are harder to manage after your pancreas decides to go on strike. Find what works for you – and that can change. But do be prepared for food to become something that can be a little fraught because you may find that some of your most favourite foods are a little difficult to deal with.

Researchers are brilliant and amazing and the advances in diabetes management are actually quite mind blowing, but a cure? We’re nowhere near that yet. Keep up to date with everything and try to mine through it to work out what is relevant for you. Keep getting excited about management and tech advances – but do keep it in perspective. (Also – consider the source. I promise you that the Channel 10 news or Buzzfeed is NOT going to be where you learn that diabetes has been cured forever.)

You are going to have a lot that you will want to know and work through, and possible a variety of healthcare professionals to see. As wonderful as it would be to have someone to coordinate it all for you, you’ll have to put in the leg work to find the right team, the right service and the right people. And then, once you’ve found them, it’s still up to you to direct what you need. Otherwise you might find yourself at the mercy of a system that is not really going deliver exactly what you need to get the most from it.

You may have heard that in the US there is a (hybrid-closed loop) pump/CGM combo. Some are calling it an artificial pancreas. It’s not. The tech is incredible, but it’s not fully automated. It still requires calibration and it still requires operator input. This is not me being negative, because the tech is exciting. It’s me being realistic about the level of automation

No new devices are going to completely remove the load diabetes adds to your life, or your involvement in their operation.  Insulin pumps need buttons pushed; CGMs need calibration, food needs to be considered. Full automation may be the goal, but it’s a while off.

An A1c of 7% or below will indeed reduce your risk of developing diabetes-related complications and there is a lot of evidence to support that. But it doesn’t eliminate the risk. That’s the annoying and somewhat unfair reality of diabetes. Unfortunately, it’s the reality. Obviously, do what you can to manage your diabetes as well as you can. But don’t expect that a number is a guarantee of anything.

Carbs and insulin are only part of the equation. How you’re feeling emotionally, illness such as colds and flus, hormones, nutrients other than just carbs, the phase of the moon (well, maybe not) … all these impact on your numbers. And they change. Don’t expect that there is an equation that will work all the time.

In life, we’re often told to expect the unexpected. But in diabetes, the unexpected is often only that way because what we have been told to expect is unrealistic. If we were told the truth, and provided with realistic expectations from diagnosis – and throughout our diabetes lives, perhaps we wouldn’t feel that we’re constantly falling behind and failing.

Here’s me and my boss talking about expectations in technology. 

Disclosures

Roche Diabetes Australia has covered my travel and two night’s accommodation for my stay in Perth as I am a presenter at the Roche Educators Day (RED). There is no expectation from Roche that I will write anything about the RED, but I expect I will because it’s always such an interesting and enjoyable day!

The remainder of my time in Perth is part of my role at Diabetes Australia.

My A1c came back a few weeks ago in my target range. As soon as I saw the number, I said to my endo: ‘It’s because of this,’ and I gently patted my arm where my Dexcom was sitting firmly, doing its thing.

I was right. Wearing CGM fulltime has allowed me to better understand what is going on with my glucose levels and how they responds to a variety of different factors.

Puppy on my lap and CGM on my arm.

But it’s only part of the picture and the more I’ve thought about it, the more I’ve come to realise it. I’ve been using CGM almost fulltime for four years now, yet this A1c was ‘more’ in-range than any other in that time.

It can’t just be the device.

No, it’s when I add the low(er) carb way I’ve been eating to the equation that the improvement starts to make sense.

The most obvious thing I noticed when I started eating lower carb was that my CGM trace stayed far straighter for far more of the time.

Before I started eating this way, I’d see a lot of spikes. Sure, I’d come back into range after an hour or two, but there was a good while there that I was above range while I waited for the insulin to do its thing with the carbs I’d just ingested. Insulin isn’t perfect; its action can be unpredictable.

Eating lower carb means the spikes just don’t happen as they used to. Of course there are other contributing factors that do cause my glucose levels to head out of range, but by eliminating – or rather minimising – the one that is most responsible has resulted in a significant change.

So, what is that change? It’s all about time in range (TIR).

And that is how I now measure my glucose management. It’s not about A1c – I don’t like averages because they conceal a lot of what is going on. The A1c average might be a pretty number, but what is going on outside that number to get there?  But when I look at how much of the day is spent in range, there is less place to hide. It is starkly clear the days that I am within my upper and lower limits.

And there is a flow on effect from more time in range. When I think about how I feel on the days that I am far more in range than out, I feel better – more energised, more focused, more able to just get things done.

CGM data easily provides me with this data (and flash glucose monitoring would as well) so I can see at a glance just how much of each day is actually spent in my target range. This means that I don’t really care about what my A1c is. It may creep up a little bit, but if overall I am spending more time in range, then I’m happy.

This is just another reason that A1c measurements are flawed. It was first recommended as a way to measure diabetes management back in 1976 and a lot has happened in diabetes since then. I’m certainly not suggesting that we throw it out the window. But I am saying that with new (and some not-so-new) tools to provide even more information – more meaningful information – I certainly am not using it as the only way I to track and measure how I am going.

TIR. I’m calling it the new A1c! (And adding yet another acronym to my diabetes lexicon…)

Want more? This great piece about ‘going beyond A1C’ from diaTribe is a must read.

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