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Hasn’t it been terrific this week seeing a couple of great news stories in the T1D tech world? Our friends across the ditch in NZ have welcomed an announcement from medical regulatory board Pharmac that all people with type 1 diabetes will have access to CGM and automated insulin delivery devices (AID). Meanwhile, this week saw the start of a five-year national roll out of AID in England and Wales which recommends access be granted to children and adolescence (under 18 years) with T1D, pregnant people with T1D and adults with T1D with an A1c higher than 7%.
So, where is Australia when it comes to people with T1D being able to affordably access automated insulin delivery devices?
Let’s start by highlighting the positives. There’s so much to be grateful for here in Australia. The NDSS continues to be a shining light for Australians with diabetes. Syringes and pen tips are free at NDSS collection points and BGL strips are subsidised. Since 2004, insulin pump consumables have been on the NDSS, CGM sensors and transmitters have been subsidised since 2022. Insulin is heavily subsidised by the PBS.
But even with these benefits diabetes remains costly, and the playing field isn’t level. Pumps remain out of reach for many Australians. Without private health insurance or meeting eligibility to apply for the government funded Insulin Pump Program, people with T1D are required to find up to $10,000 for an insulin pump. That’s simply not affordable and it means that Australians with T1D can’t access AID.
With AID providing real life-changing benefits and significant reduction in diabetes burden, now is the time to ensure that the tech is available to everyone with T1D who wants it – not just those who can afford it. And that means that it’s time to equitably fund the missing piece of the AID puzzle: Pumps.
A fire has been lit. From a small meeting at ATTD in Florence to catch ups, coffees and phone calls back home, the groundswell has well and truly started. People with diabetes are central to this, working closely with motivated and determined HCPs and diabetes community organisations. There is a united focus on what needs to be done: affordable insulin pumps so AID is a reality for every Australian with type 1 diabetes who chooses. And excitedly, there seems to be an appetite for this from policy makers.
So what can we learn from the recent successes in NZ and the UK? Well, it’s exactly what we know from our previous advocacy experiences and wins here in Australia. A united stakeholder approach is critical with everyone from individuals with diabetes, community groups, diabetes organisations, professional bodies, researchers, industry all being clear and consistent about the ask. Simple and effective communication about the issue is needed. Community drives the momentum – it always does and recognising that is essential. Using evidence to support why AID must be available to all with T1D is important, and goes perfectly with sharing examples of lived experience to highlight the benefit of the technology. Hearts and minds.
With the push already well established and a number of people powering the charge, it’s inevitable that the diabetes world in Australia is going to be hearing a lot about equitable AID and pump access in coming months. Keep an eye out on community groups for grassroots efforts to elevate the issue and for calls to get involved. We know that we can get this done – just as with getting CGMs funded for all people with T1D, for finding a novel way for Omnipod to be funded, and for Fiasp remaining on the PBS. (And, if we look further back, for getting pump consumables on the NDSS.)
Community will be critical to getting this across the line. Once again, we’ll need people with diabetes to step up and write letters, meet with local MPs, make noise, and show why this is necessary. Every single person with T1D and their families has a role to play here. If you’re already fortunate to be using AID, meet with your local MP and tell them how it has changed your life. If you haven’t had access, write about why you know it will help. For me, I’ll be talking about how much time I have grasped back not needing to do diabetes, how I have far fewer hypos, how I have an A1c in the ‘non-diabetes’ range which evidence suggests reduces my risk of developing costly complications. But most importantly, it has reduced my diabetes burden so much and that makes me a far happier, more productive person. And I want that for everyone with T1 D.
Postscript: a quick word (or two) about language. Media reports, especially in the UK, have incorrectly referred to the technology as an ‘artificial pancreas’. What we are talking about is automated insulin delivery devices (or hybrid closed loop systems). It’s important to get the language right for a couple of reasons: Artificial pancreas is simply not the correct term for what the technology is. It overstates what it does and potentially leads people to think the technology is a cure for T1D. Additionally, it underestimates the work that PWD do to drive the technology. More detail about why getting the terminology right is important can be found in this piece I wrote back in 2015 about the same issue and then again here from almost exactly two years ago.)
I’m introduced most generously by Adrian Sanders, Secretary General of the Parliamentarians for Diabetes Global Network.
Australian airports seem to have become a battleground recently for travellers with diabetes. My own experiences since Australia opened back up to travel have been appalling and each week there are reports in online diabetes pages about some pretty horrendous experiences. Specifically, the problems are to do with full body scanners which have been rolled out across international security checkpoints nationally, and some domestic checkpoints.
This year alone in half a dozen international flights out of Melbourne Airports and a dozen or so domestic flights, all been much more difficult than any travel experience pre-COVID. I documented one particularly brutal encounter at Brisbane Airport last year in this Twitter thread. Sadly, since then, other instances have been just as awful.
It seems that the training modules for security staff have incorrect information about which scanning devices are safe for diabetes devices. In my experience, the messaging is consistent: staff have been told that the metal detectors (the older walk-through screeners) are unsafe while the newer full body scanners (the stand still and be scanned) are safe. This is at odds with information from device companies and health professionals and has resulted in a number of people reporting clashes at security checkpoints.
There’s so much discussion about this, as well as lots of confusion and some pretty dire misinformation across OzDOC socials, some of it coming from diabetes groups. Let me try to break this down with information that is based on advice from device companies and the Department of Home Affairs. This is what I have used to try to help me streamline my own travel experiences – with varying levels of success.
Firstly, let’s start with the Department of Home Affairs. This page has the information you need, but specifically, under the section Travellers who have a mobility aid, prosthetic, medical device or medical equipment is this: ‘If you have a medical device or medical equipment, it may streamline the screening process if you have a letter or medical identification card from your doctor or healthcare professional that describes the device or equipment. It is also recommended that you talk with your doctor, healthcare professional or check the manufacturer instructions for guidance on whether the medical device or equipment is suitable for screening by body scanner technology or X-ray technology, and if not, make the screening officer aware of any restrictions before beginning the screening process.’
Device companies all have their own advice, so familiarise yourself with what their recommendations. I wear a Dexcom, and carry a printed copy of security screening advice. At the end of this post you’ll find links and relevant information about the different devices available in Australia.
