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In what has possibly been the worst kept secret in diabetes in Australia, AMSL today announced their partnership with Tandem Diabetes Care, officially revealing that the much anticipated TSlim pump is on its way to Australia. You can read all about it here, but please note that at this time there is no official launch date available. AMSL is still going through registration and subsidy processes, and this will take some time. (But we’re told we can expect it on the market some time later this year.)
This is the latest development in changes to the Australian pump market which, to be honest, was looking a little dire.
With the announcement that Animas was leaving the market completely (the Australian departure was declared a few months after our North American friends were told; no one particularly surprised), Australians were left with a choice of pump offerings from Medtronic and Roche. Cellnovo had just launched, but there were supply issues. Really, it was slim pickings for us!
Fast forward three months and the Aussie pump landscape is looking a little different, which is great news if you are thinking about starting on a pump, or are due for an update soon. If you’re in the market for a new pump, you can now consider:
- Medtronic 640G or MiniMed Veo
- Roche Accu-Chek Combo
- Cellnovo
- Ypospump (registered and available soon)
And now, Tandem will be AMSL’s pump offering. For updates, check the AMSL socials.
So what does this mean for me? Well, twelve months ago, I would have been beside myself with excitement at today’s announcement. My pump’s warranty would have been about to expire and I was in the market for a new pump. I was extraordinarily frustrated at the ‘pump limbo‘ I found myself in with the limited options available to me not giving me any joy at all. I would have been hassling the gorgeous AMSL team for more details, desperate to get my grubby paws on a TSlim the second it was on the market.
Today I am indeed thrilled by the announcement. I am all about choice and this provides people with diabetes who want to pump another option. This is nothing but a great thing! But for me personally, I am actually happy with my old loopable pump and won’t be making any moves away from what I am doing.
A shiny, sexy new TSlim pump would be lovely shoved down my bra. But unless I can loop with it, it’s not for me. But I will certainly be keeping a very, very close eye on developments, because I do know that with its Dexcom integration, it will have hybrid-closed loop capabilities available in the not too distant future…
I really love a good list. And twenty is such a lovely round number. Plus, I’m going to milk the twentieth diaversary thing for as long as I can. Or at least until I bore everyone. And myself.
On the day I was diagnosed, I was given a meter. It came in a padded navy bag and had a cream-coloured lancet device. The meter looked quite similar to a basic BGL meter today. And it took twenty seconds once the drop of blood was placed on the strip to countdown to give me my reading. I know, twenty seconds! Barbaric!
There have been a lot of advances in DTech in the last twenty years. Some of it has been incredible (CGM, Flash, advances in pumps, better insulins); some…not so much (hello GlucoWatch!). But either way, I’ve always been interested in the latest technologies and have wanted to get my hands on it as soon as possible. It’s not all been great. But I’ve always learnt something when I’ve tried something new.
So, here are twenty things I’ve learnt about diabetes technology.
- There is no one way to do diabetes technology. This fits into the My Diabetes, My Rules thing again.
- Diabetes technology does not only refer to the latest and greatest! It includes your BGL meter (even if you are using one from a few years ago!), your insulin pen, the app you use to track your glucose levels and food intake…
- And MedAngel!
- You don’t need to use the latest and greatest if you don’t want. If you are happy with using a BGL meter and MDI, keep going. AKA: If it ain’t broke, don’t fix it. Unless you want to. And then knock yourself out.
- An insulin pump is just a way to deliver insulin. That’s all it is! It’s a fancy way to do it, but it’s just an insulin delivery device. There are other ways to deliver insulin, so if you don’t want to pump, that’s perfectly okay.
- But if you do want a pump, learn to use it properly. I spent the first three years pumping not having a clue with what I was doing because I was trained by a rep from the pump company who just wanted to get in and out as quickly as possible. I learnt what the buttons did, but had no idea about anything else. I learnt nothing about carb counting, or how to make adjustments. My basal rates were wrong, but I couldn’t fix them because I’d never understood how to.
- That actually goes for any sort of technology. You won’t get the most out of anything if you don’t know how it works.
- So…find HCPs who know DTech, will support whatever you want to use, are up to date with the latest technology and are okay with you customising your devices to suit your needs.
- Once you find those awesome HCPs, listen to them. Learn the rules for your Dtech devices. And then break them to suit you. Being deliberately non-compliant only works if you know what you’re being deliberately non-compliant about!
- And further to that, after listening to your HCPs and reading all the official information and documentation, find out the truth about diabetes technology! Turn to your peers and learn how to use it in real life. I can honestly say that every single tip and trick I have learnt when it comes to DTech came from other people with diabetes. Peer support for the win!
