You are currently browsing the category archive for the ‘Conferences’ category.

The longest queue in the exhibition hall at ADA was not people waiting to see an exciting new therapy breakthrough in diabetes. It was not interest in the latest shiny and bright new device. It was not even a line for free coffee.

No. The longest queue was for on the spot A1c checks. Two booths were doing them – Abbott and A1cNow Systems. Abbott had run out after a couple of days, but the A1cNow folks managed to keep up with the demand at their booth.

A couple of my mates with diabetes and I had commented at the never-ending line of HCPs so eager to know their A1c. Why was this the attraction of the exhibition hall?

On the final day the exhibition hall was open, I was doing a last wander around. End of conference fatigue was clearly settling in – the reps on the stands were a little less enthusiastic about approaching people walking by, and conference delegates had lost the pep in their step and seemed to be drifting a little aimlessly. Or maybe people just needed more coffee. But despite the reduced buzz, I saw that yet again (or maybe still) there was still a queue snaking its way around the A1cNow stand.

‘I need to try to understand why they are doing this,’ I said to the friend I was wandering around with. ‘Let’s go and ask them.’

So, we introduced ourselves to a few of the people standing in line. They were health professionals and were happy to chat.

‘So,’ I started. ‘I guess I’m trying to understand just why you are wanting to get your A1c checked. Do any of you have diabetes?’

They all shook their heads. Their responses ranged from ‘I’m just curious’ to ‘It’s free and I many as well have it done.’ One person said, ‘I have a family history of diabetes.’

One of them asked me why I was asking. ‘I’m really understand to know why there seems to be such a keen desire to know what your A1c is when it kind of doesn’t really matter. I generally avoid getting mine done and I am meant to have it checked every three months. I know people with diabetes who have gone years not having theirs checked. For us there is a lot tied up in it. We feel judged by it. It’s often presented as a way to measure our success as a person with diabetes. We are told we are ‘good’ or ‘bad’ depending on that number. I don’t know too many people with diabetes who would voluntarily line up to get it done really.’

Back home, and I was talking about this with my gorgeous neighbour.‘It was the longest queue at the conference. More people wanted their A1c than to get a coffee!’ (Admittedly, this could have something to do with the state of coffee in the US, but maybe not.)

My neighbour rolled her eyes. ‘It’s like at parties when someone sees you do a blood sugar check and wants theirs done. You know – they get all excited and hold out their hands ‘Do me. Do me!’and then you do and it’s four or five and then you do it again and it’s still four or five, and they’re all excited and ask, ‘That’s good, right.’ And then yell out to everyone about how ‘good’ their number is and then they see the 14 on the meter when you do yours and shake their heads and tell everyone how crap that is.’

She’s right. That’s EXACTLY how it happens!

But returning to ADA… I thanked the HCPs waiting patiently in line and walked away, sighing. I wasn’t getting my A1c checked, there was no need for me to be there. Because getting that done takes the right mindset, and a strength that I just wasn’t feeling at that point. I hadn’t psyched myself up and given myself the pep talk I need before having that measurement handed to me.

And then, it all circled around to another example of ‘doing diabetes’ at different conferences, and my similar annoyance at the long lines for hypo simulators. Or my outright displeasure at people whacking diabetes devices on their bodies to learn what living with diabetes is all about.

Setting aside the very high likelihood that I am turning into a grouchy old woman, I really think that these sorts of exercises are problematic for PWD. No one in that A1c queue was feeling any anxiety about the number the machine was going to spit out. I asked if they were worried and they all shook their heads. It was just a thing to do at a diabetes conference for them. Most likely, they were going to come out with an in range number that they would forget as soon as they walked to the next stand.

Hypo simulators make people feel a little wonky for about five minutes after they get out of them and then they are back on solid ground, not thinking about what is really going on with their glucose levels and how they will affect them for the remainder of the day.

And after wearing a pump or a CGM for a week, it can be returned and never thought of again.

I have been criticised when I have said that it is only people with diabetes who truly understand the impact of diabetes on our lives. I’m willing to wear and own the comments I make. I say this without malice or by trying to limit or minimise the experiences of those living around us. I just don’t understand why there is this idea that by ‘doing diabetes’ or rather doing some of things we have to do as part of our diabetes is really useful.