Knowing how tricky things are likely to be, I am super prepared for security checks now. I carry a letter from my endocrinologist that states I’m wearing diabetes devices that must not go through the full body scanner, and that my pump cannot be removed (not so relevant these days as I wear Omnipod). In a sign of just how much the times have changed, I now need to show that letter about 80% of the time at Australian airports. Pre-COVID I maybe needed to produce it twice in hundreds of journeys.
I always remain calm and clear about what I need: ‘I am wearing medical devices and cannot go through the fully body scanner. I can go through the metal detector, or I need a pat down. I’m happy to wait out of your way.’ I stand firm with this request, remaining polite and calm even when there is increasingly aggressive pushback. In most cases, security staff will tell me that the training says body scanners are safe and metal detectors are not. At this point, I offer the letter from my doctor and the printed out advice from Dexcom and mention the relevant information from the Department of Home Affairs. If there continues to be pushback, I’ll ask to speak with a supervisor. I truly hate doing this.
While this isn’t applicable to me now, at no point ever would I remove my insulin pump and hand it to security staff for inspection. Disappointingly, some of the device companies’ travel advice (and today I saw advice from a diabetes centre) suggests this. Don’t do it. I am happy for them to swab it while I hold it, but I won’t disconnect and hand it over. Items go missing and handed to the wrong person or could be damaged at busy security checkpoints.
I know others with diabetes are happy to go through whatever scanner they are directed to and have had no adverse issues and that’s great. But this isn’t about individual experiences so much as about how to manage situations according to manufacturers’ advice and knowing what official information from the relevant Government department is. It’s also about being treated respectfully and having our own lived experience and knowledge respected by security staff; something that sadly seems to be repeatedly forgotten.
If you’ve had a lousy experience and have the emotional labour to write a complaint to the airport, please do so. There are online forms you can use.
It would be really great if this additional work didn’t fall to people with diabetes. Device companies could step up here and provide cards to use at security checkpoints, similar to those that have been developed for people with pacemakers and knee and hip replacements. Simultaneously it would be great if there was a form that could be personalised and printed out or a card issued via the NDSS when people register for pump and/or CGM access (this wouldn’t serve people who are self-funding, but it would reach the majority of Australians affected). While I am sure that there are efforts underway to address it, there’s no time to wait and a temporary fix is needed immediately. And any other advocacy groups who are addressing this issue can make sure that the advice they are providing on behalf of their diabetes community is accurate and best serves the needs of people with diabetes.
Advice from device companies in Australia
AMSL has this advice for Dexcom users: ‘Use of AIT body scanners has not been studied and therefore Dexcom recommend hand-wanding or full- body pat down and visual inspection in those situations.’
Insulet Australia has this advice for Omnipod users: ‘The Omnipod DASH® PDM and Pods are safe to go through the x-ray machine and the Pods are safe to be worn through airport scanners.’
AMSL has this advice for Tandem T:Slim users: ‘your Tandem Diabetes Care insulin pump should NOT be put through machines that use X-rays, including airline luggage X-ray machines and full-body scanners.
Medtronic has this advice: ‘Your pump should not go through the x-ray machine that is used for carry on or checked luggage or the full body scanner.’
Abbott has this information for FreeStyle Libre wearers: ‘The FreeStyle Libre reader and the FreeStyle Libre sensor can be exposed to common electrostatic (ESD) and electromagnetic interference (EMI), including airport metal detectors. You can keep your FreeStyle Libre sensor on while going through these. However, the FreeStyle Libre reader and the FreeStyle Libre sensor should not be exposed to some airport full body scanners.’
Because our little diabetes community is about sharing and caring, a sharing and caring friend of mine gave me a few Omnipod Dash pods to try. I’ve been Open-Source looping with an old (small size) Medtronic for the last 6 years, and the recent news that the 1.8ml cartridges were coming off the market sent me into a spin of despair. I probably wailed ‘Why do things keep changing?’ at some point.
I am firmly of the ‘If it ain’t broke, don’t fix it’ school of thought, and needing to re-evaluate my current, very-not-broke Medtronic Loop set up was not something I was particularly keen to do. But it seemed that the decision was being made for me, and switching to Omnipod seemed to be a not-too-stressful way to keep using Loop.
Of course, between my panic, wailing and fury (alongside talking myself off the ledge of stockpiling every box of 1.8ml Medtronic cartridges available in Australia), a DIY fix was already being created that involved cutting down the larger 3.0ml cartridges to safely fit the smaller pump.
But the seed had been planted. Maybe Omnipod could be the easy solution. Pods are easily available. I have private health insurance that hasn’t been used to get a pump since 2013. And, most importantly, I won’t need to stop using Loop, or lose any of the beautiful ease it has brought into my life. This has been the reason I’ve not switched to a commercial system. I’m not willing to consider anything that requires what I consider to be a step back. Not being able to bolus from my phone or smart watch, needing to carry another device to drive whatever I’m using, and less customisation are all a step back in my mind.
So, I bribed my sharing and caring friend with lunch, and he came over my way to deliver some pods for me to try and since then I’ve been on and off Omnipod since the beginning of August, including for ten days travelling in India for work.
I’ve been pumping for over twenty-two and a half years. I’ve never taken a pump break. When I say having an insulin pump hanging from my body is my normal, I mean it. It was with me in the delivery room when my kid was born and has travelled the world with me. I have worked out how to tuck a tubed pump away in my clothes so that it doesn’t cause any sort of unsightly bump and other than my constant (sadly losing) battle with door handles, the tubing really hasn’t bothered me.
For these reasons, I’d never understood the deep-seated position some people hold at not wanting to use a tethered pump, or the overall appeal of a patch pump. That’s not to say that I don’t think they’re a good option. I just wasn’t drawn to one the way that I know others have been. To be honest, I’ve been kind of ambivalent about the benefits of no-tubing. That was all 15 pods ago ago, and now I get it.
Here are some of the thoughts I’ve had since using Omnipod:
⊙ Oh my Lordy! Phantom-pump is a real thing. I spent the first week of wearing a pod groping around for my old Medtronic pump. I’d go to grab my pump if I got up out of bed overnight, or first thing in the morning. One night, I thought I’d ripped out my pump and after groping around for a few minutes, woke Aaron, thinking it was under him. Half asleep, he said ‘It’s on your arm.’ I still do ‘the pat down’ before walking out of the house each day, gently tapping the middle of my chest to reassure myself that my pump is there. It’s redundant these days!
