Diabetogenic

Time to start listening

March 13, 2018 in Diabetes, Healthcare team, Real life, technology | 3 comments

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.

The women

March 8, 2018 in Advocacy, Awareness, Diabetes, DOC, Family, Healthcare team, Peer support, Real life, Social media | 3 comments

The three most important women in my life are forces of nature: My mother, president of union, has instilled in me a desire to do work that helps others. My sister, the fiercest, feistiest, smartest person I know, who constantly challenges me to think outside my comfort zone. And my daughter – my amazing, miracle kid, (and kids like her) – is why I feel that the world is actually going to be okay.

The supporting cast of close family – mother-in-law who just happens to be an Australian aviation pioneer, my sister-in-law, aunts, cousins – and friends means that I am constantly surrounded by brilliant women doing brilliant things. I am astounded, daily, at the challenges they overcome, their triumphs, the lives they change, the impact they are making.

And in my diabetes life it is women – the incredible women – who keep me going and keep me motivated. My diabetes healthcare team is made up exclusively of women who truly breathe the whole person-centred care belief system, building me up and then supporting me as I do the best I can with diabetes. The women I have worked with, and continue to work with, in diabetes organisations who champion those who would otherwise be forgotten have become friends, mentors and daily cheerleaders.

It is people like Cherise Shockley, founder of DSMA; Dana Lewis, creator of Open APS; Susan Alberti, philanthropist; Jane Speight, diabetes language forerunner; Taryn Black, Diabetes Australia policy director and champion for having the voice of PWD heard; Riva Greenburg, journalist, changing the way we see people living with diabetes; Annie Astle, advocate and speaker, and the person I am most grateful to have come to know because of diabetes; Monique Hanley, cycling legend; Christel Marchand Aprigliano, advocate leader; Cheryl Steele, CDE extraordinaire and leader in diabetes technology education; Kerri Sparling, author, blogger and incredible advocate; Anna Norton, Sarah Mart and Karen Graffeo, the women behind Diabetes Sisters; Melissa Lee, incredible communicator, singer, former leader of DHF and now at Bigfoot Biomedical; Kelly Close, founder of diaTribe and Close Concerns; Georgie Peters, speaker, blogger, diabetes and eating disorders advocate…

And you know what? I haven’t even scratched the surface. The diabetes world is shaped by women, built by women, sustained by women. Advocacy efforts are often the brainchild and then led through the blood sweat and tears of women. And how lucky the world is!

I celebrate these women today and every day!

More writing about women and diabetes, and women’s health.

Hear Me Roar

This is what Diabetes Privilege Looks Like

The F Word

One Foot in Front of the Other

My Fantastic Frankie

A New Diabetes Superhero

#IWeigh

March 7, 2018 in Diabetes, Real life | 2 comments

About a month ago, we needed a new Netflix series to binge on and Aaron suggested we have a look at ‘The Good Place’. I’m so glad he did. It was fucking forking brilliant.

I adored all the characters and one if my favourites was definitely the name-dropping, poor-little-rich-girl Tahani, played by the exquisite Jameela Jamil.

The other day, while trawling through Twitter for Oscars updates, I came across her extraordinary #IWeigh initiative and have become a little obsessed. Jamil started this all with a blog post following a truly horrendous – as in ‘what the fuck fork were they thinking’ horrendous – photo of the women in the Kardashian family with their weights superimposed over the top of them. The photo was shared on an Instagram account claiming to be about ‘fashion, beauty, lifestyle’ which apparently is code for ‘Your-life-is-not-good-enough-you-piece-of-shit.’. Who knew?!

Anyway clearly Jamil was unimpressed by this photo – not only that these poor women had been labelled by their weigh in kilograms, but then there was a discussion afterwards that included posters doubting the truth of the numbers given. Awesome, not only were these women being judged about the number they see on the scales, they were also being called out as liars.

I looked at the photo and I stopped seeing the faces of the Kardahsians (I’ll be honest – I wasn’t all that upset) and started seeing them as bathroom scales. Oh – the insta post got better: it asked followers to share how much they weigh, because that’s a metric that we are ALL comfortable sharing with an Instagram audience. (Hashtag fitspo/thinspo/any-other-damaging-spo.)

Jamil’s impassioned post called out the bullshit and begging that we stop defining a woman’s worth by her weight, posting a photo of how she weighs her worth:

This resulted in a rush on women listing how they ‘weigh’ themselves.

While I think many women could relate to what was going on here, add diabetes to the mix and we have it tenfold! In diabetes, we get judged by more than just our weight. We become defined in the eyes of some HCPs by all the numbers associated with our condition whether it be the snapshot BGL check we do in front of them, our A1c, our blood pressure, our CGM trace or even our time in range. The measure of who we are is in those numbers, as if a number can define who we are.

But just like women cannot be measured by their weight (stop it! No, seriously – stop it!) people with diabetes cannot be measured by any of our numbers. Because of course, we are always, always, always about much more than that average number.

I measure my weight as a person not in kilograms or pounds, but in the things that make me who I am. Some of those things weigh me down, others lighten me. But together, they define me and make me who I am.

Owning my brokenness

March 5, 2018 in Diabetes, Real life | 6 comments

I’m not sure if it is age, acceptance, or perhaps even an admission of defeat, but these days when I look at my body, I have come to own that it is broken.

I actually say this with a feeling of achievement – I don’t really feel sad about it anymore. I don’t look at it and wish the brokenness away. I don’t want to cry and dream of a day when it will be ‘all better’.

I don’t even really hate what it is anymore, and that is a huge shift from a few years ago.

I have also come to understand – and accept – a lot of those feelings of hopelessness and helplessness were tied up with my fertility, but it has always been more than that.

It has also been about feeling that I am not enough and that my body is not enough. I’m acutely aware of how limiting diabetes can be some days, even if I am the only one who truly knows it. And often, I am the only one who truly knows it. Because my diabetes, by its very nature, has been easy to conceal.

The invisibility of diabetes doesn’t really make sense when it is your body it’s hiding away in. While my diabetes may be shrouded in a cloak of invisibility to everyone else, to me it may as well be covered in glitter, lit by neon and be accompanied by a marching band. There are days it’s all I ever see and all I ever feel.

The confusing thing is that while it has always been so obvious to me, I’ve tried to hide it away from everyone else. Clearly, I don’t mean I’ve tried to hide away the fact that I live with diabetes (exhibits A – Z: this blog/my job/talking endlessly about living with diabetes to anyone who will listen and those who won’t… etc.), but I certainly have frequently tried to hide away how it impacts my daily life.

Some periods in the last (almost) 20 years, diabetes has been harder to hide. Other times, it’s easier. It certainly has been easier since I’ve been Looping because overall, living with diabetes has been easier.

So when something happens that reminds me of just how difficult it can be, it is like a bolt of lightning.

A dodgy sensor on Saturday meant that I wasn’t Looping for most of the day, and that, combined with a shitty chest infection, resulted in some horridly high glucose levels – the highest I’ve seen in over six months. It hit me for six as the limitation of diabetes reared its ugly head. I tried to hide it until the waves of nausea started crashing over me and I took myself home and lay on the couch waiting for it to subside.

But as I dealt with it, I did something I wouldn’t have done in the past. Instead of denying there was anything wrong, or trying to blame anything else I could point my fingers at, I admitted just what it was: it was diabetes.

My broken body is my diabetes body. And it’s all I have. I can’t have one without the other. I may be lucky enough to be able to say that by and large I can manage to keep it in a place I’m happy with. But it is undeniable that there are times I cannot. We can’t always fix what is broken, but we can work around the brokenness. That’s what I do. Every single day.

Broken denim on my broken body.

Safety first

March 2, 2018 in Awareness, Devices, Diabetes, Pumps, technology | 5 comments

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!

One year – revisited

February 27, 2018 in Advocacy, Awareness, Diabetes | Leave a comment

I wrote the post below back in 2016 (original version here). The Lancet had just published a piece about the differences in insulin access around the globe and I was once again astounded and pained by just how difficult it is for some people.

I wanted to share it again because with the #SpareARose campaign finishing tomorrow, I thought that a reminder of just how dire the situation is for people born with diabetes in some countries was timely – especially for those of you who have been meaning to make a donation to Life for a Child, but just haven’t managed to yet.

Can you imagine if it was you or your child diagnosed, and that instead of heading to hospital for treatment, and then home again equipped with all the drugs and supplies you needed to manage diabetes, you had been handed nothing but a death sentence? To be honest, I can’t imagine that, because my situation – as with most people reading this blog – was not that.

Please take a moment to make a donation. It takes USD$5 to provide insulin to a child for a month. (And I promise, this is the last time I’ll be writing about this. At least, for now!)

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The life expectancy for a child diagnosed with diabetes in sub-Sahara Africa is as low as one year. That’s right: one year.

This is a fact for 2018, almost 97 years after the discovery of insulin.

And it is just not good enough.

In The Lancet, this piece was published about the challenges of accessing insulin around the globe. Why is this drug still so unattainable to so many? Why has access to insulin not had a high priority within agencies such as the UN and WHO?

Why are children and adults still dying when there is a medication available?

I am so angry and sad and desperate that this is the situation and while I am pleased that we are starting to increase the conversation about the unfairness of it, it’s just not enough.

Where is the outrage here? We get angry and feel vilified when someone doesn’t understand the difference between type 1 and type 2 diabetes, or because some celebrity dared to say something stupid about diabetes, and we retreat online and complain and bitch and moan. We say that we feel stigmatised and isolated and misunderstood.

And it’s true. Diabetes is stigmatising and isolating. People don’t understand the details. It’s downright, bloody unfair.

But we are not going to die because we can’t get our hands on a bottle of insulin. Perhaps we need to channel some of our oh-so-easy-to-access outrage and frustration towards an issue that can actually save some lives.

A diagnosis of type 1 diabetes in some countries is a death sentence, plain and simple. And a quick one at that.

And this isn’t okay.

Click image to donate

Blinded

February 26, 2018 in Conferences, Devices, Diabetes, Healthcare team, Pumps, technology | 3 comments

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…

Final push

February 23, 2018 in Advocacy, Awareness, Diabetes, DOC, Social media | 2 comments

Have you been thinking about making a donation to Spare a Rose; Save a Child, but just haven’t managed to do it yet? Did you think that because Valentine’s Day is over that it’s too late? Watch this and find out why your donation is still greatly needed.

Donate now to have your donation added to the 2018 Spare a Rose tally. Just click on the image below.

The jar

February 22, 2018 in Conferences, Diabetes, DOC, Peer support, Real life, Travel, Wellbeing | 2 comments

There is an indescribable feeling I have following a diabetes conference. Swirled in amongst the exhaustion, information overload, jet lag (because conferences are always in ridiculous time zones that are not AET), and memories, I come back galvanised in a way that can only happen when spending time with those in my tribe: others living with diabetes.

I returned from three days in Vienna bone-achingly exhausted. After being reunited with my family and not being able to stop hugging them, a few days of not-great-but-okay sleep and bucket-loads of Melbourne coffee under my belt, and time to process and write about what I learnt, I find myself recalibrated and ready for what’s next.

The hours of travel is a memory, the conference sits comfortably alongside all the others I’ve been too, my conference name badge is hanging in my office with all the others, and I’ve plans already underway from successful meetings.

In a lot of ways, the status quo has been restored and I am back to my real life after a few days of conference life.

But what is not the same is the level of vitality I now have, my veins pounding with the vigour that comes only from spending time with the people who are working to and for the same things because they get it at a personal level that is only apparent to those of us whose very DNA is affected by this condition.

I came to realise a few years ago that I have an invisible jar in my mind, and how empty or full that jar is depends on the time I’ve spent with likeminded diabetes friends. When the jar is nearing empty, I find it difficult to focus my energies on the advocacy and support issues that often are front and centre of my mind. I feel myself flailing and falling short because I don’t have the support of those I need to boost me up.

Of course, I am lucky enough to have others with diabetes around me even when I am in Melbourne (hello neighbour!), but it is those I see at these sorts of conferences – the ones whose minds and hearts are full of similar ideas, similar frustrations and find similar reasons to celebrate– that fill that jar right up. It is when I can simply turn to someone because they are sitting right there, have an animated conversation and high five each other with our enthusiasm that I feel capable and able to take on the world.

Those people who share my pancreatically-challenged existence, who breathe the same health condition, and struggle, celebrate and despair in similar ways to me, are the ones who fill up the jar ways to sustain me until the next time. My motivation is high, the momentum fast, my mind is working overtime. And my jar is overflowing right now with those people who may have beta cells that don’t work, but they make up for it in ways you couldn’t even begin to imagine.

Tine – who inspires me every time we speak.

#DiabetesMeetup at #ATTD2018

February 20, 2018 in Conferences, Diabetes, Engagement, Peer support, technology | 1 comment

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 – 21^st 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 20^th 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.