I would love it that if of HCPs lining up to have a pointless A1c check done, they had sessions in the booth given by PWD where we had a chance to speak about why some of us are so anxious when it comes time to having ours checked. We could offer suggestions about how to talk about results in a way that makes us not feel measured or judged.

And instead of hypo simulators, how about a panel of people with diabetes explaining just how we feel about hypos and how they affect us. When I did this at HypoRESOLVE, the researchers and clinicians were astounded and surprised at what I had to say.

There are a lot of ways that people not living with diabetes, but living around it, or working in it can get a better understanding of how we truly feel about having diabetes in our lives. I just don’t think that a one minute, five minute or even weeklong exercise is the right way to get that insight. The best way is to listen to us.

Advertisements

The day before ADA kicked off, I managed to catch a glimpse – my only glimpse this visit to San Francisco – of the Golden Gate Bridge from the back of an Uber on the way to the Diabetes Mine Summer DData Exchange (#DData19).

This is the third DData I’ve attended, and it always delivers. The speakers are brilliant and the topics on the agenda push some of the boundaries we’re used to seeing as part of the ADA conference that runs alongside. Amy Tenderich expertly emceed the day, and Mike Hoskins’ rapid fire tweeting made sure that those not in attendance had a birds eye view of the event.

This year, there was one session that really stood out for me and it was a panel session moderated by Adam Browne from diaTribe and included JDRF International CEO, Aaron Kowalksi and Alain Silk from the FDA.

For some time now, there have been efforts to move away from the idea of HbA1c being the be all and end when it comes to assessing the outcomes of diabetes management.

This doesn’t only mean in terms of the way we measure our own personal diabetes management, or the success or effectiveness of the devices, drugs or treatments on offer, it also is directed to researchers, clinicians and regulators who continue to use A1c as THE measure to determine the value of whatever they are talking about.

The push has been towards time in range (TIR) because with tools such as CGM and Flash glucose monitoring, this is something that can be easily measured and demonstrated.

The A1c is flawed – we all know that. Anyone with diabetes will have tales of A1cs going down, despite their diabetes management being more erratic, or conversely, their A1c increasing despite having fewer roller-coaster episodes. As a one-off number, it tells very little.

But while TIR is certainly one different way of having a look at just how we are tracking, with so few people actually using CGM or Flash (due to access and affordibilty), we can’t throw out other options. The A1c is not dead yet (just ask the queues of HCPs in the Exhibition hall at ADA waiting to get theirs done. Another blog post for another time…)

Also, TIR cannot be the only other measure we look towards as a substitute for A1c, and this session at DData explored more than the idea of a simple like for like between the two.

Aaron Kowalski highlighted how one of the first things people speak about when using an automated insulin delivery device is how their sleep improves. It was indeed the first thing that I noticed, and it was life changing for me. I noted that I slept like I did before diabetes!

Yet, this is not considered as part of regulatory decisions. Neither is how our diabetes experiences can be transformed. Aaron told the story of a young woman who rarely attended to diabetes tasks when around friends because she didn’t want to pull out her pump to check her CGM trace, or bolus insulin. She didn’t want to draw attention to herself or her diabetes. But being able to do those tasks by simply looking at her phone, or her smart watch meant that she felt so much better – and she did what she needed to do when she needed to do it. How are those improved experiences being documented and considered as part of why something is valuable?

In his earlier talk, Alain Silk from the FDA noted that one of the challenges when it comes to technology regulation is too much regulatory and contractual burden and not enough innovative devices getting into the hands of people with diabetes. The DIY movement manages to sidestep that first part and that means that we do have get to have those devices – those transformative devices – in our hands a lot sooner. Our experiences – which all seem to be positive – and our diabetes outcomes – which all seem to report improvements – really should count for something.

Surely one of the goals we are all seeking (and when I say all, I mean everyone involved in any aspect of diabetes) is to increase the time we DO NOT spend on diabetes anymore. At DData last year, DIY-er Justin Walker said that he believes he has gained back an hour a day since using an automated system. That’s seven hours a week. Over a year, that’s more than a total of fifteen days we get back from diabetes. Add that up over a lifetime of diabetes. It’s significant.