⊙ I don’t know why I thought it might be more complicated to use than it is, but I was really pleasantly surprised by ease of it all. The clunk of the cannula going in is slightly startling the first time, (but no more so than putting in a sensor). I’ve not found it painful at all.
⊙ That tape sticks! After three days, the tape has still been firmly adhered to my skin and looking pretty pristine. This was even in India where it was hot and humid. This bodes very well for the warm Aussie summer we’re being promised!
⊙ I thought that the Pod would feel more obtrusive on my body, but I have absolutely not once had a moment of ‘Ooh – that’s uncomfortable’ when I’ve rolled over in bed.
⊙ I’ve worn the pod on my right arm (Dex is always on my left), sides of my stomach (low and high), thighs (and didn’t rip it off when pulling down my jeans to race to the loo!), hips, lower back and all have been fine. No pain or discomfort at all.
⊙ Not needing to wear a bra if I don’t want to is liberating! Not needing to consider housing my pump and Orange Link is one fewer thing to think about!
⊙ I feel lighter because there is one fewer pieces of diabetes kit I need to worry about now that my Orange Link is redundant. This is a big win!
⊙ I’ve had two faulty pods which isn’t great really and the ‘replace pod’ alert came after three hours of inexplicable high glucose levels that were not responding to adjustment boluses. I’d really like to know if a problem is detected with the device before three hours of low teens numbers. The two faulty pods have happened in the last four days and I’m actually back on my Medtronic right now because I am a little thrown right now, but I’ll go back onto a pod later in the week when I head to Sydney for work.
⊙ Sorting our replacements with customer service has been a slight rigamarole, requiring far more calls and questions than seem necessary, and requiring a lot more emotional labour that, quite frankly, I don’t have to give.
⊙ Door handles are friends again. (Door jambs on the other hand, are now potentially double trouble if wearing a Pod on one arm and Dex on the other!)
⊙ I don’t love the waste and the thought that I am effectively using a pump every three days. Insulet offers a super neat recycling program which goes someway to alleviating my concerns about this. I love that my delivery came with a labelled box, zip log bag and clear instructions for the recycling program. This is outstanding and I wish other device companies could be this forward thinking.
⊙ The three-day hard cut off annoys the crap out of me. And yes, I’ve been using the 8-hour grace period every single time. I know that we are meant to change cannulas (tubed or otherwise) every three days, but many of us extend by a day or two when we know it’s safe to do so. And twenty-two years of pumping, not a single site infection, and knowing when I’ve extended to my limit would suggest that I am able to safely decide to keep a pump running for a few more hours without having it screaming incessantly at me. Alas, that’s not possible here. (And how has the DIY community not figured a work around this yet??)
⊙ Cost is, of course a consideration. I’ve not used my health insurance yet, so I have paid the NDSS + Insulet cost which is $29.30 (NDSS cost) + $168.27 (Insulet cost) per box. It works out to just under $20 per pod which is not cheap. If I make the decision to use my private health insurance and start using Omnipod on an ongoing basis, I will only have the NDSS contribution, bringing the cost down to $2.93 per pod – way nicer!
⊙ Omnipod currently has a new user deal on. You get 90 days of Omnipod for $149.40. Really annoyingly this is only available to new customers. I tried to see if I was eligible for this (after all, I’d consider having bought only one box would classify me as ‘new’ to Omnipod, but alas, I was not eligible). This is actually very disappointing. I’ll never understand why companies ‘punish’ their existing customers. But, if you’re brand new to Omnipod, this is a great deal and I’d encourage you to get onto it now! It’s a great way to try before you commit to using your PHI.
⊙ The best thing? Choice! Having a tubeless pump available here in Australia means Aussies with type 1 diabetes have another pump choice and that is only ever a good thing and should be celebrated. I now get why people are determined to only use a tubeless pump and if that is their choice, it should be available to them, and they should be supported to make that choice. I’m hearing that there are some centres that won’t use Omnipod and that’s absolutely not okay. If anyone is in that situation right now, reach out if you’d like some suggestions about advocacy to change the situation.
It’s exciting to try new things and this really is the first significant diabetes device change for me in some time. It is energising to have something different to play with. If you’ve been thinking of trying something new, this is a good thing to try!
DISCLOSURE
None! I was given a few pods to try from a community member (who has no affiliation with Insulet or Omnipod) and bought a box myself. I have done some consulting work with Insulet before, but not in the last two years.
On the day I was diagnosed with diabetes I was given a blood glucose meter. It was a nondescript cream colour, came in a dark blue padded bag and took 20 seconds to count down before giving me a reading, as was norm back in 1998. I can’t tell you much more about it.
In 2001, I got my first insulin pump: a Medtronic 507C. I think it was black. That’s pretty much all I remember about it.
Sometime in 2004, I upgraded to a Deltec Cozmo pump as soon as it was launched in Australia. It was a beauty – a charcoal grey, wonderfully organic design that felt sublime to hold. It was smart and cute, with a heap of features my first pump didn’t have. I loved the bolus wizard, and credit it a lot with the incredibly tight glucose management I maintained while pregnant with my daughter. That was the pump that was in the operating room with me when she was first handed to me, and it was nestled down my bra for the two years I breastfed her. She would hold onto the pump tubing in her tiny baby paws while she nestled into me for a feed. I was heartbroken when Deltec went out of business because I knew I’d need to change pump brands when the warranty was up. My old Cozmo is in a box in my diabetes supplies cupboard, too precious to throw away. To this day I think of that pump fondly and get all excited when someone else mentions how they used one, reminiscing about their love for it.
Since then, there have been a couple more pumps and countless blood and continuous glucose meters. I have limited memories of any of them. Oh, except for maybe the pink MDT paradigm I rebooted when I started DIY looping and still use today. But my fondness for that particular device is mostly because it’s pink. There was the iBGStar – a fun little gimmick because it attached directly to the charging point at the bottom of an iPhone. Remember? It was around for all of about 15 minutes because the next gen iPhone used different chargers and iBGStars were relegated to the DTech museum.
Really, there has only been one piece of kit that stands there next to that Deltec Cozmo. And it’s this (slightly blurred) baby you see on my arm. My Fenix.
I have been using this same transmitter pretty much continuously since June 2018. It’s a rechargeable Dexcom G5 and has worked like a dream. Other than a few months where I was gifted some Dexcom G6 products, I’ve exclusively had this Fenix attached to my arm. It has worked like a dream and has saved me a fortune. How much?