- Worrying about how and where you will site wearable technology is not a frivolous thing to worry about. It makes perfect sense and it’s okay if that is something you are concerned about or if it’s the reason you’re wary about getting a pump, CGM or Flash glucose monitor. (But do ask around for tips in online groups to hear about how others manage – you’ll get some great ideas!)
- Just because you have decided to try something doesn’t mean you have to use it forever. If you decide that tech isn’t for you, put it away in a drawer, or pass it onto someone who wants to use it, and go back to what you were doing before. Or switch between the two. DTech is not like a puppy – it can actually be just for Xmas!
- Dtech may not necessarily make your diabetes easier to manage. Sometimes, it can feel like (and may be) more work – especially at first. Those of us who have been using different devices for some time can forget that.
- Just because one brand is the market leader and has the flashiest flyers, or your HPC wants you to use it, doesn’t mean that’s the one to go with. Look at all on offer and work out which one works best for you.
- And if colour is important (or anything else about the way it looks), and you’re using that as a factor when making a decision with which device to choose, that is perfectly fine!
- Diabetes technology is not a luxury item and don’t let anyone tell you otherwise. I once had a politician ask me when I was giving a presentation at Parliament House why it should be up to the Government to fund my ‘Mercedes Benz DTech’ when there was a perfectly suitable Hyundai option available. We had such a fun conversation after that…?!
- The playing field is not even. Some diabetes technology is expensive to use and out of reach of a lot of people. This is unfair. And sometimes, it’s really hard to talk about DTech access when people can’t access insulin.
- Going old school and analogue is perfectly fine if that’s what works for you. Sure, there are brilliant tracking apps (hello mySugr!), but if you really want to use a record book and pen, knock yourself out.
- DTech can be overwhelming at times. There can be a lot of data available all of a sudden and it is perfectly understandable if you find that it’s a little bit too much to manage.
- Don’t compare your glucose graphs to someone else’s. Their diabetes is not your diabetes.
Extra tip for good luck:
Just as you don’t need to use the latest in DTech, you don’t need to know all about everything new or emerging. But it makes sense to keep an eye out if you can. Find a trusted source that gives sensible information that is up to date. Some great places to start include diaTribe, Diabetes Mine and A SweetLife.
I’m all about the redundant post titles these days, aren’t I? (See: here.) But this last long weekend, diabetes really didn’t make sense.
On late Wednesday afternoon, I noticed a slight tinge on the lower right side of my jaw. I started calculating the last time I’d been to the dentist and thought it was about time for me to make an appointment for a check-up.
Within an hour, I was reaching for some ibuprofen to help with the now more-than-niggling pain, and was on the phone trying to get an appointment with my dentist as soon as possible.
I could spend a long time explaining the pain I was in by late Wednesday night, but I won’t because it was nowhere near as bad as what I had coming for the next two and a half days. Plus, at this point, the pain was still responding to Nurofen every six hours, and I managed to get a good night’s sleep.
By Thursday morning, the pain had increased, and I found myself counting down after I took a dose of pain killers for the next time I would be able to find some relief.
I saw the dentist around the midday on Thursday, and after a quick couple of x-rays, he gently announced that the troublesome tooth would need to come out. There was a nasty infection, and the root canal that I’d had a number of years earlier just wasn’t cutting it anymore. (There was probably a far more technical term for what was going on, but I’d tuned out by this stage and was just wanting some decent relief from the pain that was becoming more incessant.)
I was sent on my way with a prescription for some strong antibiotics and an appointment for a week later when the infection had cleared. That’s when the tooth would come out.
Two hours later, the ibuprofen dose I’d taken earlier hadn’t even touched the sides of the pain and I was starting to think I was in agony. Rookie mistake – that was still a few hours off. I called the dentist and asked if he could recommend any more effective pain relief. The usual suggestion of alternating between ibuprofen and paracetamol wasn’t an option of course, thanks to my Dexcom, so he prescribed me some ibuprofen with codeine. (New prescribing regulations from earlier this year mean codeine is now a prescription only drug.)
The codeine worked. At least it did for the first dose. By 10pm only five hours after I’d taken the two tablets, my understanding of pain had been taken to a new level. Not the top level, mind – that was still to come. But I knew that there was no way I would get any sleep unless I had someone help me deal with the pain.
As it turns out, we don’t have a 24 hour emergency dental service in Victoria. The so-called 24 hour dental clinics I found online didn’t answer their phones when I called, and the dental hospital closes at 9.30pm. Hospitals won’t touch people with dental problems, although the triage nurse did kindly suggest I could go in and sit in the A & E waiting room until I could be seen, ‘…but the wait will probably be at least four hours.’ She suggested I find a late-night GP clinic and go there.
Which I did. An hour later, I was back home, after having filled a prescription for a pain killer, taken the first one and found that it that pretty much killed the pain. (Love it when things do exactly what they say on the box!)
I wish I could say that was the end of the saga. But alas, by the morning, that new drug stopped working too and I spent the next 24 hours in dark rooms, holding an ice pack to the side of my head. I wondered how long it was going to ne before the antibiotics kicked in (I’d been promised bet ween 24 and 48 hours), and the pain would start to truly ease.
By Saturday morning (about 36 hours on antibiotics), the pain had started to subside and by Sunday morning, in time for the Easter Bunny’s visit, I was only needing straight ibuprofen to manage the pain.
And today, Tuesday, I’m back at work and it’s been over 24 hours since I’ve needed any pain meds at all.
So, where was my diabetes in all this? Well, I had a frightful infection. I was in more pain than I have ever experienced in all my life. My blood pressure was up. And my diabetes looked like this:
This made absolutely no sense to me (hence this post title). Usually, just the hint of an infection sends my glucose levels sky-high. Any sort of pain – whether it be a sore throat, aching back or headache will be reflected in rising glucose levels.
But I was looking at this trace: the lowest point was around the 3.4mmol/l mark and the highest was 9.3mmol/l.
Also, my brain was incapable of dealing with anything other than the extreme pain, so I literally did not touch Loop in that whole time, other than to keep checking what my numbers were doing, fully expecting I’d need some serious rage bolusing highs. But the highs never came.
Loop was certainly working overtime, but not as much as I would have expected. My insulin requirements didn’t increase all that much at all, really. At least not until Sunday morning when I had my first hot cross bun of the season, but I can’t blame the infection on that!
I’m just chalking this up to yet another example of diabetes not making any sense; plus being grateful for the technology to help me keep an eye on things with as little effort as possible.
In one of those moments of coincidence, this article came across my Twitter feed today. Apparently, people with diabetes see the dentist less frequently (as compared with people without diabetes). So, my CSA today is: if you’ve not been to the dentist for a while, think of making an appointment today.
I wrote a piece last week about how nervous I was about a talk I was giving at the Victorian ADEA Branch Conference about my personal Loop experience. The conference was held on Saturday, and I did my talk and escaped unscathed. It’s a good news story!
Thanks to everyone who encouraged and sent me words of support before my talk. I decided that I’d come clean before starting and admit to the audience that I was feeling a little nervous because I understood just how contentious many may consider what I was about to say.
Having legendary CDE Cheryl Steele share the stage with me – and her story with the audience – certainly helped!
Here are my and Cheryl’s talks.
A reminder – I am not recommending using Loop. This is my personal story and my personal experience. If you would like more information, please search ‘Loop’ on the blog. (There’s lots here because I keep banging on and won’t shut up about it!)
When I first spoke to my endo about Loop, I wasn’t really all that concerned or nervous. The decision to take my diabetes management in a new direction was mine and mine alone and I knew she would support and work with me. My approach was pretty much the same as when I have changed any aspect of my management, whether it be introducing new tech, a new eating plan or anything else that deviates from the norm.
And after my first post-loop appointment, when she listened to what I was doing and how it was going, her response was brilliant. I guess that after she heard how great I was feeling and how well I was going since looping she realised that this was the best thing for me to do at the moment and she wanted to know how to continue to support me.
But I know that is not the case for everyone and that is especially evident at the moment with more and more people using DIY diabetes technology solutions.
I frequently see discussions online from people who are very apprehensive about an upcoming appointment when they will be telling their HCP that they are Looping. And I have heard stories of HCPs refusing to continue to see people with diabetes who have started using the technology.
This actually isn’t about Loop. At the moment, a lot of the discussion may be about DIY technologies, but actually, this goes far beyond that.
It’s the same as for people who have adopted a LCHF approach to eating and have been told by their HCPs that it is not healthy and they would be better off returning to an evidence-based eating plan.
It is the same as when pumps were new and CGM was new and Libre was new, and HCPs were wary to recommend or encourage their use due to the lack of evidence supporting the technologies.
I am keeping all this in mind as I prepare for a talk I’m giving this weekend for the Victorian branch of the Australian Diabetes Educators Association. I guess I am a little battle-scarred after my talk at ADATS last year, and am being far less cavalier about charging in and extolling the brilliance of Loop. I know that the audience is new to this technology, know little about it, and might be uncomfortable with the idea that I ‘built my own pancreas’. For some, it will be the first time they have ever seen or heard of it.
I’m trying to think of a way to talk about it so that the audience responds positively to the technology rather than the way many responded at ADATS last year.
But I am a little stuck. Because if I stand up there and say that since looping I feel so, so well, have more energy than in forever, am sleeping better than I have in 20 years, feel less anxious about my diabetes and feel safer, don’t have hypos anymore, feel the least diabetes burden ever, and have an A1c that is beautifully in range… and people still question my decision to use the technology, I’m not sure what else I have. I don’t know what more I can say to try to convince the audience just how much this has benefitted me.
The ending I’m looking for in my talk is for the audience to leave feeling interested in the technology and open to the idea of Loop as a possible tool for some of the people with diabetes they see.
But perhaps more than that, it is wanting the HCPs to think about the way they react when someone walks into their rooms, wanting to talk about something different or something new. It’s about being open to new ideas, accepting that the best thing for the PWD is not what the guidelines say, and realising that there is a lot going on out there that is driven by the end user. And perhaps it’s time to really start listening.
Since my talk last at ADATS year about my journey to Loop, I have had many HCPs want to talk to me about my experience using a DIY system. When I was ATTD two weeks ago, several Aussie HCPs also at the conference cornered me, and, in almost hushed tones, asked if they could pick my brains about the whole DIY thing.
I have to keep reminding people that all I can talk about is my own experience – I’m certainly not an expert, my involvement has been following the brilliantly clear step-by-step how to guides developed by a brains trusts of brains far, far smarter than mine could ever hope to be. But I am always happy to talk about my own decision to try Loop, and experiences since.
DIY is not going anywhere and I’m pleased to say that over the next few month I’m giving a number of talks at HCP conferences where I have been asked to speak about how my diabetes management – and attitude to diabetes – has changed since I started Looping. It great to see this on the agenda of diabetes HCP meetings (including the ADEA Victorian Branch conference later this month and the ADS ADEA ASM – or whatever it’s being called now – in August this year. I hope that ADATS will give it more airtime when that come around in October.)
Naturally, and I suppose somewhat reassuringly, the first part of any conversation about Loop is about how safe it is, or rather, questions including varieties of: ‘But the safety! There’s no regulation! There are no RCTs! Where’s the evidence?’ These are often the same things held up by device companies when talking about their products: ‘We are ALL about safety! We have jumped through all the regulatory hoops and come out the other end with flying colours! Here are our RCTs! Here is the evidence!’
When I began reading up about Loop, the thing that would make me close my computer, shake my head and pack all thoughts of it away, was not that I didn’t think it safe. It was that I didn’t think I had the technical aptitude to make it happen.
From the very first reading of the documents and listening to others speaking about it, I realised that this was something that had been built from the foundations of safety. Unlike the health condition that moved in almost 20 years ago.
Type 1 diabetes is not no-risk. At the point of diagnosis, we are handed a supply of a potentially lethal drug. I know I don’t like to think of it in those terms– insulin is my lifeline – but anyone who has even an ounce of knowledge about the treatment of type 1 diabetes knows how potent insulin is.
We know that too much insulin – even a tiny bit too much – can be problematic. And that problem spectrum can be from ‘Shit, I need jelly beans’ to … well, to death. We are faced with this reality every day. I have enough insulin in my pump at any time for it to be extraordinarily problematic if overdosed.
With this knowledge on board – alongside that theoretically lethal drug on board – we mitigate risks with every single thing we do. We over treat lows; we err on the side of caution when we bolus – under dosing for fear of overdosing.
We live safety, we breathe safety – all the time – because if we don’t the risks are high. All too terrifyingly high.
I say this without an ounce of disrespect, but when a device company or HCP implies – intentionally or otherwise – that those of us using a DIY system are being reckless and being unsafe, I find it insulting, and a little disingenuous, because any conceivable hazard is highest to those of us who have the devices stuck to our bodies, and using an algorithm that decides how much insulin to push into our bodies.
I feel much safer Looping that I did pre-Loop. Scary hypos are a thing of the past. My glucose levels sit in a straight, tight line for most of the day instead of the rollercoaster I was used to that would send my mind into a permanent state of fuzziness. I am not running low overnight, only finding out for just how long when I finally wake in the morning and see my Dex trace below the red line for hours and hours and hours without my knowledge. My A1c is in the range that means (allegedly) I am least at risk for developing diabetes complications.
I honestly don’t know how I can be any safer while living with a health condition that throws so many unsafe things at me!
Curled up in the comfort of my bed in Melbourne on Saturday night, I was transported to London where I was watching the live stream and live tweets of the Type 1 Diabetes Rise of the Machines event. (You can read details of that here, or by checking out the #T1DRoM Twitter stream.)
When you are not actually there and able to see and gauge the reaction of the audience, it can be easy to misinterpret the vibe of the room. I couldn’t see the faces or body language of the people in the audience, so I wasn’t sure if my response was the same as theirs.
But there are somethings that can’t be missed – especially with a live Twitter feed!
A representative from one of the device companies was speaking about their range of products, one of which is a blinded CGM device*. Immediately, I bristled. His words celebrating the ‘blinded’ nature of the device, ‘There’s no way for you to interfere with it’, did nothing to make me feel more reassured at what he was saying.
The tweet I sent out pretty much sums up how I felt about his comments:
And this one from Dana Lewis, who was a guest speaker at the event, was bang on:
Yeah – clearly I was not the only one who had that reaction!
I remember a number of years ago wearing a blinded CGM. It was actually the first CGM here in Australia and I was on a trial for something (I actually can’t remember what the trial was for…) and wearing the clunky CGM was part of the study.
But I certainly do remember demanding that once I returned the CGM (after about 3 or 4 days), I was given a print out of my data. ‘Why would you want that?’ the trial nurse asked me. I imagine that the look I gave her could only be described as ‘withering’.
‘Um…so I can see what is going on with my glucose levels throughout the day. That data is gold – there is no way I will ever have seen anything like it before and the insights will be incredibly useful.’
‘But you probably won’t be able to interpret it all. And what are you going to do with the data?’ That question was asked with an element of suspicion.
I don’t suffer fools and was about to yell loudly at the trial nurse who needed some lessons in ‘patient empowerment’, so I decided to take my questions elsewhere, asking to see the trial supervisor who had enrolled me in the study. The result was a crisp envelope with my name neatly printed across the front handed to me at the end of my next visit to the centre.
Fast forward – probably about 17 years – and I wear CGM all the time and use the data to make daily adjustments to my insulin doses. (Well I did until Loop took over that for me. Reason #124978 I love Loop. Have I mentioned that before?)
I can’t imagine having something connected to me that is collecting information that I could use in real time to improve my diabetes management and not be able to access that data. How frustrating it would be to have something attached to me that could tell me when I was going out of range, but not letting me know it at the time so I could actually do something about it!
Today, if a healthcare professional suggested I wear a device for any period of time where I could not access the data there is no way I would agree.
If you think that it is a good idea because not all PWD could understand the information, then that is a shortcoming of the education process – not a shortcoming of the person with diabetes. And, yes, of course not everyone wants to see all their data, but they should certainly have it offered to them if it is out there!
Denying us access to our own data is simply another way of trying to control the narrative of our health condition and our health education. Not arming us with the information – especially if it is readily available – serves no one.
*Blinded devices are often referred to as the ‘Pro’ version which makes me a little annoyed. Pretty sure the ‘Pros’ here are the ones wearing the devices and analysing and acting on the data 24/7…
I was very lucky to be invited to attend the Roche #DiabetesMeetup held at ATTD in Vienna. About 60 advocates were brought together on the thirty-fifth floor of a building high above Vienna. I reconnected with friends and fellow advocates from Italy, Sweden, Germany, Belgium and welcomed UK advocates for the first time to the blogger group. The dynamic in this room is electrifying – these are smart, passionate, funny, outspoken, opinionated people with high expectations when it comes to their diabetes management experience – exactly the sort of people you want around you when you are developing diabetes technology solutions.
Elena from Italy.
I remain fascinated – and impressed – by these Roche events, even though this is the fourth one I’ve attended. I have a level of frustration at times when attending similar events because instead of them being used as an opportunity for engagement and interaction, they become sales pitches, with attendees being spoken at. I have sat in other events feeling as though I am being told what and how I should feel about my own diabetes with those speaking at me making all sorts of assumptions based on some ridiculous market research that involved anyone other than real people with real diabetes!
By and large, these #DiabetesMeetup events are the very opposite of that.
As I have said before, I am not naïve. I am fully aware that we as bloggers and patient advocates are worth a lot to industry. We blog, we Instagram, we Tweet, we Facebook. We have a voice and we use it. We have a platform – however big – that means we are very privileged to be able to speak about our experiences and have people listen.
By engaging with us in this way, we have become part of Roche’s – a very big drug and device company – 21st century marketing and communications plan. We are part of their PR machine. And I am absolutely okay with that. I can leave at any time. I can not write about what goes on at these events if I don’t want to.
I have also said before that it would be worse for us to not be part of their plan – or if they were stuck in the 20th century and refusing to actually work with people with diabetes.
Ute Volkmann from Roche Global doing a stellar job running the day.
The reason these events continue to leave an impression is because they are absolutely not an opportunity for Roche to lecture us and do a big whizz bang display of their technologies. Of course we see what they’re up to. But then we tell them what we think. (At the first Roche #DiabetesMeetup I attended in Munich, we were shown their in-development CGM device. The feedback wasn’t all that favourable. I have not seen or heard anything more about this product, and can only imagine that their R&D team had a lot to think about after rather negative reviews from the people who were hoped to be using the device.)
Previously, I have refused to attend advocate sessions in the past because there was an expectation that all attendees would be using the company’s product, and if not, we were expected to hide away any competing devices . Not once at these events has anyone asked me what I use, tried to give me a Roche product or suggested I use one of their devices. (For the record and full transparency, the only Roche product I use is my lancing device which I paid for myself and the lancets that come with it. I’ve not needed to buy more lancets because I think the lancet device came with about 10 of them, so I’m good until about the middle of the century.)
The big ticket item in Roche’s diabetes tech bag at present is the Eversense XL. The announcement at #DibetesMeetup that the implantable sensor now has a lifespan of 180 days. To illustrate the point, we heard that if you inserted a sensor while there was snow on the ground, you would need to replace it in the height of Summer.
Annie and I can always be trusted to bring down the overall tone of an event.
I am all for continued innovation in sensor development, and I can certainly see the appeal of the Eversense. I spoke with a couple of people at the event who were wearing them and their experience had been super positive. I’ve not worn the device and am most interested in the real life experience: how does it feel on?; how annoying is the transmitter and does it fall off?; the tape required for the transmitter to adhere to the skin – does it irritate? I am also keen to see how Eversense will be able to integrate with existing diabetes tech. And, I’m ever mindful of expected cost to the person with diabetes because I want to know if this is something that will be available and accessible to many people, or just a lucky few.
Roche followed up the blogger event with a symposium on the Friday of ATTD. It was here they announced they would be supporting JDRF’s Open Protocol proposal (which I discussed in yesterday’s post.)
While the formalities are all interesting, it is often the discussions that happen outside the official program that have real impact. I had a couple of very robust conversations about the role PWD have when working with industry. We know there are people in the diabetes community who have a complete and utter aversion to any interaction with device and drug companies.
My position on this is and has always been clear: our role is to be part of every single discussion about diabetes and every level and every step of the way. My only insistence is that there is transparency. I always disclose when I have been funded to attend an event, if I have been given product or working with any company on a project.
I was also involved in a brilliant conversation about the whole idea of sharing CGM data with loved ones. Some people were completely against the idea, unable to consider a single time when they would ever want anyone else to see their CGM numbers or find it useful. Others are big fans of share capabilities, because it makes their families feel safe when they are away. I see both sides to this story.
I had lots of chances to hear what people had been up to and how their advocacy efforts were playing out. One of the wonderful things about coming together every six months or so is that there has been time for projects to grow, blossom and show results. It is always great to hear people doing so well in their endeavours to provide support to others with diabetes.
In a connected world where I see most of these European diabetes advocates online at least every week, it is undeniable that these face-to-face opportunities provide an extra level of support and engagement. I am extraordinarily grateful to have that opportunity – to see, learn from and work with such a dynamic group of people I am fortunate to call friends.
What’s the collective noun for a group of dynamic diabetes advocates?
DISCLOSURE
Roche Diabetes Care (Global) covered my travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #ATTD2018. They also assisted with providing me press registration to attend all areas of ATTD2018. As always, my agreement to attend their blogger day does not include any commitment from me, or expectation from them, to write about them, the event or their products.
Three days in Vienna is never going to be enough, and neither were three days at ATTD. But mother guilt is a very strong motivator for getting back home as quickly as possible.
This is the second ATTD conference I attended. Last year, I returned a little bewildered because it was such a different diabetes conference to what I was used to. But this year, knowing what to expect, I was ready and hit the ground running.
There will be more to come – this is the initial brain dump! But come back from more in coming weeks. Also, if you emailed me, shot me a text, Facebooked me, Tweeted me or sent me a owl last week, I’ll get back to you soon. I promise. Long days, and long nights made me a little inaccessible last week, but the 3am wake up thanks to jet lag is certainly helping me catch up!
So, some standouts for me:
DIY
The conversation shift in 12 months around DIY systems was significant. While last year it was mentioned occasionally, 2018 could have been called the ATTD of DIY APS! Which means that clearly, HCPs cannot afford to think about DIY systems as simply a fringe idea being considered by only a few.
And if anyone thinks the whole DIY thing is a passing phase and will soon go away, the announcement from Roche that they would support JDRF’s call for open protocols should set in stone that it’s not. DANA has already made this call. And smaller pump developers such as Ypsomed are making noises about doing the same. So surely, this begs to the question: Medtronic, as market leaders, where are you in this?
It was fantastic to see true patient-led innovation so firmly planted on the program over and over and over again at ATTD. After my talk at ADATS last year – and the way it was received – it’s clear that it’s time for Australian HCPs to step up and start to speak about this sensibly instead of with fear.
Nasal glucagon
Possibly one of the most brilliant things I attended was a talk about nasal glucagon, and if diabetes was a game, this would be a game changer! Alas, diabetes is not a game, but nasal glucagon is going to be huge. And long overdue.
Some things to consider here: Current glucagon ‘rescue therapy’ involves 8 steps before deliver. Not only that, but there are a lot of limitations to injectable glucagon.
Nasal glucagon takes about 30 seconds to deliver and is far easier to administer and most hypos resolved within 30 minutes of administration. There have been pivotal and real world studies and both show similar results and safety. Watch this space!
Time in Range
Another significant shift in focus is the move towards time in range as a measure of glucose management rather than just A1c. Alleluia that this is being acknowledged more and more as a useful tool, and the limitations of A1c recognised. Of course, increasing CGM availability is critical if more people are going to be able to tap into this data – this was certainly conceded as an issue.
I think that it’s really important to credit the diaTribe team for continuing to push the TIR agenda. Well done, folks!
BITS AND PIECES
MedAngel again reminded us how their simple sensor product really should become a part of everyone’s kit if they take insulin. This little slide shows the invisible problem within our invisible illness
Affordability was not left out of the discussion and thank goodness because as we were sitting there hearing about the absolute latest and greatest tech advantages, we must never forget that there are still people not able to afford the basics to keep them alive. This was a real challenge for me at ATTD last year, and as technologies become better and better that gap between those able to access emerging technology and those unable to afford insulin seems to widening. We cannot allow that to happen.
Hello T-Slim! The rumours are true – Tandem is heading outside the US with official announcements at ATTD that they will be supplying to Scandinavia and Italy in coming months. There are very, very, very loud rumours about an Australian launch soon but as my source on this is unofficial, best not to add to the conjecture.
How’s this for a soundbite:
GOLD STARS GO TO….
Massive congrats to the ATTD team on their outstanding SoMe engagement throughout the conference. Not a single ‘No cameras’ sign to be seen, instead attendees were encouraged to share information in every space at the meeting.
Aaron Kowalski from JDRF gave an inspired and inspiring talk in the Access to Novel Technologies session where he focused on the significant role PWD have in increasing access to new treatments and his absolute focus on the person with diabetes had me fist pumping with glee!
Ascensia Diabetes packed away The Grumpy Pumper into their conference bag and sent him into the conference to write and share what he learnt. Great to see another group stepping into this space and providing the means for an advocate and writer to attend the meetings and report back. You can read Grumps’ stream of consciousness here.
Dr Pratik Choudhary from the UK was my favourite HCP at ATTD with this little gem of #LangaugeMatters. Nice work, Pratik!
ANY DISAPPOINTMENTS?
Well, yes. I am still disappointed that there were no PWD speaking as PWD on the program. This is a continued source of frustration for me, especially in sessions that claim to be about ‘patient empowerment’. Also, considering that there was so much talk about ‘patient-led innovation’, it may be useful to have some of those ‘patient leaders’ on the stage talking about their motivations for the whole #WeAreNotWaiting business and where we feel we’re being let down.
I will not stop saying #NothingAboutUsWithoutUs until I feel that we are well and truly part of the planning, coordination and delivery of conferences about the health condition that affects us far more personally that any HCP, industry rep or other organisation.
DISCLOSURE
Roche Diabetes Care (Global) covered my travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #ATTD2018 (more to come on that). They also assisted with providing me press registration to attend all areas of ATTD2018. As always, my agreement to attend their blogger day does not include any commitment from me, or expectation from them, to write about them, the event or their products. It is, however, worth noting that they are doing a stellar job engaging with people with diabetes, and you bet I want to say thank you to them and acknowledge them for doing so in such a meaningful way.
I wrote this post on this day last year and today, when it came up in my TimeHop app reread it and realised it is a good one to consider at the beginning of the year as I’m trying to get myself in order. I’ve made some edits to some of the points due to changes I made last year in the way I manage my diabetes. (The original post can be found here.)
I suppose that I was reminded that being good at diabetes – something I’m afraid I miss the mark on completely quite often – does involve others who sometimes don’t necessarily understand what it is that I really need. And I can’t be annoyed if they don’t intrinsically know what I want and need if I can’t articulate it. This post was my attempt to do just that.
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Sometimes, I’m a lousy person with diabetes (PWD). I am thoughtless and unclear about what I need, have ridiculous expectations of others – and myself, and am lazy. But I’m not always like that. And I think I know what I need to do to be better.
Being a better PWD is about being true to myself. It is also about reflecting on exactly what I need and I hope to get it.
- I need to remember that diabetes is not going away
- I need to remember that the here and now is just as important as the future
- I need to remember that I don’t have to like diabetes, but I have to do diabetes
- I need to remember that the diabetes support teams around me really only have my best interest at heart, and to go easy on them when I am feeling crap
- I need to empty my bag of used glucose strips more frequently to stop the strip glitter effect that follows me wherever I go – edit: while this is true, I do have to admit to having far fewer strips in my bag these days due to my rather lax calibration technique
- I need to remember that it is not anyone else’s job to understand what living with my brand of diabetes is all about
- I need to remember that the frustrating and tiresome nature of diabetes is part of the deal
- I need to be better at changing my pump line regularly – edit: even more so now that I am Looping and think about diabetes less than before.
- I need my diabetes tasks to be more meaningful – quit the diabetes ennui and make smarter decisions
- And I need to own those decisions
- I need to see my endocrinologist – edit: actually, this one I managed to nail last year and even have an appointment booked in for a couple of months’ time!
- I need to decide what I want to do with my current diabetes technology. There is nothing new coming onto the market that I want, but what about a DIY project to try something new? #OpenAPS anyone…? – edit: oh yeah. I started Looping….
- Or, I need to work out how to convince the people at TSlim to launch their pump here in Australia – edit: even more relevant now after yesterday’s announcement that Animas is dropping out of the pump market in Australia
- I need to check and adjust my basal rates
- I need to do more reading about LCHF and decide if I want to take a more committed approach or continue with the somewhat half-arsed, but manageable and satisfactory way I’m doing it now – edit: sticking totally to the half-arsed way and happy about it!
- I need to remind myself that my tribe is always there and ask for help when I need it
- I need to make these!
And being a better PWD is knowing what I need from my HCPs and working out how to be clear about it, rather than expecting them to just know. (I forget that Legilimency is not actually something taught at medical school. #HarryPotterDigression)
So, if I was to sit down with my HCPs (or if they were to read my blog), this is what I would say:
- I need you to listen
- I need you to tell me what you need from me as well. Even though this is my diabetes and I am setting the agenda, I do understand that you have some outcomes that you would like to see as well. Talk to me about how they may be relevant to what I am needing and how we can work together to achieve what we both need
- I need you to be open to new ideas and suggestions. My care is driven by me because, quite simply, I know my diabetes best. I was the one who instigated pump therapy, CGM, changes to my diet and all the other things I do to help live with diabetes – edit: And now, I’m the one who instigated Loop and built my own hybrid closed-loop system that has completely revolutionised by diabetes management. In language that you understand, my A1c is the best it’s ever been. Without lows. Again: without lows! Please come on this journey with me…
- I need you to understand that you are but one piece of the puzzle that makes up my diabetes. It is certainly an important piece and the puzzle cannot be completed without you, but there are other pieces that are also important
- I need you to remember that diabetes is not who I am, even though it is the reason you and I have been brought together
- And to that – I need you to understand that I really wish we hadn’t been brought together because I hate living with diabetes – edit: actually, I don’t hate diabetes anymore. Don’t love it. Wish it would piss off, but as I write this, I’m kinda okay with it
- I need you to remember that I set the rules to this diabetes game. And also, that there are no rules to this diabetes game – edit: that may be the smartest thing I have ever written. I’d like it on a t-shirt
- I need you to understand that I feel very fortunate to have you involved in my care. I chose you because you are outstanding at what you, sparked an interest and are able to provide me what I need
- I need you to know that I really want to please you. I know that is not my job – and I know that you don’t expect it – but I genuinely don’t want to disappoint you and I am sorry when I do
- I want you to know that I respect and value your expertise and professionalism
- I need you to know that I hope you respect and value mine too.
And being a better PWD is being clear to my loved ones (who have the unfortunate and unpleasant experience of seeing me all the time – at my diabetes best and my diabetes worst) and helping them understand that:
- I need you to love me
- I need you to nod your heads when I say that diabetes sucks
- I need you to know I don’t need solutions when things are crap. But a back rub, an episode of Gilmore Girls or a trip to Brunetti will definitely make me feel better, even if they don’t actually fix the crapness
- Kid – I need you to stop borrowing my striped clothes. And make me a cup of tea every morning and keep an endless supply of your awesome chocolate brownies available in the kitchen
- Aaron – I like sparkly things and books. And somewhere, there is evidence proving that both these things have a positive impact on my diabetes. In lieu of such evidence, trust and indulge me!
- I need you to know I am sorry I have brought diabetes into our lives
- I need you to know how grateful I am to have you, even when I am grumpy and pissed because I am low, or grumpy and pissed because I am high, or grumpy and pissed because I am me.
- Edit: I need you to keep being the wonderful people you are. Please know that I know I am so lucky to have you supporting me.
Diabetogenic 