Aaron said that one of his goals as CEO of JDRF is to ‘…take diabetes out of our lives as much as is humanly possible.’ When devices allow us to do that – even if it’s just one little bit – that should be assessed as meaningful.

I have been thinking about this session a lot. In fact, anyone who has asked me about ADA has received a lecture on it. My poor boss got an earful when I returned to work on Monday. I’m pretty sure he regretted asking how I’d gone in San Francisco after I launched into a tirade about how we are simply not listening enough to people with diabetes when it comes to just what we are measuring as being valuable to us.

The problem with adding TIR to A1c as a way to assess devices, drugs or other therapies is that we still are focusing on nothing more than numbers. Sure TIR may be more robust and not simply a snapshot average, but it still attributes our success to a number.

When I talk about why Loop has been so transformative to me, I do mention TIR. But the biggest bangs for my buck – the things that really ring true – is not how much time I spend between two number goal posts.

No.

It’s about how much better I feel about my diabetes. It’s about how much less time, less worry, less stress I am forced to dedicate to diabetes. It’s about how the hypos I have these days take three minutes to deal with rather than three hours. It’s about how less stubborn, and how less frequent those highs are. It’s about the much lighter shadow diabetes casts over my family. It’s about sleep – oh dear god, it’s about sleep! It’s about how easy it is to carry out those required tasks and how little they interfere with my day. And it’s about the time I have been able to claim back as my own.

The footprint of diabetes is so far smaller these days than ever before. THAT is what is meaningful. THAT is what I measure. THAT is what it means to truly go beyond A1c.

DISLCOSURES

I attended ADA as part of my role at Diabetes Australia. My economy flights and accommodation have been covered by the organisation.

Thanks to the team at Diabetes Mine, who kindly provide diabetes advocates with the opportunity to attend their DData Exchange at a significantly reduce cost.

Spending time surrounded by diabetes can be overwhelming and that is never more so than at a conference like ADA. It is huge – there are thousands and thousands of people, an exhibition hall with stands from device and pharma companies that messages about diabetes that are all tied up in statistics and words (and not really about people), and for every talk that shares hope and promise, others that focus on despair.

But it’s easy to step away from that – even if just for a moment – and turn to a member of your tribe. Because then…

…not once did I feel despair.

…not once did anyone pass judgement about another’s diabetes.

…not once did anyone make me feel afraid.

…not once did anyone attribute blame or shame.

…not once was anyone expected to explain themselves.

…not once did I feel stigma.

…not once were the words spoken anything other than real and authentic.

…not once did someone ask another person about their glucose level or A1c.

…not once did someone suggest that anything to do with diabetes was someone’s fault.

…not once did I feel overwhelmed or overcome.

…not once did someone make me feel that I was not enough.

…not once did someone look at another PWD to suggest that they were failing.

…not once was fear used as a motivator.

…not once were we made to feel sorry for ourselves.

…not once did my life feel like it should be measured in nothing more than numbers.

…not once did we call each other inspirational for just living with diabetes.

…not once did anyone do anything other than cheer another’s efforts.

…not once did anyone overreact if they noticed another PWD was low.

…not one did I feel that I was a burden.

…not once did I feel that I had to be a superhero.

…not once did I feel alone.

…not once did anyone demand that their way of doing diabetes was the better way.

…not once was diabetes the overall focus.

There are times that diabetes does its best to make me feel a burden, or that I am simply not enough. But not once – not ever – when I am around people like this do I feel anything other than whole.

Find your tribe

Find your tribe…

More musings from ADA, this time following yesterday’s diabetes-related complications session.

DISCLOSURES

I am attending ADA as part of my role at Diabetes Australia. My economy flights and accommodation have been covered by the organisation.

Whoa – fast jet lag and iced coffee-fuelled talking….

DISCLOSURES

I am attending ADA as part of my role at Diabetes Australia. My economy flights and accommodation have been covered by the organisation.