The retail cost for Dexcom transmitters here in Australia is $540 (now available fully subsidised on the NDSS for people with type 1 diabetes). For the last four years, I’ve forked out exactly zero dollars. Had I been purchasing a new transmitter every 3 months, I would have paid $8,640. That’s a lot more than zero dollars. In fact, it’s about the price of a second-hand 2012 Fiat 500.
Where did I get this remarkable piece of kit? From a bloke called Simon who lives in rural Victoria and has been an absolute marvel in the way he has been providing affordable CGM kit for people with diabetes not just in Australia, but around the world, so they can use what they need at an affordable price. He re-batteries transmitters and forwards them on; answers questions about loopable pumps so that people can reap the rewards of DIYAPS. He is at the end of the phone or Facebook messenger to answer questions. He has also found a way to extend the use of G6 transmitters, with the Anubis.
My Fenix is one of the simplest, least fussy DTech devices I’ve used. It works the same way as any Dexcom transmitter, except that after about three months, instead of being thrown in the bin, it gets plugged into the wall for an hour to recharge. Simon created a super simple reset tool to override the factory-set cut-off timer built into Dexcom transmitters, so the ‘Transmitter expiring’ warning was just a reminder to reset it next senor change.
I’ve done this for over four years.
At diabetes conferences, after spying the slightly odd-looking device on my upper-arm, Dexcom reps have stopped me as I’ve been rushing by to ask about it. Most want to know if it’s ‘one of those rechargeable ones’ – they all knew about the mythical Fenix! – and were always interested to know just how it worked. I had dinner one night with a senior engineer from Dexcom who asked me dozens of questions and was delighted to hear about it. I only had one question: I wanted to know that if a bloke in Victoria’s High Country could make this happen and make this life saving tech cheaper for people with diabetes, why couldn’t a multi-million-dollar tech company do the same? I didn’t get an answer to my question.
My Fenix is retiring because I’ve worked my way through my G5 sensor tash. Even though Dexcom G6 was launched into the Australian market over 12 months ago, I have happily continued to use the earlier generation with sensors either purchased or gifted from friends overseas who have been forced to upgrade. I haven’t minded that the sensors have been out of date (sometimes by years!) because it was never an issue. Plus, it meant that I could continue to use my Fenix.
The ingenuity and generosity of people in the diabetes community will never stop to amaze me. I reckon Simon could charge a fortune for his inventions, but he doesn’t. He covers his own costs, (but only sometimes; he donates a lot to people who can’t afford to pay). He is another example of a remarkable person in our remarkable community trying to make diabetes a little less burdensome. And my Fenix has meant four years of that.
When I talk about the diabetes kit I wear each and every day, I am at great pains to point out just how important it is that it does a lot more than just simply work. It needs to be simple, accurate, and not cause more stress. Skin in the game is literal and figurative when I stand up and speak about this, including how we literally and figuratively get attached to the devices that we love. I’d keep using my Fenix forever if that was the only CGM technology available to me because not once did it cause me any stress. It just made my life simpler; it reduced my diabetes burden, saved me money, and helped me hate diabetes a tiny bit less. My Fenix rose for the last time a couple of weeks ago, and now retired, lying in the same box as my Cozmo – reminders of how great DTech can be.
It’s very late in Australia and I’m hypo. And I’m angry, so there’s a trifecta that suggests the last thing I should be doing is publishing words. Especially when it’s a post about something I’ve written about a heap of times before.
And yet, I’m going to write about it AGAIN because for some reason people down the back have not yet got the message that diabetes is not an amusement park ride for their entertainment, and the devices we use to, you know, keep us alive, are not trinkets to play with for kicks.
Just stop it.
This is, of course, off the back of yet another article by another person without diabetes who whacked on a CGM and then was horrified because their glucose trace trended upwards when they ate carbs. It obviously returned to an in-range number within a short time because their body works as it is meant to. I don’t know about you, fellow friends with diabetes, but I really am sick of people with working pancreases wearing diabetes devices to demonstrate to us that they don’t really need to be wearing diabetes devices. We get it; your beta cells know what to do. Stop showing off.
In this article, the writer referred to wearing a Libre for two weeks as ‘an experiment’. Cheers for that. People with diabetes wear these devices because they keep us alive, give us data that is essential for accurately dosing the drugs that keep us alive, and alert us to glucose levels that can plummet or skyrocket, two things that we try to avoid. So we can stay alive for longer. It’s less of an experiment and more an act of survival.
Using this tech to prove to yourself that a high GI piece of fruit or a bottle of Coke makes your glucose levels go high is not an experiment. It is basic science that anyone with year 8 biology, or access to an iPhone and IFL Science could figure out.
But okay, call it ‘biohacking’ and knock yourself out as you believe that this little investigation is contributing to scientific discourse.
Look, we can just think this sort of stuff is a bit of mindless, meaningless faff, and it would probably be good for my blood pressure if I could do that. But honestly, I think it is far more problematic.
Last year, we had some influencer talking about how she uses CGM as a weight loss tool. What a mind-bending disaster that was as I tried to hold onto years of retraining my thoughts, and not fall down the rabbit hole of diet culture and lousy body image that has hounded me for pretty much my whole life.
In this latest article we have gems like this one: ‘However, my daily graph unfolds like a polygraph test: reaching as high as 7.9mmol/L after I’d had dinner.’
Sure, let’s present the food decisions people with diabetes make as lie detector tests. We already are made to feel guilty for looking sideways at a piece of cake, so cheers for adding to that.
And while we’re here, let’s demonise food and food groups, because the thing we want now is for able bodied people to start judging people with diabetes for eating half a banana, or a chocolate croissant. (Two examples given in the article that resulted in glucose spikes. Because of course they did and many people with diabetes could explain why.)
I really don’t know why people without diabetes keep doing this. I don’t understand what they are trying to achieve. Every single time an article like this gets published, it annoys and infuriates people with diabetes. And nothing new is shared. There is literally nothing in this article that we don’t already know or hasn’t been written by the latest non-PWD who decided to whack a Libre on their bicep. There is no illuminating factoid that suggest wearing a diabetes device is a good idea of people without diabetes. There is nothing that makes me think that people with diabetes will be better off because of this article.
And, by the way, if you think that non-PWD wearing diabetes devices will bring prices down, that’s not going to happen. Ketone strips have not magically come down in price because every keto bro worth their bone broth keeps a stash in the bathroom cupboard. In fact, the only effect that this increase in demand has caused for folks with diabetes is that it has become more difficult find ketone strips on the pharmacy shelf.
