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Helen Edwards from Diabetes Can’t Stop Me has written a thoughtful piece today on her blog about why she has ‘broken up with CGM’.
I truly love this post, because it once again reinforces the ‘one size fits no one’ approach that I have always advocated when it comes to diabetes.
As I read Helen’s story, I realised I could have written this post. I was reminded of the long and very winding road that it took for me to get to a point where I could live comfortably with all the tech. Learning to love it took even longer. It certainly was not love at first sensor! For a long time, I felt overwhelmed by all the data, the alarms drove me to distraction and I struggled at times to live with an invisible condition when all my robot bits are on show.
I showed the below photo during my talk at ADATS last week. It’s from a few years ago (and accompanied this post) when I was really struggling to live alongside CGM. I had to work up to convince myself to put on a sensor and made all sorts of deals to try to limit the stress I was feeling. I turned off all the alarms except for the low alarm. I promised myself that I would rip the sensor out if I was starting to be paralysed with all the information being constantly thrown at me. And I reminded myself that the data was just numbers trying to retrain my brain to not feel judged by the electronic device.
This wasn’t the first time I made such a deal with myself. And it took this and many other attempts of starting to wear CGM before everything feel into place. There were times where I pulled sensors out after two days because I just couldn’t cope with it.
Learning to live alongside diabetes technology is not an easy decision. There is bargaining, sacrificing and trade-offs. The tech is brilliant, but it rarely, if ever, works as simply as the shiny brochures promise. It’s not perfect and the limitations of the technology should never be blamed on the person wearing it.
Also, it’s no good speaking to people like me, because I’m all evangelical about it and spend all my time telling people how much I love it – while conveniently forgetting how long it took to find that place.
The tech is not for everyone and no one should be made to feel bad if they choose a more analogue approach to diabetes management. This is another slide I showed at last week’s ADATS meeting (from this post):
Right device; right time; right person. The right device might actually be no device at all. And that is absolutely fine!
(Hat tip to Professor Tim Skinner for the title of today’s blog post.)
In an effort to terrify the bejeezus out of healthcare professionals get the word out about Loop and OpenAPS to a group of diabetes healthcare professionals, I decided to work my Loop story into my talk at last Friday’s #ADATS meeting. I was a little nervous about it, but being on the ADATS Committee, and recognising the name of the conference – Australasian Diabetes ADVANCEMENTS and TECHNOLOGIES Summit – I knew that there was no way I could talk about the latest diabetes tech advances and not talk about the DIY movement.
To set the scene, I started with the old chestnut of showing how far diabetes technology has come:
Then showed a slide with all our shiny new tech:
But then I stopped, and changed the slide a little, leaving the same photos, but altering the title to ask a question:
And then, I showed them what cutting edge diabetes tech really looks like:
I used the next slide to explain how I drive my Dtech these days, and how my iPhone and Apple Watch are part of my diabetes tech arsenal.
‘So…How many of you know about OpenAPS or Loop,’ I asked. Very, very few hands went up.
‘What about Nightscout? How many of you know about, and understand,d Nightscout?’ A few more went up – but really not many.
I nodded my head, completely unsurprised.
Then I told the audience I’ve been using Loop for almost three months. I explained how I ‘hacked’ an insulin pump, ‘became an app developer and built an app’… and now, my basal insulin is fully automated. I showed a screenshot of the app, and pointed out the dozens and dozens of small basal rate adjustments automatically made every day.
I explained how much better I feel, how much more time my glucose levels are in range and how I simply wouldn’t be without this technology now. I told them how I now wake up feeling that I can move mountains because night after night after night my glucose levels remain in a flat, straight line thanks to those micro basal adjustments, and I wake to a number that ranges no more than between about 5mmol/l and 5.8mmol/l.
‘How many of you are a little scared by this?’ I asked and waited. Hands shot up; many heads nodded. I waited some more, shrugging my shoulders a little.
‘This isn’t the scary future,’ I said. ‘It’s not dangerous, futuristic or downright terrifying – which is what I’m sure some of you are thinking. This is happening here and now. There are two other people in this room using one of the two systems and there are probably around thirty people across Australia who have started using one of them.
‘And if you are a healthcare professional working with people with diabetes, it makes sense to be aware of these technologies. Also, Nightscout has been around for a number of years now. It’s really not okay if you are working with people with diabetes and you don’t know about Nightscout…’
I know that my talk received a mixed reception. There was a lot of nervousness from some of the device company reps in the room – especially the maker of Loop-able pumps. Some HCPs were simply aghast and did nothing to hide their feelings, one person telling me that I was being irresponsible doing such a thing and even more irresponsible talking about it.
But others were far more interested. The rep. with type 1 diabetes from a device company who announced at the end of the day that he was ‘going home to hack his insulin pump’ was obviously interested. As were a number of other people with diabetes in the room. A couple of HCPs spoke to me about my experience, and one told me that he knows someone in the process of setting up Loop.
But mostly, there was nervousness and shock that not only is this happening, but that there are step-by-step instructions online so that anyone can get onboard. ‘You mean that ANYONE can access the instructions? For free? So any of my patients could do this if they knew about it?’ asked one endocrinologist while a diabetes educator he works with stood behind him sharing his horror. ‘Yep!’ I said cheerfully. ‘It’s all open source. No one is trying to make a buck out of this. It’s for everyone. Isn’t that fantastic! They didn’t share my enthusiasm.
Here’s the thing…I wasn’t (and am not) for a moment suggesting that it is the role of HCPs to start recommending this technology to the PWD they see. But it is naive of them to deny it is happening, or that the only way people with diabetes will find out about it is if their HCP mentions it. Also, I’m not recommending that everyone with diabetes should find a suitable pump and start Looping. I’m simply sharing my story – which is what I have always done here on this blog, and elsewhere as a diabetes advocate.
The title of this blog post came about when I mentioned the mixed reception a little later on in the day. I was sitting with three others at ADATS (who I knew would be sympathetic), and psychologist Tim Skinner commented that one of the reasons that HCPs might be so uncomfortable is because I am going beyond simply not following their directions of how I should be managing my diabetes. ‘You’re actually being a deliberately non-compliant diabetic,’ he said cheekily (Tim was one of the authors on the Diabetes Australia Language Position Statement, so he knew the response he’d get from me using such terminology). ‘This is a lot more than simply being ‘non-compliant’. You have actively hacked a diabetes device and are using that to change the way you are managing your diabetes. Deliberately non-compliant!’
He’s right. I never thought I’d wear the term ‘non-compliant’ as a badge of honour, but right then and there, I kind of was.
Even my t-shirt is deliberately non-compliant. (You can get your own by clicking on the photo.)
LOOP!!! I know you want more info. You can read my last couple of posts about my experience here and here, but the full details, continually updated by the brilliant Loop and OpenAPS brains trust can be found here. Read them. Also, you may want to join the (closed) Looped Facebook group. And if you are in Australia, we have our own (closed) page dedicated to local issues at Aussie Aussie Aussie. Loop, Loop, Loop. (And just a reminder – no one can build your Loop system. You have to do it yourself, but it is actually super easy once you have all the components.)
Disclosure
My travel costs were covered by the National Association of Diabetes Centres, the organisers of ADATS. I was on the ADATS organising committee.
Are you an adult (aged 18 – 75 years) with type 1 or type 2 diabetes living in Australia or the UK?
No? Avert your eyes and go back to looking at pictures of of cats on the internet.
Yes? Stop right there…. You can go back to looking at pictures of cats later, ‘cause right now, you have better things to do.
Like THIS:
Click to take the survey.
YourSay (Self-management And You): Quality of Life Study needs people just like you to have your say about the impact of living with, and managing diabetes on your quality of life.
You only have until the end of the month to participate, so now is definitely the time to do it.
And to say thank you, I baked these and am virtually sending you a couple:
You’re welcome!
Our kid has always enjoyed drawing. I’m someone who struggles to draw a stick figure, so I am frequently impressed by her ability to sketch and paint things that are actually quite good, and I’m able to easily identify.
The other day, I was tidying up the kitchen table when I came across one of her sketches. I picked it up and looked at it. ‘This is gorgeous, darling,’ I said to her as she sat at the table doing her homework. And then I stopped. ‘Wait…why are you drawing a woman pole dancing?’
Exhibit A
She looked at me with that expression that only a teenager-in-training can, and then started laughing. ‘Mum!’ She exclaimed, taking the drawing from my hands. She turned the paper ninety degrees, and held it up to me. ‘It’s a witch on a broomstick!’
Exhibit B
Ah, perspective!
On Friday last week, I spoke at the first Australasian Diabetes Advancements and Technologies Summit (#ADATS) in Sydney. My talk was ‘The consumer perspective on new technologies’. So, as usual, I crowd sourced some ideas from Facebook friends. I do this for two reasons… one: it gives me the opportunity to share the thoughts of other PWD so that my voice is not the only one heard. And two: I’m lazy.
I centred my talk around the love/hate relationship I have with diabetes technology and asked others to give me a couple of dot points on what they love, and what they don’t really love (or hate) about diabetes tech.
In many cases, the things people love are also the things they hate, and that makes so much sense to me!
Our perspective of our diabetes devices can change all the time. Some days, I am so appreciative for all the information my diabetes technology offers; other days I want to ignore it as it just makes me want to cry. Sometimes I love the devices and I can’t imagine being without them; other days I long for my body to be free of them. Some days, I love the alerts and alarms, and respond to them promptly; other days, the noise is unbearable and I switch off everything I can so I don’t need aural reminders of just how hopeless I am at diabetes.
My perspective can spin on a coin, and often it takes very little for me to move from loving every piece of technology to wanting to bin it all.
The point of my talk was not to bitch and moan about the technology I know I am so fortunate and privileged to be able to afford and use. It was to try to explain that the bells and whistles, and data and information can truly be wonderful. But our feelings about the tech will change (often several times in the space of a day) and this does affect how we feel about our diabetes.
Disclosures
My travel costs were covered by the National Association of Diabetes Centres, the organisers of ADATS. I was on the ADATS organising committee.
Last night, I attended an event at Parliament House in Canberra, acknowledging and celebrating two milestones: 60 years of Diabetes Australia and 30 years of the National Diabetes Services Scheme (NDSS).
I spent the night chasing down people who were instrumental in the establishment of the NDSS to thank them for their efforts and try to explain just how significant the Scheme has been in my diabetes life for the last (almost) 20 years.
I never knew diabetes before the NDSS. On the day following my diagnosis, after spending the morning seeing my new best friends (endo, CDE, dietitian…actually, the dietitian and I never hit it off), I took a couple of freshly-filled-in forms to 100 Collins Street in the city and took a creaky elevator to the third floor. It was there I was introduced to the NDSS. I handed over the registration form and then the order form. Box after box was piled onto the counter in front of me and I looked at the unfamiliar words on unfamiliar boxes wondering where I was going to put it all and how much it was going to cost.
A few boxes of needle tips for insulin pens and a few boxes of glucose strips and a box or two of urine strips. It was tallied up and I was surprised that it wasn’t a lot more expensive. I was given a card and told to bring it in any time I needed further supplies.
As I came to learn about diabetes in other countries, I realised just how unique the NDSS is and how fortunate we are in Australia to have it.
I proudly speak about the NDSS to diabetes friends from all over the world. Often, these friends are astounded that the NDSS is free to join and available to everyone with diabetes. They are astonished that the price of diabetes supplies is the same for everyone and not reliant on insurance. Often they can’t get their head around the idea that we can choose which strips to use for which meter we prefer, with no interference from an insurance provider. And they simply cannot believe that while there are some limitations to the quantities that we can purchase, the amount we can access is actually quite significant, and there are allowances and exemptions for people who need more than the limits determined by the government.
The NDSS is more than a diabetes supplies program. It is intrinsically linked with Diabetes Australia who was instrumental in the establishment and implementation of the NDSS back in 1987. Diabetes Australia continues to administer the NDSS and runs all the services associated with the Scheme – from diabetes camps, information events, information resources and support services.
But more than that, Diabetes Australia continues to lobby the government to extend the NDSS. More than five years of consistent lobbying resulted in the CGM initiative being announced and launched, and Diabetes Australia is actively urging the broadening of initiative to include other groups of people with diabetes who benefit from CGM (as outlined in the original joint submission from Diabetes Australia, JDRF, ADS, ADEA and APEG). Back in 2004, following a similarly consistent campaign, pump consumables were added to the Scheme. Recently, Diabetes Australia’s responded to the stakeholder engagement regarding the listing of Freestyle Libre on the NDSS with this submission. From the initial lobbying for the introduction of the NDSS to today, the link between Diabetes Australia and the NDSS has resulted in supporting people living with diabetes and making our lives easier.
The NDSS remains the only scheme of its kind in the world. It has enjoyed bipartisan support from consecutive governments.
Of course, our health system is not perfect here in Australia. I believe that there should be more funding and more subsidies on the NDSS. I don’t believe in restricting access to glucose strips for people with type 2 diabetes not using insulin. I know that a lot of people still find the cost of diabetes prohibitive and there is still a divide between those who can afford the latest technologies and those who cannot.
But the NDSS does go a long way towards lessening the burden in some ways and I certainly am glad – and proud – that we have it.
Disclosure
I have been an employee of Diabetes Australia (and Diabetes Victoria) since 2001. I cover all costs for all NDSS products I use.
Last week, a recipe was posted on the Medtronic Australia Facebook page. The recipe was for a Chocolate Tim Tam Cake, which looked rather gooey and very chocolate-y.
I was looking for something to bake over the weekend, but decided that this cake wasn’t really the sort of baking I was up to, so I scrolled on, searching for the right recipe for my baking adventures.
But for some reason, I kept seeing the recipe appear in my FB feed, a couple of times because it had been posted in some of the LCHF groups I follow.
And then I did what I know I shouldn’t do. I looked at the comments, and down the rabbit whole of the very angry LCHF brigade I tumbled.
I am always very wary when it comes to dietary advice. I don’t follow the Australian Dietary Guidelines because I find the quantity of carbs recommended is just simply too difficult for my non-functioning pancreas. Or rather, for my (frequently barely-functioning) brain which has to act like my non-functioning pancreas. Also, I just don’t really want to have to bolus large quantities of insulin in one go. But that’s just me.
Equally, I don’t follow a paleo diet or I Quit Sugar or Dr Bernstein because anything that is so prescriptive is never going to work for me. Instead, I pick and choose what I know will work for me and, more importantly, what I can manage sustainably. I couldn’t really care less what other people with diabetes (or people without diabetes) eat, because I’m far too concerned with my own diabetes existence. And being obsessed with the @TrumpGoogles Insta account…
In exactly the same way I would never accept a HCP who judged what people eat or the tools people choose to manage their diabetes, I don’t take too kindly to other PWD (or anyone, really) suggesting that people who prefer to eat in a certain way are ‘killing themselves’. This is what was happening in the case of the recipe posted by Medtronic.
You can read the comments yourself (the post is here), or you can just assume that they all had to do with the criminality of a company daring to post the recipe while suggesting that people with diabetes might want a piece of cake. And varying versions of ‘you might as well just kill yourself’.
I’m not bagging the LCHF movement and anyone who fully subscribes to it. But I am calling out the frequent aggressive and belligerent rhetoric of some LCHF folk. I’ve had more than enough disrespectful and rude comments sent my way anytime I write about food or share recipes. Despite that, I’m not for a minute suggesting that the way you are choosing to eat is harmful, in fact, I completely agree that eating LCHF is one way for some people to best manage their diabetes. I know a significant number of people of have changed to this way of eating and they have found the results to be incredibly positive.
I also know a significant number of people who simply haven’t found it to be the right thing for them. Some say they have found it unsustainable, others say they found it boring. Others say they are simply not interested because they found it too restrictive, or too expensive. And some say the results they saw simply didn’t warrant the effort they needed to put in.
I know that for me, exclusively following a LCHF diet doesn’t work because I just don’t do food restriction. I’ve never dieted in my life and I don’t do well with being told what I can and can’t eat. I also know that I can quite easily manage to limit my carbs to around 50 grams per day and that the results I have seen since doing that have been worth the effort for me. I also know that all carbs are not created equal and I try to be smart about what I choose to make up those 50g (or so).
Oh – and mostly I know that sometimes…sometimes, those 50 grams of carbs are going to be a doughnut. I’m okay with that. Doughnuts are delicious and bolus-worthy.
As I firmly and resolutely believe, everyone has the right to manage their diabetes in a way that works for them. And they have a right to do that without being bothered by others. Being told that what you are eating is ‘poisoning your body’, or being told that the devices you are using are toxic helps no one.
Oh, and the personal attacks are also totally unnecessary. The person who sent me an aggressive FB message after seeing this profile photo can just pull their head in. I ate a few bites of chocolate cake (the best chocolate cake ever), not ‘poison’. And yes – even after eating those few bites, I still have both my legs, and my kidneys continue to work just fine. But thanks for asking.
Eat how you want. Let others eat how they want. It’s really not that hard.
For the record – this is what I made on Saturday evening. (This one went to the neighbours, but I also made a smaller one for home.) It’s a blueberry crostata. I added a little ricotta underneath the fruit and made a ridiculously buttery pastry to hold it all together. Super easy. Super delicious. (And my CGM trace peaked at 7.3mmol/l for anyone wondering…)
I’ve now been looping now for a couple of months. During that time, I’ve come to understand that I know far less about diabetes – my diabetes – than I actually realised. I’ve come to realise that diabetes is far more complex and difficult than I ever thought. I’ve come to see that the tools we have been using are so incapable of managing with the constant changes of diabetes. And I’ve come to realise that using tech off label is the only way to go anyway towards overcoming these challenges.
After my first couple of weeks of looping, I honestly thought that the whole thing was somehow tricking me. What was this ridiculousness of waking every single morning with numbers firmly between 5mmol/l and 5.5mmol/l? I’d look at my Loop app suspiciously, switching to my Dex app only to have the number confirmed, and a straight and steady glucose trace showing that I’d been there all night. How did THAT happen? I’d ask myself every. The Loop app had all the answers.
The automation is where the magic is. Prior to looping, I had about fourteen different basal rates sets for a 24-hour period. I had gone through times of extreme basal checking to try to tighten up those rates as much as possible, tweaking them here and there, and I thought that I had it pretty right. And insofar as basal rate settings on a pump, I suppose I did have it right.
But loop has taught me that while the overall shape of my basal rates was pretty spot on, there is only so much a pump can do with set, static rates programmed into a pump. There is nothing my pump could do to respond in real time if I needed more basal insulin unless I manually inserted a temporary basal rate.
On an average night for me now, my basal rates are automatically being adjusted dozens and dozens of times. Remember, this is during the night, when there is no need to contend with food or most other factors that affect glucose levels.
You know those mornings where you wake up, see a number in the double figures and wonder if it is at all possible that you sleep walked to the kitchen, sleep baked a pavlova and then sleep-ate the whole thing? Loop’s automation addresses that.
One morning I woke up to see that my basal rates over night had been more than double the set rate for three hours. I’d gone to sleep with a glucose level of 5mmol/l, but for some reason at about 1am, I had started climbing. Instead of waking high, the significant increase in basal insulin took care of it and I woke up in range.
Is looping the solution to all diabetes problems? Of course not and I’d be naïve to think that there was a silver bullet. But it is certainly a useful tool in my diabetes treatment arsenal, especially when combined with eating mostly lower carb. And thanks to the automation, it certainly does lift some of the burden. It also helps beautifully when I am ovulating or my period is about to start, when all bets are off and I just resigned myself to a couple of days of mayhem.
Undoubtedly it is not THE solution – in fact, if anything, it has made me despair more about what we are lacking in diabetes technology, because the increased understanding of diabetes that has come with using Loop makes me more desperate and impatient for tools that actually can manage more and more of the complexity of diabetes. I have a new found respect for that complexity.
Real time; Loop and iPhone app.
I really tried to switch off from the external diabetes world during my recent holiday. (I would have liked to have switched off from my own diabetes too, but apparently this diabetes gig doesn’t work that way.)
But now, I’m back and playing catch up on all the things I book-marked and planned to read later. Join me!
PLAID
Do you read PLAID Journal? It’s a truly terrific open access peer-reviewed research journal full of interesting articles and research news.
The latest edition is out now, and it includes a little piece I wrote about day to day diabetes.
PROPORTIONAL
My friend Hope Warsaw alerted me to this graph which was tweeted during the recent MedX conference. I like-y very much!
WORDS AND MUSIC
Gee I have some talented friends! Melissa Lee, (there are truly not enough adjectives to describe her aweseomess), has been recording D-Parodies for a number of years now. In recent efforts to raise money for Bigfoot Biomedical’s recent JDRF walk team, she enticed people to donate with promises of new tunes. And boy did she deliver. You can see all of her parodies via her YouTube channel.
But start here for a gorgeous diabetes-themed rendition of Fleetwood Mac’s Landslide – obviously renamed ‘Lancet…’
COVERAGE ON ANIMAS
There has been A LOT written about the recent Animas announcement that they will be ceasing business in the USA and Canada.
If you’re looking to catch up, here are some things I’ve found to be particularly useful:
This comprehensive update from Diabetes Mine.
This great piece from Georgie Peters reminding us how personal these devices are to those of us wearing them.
This piece from Diabetes Wookiee, David Burren, urging Roche to step up with their pump which is still available in Australia despite no longer being in the US market.)
And just a reminder of the situation in Australia: Animas is not going anywhere yet, with disruptor AMSL’s update that it’s ‘business as usual’. Unlike our US and Canadian friends who need to make a decision quickly about changing pumps, there is no suggestions that we need to do the same. Animas is still in the Australian pump market – along with Medtronic’s offerings, the Roche Accucheck Spirit Combo pump and (from 1 November) Cellnovo.
HAVE ANOTHER COFFEE
Presented at EASD – the results of a ten-year study that showed people who drink coffee regularly are less likely to die of diabetes. Another latte, please.
How’s this? A free 5-day diabetes summit that anyone can attend. The online Diabetes Empowerment Summit is the brainchild of Danielle Hargenrader.
Read all about it and get your ticket here.
YOGA FOR DIABETES
More from talented friends! Rachel Zinman is currently on a book tour in the US promoting her new book – Yoga for Diabetes: How to manage your health with Yoga and Ayurveda.
THROW OUT THE FAX!
I was delighted when Scott Johnson included this slide in his presentation about MySugr at the recent Roche Blogger MeetUp at EASD:
Clearly I’m not alone in my frustration at the insistence of some HCPs to continue to champion (and only use) fax machines!
PEER SUPPORT SESSION WRAP UP
I wrote about the peer support session at ADS-ADEA, and my talk in the symposium. Here’s the wrap up from the ACBRD – the organisers of the symposium.
ALSO FROM THE ACBRD…
If you live in Australia or the UK, please take part in the yourSAY quality of life study. Have your say about the impact living with diabetes has on your life.
Click here to take the survey.
BINGO!
I couldn’t help but laugh when Melinda Seed developed this neat little bingo chart to be used at diabetes conferences. She tweeted it out at the beginning of EASD, just as I was lamenting that questionable language being used by presenters at the conference.
Unfortunately, I couldn’t play during talks. I would have spent far too much time shouting Bingo at inappropriate moments. Come on, people; do better!
My blog break was completely unplanned, but once EASD was over and my family joined me in Lisbon, I knew that our next three weeks together would be completely dedicated to chasing the sun, relaxing, eating, wandering through art galleries, napping in the afternoons. And not writing.
I thought the best way to get my writing chops back would be to share some pictures. Because pictures tell a thousand words, which means I won’t have to write many!
So, here are some photos. With tenuous links to diabetes…
Fab event (as usual) by diaTribe at EASD. And this slide is just so damn on point and why I keep harping on about time in range rather than A1c:
We’ll title this photo ‘As if’. Or ‘Pffft”:
Wandering the streets of Lisbon, I found a shop that I wish was a real pharmacy:
Smart advice found in Lisbon. In my hands is the best chocolate cake I have ever eaten:
Also in Lisbon, this #LanguageMatters gem printed on the window of a water-side restaurant:
All day, every day. With thanks to Finn:
This is what happens when the sun is bright, all day is spent wandering around. And a Dexcom is firmly affixed to my upper arm….
It appears that Loop has broken my diabetes:
It’s important to visit family when visiting other countries. Thanks to CEO Chris Askew for the great catch up:
We visited Cheddar, went to an ice-creamery and discovered their ice cream has diabetes:
And finally: tribe.
DISCLOSURES
My flights and accommodation costs to attend EASD2017 have been covered by Roche Diabetes Care (Global). Yesterday I attended the Roche #DiabetesMeetup (more on that to come). Roche also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products.
Our holiday following EASD was funded by my family’s dwindling bank balance.
I flew into Lisbon, arriving at my hotel just after midnight on Monday. I get that Australia is a long way from everywhere, but the 38 hours’ transit was a record for me and as I tumbled into bed, I dreaded the alarm that would sound a mere 6 hours away.
However, I’ve done this enough times now to know a sure-fire way to overcome jet lag is to organise a relatively early morning meeting that involves coffee and local pastries. (Hello, Pastelaria Versailles and thank you for your beautiful baked goods.)
The main reason for this trip was to attend the Roche #DiabetesMeetup. (Disclosures? Yep-all at the end of this post….) This is the third one of these meetings I’ve attended (read about the first one at EASD2016 here and the next at ATTD2017 here) and, as always, it was great to see the familiar faces of dynamic diabetes advocates doing dynamic diabetes advocacy.
This year, there were a whole lot of new faces, with over 60 diabetes bloggers from across Europe having been invited to become part of the conversation. As well as attended the dedicated satellite ‘consumer’ events, the bloggers are all given press passes to attend all of EASD.
This is astounding. It means that it is impossible to walk around the conference centre without seeing other people with diabetes. Arms adorned with CGM or Libre are not startling – they’re everywhere. The beeps and vibrations of pumps can be heard in sessions, causing heads to bob up, and knowing glances to be shared. Our presence here is undeniable.
On the first official day of the EASD meeting, the third annual #DOCDAY event was held. While Bastian Hauck (the event organiser) starts by inviting bloggers to the event, he warmly and enthusiastically extends the invitation to HCPs and industry too.
On Tuesday, the room was full of people, discussion and enthusiasm
#DOCDAY has become a platform for anyone who attends to take the stage, and five minutes, to share what they’ve been up to in the diabetes advocacy and support space. I stepped down from my usual language soap box, proving that this pony does indeed have more than one trick.
Instead, I spoke about the role of people with diabetes at diabetes conferences. I couldn’t think of a more appropriate time, or a more suitable room to plead my case, even though I knew that I was preaching to a very converted choir!
Two weeks ago, in Perth, there were a few of us wandering the #ADSADEA conference as part of the Diabetes Australia People’s Voice team. And at one point, on Twitter, where our presence is felt more than anywhere else, an interesting, frustrating and downright offensive (if I’m being honest) discussion started.
It was said that diabetes conferences are the safe place of diabetes healthcare professionals and that perhaps a day at the start of the conference could be dedicated to people with diabetes, but the delegate program (delegates being only HCPs) start the next day.
As you can imagine, that didn’t go down too well with some of the diabetes advocates in attendance.
I am actually unable to provide you with the arguments offered as to why people with diabetes should be excluded, but I think it included reasons such as HCPs need a space to be among peers, these are scientific conferences, HCPs need lectures without people with diabetes (not sure why – are we really that terrifying?).
I’m not into preventing people with diabetes attending diabetes conferences. Melinda Seed’s vision of 1000 people with diabetes at the conference is far more aligned with mine. We are not asking that the conference we ‘dumbed down’. I don’t want the sessions to be any different than they are now (with the exception of having PWD as part of the speaker list – but that is regardless of who is in the audience).
Here’s the thing. Organising a team of three consumers to attend (as happened in Australia) required someone to provide funding and coordination. That was Diabetes Australia and I’m really proud that the organisation I work for created this initiative.
To have over sixty advocates supported takes a commitment. I won’t for one moment suggest that I am naïve enough to believe that we are part of industry’s marketing strategy. But we absolutely should be part of that strategy. I am more than happy to give Roche the shout out and kudos they absolutely deserve for bringing us all together. I don’t use any of their products at the moment (although, in the past have used their meters), so I’m not in any way spruiking their devices or suggesting you go and update your meter with one of theirs.
But I am grateful that as part of their engagement with people with diabetes involves bringing us together at a diabetes conference.
What’s the role of people with diabetes at diabetes conferences? Our role is to share from inside with those not here. We’re here to remind attendees that using language that diminishes us and our experiences and efforts in living with diabetes is not okay. We’re here to tell industry they’ve messed up when they design is not spot on, or their marketing misses the mark. We’re here to challenge the idea that we should be quiet, ‘compliant’ and do what we are told.
As I said at #DOCDAY, we have a responsibility to share what we learn. I acknowledge – every single minute of every single conference day – that I am privileged to be here. And that comes with responsibility to share what I see, hear and learn.
DISCLOSURES
My flights and accommodation costs to attend EASD2017 have been covered by Roche Diabetes Care (Global). Yesterday I attended the Roche #DiabetesMeetup (more on that to come). Roche also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products.
Diabetogenic 