I’m back on deck at work today after a whirlwind ten days in Europe for meetings and a conference. I started in Amsterdam, then flew to Florence and finally flew to Copenhagen (via Pisa). Those ten days were busy, long and interesting. And, perhaps best of all, packed full of others from the diabetes community.

Spending time with others living with or around diabetes is restorative. I know I get jaded at times, and burnout – in all its forms – takes its toll. I’ve been feeling a little advocacy burnout lately, and that has the tendency to make me feel that I need to step away from diabetes for a bit. Plus, I wasn’t sure if I could be bothered with the inevitable onslaught that comes when these sorts of activities happen.

Instead of hiding away (which is what I half wanted to do), I got on a crowded plane to Europe to spend almost two weeks ‘doing’ diabetes advocacy in different forms. By the time I got to Nijmegen – an hour and a half out of Amsterdam – for HypoRESOLVE I was already feeling better. I felt the darkness of burnout slip away as I sat in meetings, speaking up and providing PWD input into the project. And there, alongside me, were others living with diabetes. We leaned into each other, stepped back so another could take their turn, and supported each other to feel comfortable and relaxed. We reminded each other that there was a reason we were there – because people with diabetes must have a seat at the table and that we must be heard. We lived, breathed and ate ‘Nothing about us without us’ throughout that meeting and by the time I boarded a hideously early flight to Florence for the next meeting, I was raring to go – further boosted by a diabetes in the wild encounter.

Two days of meeting in Florence with friends and peers from the diabetes community talking about our experiences in the diabetes community continued to see my mojo return. We spoke about difficult topics, how the community works best and the place everyone has in there. I was reminded that the community ebbs and flows, and that it is not static. Sometimes, that rut that I find myself in means I forget that all communities change and grow and develop. This is actually a positive, because as it shifts, more people come in, some people step away (for good or just a bit), we reconfigure how it fits us, and diabetes makes sense in new ways.

Some much needed downtime meant that I could reconnect with peers and feel myself being completely and utterly filled up in a way that only comes when surrounded by people who get diabetes and this weird diabetes space. We don’t all have diabetes – we represent different corners of the community, but we know diabetes in a way that is particular to those who live close to or with it. Our dinner after the second day of the meeting saw us finally able to breathe and take some time out of diabetes speak, and instead revert to a steady flow of laughs (shrieks, actually).

The next day, a friend from Italy just happened to be in Florence. We met up and I met her family, including her son who has diabetes. As we drank coffee just over the Ponte Vecchio, diabetes was spoken about a bit, but mostly, I got to learn about this young man who is clearly going to take on the world. He is smart, funny, delightful and inquisitive. His questions about Loop were intelligent – far more so than anything I would have thought to ask before I started using the tech! I hugged his mum as we said good bye, noting that she had just introduced someone else to our tribe.

By the time I arrived in Copenhagen (at 2.30am thanks to high winds in Florence, a bus ride to Pisa to take a diverted flight and some first-rate Italian disorganisation), I was exhausted, but at the same time felt more enthusiastic about the diabetes space than I had in some time. The next morning when I arrived at the conference venue, I was ready for a packed day of speakers, and to do my own presentation in the afternoon. I looked around and saw that there were a number of people living with and around diabetes that I knew, as well as a whole lot of new faces in there. The event was for HCPs, but as always, those of us with a truly personal connection to diabetes searched each other out. I met members of a support group known as ‘Diabetes Dads’ who meet regularly to speak about their kids with diabetes. They were there to support their friend who was speaking about his Looping son.

At lunch, I sat at a table with two PWD I knew. Two other people joined us and we quickly found out they too have type 1 diabetes. The conversation flowed – we understood each other, and our shorthand of diabetes speak easily fitted into our stories. We nodded as we heard stories that sounded familiar, even though they were being told by someone from another country who, until we sat down with our overflowing lunch plates, we had never met before. One of the women at the table had asked during an earlier session about how to wear the devices required for Loop, and I pulled out my RileyLink and showed it to her. She held it and weighed it in her hands. She’d wanted to know how to wear it with a fitted dress and I was able to show just how easily I could tuck away everything, even with the straight dress I was wearing for the day.