I’ll say it again: There is absolutely no reason for anyone without diabetes to wear diabetes devices. If you’re doing it because you think it will give you an insight into what it’s like for PWD to wear them, it won’t. Want insights? Ask people with diabetes for their experiences, listen and learn.
And if you are doing it for some biohacking experiment, just stop it. Please. It’s highly likely that in your excitement to share that the chocolate bar you ate in the afternoon spiked your glucose, the flow on effect will be stigma, blame and judgement hurled at people with diabetes. I get that probably wasn’t the intention, but because the writer lacks the nuances to communicate about diabetes, it is likely it will be the outcome.
But, if you insist on wearing one, please at least do people with diabetes the courtesy of not writing about it and publishing it in a daily newspaper for clicks. Or perhaps if you do hit publish, and call that article ‘I wore a glucose tracker for two weeks – it’s bad news for my favourite breakfast’ you could acknowledge the good fortune you have of being able to draw a line through ‘wear a diabetes device’ after 14 days and know you don’t have to do that every day for the rest of your life which is what we have do to.
I don’t know what I was expecting, but I was thinking that diabetes conferences in the time of COVID would be different to pre-COVID times. But really, apart from some people wearing masks, less kissing the cheeks of strangers and sharing vaccination status (‘How many times have you been boosted?’), there wasn’t all that much the differed from the last face-to-face conference back in February 2020.
I realised that on day 2 as I walked through the barely light streets of Barcelona from my hotel to the conference centre that the idea and demands of ‘conferencing hard’ hadn’t changed. The 6.30am breakfast was still alive and well, scheduled so that there was time for another morning session before the actual sessions started. It makes for a very long morning which is what I said walking out of my fourth meeting for the day and seeing it was still only 10.30am.
Also the same is the way conference session timetablers still manage to clump all the sessions I want to go to in the same time block! I barely made it to any sessions anyway, (project and collaboration meetings made it difficult), but when I did have a spare half hour there were always several concurrent sessions I wanted to be in.
And in the same way, there is a magical equation applied to room allocation that results in the most popular sessions being given the smallest rooms, so that people are crowded in and then overflowing – something that has always been a problem but seems even more of an issue in COVID times.
The Exhibition Hall remained a playroom for HCPs with ever brighter and flashier booths all vying for attention. In what is starting to resemble a Las Vegas casino room, blinking lights, interactive boards, and promising giveaways keep attendees away from sessions and focused on shiny work of overpaid marketing and PR firms. They earn their coin – There were queues outside the Exhibition Hall each morning, and the booths were jam packed throughout each day.
I had one of the most confusing and weird experiences ever in this Exhibition Hall at the Abbott stand. I’d been given a heads up that they were giving away dummy Libre 3 sensors on the stand, so I wandered over to see what the buzz was all about. All around the massive booth that had prime position right at the entrance of the hall were giant interactive screens. Attendees were invited to work their way through a six-question survey to test their knowledge on Freestyle Libre 3.
After I got my score, I walked up to one of the Abbott staff and we had this encounter:
Me: ‘Hi, I’ve just done the survey and I was wondering if I could get a dummy sensor, please.’
Abbott staff: ‘I’m sorry?’
Me: ‘Oh, um… a demo sensor?’
Abbott staff: ‘We don’t give away demonstration sensors. Health professionals can register to have one sent to them.’ (She was eyeing the N/P label on my badge.)
Me: ‘Okay, well we can talk about that another time, but for now, what is the sensor that is being offered to people finishing the survey thing? A dummy sensor?’
Abbott staff: ‘Oh no. we don’t have dummy sensors. We have … (pause for effect) … glamour sensors.’ She wandered off to get me one while I stood there stunned at what I had just heard.
Look, I know I spend a lot of time working in the space of diabetes and language, but this one had be absolutely floored. Glamour sensor? I turned to my friend Andrea who had watched this entire encounter and we both mouthed in astonishment ‘Glamour sensor?’
The Abbott rep returned and handed me a box that looked suspiciously like it contained an engagement ring, which I thought was lovely if not a little forward considering we’d only said half a dozen sentences to each other.
I thanked her and opened it and there inside was this:
I sighed. There was my glamour sensor. A fun little token of love from the device company that makes a bloody good product…that is unaffordable to the vast majority of people with diabetes who could benefit from it. I get the excitement though. It is very sexy. It’s tiny and obviously I desperately want it to come to Australia NOW so that we can have access to it. Thank you and please. But is the fanfare and theatre around it at a diabetes conference all that necessary?
Which brings me to another thing that is exactly the same. As I get swept up in the excitement of new technology much like anyone else, I have another focus. And that focus is horribly annoying for whichever rep asks if they can help me when the see me lurking with intent at their booth. ‘Nice kit,’ I say to lull them into a false sense of security, letting them think I am just like any other admiring punter wandering around. And then: ‘When is it coming to Australia?’ The answers are always the same – no matter who I am speaking to and no matter which company they are from. It’s a variation on ‘No idea; maybe I do know, but I can’t tell you; you’re a long way away; there aren’t many of you; stop asking me.’
Also slightly gimmicky, but absolutely for the right reasons, was the demo Omnipod give away at the Insulet stand. Here, anyone could simply head up to the stand and ask for one, and Insulet would make a €5 donation to Spare a Rose for Ukraine. I can’t really complain about this seeming like a stunt when it’s going to a cause very, very close to my heart…!!
One of my favourite things that was a throwback from pre-COVID conferences was seeing groups of people with diabetes – many there as part of #dedoc° voices – wandering around together in packs, comparing notes, and supporting each other. That is something that certainly hasn’t changed, other than for those packs to be more recognisable and more welcome. Definitely a good thing! And something that I hope to see a lot more of in coming meetings.
DISCLOSURE
My flights and accommodation have been covered by #dedoc°, where I have been an advisor for a number of years, and am now working with them as Head of Advocacy.
Thanks to ATTD for providing me with a press pass to attend the conference.
I frequently say that these days, I do hardly anything when it comes to diabetes. I credit the technology behind LOOP for making the last four-and-a-half years of diabetes a lot less labour intensive and emotionally draining than the nineteen-and-a-half years that came before.
It’s true. Justin Walker’s assessment that his DIYAPS has given him back an hour a day rings true. (He said that in a presentation at Diabetes Mine’s DData back in 2018.)
The risk that comes with speaking about the benefits of amazing newer tech or drugs is that we, unintentionally, start to minimise what we still must do. I think in our eagerness to talk about how much better things are – and they often are markedly better – we lose the thread of the work we still put in. But our personal stories are just that, and we should speak about our experiences and the direct effect tech has in a way that feels authentic and true to us.
And that’s why accuracy in reporting beyond those personal accounts is important. Critical even.
Yesterday, the inimitable Jacq Allen (if you are not following her on Twitter, please start now), tweeted a fabulous thread about the importance of getting terminology right when reporting diabetes tech.
She was referring to a tweet sharing a BBC news article which repeatedly labelled a hybrid-closed loop system as an ‘artificial pancreas’. Jacq eloquently pointed out that the label was incorrect, and that even with this technology, the wearer still is required to put in a significant amount of work. She said: ‘…Calling it an ‘artificial pancreas’ makes it sound like a cure, like a plug and play, it makes diabetes sound easy, and while this makes diabetes less dangerous for me, adopting a term that makes it sound like it can magically emulate a WHOLE ORGAN is disingenuous and minimises the amount of time and effort it still takes to keep yourself well and safe.’
Jacq’s right. And after reading her thread, I started to think about the time and effort I had dedicated to diabetes over the previous week.
This weekend, I spent time dealing with all the different components of Loop. For some reason my Dexcom was being a shit and all of a sudden decided to throw out the ‘signal loss’ alert. After doing all the trouble shooting things, I ended up deleting the app and reinstalling it, which necessitated having to pair the transmitter with the app. This happened twice. I also decided it would be a good time to recharge my Fenix (Dexcom G5 transmitter) and reset it.
I ran out of insulin while at a family lunch, necessitating some pretty nifty calculations about how much IOB was floating around, and what that meant in terms of what I could eat from the table laden with an incredible spread of Italian food.
Saturday night, Aaron surprised me with tickets to the Melbourne Theatre Company and in our usual shambolic fashion, we were running late, which meant a little jog (don’t laugh) from the car park to the theatre. I was in high-heeled boots and a skirt that scraped the ground. The degree of difficulty WITHOUT diabetes was high. As I less-than-daintily plunked myself in my seat, I looked at my CGM trace, trying to decide if the 5.5mmol/l with a straight arrow was perfect or perilous, and did a bit of advanced calculus to work out if the audience would be serenaded by the Dexcom alarm at some point in during the 90-minute performance. I snuck in a couple of fruit pastilles under my mask, and surreptitiously glanced down at my watch every ten minutes or so to see if further action was needed. It was. Because that straight arrow turned into double arrows up towards the end of the play.
I spent two hours out of my day off last week for a HCP appointment, as well as several hours dispersed throughout the week trying to work out if there would be any way at all that I might be able to access a fourth COVID boosted prior to flying to Barcelona at the end of the month.
And that doesn’t include the time spent on daily calibrations required because I’m still using up G5 sensors, the pump lines that need replacing every three days (and checked on other days), reservoirs that need refilling (when I remember…) and batteries that need replacing. Or the time set allocated to daily games of ‘Where is my Orange Link’. And the brain power needed to guess calculate carbs in whatever I am eating. (And you bet there are clever people who no longer need to ‘announce’ carbs on the systems they’re using, but the other tasks still have to happen.) It doesn’t include the time out I had to take for a couple of so-called mild hypos that still necessitated time and effort to manage.
Short of a cure, the holy grail for me in diabetes is each and every incremental step we take that means diabetes intrudes less in my life. I will acknowledge with gratitude and amazement and relief at how much less disturbance and interruption there is today, thanks to LOOP, but it would be misleading for me to say that diabetes doesn’t still interfere and take time.
Plus, I’ve not even started to mention the emotional labour involved in living with diabetes. It is constant, it is more intense some days. There are moments of deep and dark despair that terrify me. It is exhausting, and no amount of tech has eliminated it for me.
The risk we face when there is exaggeration about the functionality and cleverness of diabetes tech is that those not directly affected by diabetes start to think that it’s easy. In the same way that insulin is not a cure, diabetes tech is not a panacea. Setting aside the critical issue about access, availability, and affordability, even those of us who are privileged to be able to use what we need, still probably find a significant burden placed on us by diabetes.
This isn’t new. Back in 2015 when Australia was the launch market for Medtronic’s 640G, it was touted as an artificial pancreas, and I wrote about how troubling it was. I stand by what I wrote then:
‘Whilst this technology is a step in the right direction, it is not an artificial pancreas. It is not the holy grail.
Diabetes still needs attention, still needs research, still needs funding, still needs donations. We are not there yet, and any report that even suggests that is, I believe, detrimental to continued efforts looking to further improve diabetes management.
All of us who are communicating in any way about diabetes have a responsibility to be truthful, honest and, as much as possible, devoid of sensationalism.’
It’s why I frequently plead that anyone who refers to CGM or Flash GM as ‘non-invasive’ stops and stops now. There is nothing non-invasive about a sensor being permanently under my skin and being placed there by a large introducer needle. Tech advances may mean we don’t see those needles anymore, and we may even feel them less, but they are still there!
We still need further advancements. We still need research dollars. We still need politicians to fight for policy reform to ensure access is easy and fast and broad. We still need healthcare professionals to understand the failings of technology, so they don’t think that we are failing when we don’t reach arbitrary targets.
We still need the public to understand how serious diabetes is and that even with the cool tech, we need warm hands to help us through. We still need the media to report accurately. And we still need whoever is writing media releases to be honest in their assessments of just what it is they are writing about.
Keep it real. That’s all I am asking. Because overstating diabetes technology understates the efforts of people with diabetes. And that is never, ever a good thing.
The very first time I ever saw or heard anyone speaking of an insulin pump was about 14 months after I was diagnosed. It was National Diabetes Week in July 1999, and I attended an event organised by Reality Check, and supported by Diabetes Vic. Reality Check was a support group of young adults with type 1 diabetes. I don’t remember much from the program at the event, but I do remember a woman called Cheryl Steele. Cheryl was living with type 1 diabetes, and she was sharing her story of using an insulin pump and how it had completely revolutionised her type 1 diabetes management. Three moments from Cheryl’s talk stood out for me: the first was that she was able to be more flexible with what she was eating, the second was that a pump gave her more flexibility with being able to sleep in. And the third was that she loved her pump so much that she threatened to cut the arms off anyone who tried to take it away from her.