We may have all been there because of an interest or curiosity in DIY diabetes, but there is far more than that to draw us together. Just like as at the earlier meetings. As always, diabetes brings us together, but it’s far more that keeps us that way.

By the time I boarded the Dreamliner at Heathrow, all traces of burnout, and questions about how to manage in the sometimes tricky maze of diabetes community had completely subsided and were replaced with the reminder that when we find out tribe and surround ourselves with them, the burnout is replaced by feeling supported. And that’s how and why we show up. We do what we do, we show up, we speak up and we try to get stuff done. Ten days of that and I feel so much better. Which is good. Because as it turns out, those ten days are just the start …

DISCLOSURES

My flights to Amsterdam and accommodation while in the Netherlands was covered by HypoRESOLVE. I am on the Patient Advisory Committee for this project. My flight to Florence and two nights’ accommodation were covered by Lilly. I was in Florence for a DOCLab Advisory Meeting. My accommodation in, and flight home from Copenhagen was covered by the Danish Diabetes Academy. The Academy invited me to speak at their Diabetes DIY Movement conference.

On Saturday I was invited by Diabetes Victoria to be part of the diabetes technology panel session at their Diabetes Expo. (Disclosures at the end of this post.)

The session was on the program as being about ‘The ins and outs of diabetes technology’ and promised to offer perspectives from people with type 1 and 2 diabetes, a researcher, endocrinologist and CDE.

The panel involved two of my favourite endocrinologists – Professor Peter Colman and Professor David O’Neil. I have known both for a number of years and they are, without a doubt, absolute giants in the diabetes clinical and research world. I love that they accept and acknowledge there are limitations to current tech and are not afraid of DIY solutions. Even more, I love how they are very respectful of the expertise of PWD and understand that choice is essential. How wonderful to be on a panel with HCPs who regularly deferred to the PWD sitting alongside them to answer questions and further the discussion.

The session got off to a slightly rocky start as we diverted a little from the designated topic, but we got back on track eventually with the panellists being able to share their experiences and views about just where we are with diabetes tech in 2019, how it can help people living with diabetes, the frustrations tech can lead to and what we hope for the future.

I enjoyed the question about whether tech makes life easier for PWD. I honestly believe this is a double-edged sword – technology is designed to make our lives easier and that’s what it promises to do on the box, but the reality can be very different.

This is something I speak about when explaining my love/hate relationship with tech. Getting things right so that I don’t want to tear devices from my body and throw them out the window takes time. My first encounter with CGM was shocking and I swore to never use it again. The first sensor insertion caused so much blood that the Medtronic rep helping to teach me how it all worked actually gasped and then claimed never to have seen anything ‘so scary’ before. That was not reassuring. The words scary and gory weren’t on the box.

Then there was the data overload, unstoppable alarms and inaccuracy. How was this device meant to revolutionise my diabetes treatment (thatwas promised on the box!) if it was inaccurate, caused me to bleed everywhere and caused me so much frustration and distress that I never wanted to see, let alone use, CGM as part of my diabetes management. Ever. (Fast forward a number of years and thank god that’s not the case anymore!)

There was a lot of talk on the panel about how far we’d come and how lucky we are to be living with diabetes in 2019 rather than in 1959 or 1969 or anytime other than now. We were reminded of glass syringes that needed boiling and needles that needed sharpening. And days before home glucose monitoring, back-pack sized insulin pumps and the good old days where things were really not so good. Just old.

I won’t for a moment deny that we have come leaps and bounds since those days. In the twenty-one years I’ve lived with diabetes there have been lots of tech changes and improvements.

We were asked by the panel moderator how we feel about tech in 2019 and the answer from other panellists was that they feel hopeful and appreciative. The CDE on the panel has lived with type 1 diabetes for thirty-seven years and obviously has seen a lot of changes in that time. The two endos on the panel said that they feel that there have been huge strides made in tech – rapid and very significant in recent years.

When it got to me, I acknowledged what the other speakers had said. ‘I am really pleased to be living with diabetes in 2019,’ I said. ‘I use tech and I generally do love that it is available to me to use, despite the frustrations.’ I paused and looked around the auditorium. I had more to say and I had a split second to decide whether I just left it there, saying what I felt people expected me to say. Or I speak the truth – my truth.

I lifted the microphone to my mouth. ‘But actually, I’m angry,’ I looked around again, settling my gaze on the group of people in the room I knew. ‘I’m angry because we are where we are, and PWD are being given a rough deal.

‘Technology should be easy and accessible and affordable for everyone and it is not. I use a DIY system that means that I am the least burdened by diabetes than I have ever felt. But to get this system, I had to build it myself. It is unregulated, it is experimental. And people like me, doing what we do are largely met with scepticism and suspicion from HCPs who don’t understand the technology. We are accused of not taking our safety seriously – often through passive aggressive comments from not only HCPs but also device companies about the only safe devices being those that have been through RCTs and regulatory bodies. When we talk skin in the game, those of us who have these devices actually attached to our skin have the most at stake, so suggesting we don’t care about safety is ridiculous.’

I paused long enough only to take a breath.

‘The technology is available to do what I am doing, but it takes so long for device companies to get new things to market and through regulators, and even then we are stuck with set targets and limited customisation. We are languishing with older, nowhere near as useful tech. We are expected to accept that and just deal with it and be grateful for it. THAT is why there is a hashtag and a movement called #WeAreNotWaiting. That is why am not waiting. And it’s why I’m a little angry.’

I don’t know everyone who was at the tech panel session on Saturday, but there was a group that I did know. They were the ones who applauded after my little rant.  When they hear a group of panellists claiming that we are fortunate because the current available tech is so much better than what was available 70 years ago, they shrug their shoulders and know that there is more. They are the ones who have started down the DIY road or the Afrezza road (as one audience member explained).

We should not feel that we have to be appreciative, or that what is offered is the best there is. I am so, so glad that there are people out there who have not been prepared to just accept what was on offer, and instead go out there and make better tools – make the current tech better. They were not satisfied, and their smarts and determination has meant that many more of us don’t have to settle for the vastly imperfect tools available. Sure, DIY solutions aren’t perfect either, but they are certainly better.

I’m not really sure how my comment was taken by the broader audience. I suspect that a lot of them weren’t too sure how to take the woman waving her hands about, even after I promised them that I’m really not angry all that much and that I am actually quite delightful (not sure I fooled anyone on that point).

Probably the message that resonated most throughout the panel discussion was that choice is important and that there is no one size fits all solution to diabetes technology. That is definitely true. But that extends to there being no one size fits all to how we feel about the overall tech landscape. And the way I feel is that I am not willing to accept the status quo.

DISCLOSURES

I worked at Diabetes Victoria from September 2001 until January 2016. I was not involved in the planning of the 2019 Expo. I did not receive payment to speak at the Expo.

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

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.  

I never thought I’d be one to think about back-up plans the way I do now. A few years ago, I remember being extraordinarily proud of myself as I wrote this post about my diabetes spares bag. And then a couple of years ago, I thought I was remarkable and quite brilliant at being able to easily manage when I got to work and realised my insulin pump hadn’t made it with me. I thought I had every contingency sorted and was fabulously good at diabetes. Give me a medal, please.

But in the last six months or so, I’ve come to see I’m not quite as prepared as I thought. I probably should point the finger right now at David ‘Bionic Wookiee’ Burren for this. He has highlighted holes in what I thought was a well-planned strategy a number of times (‘What’s your RileyLink Bluetooth address, Renza? You don’t know? You should.’), shaming me into wanting to do better, and really making me question all my life choices at the same time.

Back-up planning has been covered in both the Australian and European Social Media Summits hosted by Ascensia (disclosure at the end of this post) and it is interesting to see that the level of organisation and preparation varies so much in those of us living with diabetes.

Some people have thought out every possible contingency and have a plan for each one. Others have a fixed idea about what might go wrong and have made accommodations for those (that’s me). And others figure that it will all work out and the diabetes gods will sort it out.

I guess that personality type comes into how well-equipped we all may be. Some of us have a far more lackadaisical approach to planning for the apocalypse than others. But I do agree that it never hurts to be prepared or to consider things that may never have entered your mind before.