The first time I heard about CGM was years before we had the devices here in Australia. I read about them in online blogs and in support groups led by PWD in the US. I read stories about how this technology was changing the way the managed their diabetes in ways I could only imagine. I heard about Libre for the first time a number of years later when I met Claudio Pelizzeni at EASD, and he shared his experience of using the device as he travelled the world (without taking planes).
The first time I heard about DIYAPS was at an informal lunch thrown by Medtronic (I think) in 2015 (I think) in Boston (I think). I’m sketchy about the details, but I do remember with great clarity that at the other end of the table was a woman called Dana Lewis who I had seen online and read about, and knew to be amazing, but not yet met in person. She was talking about…well, to be honest, at the time I had no idea what she was talking about. All I could see and understand was that she was doing something that sounded like science fiction. She had a number of devices linked together and there was something totally magical happening.
The first time I heard about Loop (the DIYAPS I went on to use) was on a rainy New York night in January 2017 at a pub in the financial district. I was having a drink with a friend and just as he was taking the first mouthful of his stout he said, ‘Hang on, I need to bolus’, and he pulled his phone from his pocket and pressed some buttons. ‘What the what?’ I asked and he proceeded to explain Loop, how it worked, how he’d woken at between 80 and 100 (4 & 5) every single morning for the three months he’d been using it, and how he was sleeping better than he ever had.
When it comes to technology, it has always been up to me to first raise discussions about different devices or options. After seeing Cheryl talking about her pump, I asked my endocrinologist about getting one and his opening line (and closing line, as it turned out) was ‘They kill people; I’ll never allow one of my patients to use one’. That was the last time I saw him, and I went on the hunt to find an endocrinologist who would support my choice. I started on CGM because I enrolled myself in a trial. I was given my first Libre at a blogger event. I cobbled together my DIYAPS after sourcing what I needed. As brilliant as my HCP team is, they have not been especially proactive about suggesting, or even introducing the idea of, different diabetes technologies. It’s been learning through others with diabetes that has set me on that road.
When I talk about what peer support means to me, it goes beyond moral support and shared experience. It has been the driving force behind much of the way I choose to manage my diabetes. It has been the impetus for investigating if something new might be right for me. It has paved the way for me to start conversations with healthcare professionals to make access happen.
Peer support is absolutely essential for the mutual understanding and the tips and tricks for making day-to-day diabetes easier. And I’ve always said that hearing others’ stories help make sense of my own. But it is about much, much more. I’ve detailed the ‘first times’ when it comes to tech, but there have been so many more moments – moments that have helped make that tech work for me in ways I’d not thought, and certainly not had discussed with me by HCPs.
When I speak with newly diagnosed PWD I ask if they know others. I gently suggest that it may be a good thing to think about – not necessarily straight away, but certainly at some point. I can never repay the debt of gratitude I have for people who steered me in the direction to the tools that make my diabetes life that little bit easier, but I can do all I can to give back and try to do that every day.
There are two boxes on my desk today because I am recording a little video for a new series at work. In my diabetes store cupboard, there are lots of boxes from currently using and past diabetes devices and products.
These boxes all contain promises and hope – promises to make diabetes easier and the hope that some of the significant time dedicated to something that no one really wants to dedicate time to is gained back.
Burden is very personal. One person’s significant diabetes burden is another’s mild inconvenience. Some look at a CGM and see life changing and lifesaving technology and others see a nagging device of torture. I vacillate between the two trains of thought.
No diabetes device is perfect and does all things. Most rarely even do what they promise on the box.
And yet when we look online often all we see is the perfect stuff. With diabetes tech companies getting smart and becoming all social media savvy, they have looked to the community to see how we communicate and share. It’s not a silly thing to do. Many of the decisions I’ve made about diabetes tech choices have been based on what my peers have to say. But I’m selective about who I search for when looking for those personal experiences and testimonials. I look either for people I kind of know, or people who have a history of being open and honest and real about their experience.
I’d make a lousy ambassador, even though I am asked almost daily to either become an ambassador for a company or promote their product, with lots of free stuff thrown in. Some offer payments. Sometimes I agree to try something, but there are never any strings attached, and while I will accept the product, I will never be paid for using it, or for writing about it. (You can see that in my disclaimers when talking about product. I always say that I’m sharing because I want, not because it’s part of the arrangement for me to use gifted or discounted product. I’ve never done that.) That’s not to say that I have not had arrangements with different companies and been paid an honorarium for my time and expertise, but that is always in the capacity of being an advisor, or consultant.
I’m too honest about the challenges of different diabetes technologies – you bet I love Dtech, but not everything about all of it! It’s why I am always wary of anyone spruiking any diabetes product who has only positive things to say. In the last 20 years, I’ve used or tried pumps from Medtronic, Cozmo, Animas, Roche and Ypsomed. I have loved them all. And hated them all. I’ve never had only good things to say about any of them – even the Cozmo which remains my favourite ever pump, and anytime I see one, I have strong happy feelings of nostalgia…but despite that, it still had its failings that I spoke about often when I used it.
I’ve used CGM products from Medtronic, Dexcom and Libre and had few good things to say about some generations, better things to say about others, but never loved every single aspect of any of them. Because there is always something that isn’t perfect, or even almost perfect.
And finally, I’ve used countless blood glucose monitors from every brand in Australia and some I’ve picked up on travels, and it’s the same deal: love some things, drop the f bomb about others.
The times I have been gifted products, I have always been honest when talking about them, highlighting the pros and cons. Even though I always write about the positives and negatives, I’ve always urged people to read or listen to whatever I have to say understanding that there is a lens of bias with which I see them through. Of course there is, and others should consider that. I also know I have never consented to having anything I’ve said or written reviewed or amended by the company who has kindly gifted product, or have I promised to do a certain number of posts or tweets or Insta pics about them. The sharing I do is always on my terms as are the words in those shares.
I have, however seen many contracts these days that are very prescriptive when it comes to the expectations and commitments of the people being given product. I don’t have an issue with that; I couldn’t care less really. But I don’t think that simply putting the words #Ad on a post gives people the true picture behind the arrangement in place, which is important for the reader if they are to consider just what bias could be at play when reading someone’s opinions.
I am always pleased when I see that industry is engaging with PWD. There should be clear lines of communication, and hearing what PWD say is critical – far more so, in my mind, than what the shiny brochures have to say. But just as I read what the company’s PR messaging has to say with some scepticism, I do the same when I am not clear of the pact between the company and the PWD.
Diabetes devices rarely, in fact, I’d go so far as to say NEVER, do all that they promise on the box. I think I’ve known that all along, but it wasn’t until I started using something that doesn’t come boxed up in sparkly, fancy packaging that I truly realised just how much that wasn’t true.
Those promises to do less diabetes – to reduce that burden – was only ever true to a small degree. And sometimes, there was added burden that you could only truly learn about if you knew where and how to access others with diabetes, in particular those that didn’t sound as though they were simply regurgitating what the brochures said.
Using an out of the box diabetes tech solution isn’t all perfect. There are somethings about DIYAPS that annoy me. A red loop on my Loop app can be frustrating – even if it’s a simple fix. Needing to carry around an OrangeLink and making sure it’s in range gets irritating. Not having a dedicated 1800 number that I can call 24/7 and handing over any concerns to someone else means that the troubleshooting burden falls squarely on my shoulders – even if there is a community out there to help me through.
And yet, even with all that, it is the first time ever that I have been able to say that I do less diabetes. How much less? Well, I think that Justin Walker’s assessment from a presentation at Diabetes Mine’s DData event back in 2018 is right. He said that using a DIYAPS has given him back an hour a day where he no longer needs to think about diabetes.
Last week, I hit four years of Looping. That’s 1,460 hours I’ve clawed back. Or over 60 days. If DIYAPS came in a box (and with a PR machine and marketing materials) and it promised me that, I wouldn’t believe it based on previous experience. But I guess that’s the thing. There is no box, there is no marketing juggernaut. It’s just the stories of people with diabetes who have worked through this and worked it out for themselves.
An out of the box marketing solution for an out of the box diabetes technology solution. I’ve never trusted anything more.
Often when we talk or read about technology it is very much about the latest, newest, shiniest devices. And yes, I wrote about those last week. There’s nothing wrong with learning about latest tech releases, or desperately wanting to get your hands on them.
But the devices are only ever half the story. And that’s why it was so great to see that in amongst all the data and the new things, was a presentation that reminded everyone watching the technology symposium at ADC that the data belongs to people and the devices are worn on the bodies of those people.
This is the whole warm hands, cool tech concept that is often missing when we hear about technology. The devices are not inanimate, they need human interaction to make them work for … well … for humans.
I despair at some of the stories we hear about technology and people with diabetes. Some talk experiences that have left them feeling like a failure when the tech has simply not been right for them. Because that is the way it is posed. If we decide the tech doesn’t suit us, hasn’t worked for us, hasn’t helped us achieve our goals, we’ve failed it.
The truth is, it’s more likely that the failure – if we need to frame it that way – is not the PWD at all. It’s more likely that the tech is not right for the person, and there wasn’t enough assistance to help navigate through to choose the right tech. Or the education was insufficient, or not tailored for the PWD, or not interesting, or not relevant (more on that soon, from Dr Bill Polonsky’s opening plenary from the conference). It is possible that the timing wasn’t right, the circumstances were not optimal, not enough conversations about cost or effort required … whatever it is, none of the blame for something not being right should be placed on the PWD.
When we look at diabetes education, or engagement with healthcare professionals, the stories that are celebrations or considered successes (from the perspective of the PWD and, hopefully, the HCP) show the right recipe. The ingredients will all be different, but the method seems to be the same: the person with diabetes is listened too, time is taken to understand what is important for them, the PWD’s priorities are clear, and goals are realistic and checked along the way. The end results are not necessarily based on numbers or data points, but rather, just how well the person with diabetes is feeling about their diabetes, and if anything new has added to their daily burden. Reviews are focused on successes more than anything else.
My favourite ever diabetes educator, Cheryl Steele, gave an outstanding presentation on how HCPs can best work with people with diabetes to ensure we get the most from our technology.
I spoke with Cheryl after her talk (you can watch the video of our chat for Diabetes Australia at the end of today’s post), and she laughingly said that she could have said the most important things she wanted to say in 2 minutes, and with one slide that basically just said that HCPs need to be truly person-centred and listen to PWD.
But thankfully, she spoke a lot more than that and covered a number of different topics. But the thing that got to me – and the thing that I hope the predominantly HCP audience would take home and remember – was Chery urging her colleagues to focus on the positives.
Cheryl said, ‘The emphasis has to be on what you’re doing well’ and I feel that is a wonderful place to start and end healthcare consultations. I think about experiences where that has happened to me. Such as the time I went to my ophthalmologist after a few years of missing appointments and his reaction to seeing me was not to tell me off for not showing up previously, but instead to welcome me and say it was great I was there. I’ve never missed an appointment since.
How many PWD reading this have stories to share of times when they went into an appointment with data and all that was focused on was the out-of-range numbers? There are countless stories in online diabetes groups where HCPs have concentrated on the 10% out of range numbers rather than the 90% in range. Actually, even if only 10% of numbers were in range, that is 10% that are bang where they need to be!
Perhaps that’s what’s missing from diabetes appointments. Gold stars and elephant stamps!
There is something devastating about walking into an appointment and the first, and sometimes only, thing that is on the HCPs radar is numbers that are below or above the PWD’s target glucose range. I’ve sat in those appointments. I know the feeling of walking in and feeling that I’m tracking okay, only to have none of the hard work I’ve managed acknowledged and instead, only the difficulties addressed.
But then, I think about one of the first experiences with the endocrinologist I have been seeing for twenty years. Without judgement, she acknowledged that I wasn’t checking my glucose much, and asked if I felt that I could start to do one check every Wednesday morning when I woke up. I said that it seemed like such a pathetic goal to set, but she gently said, ‘One is more than none’. The focus was not on what I wasn’t achieving. It was on what I could.
What a wonderful motivator that is.
Disclosures
Thanks to the Australian Diabetes Society and Australian Diabetes Educators Association, organisers of the Australasian Diabetes Congress for complimentary registration to attend the conference. This gave me access to all the sessions.
I work for Diabetes Australia and the video shared is part of the organisations Facebook Live series. I am sharing here because is relevant to this post, not because I have been asked to.
As usual, no one has reviewed this piece before I hit publish (which is unfortunate because I could really do with an editor).
Diabetogenic 