So here are some things that I have learnt in recent times that have completely changed the way that I think about my back-up planning.

It’s not just about kit (1). It’s all very well to have back up for what happens if (for example) your pump dies, but if that means returning to MDI until a replacement can be delivered, actually knowing how to do MDI is important. (Bless my endo who always asks if I need any long acting insulin ‘just in case’. She gave me some in-date long acting insulin and we had a discussion about what doses would look like after I proclaimed ‘It’s been 18 years since I gave myself a dose of long acting insulin. And it was Protophane. I have no idea what I am doing.’Lovely endo didn’t even roll her eyes at me when she walked me through exactly what I’d need to do to ensure my basal dose was right and the timing of the injections.)

It’s not just about kit (2). Look – my back up plan to my pump dying is another pump. I have a couple in the diabetes spares cupboard and always travel with one. But I don’t carry one around with me on a day-to-day basis. If I was a couple of hours from home and my pump died, I’d need to know what to do in the meantime. Again – it’s been 18 years since I was on MDI, but I always have a spare syringe and insulin with me so I can bolus until I get hooked up again to a working pump. My injection technique is scratchy – very scratchy, but in a pinch, I can manage it. There’s nothing wrong with asking for some re-education on something for which you may be a little out of practise.

Apparently my long-held belief that the DOC is my back-up plan is not actually adequate, because who is going to be able to provide me with insulin/pump consumables/spare pump/battery/RileyLink at 3am when things like to go wrong. (This is despite the success of the whole Pumpless in Vienna story.)

Equally, having a neighbour with type 1 diabetes two doors down is great when I need a Dexcom sensor at breakfast time. But it would probably stretch and test the neighbourly spirit if I woke her and her family in the middle of the night because I desperately wanted my loop to turn back to green and needed a sensor to do that.

I need a back-up of EVERYTHING I use if I want to be able to seamlessly manage any issue that comes up. With Loop that means a spare Loopable pump, a spare Riley Link, a spare G5 transmitter as well as all the necessary consumables. That takes expense as well as organisation.

CABLES!! They need to be part of my back up plan. I was at a conference last year somewhere (can’t remember where) and remembered as I was about to sleep that I’d forgotten the charger to my RileyLink. And just last month didn’t charge it overnight, meaning that my Loop turned red while I was at work and I was unable to do anything until I got home. Carrying the right charging equipment for all devices is important.

But! If I don’t have all these things, I need to ensure that I have a suitable, easy and fully ready-to-go option that will get me through until I can assemble all required to return to normal service.

When your back up plan becomes someone else’s back up plan, you need to do something about it. Case in point: at the DOCDAY event at ATTD, a friend leaned across the table and asked me if I had a spare battery for her Loopable pump. Of course I did, because there is always at least one in my spares bag. I handed it to her and made a mental note to pick up some more AAA batteries next time I passed a convenience store. Of course, I forgot all about it until Loop started complaining and that the battery was running low. Down to 4% battery and starting to feel a little nervous, I found a tiny little store in a backstreet in Brussels, crossing my fingers as I walked in that there would be a stash somewhere of what I needed. There was and I changed the battery just as my Loop app was showing 0% battery.

Beating ourselves up about our perceived or real lack of planning is unnecessary. As Sophie, one of the participants at #ATTDDSMS, said: ‘Life gets in the way.’ And it does. I challenge anyone not living with diabetes to do their normal life, live with diabetes and not only think about all the ‘just-in-case’ scenarios, but also prepare for each and every one of them.

But mostly, what I have come to see is that the point of a back-up plan is for it to be smooth and simple, with as little disruption to our day as possible. A plan that requires a cast of thousands, hours of travel, is insanely complex and relies on a number of external factors that are potentially beyond our control is not really going to make executing our plan all that easy, or give us peace of mind. And that’s a big part of what this is all about – feeling confident that we can manage whatever gets thrown at us.

That is, after all, the nature of this condition we live with.

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 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.  

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. 

Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Archives

Twitter

Advertisements
%d bloggers like this: