Diabetogenic

Hats and seats

November 12, 2025 in Advocacy, Awareness, Community, Conferences, Diabetes, Engagement, Lived experience | 1 comment

ISPAD has led the way when it comes to including people with lived experience of diabetes at their annual meeting. It was the first conference to work with #dedoc° to have a voices scholarship program. The society has included people with diabetes on the organising committee for some time. ISPAD has awarded the ‘Hero Award’ which recognises the work done by people in the community. And the conference scientific program involves people with diabetes speaking and chairing sessions.

And so, it was interesting to hear someone ask at last week’s meeting in Montreal whether there should be a limit to the involvement and number of people with diabetes.

I wasn’t actually in that session, but I certainly heard about it from many others. People seem to expect me to have words to say about these sorts of questions. Turns out I do – and so do other people. And there was quite a bit of discussion – both at the conference, and in an online group after I shared the question with members.

While the question may have been well intended, (I certainly don’t believe there was any malice in asking), it did make me bristle. The idea of limiting access to a diabetes conference to people with diabetes has never sat well with me. It reeks of gatekeeping. And it also sends the message that people with diabetes are ‘allowed’ at the discretion of others rather than having a right to attend.

I think that quantifying the number of any sort of participant is problematic, but I have always liked this pie chart drawn and tweeted by James Turner (@jamesturnereux, although he appears to no longer be on the cesspit site) from a Medicine X conference in 2017. I am pretty sure that I have already shared this somewhere in the #diabetogenic archives, because I think it’s great! What I like about this is that it recognises that everyone has an equal place to be there. That equilibrium does sit well with me!

I also like the comment from my friend, and researcher and fabulous diabetes advocate, Ashley Ng. We caught up today to discuss this issue, and she said ‘I don’t agree with a maximum, but I do think we need minimum representation by people with lived experience’.

But this isn’t just a matter of representation, and it’s not simple either. There is the broader issue of people with diabetes wearing more than one hat. Some may also be researchers, clinicians, involved in technology development, industry representatives and more. This certainly does point to the complexity of the ecosystem. When looking at the number of people with lived experience of diabetes, we draw the cohort from many different spaces.

But this in itself adds to the intricacies of the situation. In fact, it is something that I have spoken and written about for decades (most recently here) and my position is very clear, albeit not especially popular with everyone. I believe that people with lived experience who wear no other hat in the healthcare space must be prioritised for positions centring lived experience at conferences, in panels, on advisory groups and anywhere people with diabetes are intended to be represented. Why? Because these are usually the ONLY way for us to get a seat at the table. Those wearing other hats may find themselves able to access other pathways via their employment or professional settings.

This is why #dedoc° generally doesn’t offer scholarships to healthcare professionals and researchers. The voices program is for people with diabetes who otherwise would not be able to find a way to attend conferences and who don’t have other prospective funding opportunities. I am aware that HCPs and researchers have limited opportunities available to them, but there are funding streams and grants, and institutional supports that are simply not open to people with lived experience who do not have any professional affiliation. Of course, (and it shouldn’t need to be said, but I’ll say it anyway), I’m not minimising the experiences of those who bring both professional and personal perspectives. But there are so very few opportunities for people with diabetes who represent as community members only to find a seat at the table. Those seats should not only be reserved for us, but we should all work to protect them.

It would be remiss of me to not point out that there are indeed unique challenges for people who straddle the professional and lived-experience divide. This article (I am a co-author) was written by people with lived experience of diabetes and wearers of other hats and addresses some of the issues faced by people in this situation.

These discussions are always interesting, but they can be uncomfortable. And also frustrating. I would hope that we are far along the lived experience inclusion road to not have to justify the rights of people with diabetes to be part of conferences and other efforts. And rather than even suggesting gatekeeping, we should be looking at more ways to make access to these spaces easier, and focused on diversity of voices. Chelcie Rice says we should bring our own chair if there isn’t one already for us. I say, bring two or three and the people to fill them too. But honestly, we should be beyond that now, right? We should simply be able to walk into any space and take a seat.

Disclosure

ISPAD invited me to speak at this year’s meeting and covered by accommodation costs. Travel was part of my role at Breakthrough T1D.

Why do you advocate?

November 9, 2025 in Advocacy | Leave a comment

How are we all doing this Diabetes Awareness Month? Are you feeling it? Or are you already over it – even though we’re just out of the first week, and the long haul is still ahead of us?

I’m on my way home from the ISPAD meeting. I’m at Montreal airport and I have another thirty hours ahead of me before I walk in the door home. I’m tired. But I’m energised. The privilege of spending a few days with diabetes advocates will do that.

Sitting here in the airport lounge, I opened Instagram and saw a post from Breakthrough T1D Advocacy. (And a little disclosure that I work in the Global Responsibility team at Breakthrough T1D.) The first slide was the statement ‘Why I Advocate’, and the following tiles shared responses from community members. I’m so annoyed I hadn’t seen this post before I got to ISPAD, because I would have loved to ask the #dedoc° voices their reasons for being such fierce and impactful advocates.

So…why do YOU advocate?

My answer? I advocate because I don’t know any other way to live with diabetes. Every day with diabetes is an act of advocacy. Some days that adds a burden that casts a very dark shadow, but some days it’s just life with diabetes. The wonderful Linxi Mytkolli introduced herself during her presentation at the #dedoc° symposium this week with ‘My full time job is managing my diabetes’, and then she went on to talk about her day job.

That’s diabetes: two jobs in one life.

While we may need to advocate all the time to simply live with diabetes, that doesn’t mean we need to be outspoken in the way we do it. It doesn’t mean we need to speak up or speak loudly or speak to rooms full of people. I hope people understand that advocacy can be on their terms, in their space, in their own way.

This week, my way has been to stand on the stage at ISPAD and talk about how research is one of the ways to end diabetes stigma. It was to amplify the #dedoc° voices and very loudly remind anyone who would listen that people with diabetes belong anywhere diabetes is being discussed. It was to chair two sessions which featured people with lived experience of diabetes speaking about their advocacy efforts.

And my way has also been a discussion in the airport lounge just ten minutes ago after changing my Omnipod and the person next to me wanted to chat about what I was doing. They were polite… ‘Do you mind me asking,’ they started. And no. In that moment, I didn’t. It felt light to share and answer questions about costs and advocacy initiatives to reduce those costs. It felt good to gently set the record straight when they said that diabetes was everywhere and it would just be better if people ate whole foods. And it felt positive when their response to me pointing out that stigma harms was, ‘I had no idea and I’ll be more careful about what I say’.

Two jobs. One life. Every little act of advocacy. Every little act of diabetes. Every single day.

Disclosure

ISPAD invited me to speak at this year’s meeting and covered by accommodation costs. Travel was part of my role at Breakthrough T1D.

When the joke’s on us

October 16, 2025 in Advocacy, Awareness, Community, Diabetes, Lived experience, Peer support, Social media | 1 comment

My dad has always taken his parenting duties very seriously, and as such, he made sure that by the time I was ten years old, I had watched and rewatched all Marx Brothers movies to the point that I was able to recite the scripts word for word. I can’t tell you how many times I’ve watched ‘A Night at the Opera’, but it’s probably that movie and not twenty years of classical music training that means I can sing along to most of Il Trovatore.

My mum has never been a fan of the Marx Brothers. She’d roll her eyes while we were rolling around on the floor in fits of laughter, shaking her head and muttering that she simply didn’t understand what we found so amusing.

Does this mean she doesn’t have a sense of humour? Of course not, contrary to dad’s constant suggestion of as much. Mum regularly shares killer memes and jokes that are laugh out loud hilarious. It’s just that the Marx Brothers have never made her laugh (weirdo).

This showed me that people laugh at different things. One person’s funny bone tickler is another’s shrug of utter indifference.

One thing I learnt pretty early on when I started hanging out in the global online diabetes community is that humour is a really important coping mechanism for living with the condition. It makes sense, right? I mean, there are some pretty grim aspects of life with T1D, and having a laugh can lighten especially dark days, and help us keep perspective when things feel overwhelming.

Back in the OG DOC days, there were awards given to writers and people on social media, and one of the award categories was humour. I’ve tried to inject some humour into this blog over the years – you can be the judge how successful I’ve been. Read to the end and you’ll see I’ve linked to some posts where I tried to use jokes and humour to keep things a little lighter.

Sometimes, however, attempts at humour don’t land all that well. Or they land at the expense of others. And when that’s the case, I think we need to stop for a minute and check ourselves. Is it worth getting a laugh when you are punching down?

I don’t think so – especially because the result of punching down is often stigma. And we all know how I feel about that. Right? RIGHT?

None of this is new from me. I’ve been talking about how when people stigmatise any type of diabetes, we all suffer. I’ve been pretty blunt when calling out the T1D community for being outright nasty about people with other types of diabetes, especially people with T2D. The stigma we experience is a direct result of misinformation and ignorance about all types of diabetes. Contributing to it is not only nasty, but it is also voting against our own interests.

This post today has come about because over the last 24-hours a T1D Facebook group that I’m a member of has been embroiled in a fiery debate because one of the group’s moderators posted a meme that stigmatises type 2 diabetes. I’m not sharing the meme here, (because why would I add to diabetes stigma?) but I can describe it by saying that it highlighted a risk factor of T2D in a very stigmatising way. It was unoriginal, unamusing and unkind.

And it got messy. A number of people asked for the meme to be removed. Many were upset and found it offensive.

The moderators of the group doubled down. There were demands to scroll by and reminders that we were not there to ‘defend’ other types of diabetes. Comments pleading for the post to be removed were deleted and people were told they ‘Can’t take a joke’. I asked a few times for someone to please explain the ‘joke’, because I didn’t understand it. No one was able to do that. My comments were deleted anyway.

It astonishes me that the moderators of this group have chosen the hill they want to die on to be that it’s okay to stigmatise T2D and people should get over it if they don’t like it. They must have spent hours deleting comments and telling people to ‘get over themselves’. They repeatedly pointed out that the group is a T1D meme group with what seems an assumption that all people with T1D are happy for there to be nasty memes about T2D. Reassuringly, that’s not the case. A lot of people with T1D in the group are not impressed about the stigmatising posts and pop their heads above the parapet to let that be known.

A T1D meme page could be a source of joy, amusement, unity and some pretty clever humour, but instead, this group seems to regularly descend into bickering about what’s a joke and what’s just plain cruel, because many people with T1D don’t want to see T2D stigmatised or for misconceptions to be perpetuated. I’m one of those people.

And yes, I know that I can just leave the group. But one of the other things my dad, (and mum) taught me is that the standard you walk by is the standard you accept, and posting crappy, stigmatising, false and outright mean things about people with any type of diabetes is not a standard I accept. I call it out – regardless of who it is posting it.

I also want people to understand that these sorts of posts contribute to not just stigma about T2D, but to stigma about T1D as well. It constantly befuddles me that people who defend the right to be nasty and stigmatising about T2D are the same people who are up in arms when someone says something incorrect or stigmatising about T1D. The intellectual disconnect that can’t join the dots between the two issues is really something!

We can do better as a community. There are brilliant stories, jokes, and moments of wit that are truly hilarious, and we should be able to laugh about the shared absurdities and frustrations of life with T1D. But we can do it without throwing another group of people under the bus.

I laughed way more than I should have at this T1D meme.

Want to see some truly funny things?

Watch Melissa Lee’s D-Parodies. Truly brilliant and hilarious.

Spoonful of Laughter from the team at dStigmatise brings comedians together to show how we can laugh about diabetes, and check stigma at the door.

Sam Morrison is one of the featured comedians on A Spoonful of Laughter and you can follow him, here.

Follow Brad Slaight! He’s hilarious.

Miss Diabetes manages to address some pretty serious issues around diabetes using her fabulous comics and artwork.

His Instagram handle is @type1comedian, and he’s damn funny! I’m not sure if any of Chelcie Rice’s stand up is online, but search for it and see if you get lucky.

And some questionable attempts of humour from me

Pancreas performance review (it’s really all about Effin’ Birds!)

My Lie on a Plate (rubbish influencers influencing rubbish)

Are you a diabetes expert? (This quiz has the answer!)

Eight years of deliberate non-compliance

August 18, 2025 in Awareness, Community, Devices, Diabetes, DIYAPS, Lived experience, Loop, Real life, technology | Leave a comment

Do you remember life before diabetes? It’s getting harder and harder for me to. I had 24 years without diabetes, and occasionally, I’ll look at a photo from the BD years and think about how much simpler my days were.

Today, I’m wondering how much I remember diabetes before I started using automated insulin delivery (AID). It’s been eight years. Eight years of Loop. Happy loopiversary to me! Diabetes BL (before Loop) felt heavier. And scarier. I remember those months just after I started looping and how different things felt. I remember the better sleep and the increased energy. I remember a lightness that I hadn’t experienced since I was diagnosed.

That’s now my “diabetes normal”. Life with Loop is simply easier than life BL. On the very rare occasions I’ve had to DIY diabetes, it’s been a jolt as I’ve realised just how truly bad I am at diabetes. Embarrassingly bad.

While there was a stark difference back then between people who were using DIYAPS and those who were using interoperable devices on the market, today that difference is less. AID systems are not just for people who choose to build one for themselves. These days, it’s so great to know that there are commercial systems available which means more people have access to AID. We can debate which algorithm is better or whether a commercial or an open-source system is better, but I think that’s a little pointless. If people are doing less diabetes and feeling happier, better and less burdened, it doesn’t matter what they’re using. Your diabetes; your rules!

Eight years on, and despite there being commercial systems I could access, I’ve decided to keep using Loop – the same system I started on 8 years ago. The changes I’ve made are the devices with which I am using Loop. My pink Medtronic pump has been retired, along with the Orange Link (which was obviously in a pink case). Instead, I now use Omnipod, a single device instead of two which has further simplified my diabetes. It’s also meant not worrying about a working back up Medtronic pump, and it means carrying less bulky supplies when travelling.

These may all seem like little things, but they add up.

My decision to not move to a commercial system has been based on a couple of different reasons. I always said that I wouldn’t move to something that required a trade-off whereby any of the convenience of Loop was compromised. I’ve been blousing from my iPhone or Apple watch since 2017, and I refused to let that go. In my mind, having to wrangle my pump from my bra or carry an additional PDM to bolus was a step backwards. Of course, this is now available on some commercial systems, and it’s been super cool to see diabetes friends have access to something that does make diabetes a little less intrusive.

The customisability of Loop has meant that my target levels are set by me and me alone. The lower limit on commercial systems is not what I like mine set at. I wasn’t prepared to sacrifice the flexibility of personalised settings fora one-size-fits-all approach.

I do understand that there are pros to having a commercial system. Having helplines to trouble shoot and customer support on call is certainly a positive. Knowing that an annual Loop rebuild (always anxiety inducing because …well, technology?) is upcoming is stressful. And the worry that the update will break something that’s been working perfectly.

And yet, measure for measure, the decision to continue to use Loop has been very easy.

I still thank the magicians behind open-source technologies for their brilliance and generosity every single day. I’m grateful for the algorithm developers, the people who have written step by step instructions that even I can follow, and I am so thankful for the people who have tried to make devices more affordable. I believe that device makers do genuinely want to make diabetes simpler and help ease the load of diabetes. But in my mind, it’s undeniable that user-led developments have been more successful in actually making diabetes easier. These magicians know firsthand just what it means to claw back from diabetes.

In the end, the goal for me has always been clear: I want diabetes to intrude in my life as little as possible, and I will avail myself of anything that helps. It’s why I continue to use an Anubis even though there is no out of pocket cost for G6 transmitters. Using an Anubis means I change my sensor when it’s getting spotty, not when the factory setting insists, and the transmitter last six instead of three months. See? Fewer diabetes tasks. Less diabetes. That’s the whole point. (And it’s also why I’m hesitant about moving to G7)

When I try to quantify how much less diabetes, I just come back to Justin Walker and his presentation at Diabetes Mine’s DData back in 2018 when he said ‘By wearing Open APS, I save myself about an hour a day not doing diabetes’. Eight years down the track, that’s 2,922 hours I’ve gained back. That’s almost 122 days. It may be thirty seconds here, a minute there. But it adds up. And that time is better in my pocket than in diabetes’.

And so, here I am. Eight years on. With diabetes in the background as much as it can be with the tools I have available to me. I still really don’t like diabetes. I still really resent it takes up the time and brain space it does, and I still want a cure for all of us. Damn, we deserve that.

But in the meantime, I’m going to keep leaning into what the community has done for the community and know how lucky I am to benefit from that knowledge and expertise. Never bet against the T1D community. We know exactly what diabetes takes from us every day. And exactly what it takes to give some of it back.

Black and white photo of me pointing at the camera. I'm holding up my phone case which is highlighted in pink and has the words 'Deliberately non-compliant' printed in black. — Seemed like an appropriate day to reprise this oldie.

More on my experiences with Loop

My first Loop post

That time I scared the hell out of healthcare professionals

Early on learnings from Loop

Loop and sleep

What looping on holidays looks like

A year of Looping

A list of how Looped changed my diabetes life (and all of it is still relevant today!)

Postscript

As ever, I’m very aware of my privilege. Access to AID is nowhere near where it should be. If we look at the Australian context, insulin pumps remain out of range for so many people with T1D thanks to outdated funding models. Remember the consensus statement developed last year? And beyond our borders, technology access varies significantly. As a diabetes community, we are not all beneficiaries from this tech until every single person with diabetes has access. And that starts with affordable, uninterrupted access to insulin, right through to the most sophisticated AID systems, to preventative treatments, to cell therapies.

In a Barbie world there’s still stigma

July 10, 2025 in Uncategorized | 3 comments

Yesterday, I awoke to social feeds flooded with images of a doll in a blue polka dot dress standing against a very recognisable shade of pink. Hi Barbie! But this one was different. This Barbie was wearing diabetes devices – and they were proudly on display.

Photo of Barbie. She’s wearing a blue polka dot skirt and top and wearing a pink pump and pump CGM.

American Girl did this a few years ago with a diabetes accessories kit. And T1D Barbie isn’t the first doll to be living with a chronic health condition or a disability. In recent years, Mattel has released a Barbie with a wheelchair, a Barbie that is blind, a Barbie with a prosthetic leg, a Barbie with hearing aids and a Barbie with Down Syndrome.

The launch was huge! In sync, Mattel and Breakthrough T1D celebrated the new doll with a pitch perfect media roll out. I could see just how meaningful this was to kids with diabetes. And adults with T1D too! I admit to squealing a little when I saw her pink pump (just like the pink pump I wore for the first 6 years I was looping) and her heart-shaped CGM over patch. I’ve worn one just like that! (And have the photo to prove it.)

Photo of me in a striped dress, standing in the garden. I am wearing a CGM covered by a pink heart-shaped patch on my arm)

It wasn’t just diabetes media that picked up the story. Type 1 diabetes Barbie was everywhere! And the stories were positive – T1D representation is important and matters. Which makes sense – seeing toys reflect diabetes helps normalise the condition we live every day.

And then I did something I knew I shouldn’t do. But because I’m an idiot – or maybe I was hoping that humanity would surprise me – I did it anyway. I read the comments. I didn’t read all of them – there were thousands. There were no surprises and what I read told me this:

Diabetes remains a horribly misunderstood condition and with that lack of understanding comes stigma.

There were a lot of comments about how unnecessary a T1D Barbie is, how it was ‘pushing an agenda’ and that kids don’t need toys wearing their health condition. I call rubbish on that from the get go, because representation does matter. Of course it does. To see our health condition in the mainstream tells us that we matter and that our experiences (and devices!) aren’t something to hide. That’s why we get excited when we see characters with diabetes in film and TV (albeit at the ready to criticise when diabetes is reduced to a single scary moment, or someone charges at a person having a hypo with a full insulin injection!).

Then there were the comments about how Barbie was glorifying ‘diseases’ or encouraging an ‘unhealthy lifestyles’.

And bam! The stigma was front and centre, with the loud confidence that comes from people who genuinely have no ideas at all about any type of diabetes.

People not impacted directly by diabetes often don’t understand it. If I could wave a magic wand I would have those people simply say nothing. In an ideal world, they’d learn a little bit about diabetes, but honestly; I’ve come to realise that’s not going to happen, and I really don’t care. I know nothing about health conditions that don’t directly impact me. My brain is too full of other things to learn the nuances of every single autoimmune, metabolic or chronic health condition out there.

If it were up to me (and sadly it isn’t) I would have every person with zero level of knowledge or understanding of diabetes simply scroll on by and say nothing. But of course that didn’t happen. Instead, they treated us to stigma-laden tropes about ‘lifestyle diseases’, ‘personal responsibility’ and the always fun ‘she doesn’t look like someone with diabetes’.

And that was followed by people from within the diabetes community trying to justify why this Barbie matters and going to great pains to shout back about different types of diabetes.

I read a lot of those comments with the same dismay as the comments from people outside our community. Because many of them did nothing but add to diabetes-related stigma. In efforts to define T1D, T2D and the people living with it were thrown under the (Barbie dream) bus.

I don’t know what it’s going to take for people to understand that responding to stigma with stigma doesn’t help the T1D community. It harms us.

All diabetes stigma is bad for people with diabetes. When we reinforce damaging stereotypes about other types of diabetes we do ourselves no favours. That’s not what is going to change attitudes of the broader community – in fact it will simply make many double down on their stigma. Stigma harms all of us. It doesn’t care about type. If we want stigma to end, we can’t keep adding to it.

The launch of our own Barbie with diabetes is a moment of joy and offers an opportunity to build confidence in kids (and adults!) living with T1D. Just think of the way it can start conversations and reduce feelings of isolation. This moment deserves to be harnessed as a moment for more visibility, more understanding, and more celebration of what it means to live with T1D. Let’s go Barbie!

Disclosures

I work in the Global Responsibility team at Breakthrough T1D.

Transcript: Making engagement the norm, rather than the exception

June 2, 2025 in Advocacy, Awareness, Communication, Community, Diabetes, DOC, Engagement, Health, Lived experience | 2 comments

This is a transcript of a talk I gave earlier this year to a European-based health consultancy and creative agency about my take on global diabetes community-based advocacy – the opportunities and challenges. The title I was given was ‘Making Engagement the norm rather than the exception’. AI did a remarkably decent job with this transcript, but I expect that there might be some clunky language in there that I missed when I read through it on a plane after being in transit for 27 hours straight. Or, I could simply have used clunky language. Either way, it’s my fault.

I often say that community is everything, but I want to begin by saying that it’s important to understand that there is no single, homogenous diabetes community. Everyone’s diabetes experiences are different. I truly believe that there are some issues that unite us all, but really, we are a very disparate group – something I have come to understand more and more the longer I have been involved in diabetes community advocacy. This poses possibly the largest challenge for everyone in this room wanting to work with “THE diabetes community” because if you’re looking for a group that agrees on everything and believes the same thing, I’m sorry to say that you’re going to be in for quite a ride!

But it is also the biggest opportunity – and the way to get an edge – because it gives anyone who works in the diabetes space – from healthcare professionals, researchers, industry, diabetes organisations, policy makers, the media – to roll up their sleeves and make a concerted effort to talk with a wide range of people with diabetes to understand our experiences and what we need. Look, I know that it would be easier for all of you if I said, ‘Speak with one person and then you’re good to go’, but that would be a lie. Sadly, a lot of people and organisations still believe this to be the case, and I have a great example to show you why that doesn’t work.

And that example? It’s me, hi, I’m the problem, it’s me.

A number of years ago, a researcher reached out to me with an invitation to be the ‘consumer representative’ on their project. After bristling at the term “consumer”, I asked what the project was about, and this is what they said, word for word because I wrote it down and have told this story a million times as a cautionary tale: ‘It’s a project on erectile dysfunction in men with type 2 diabetes, diagnosed over the age of 65.’

There was not a note of irony in this invitation. When I pointed out that I fit literally none of the categories in the study and then went on to point out that I am a woman; I have T1D; no erectile dysfunction; diagnosed at 24; was not within a decade of 65 years of age, the response was ‘Oh, but you have diabetes, so you’ll be great’.

Friends, I would not have been great.

For the purposes of this discussion, when I say diabetes community, I am referring to people with lived experience of diabetes. There is a lot of cross over in the diabetes advocacy space, and there are many examples I can point to that show how valuable advocacy efforts can be when people with diabetes are involved in efforts led by diabetes organisations or other stakeholders. In fact, at the end of last year, we saw a brilliant example of that with Breakthrough T1D in Australia receiving $50.1 million in funding from the Australian government for their Clinical Research Network. This is the power of an organisation meaningfully engaging with their community to tell the story of why their advocacy is important. I mean, what is more compelling than hearing from people with diabetes and their families about how research holds the key to a better diabetes future?

I’d encourage you to look at Breakthrough T1D Australia’s socials to see just how beautifully they centred people with lived experience to get their message across, and how it was people with diabetes who literally marched on parliament to tell the story. The coordination of the campaign may have come from a passionate advocacy and comms team in an organisation, but the words were all people with diabetes. (For transparency: I work for Breakthrough T1D, formerly JDRF, but not for the Australian affiliate. I am, however, extraordinarily proud of what Breakthrough T1D Australia has achieved and so, so impressed with the way their communications campaigns are never about the organisation or staff, but rather about the community.)

I believe that our community excels in telling the stories of our lives with diabetes, what we need to make our lives better, what works in our communities and how we can better work together. Some standout examples of this include the #dedoc° community, and, in particular, the #dedoc° voices scholarship program. This is the only truly global community where diabetes advocates are not only present but are leading conversations. #dedoc° has no agenda other than to provide a platform for people with diabetes which results in diverse stories and experiences being heard. And it also means that organisations want to work with #dedoc° because it’s an easy way to connect with community. (And another point of transparency: I’m the Head of Advocacy for #dedoc°.)

Organisations that thrive on working with community demonstrate their commitment to improving the lives of people with diabetes in ways that matter. If you don’t know about the Sonia Nabeta Foundation (SNF), you really should! The foundation has a network of ‘warrior coordinators’ who provide peer support and a whole lot more! I have now had the honour of chairing sessions at international conferences with four of these warrior coordinators and I can say without a doubt that Hamida, Moses, Nathan and Ramadhan’s stories resonated and stayed with the audience way beyond the allotted ten minutes of their talks. Addressing the challenge of a limited workforce and resources by engaging and employing people with diabetes to educate and support younger people with diabetes is so sensible and clever. And the results are remarkable.

I have seen similar examples in India. Visiting Dr Archana Sarda’s Udaan centre in Aurangabad and Dr Krishnan Swaminathan’s centre in Coimbatore completely changed my understanding of peer-led education. And groups like the Diabesties Foundation and Blue Circle Diabetes Foundation (also in India) are prime examples of the successes we can expect when people with diabetes take charge of programs and lead diabetes education.

Seeing these examples firsthand lit a fire under me to challenge what we have been told in high-resourced countries like Australia, and here across high-income countries in Europe. Why is it that we, as people with diabetes, are told to stay in our lane and not provide education? We may be considered ‘higher resourced’, but people fall through cracks because they are not getting what they need. Health systems remain challenged and overwhelmed.

The challenge we have in places like Australia is that PWD are very clearly told that we are not qualified to provide education. Rubbish! Our lived experience expertise puts us in the prime position to do more than just tell our own story, and I believe we need to boldly push back on beliefs that only health professionals are equipped to fill education and knowledge gaps. Because in addition to what we know, the expertise we hold and our ability to speak in the language that PWD understand, we also know about ‘going to the people’ and not expecting a one size fits all approach to work.

It would be naïve to think that community-led, and -driven programs and initiatives aren’t already happening. Community is integral in providing information that PWD are desperate for, even with caveats about consulting HCPs. There are 24/7 support lines available in the community, something that is simply not available in most healthcare settings. And anyway, who better than others with diabetes to give practical advice on real life with diabetes than those walking similar paths? In the moment and with direct experience.

The #WeAreNotWaiting community was established to not just offer advice but develop technologies to improve lives of people with diabetes and continues to do so today. A five minute lurk in any of the online community groups dedicated to open-source technologies is all it takes to see people with diabetes who had been at the end of their tether with conventional care now thriving thanks to community intervention.

And that is replicated in low carb groups where community provides advice and education on how to eat in a way that is often not recommended by HCPs. People share experiences how they are flourishing thanks to making informed decisions to eat this way, and air their frustrations about how they are often derided by HCPs about those decisions. The support that comes from these groups is often just as focussed on how to deal with the healthcare environment when going against the grain (unintended pun) as sharing ideas and advice on how the science behind how low carb diets work.

T1D groups talk about incorporating adjunct therapies into their diabetes management, moving from a glucose-centric approaches to looking at other meds and interventions that can support better outcomes. GLP1s may not be approved for use by people with T1D, but they are increasingly being used off label because of their CVD and kidney protective nature. These community discussions include suggestions on how to have conversations with HCPs to ask about how adjunct therapies might help, including pushing back if there is a blanket ‘no, it’s off label’ response. Before anyone thinks this isn’t a good thing, I remind you that we still need prescriptions from our HCP before we can start on any new drug. We should be listened to when we ask to have a discussion about new and different ways to manage our diabetes.

And there are also businesses led by community that have stepped into spaces that are traditionally organisation or HCP-led. A few years ago, Aussie woman Ashley Hanger started Stripped Supply to fill a massive gap when diabetes supplies could no longer be ordered online and shipped, instead necessitating a backstep where PWD had to go into pharmacies to pick up supplies. Ashley’s start up gave the people what we wanted and meant that, for a small subscription fee, supplies could be straight to our doors again. And it’s run by community – what’s better than that?

There is contention about people with diabetes working with industry, and that is a conversation for another time. But I will say that when we have people with diabetes involved in the development of the devices that we use and/or wear on our bodies every day, the end products are better. That’s just a fact. When you have people with diabetes employed by device manufacturers writing education and instruction manuals for those devices, they make sense because they are written from the perspective of someone who actually understands the practical application of using those devices. It’s a massive opportunity for industry to engage – and employ – people with diabetes. Way to get an edge!

What I would say to everyone here today is that if you are not directly working with people with lived experience of diabetes, you are missing out on the biggest piece of the diabetes stakeholder puzzle. But you have to do it meaningfully and perhaps the biggest challenge I face is dealing with the rampant tokenism that exists in the diabetes ecosystem. For my entire advocacy career I have been urging the implementation of meaningful engagement, and to be honest, a lot of the time I feel that I have failed in those attempts. Every time I see a crappy program or campaign come out of somewhere that claims to work with community, I realise that people with diabetes are being used in possibly the most nefarious way possible: to ‘lived experience wash’ the work of the organisation. I wrote a piece earlier this year about this and was completely and utterly unsurprised to receive comments justifying poor attempts of consultation.

But then, I see something like the video I am going to finish with from Breakthrough T1D in the UK, and I know that there is intent there to do the right thing and do it properly. To involve people with diabetes from the beginning, and centre them throughout the work. The result is a beautiful piece of storytelling that has been shared across the globe. I don’t know the metrics, and quite frankly, I don’t care. All I need to see is the response from the community to know and understand that this hits the spot. And you can too with your work if you engage properly. We’re here to help.

You can watch What a Cure Feels Like, the Breakthrough T1D UK video that concluded my talk here.

Disclosure

I was invited by a health consultancy firm to give a talk to fifty people working on public-facing health campaigns (NDA, can’t say anything more) and then run a workshop about working with lived experience representatives. I was paid for my time to present and prepare for the session, and reimbursed for ground transfers to and from the location of the meeting.

More about how to work effectively with people with lived experience of diabetes here.

Challenging ‘language of adherence’ at WHA78

May 27, 2025 in Advocacy, Awareness, Communication, Conferences, Engagement, Health, Language, Lived experience, Real life, Stigma | 4 comments

Last week I was in Geneva for the 78^th World Health Assembly (WHA78). It’s always interesting being at a health event that is not diabetes specific. It means that I get to learn from others working in the broader health space and see how common themes play out in different health conditions.

It’s also useful to see where there are synergies and opportunities to learn from the experiences of other health communities, and my particular focus is always on issues such as language and communications, lived experience and community-led advocacy.

What I was reminded of last week is that is that stigma is not siloed. It permeates across health conditions and is often fuelled by the same problematic assumptions and biases that I am very familiar with in the diabetes landscape.

I eagerly attended a breakfast session titled ‘Better adherence, better control, better health’ presented by the World Heart Federation and sponsored by Servier. I say eagerly, because I was keen to understand just how and why the term ‘adherence’ continues to be the dominant framing when talking about treatment uptake (and medication taking). And I wanted to understand just how this language was acceptable that this was being used so determinately in one health space when it is so unaccepted in others. This was a follow on from the event at the IDF Congress last month and built on the World Heart Foundation’s World Adherence Day.

Slide with the title 'Better adherence, Better Control, Better Health'.

While the diabetes #LanguageMatters movement is well established, it is by no means the only one pushing back on unhelpful terminology. There has been research into communication and language for a number of health conditions and published guidance statements for other conditions such as HIV, obesity, mental health, and reproductive health, all challenging language that places blame on individuals instead of acknowledging broader systemic barriers.

I want to say from the outset that I believe that the speakers on the panel genuinely care about improving outcomes for people. But words matter as does the meaning behind those words. And when those words are delivered through paternalistic language it sends very contradictory messages. The focus of the event was very much heart conditions, although there was a representative from the IDF on the panel (more about that later). But regardless the health condition, the messaging was stigmatising.

The barriers to people following treatment plans and taking medications as prescribed were clearly outlined by the speakers – and they are not insignificant. In fact, each speaker took time to highlight these barriers and emphasise how substantial they are. I’m wary to share any of the slides because honestly, the language is so problematic, but I am going to share this one because it shows that the speakers were very aware and transparent about the myriad reasons that someone may not be able to start, continue with or consistently follow a treatment plan.

You’ll see that all the usual suspects are there: unaffordable pricing, patchy supply chains, unpleasant side effects, lack of culturally relevant options, varying levels of health literacy and limited engagement from healthcare professionals because working under conditions don’t allow the time they need.

And yet, despite the acknowledgement there is still an air of finger pointing and blaming that accompanies the messaging. This makes absolutely no sense to me. How is it possible to consider personal responsibility as a key reason for lack of engagement with treatment when the reasons are often way beyond the control of the individual?

The question should not be: Why are people not taking their medications? Especially as in so many situations medications are too expensive, not available, too complicated to manage, require unreasonable or inflexible time to take the meds, or come with side effects that significant impact quality of life. Being told to ‘push through’ those side effects without support or alternatives isn’t a solution. It is dismissive and is not in any way person-centred care.

The questions that should be asked are: How do we make meds more affordable, easier to take, and accessible? What are the opportunities to co-design treatment and medication plans with the people who are going to be following them? How do we remove the systemic barriers that make following these plans out of reach?

One of the slides presented showed the percentage people with different chronic conditions not following treatment. Have a look:

My initial thought was not ‘Look at those naughty people not doing what they’re told’. It was this: if 90% of people with a specific condition are not following the prescribed treatment plan, I would suggest – in fact, I did suggest when I took the microphone – the problem is not with the people.

It is with the treatment. Of course it is with the treatment.

The problem with the language of adherence is that it frames outcomes through the lens of personal responsibility. It absolves policy makers of any duty to act and address the structural, economic and systemic barriers that prevent people from accessing and maintaining treatment. Why would they intervene and develop policy if the issue is seen as people being lazy or not committing to their health?

And it means the healthcare professionals are let off the hook. It assumes they are the holders of all knowledge, the giver of treatment and medications, and the person in front of them is there do what they are told.

There is no room in that model for questions, preferences, or complexity. There is no room for lived experience. There are no opportunities for co-design, meaningful engagement or developing plans that are likely to result in better outcomes.

When the room was opened up to questions, I raised these concerns, and the response from the emcee was somewhat dismissive. In fact, she tried to shut me down before I had a chance to make my (short) comment and ask a question. I’ve been in this game long enough to know when to push through, so I did. I also don’t take kindly to anyone shutting down someone with lived experience, especially in a session where our perspective was seriously lacking. Her response was to suggest that diabetes is different. I suggest (actually, I know) she is wrong.

And I will also add: while there was a person with lived experience on the panel, they were given two questions and had minimal space to contribute beyond that. I understand that there were delays that meant they arrived just in time for their session, but they were not included in the list of speakers on the flyer for the event while all the health professionals and those with organisation affiliation were. There comments were at the very end of the session, and I was reminded of this piece I wrote back in 2016 where health blogger and activist Britt Johnson was expected to feel grateful that the emcee, who had ignored her throughout a panel discussion, gave her the last five minutes to contribute.

Collectively this all points to a bigger issue, and we should name that for what it is: tokenism.

I didn’t point this out at the time, but here is a free tip for all health event organisers: getting someone to emcee who is a journalist or on-air reporter does not necessarily a good emcee make. Because when you have someone with a superficial understanding of the nuance and complexity involved in living with a chronic health condition, or understand the power dynamics and sensitivities required when facilitating a conversation about long-term health conditions, you wind up with a presenter who may be able to introduce speakers, but you miss out on meaningful and empathetic framing of the situation. There are people with lived experience who are excellent emcees and moderators, and bring that authenticity to the role. Use them. (Or get someone like Femi Oke who moderated the Helmsley + Access to Medicine Foundation session later in the day. She had obviously done her homework and was absolutely brilliant.)

I know that there has been a lot of attention to language in the diabetes space. But we are not alone. In fact, so much of my understanding has come from the work done by those in the HIV/AIDS community who led the way for language reform. There are also language movements in cancer care, obesity, mental health and more. And even if there are not official guidelines, it takes nothing to listen to community voices to understand how words and communication impact us.

So where to from here? In my comment to the panel, I urged the World Heart Foundation to reconsider the name of their campaign. Rather than framing their activities around adherence, I encouraged them to look for ways to support engagement and work with communities to find a balance in their communications. I asked that they continue to focus on naming the barriers that were outlined in the presentations, and shift from ‘How to we get people to follow?’ to ‘How do we work with people to understand what it is that they can and want to follow?’.

Finally, it was great to see International Diabetes Federation VP Jackie Malouf on the program on the panel. She was there to represent the IDF, but also brought loved experience as the mother of a child with diabetes. The IDF had endorsed World Adherence Day and perhaps had seen some of the public backlash about the campaign and the IDF’s support. Jackie eloquently made the point about how the use of the word was problematic and reinforced stigma and exclusion, and that there needs to be better engagement with the community before continuing with the initiative.

Stigma isn’t the issue here

May 9, 2025 in Awareness, Devices, Diabetes, HbA1c, Pumps, Real life, technology | 1 comment

Earlier this week, diaTribe shared this on their Instagram:

It did not sit well with me at all. And I don’t understand the reference to stigma.

A1C is flawed. People with diabetes have been saying this for decades. To have our overall diabetes management measured by an average that gives no nuance to other factors is not a good way to assess health or guide treatment.

CGM changed all that, with visibility into just what is going on with glucose levels at all times. I finally understood why I was so tired some mornings, despite eight solid hours of sleep with in-range numbers at bedtime and at waking. I saw the rollercoaster nights, or the hours at time I was low. It became very clear that my nighttime glucose adventures were exhausting me.

As more people had access to CGM, TIR was heralded as the new gold measuring standard. And it was everywhere. I wrote and spoke about it a lot because the real-time data gave me a clearer understanding of my diabetes. But with that excitement came a gnawing discomfort: were we just swapping out one metric for another?

After a couple of years of TIR, and with the advent of newer, smarter AID systems there was a new kid on the block: Time in Tight Range (TITR). Target upper and lower limits were tightened and there were expectations of remaining within those ranges.

I nodded along because I was, for the most part, comfortably sitting within those number thanks to Loop. And yet, my discomfort grew. More pressure, more expectations on people with diabetes based solely on numbers, and a continued widening of the gap between people with access to tech and those without.

At ATTD a couple of months ago, there was the announcement of a new metric: Time in Normo-Glycaemia – TING! (There is no exclamation mark after the acronym, but it reminds me of the celebratory sound my kitchen timer makes when a cake is done baking, and that deserves festive punctuation.) And horrifyingly, to this #LanguageMatters boffin, the new acronym includes the word ‘normo’. Language position statements have always, always advised against using the word normal/normo. The word shapes attitudes that contribute to stigma. In one study, 85% of PWD surveyed found the word unacceptable.

These measures still focus on one thing: our glucose numbers. There are goals for the percentage of time each day we should be aiming to be in (ever-tightening) range. So, effectively, the HbA1c percentage has been replaced with time in range percentage. It’s still focusing on nothing more than numbers. It still sets us up for a pass/fail framework.

A1C, in itself, is not stigmatising. It’s a number. The language used when discussing A1C can be stigmatising. Attributing success in diabetes to an A1C number can be stigmatising. Being told we’re failing for not reaching an A1C of a certain number is stigmatising. But all of those things are true of TIR.

Before anyone comes at me and tells me that PWD should be able to have numbers within a tight range, of course that’s true. But isn’t that already the goal of our diabetes management? Isn’t that the point with all the glucose measuring, insulin dosing, and considering the bazillion other things we do to manage diabetes? I don’t know anyone with diabetes who does the work with a goal of glucose number of 17.0mmol/l; an HbA1c of 14%; a TIR/TITR/TING of 11%.

But replacing one measure for another still traps us in a numbers-only mindset. How is ‘What’s your TIR?’ really any different to ‘What’s your A1C?’ Does it free us from being metrics-focused? (Some might argue that it ties us to numbers even more with daily updates about how we’re tracking.) Does it address stigma?

I’m not sure it does. I’m not convinced that there is any relevance at all to stigma in this conversation. And I’m a little annoyed at the conflation. Diabetes-related stigma is very topical now, thanks to important efforts by PWD, community groups, researchers and clinicians in the diabetes space. If I was being cynical, I’d suggest that this is an opportunistic attempt to jump on the buzz movement of the moment without meaningfully engaging with what stigma really is or how any type of metric can contribute to it, depending on how it’s framed and used.

Postscript – but possibly the most important part…

And finally, but perhaps most importantly: the very idea that we are suggesting this is the gold standard when it is inaccessible to the vast majority of people with diabetes is just so out of touch. According to the diaTribe article that accompanied the Instagram post I shared earlier, worldwide 9 million people are currently using CGM as part of their diabetes management. The IDF’s latest Atlas data, (launched last month) reports that there are about 589 million adults (20-79 years) with diabetes across the world. That doesn’t include children and young people. (1.8 million young people are estimated to be living with T1D.)

Isn’t this one way stigma takes a hold? When we’re talking about targets that are only available to the small fraction of the diabetes community who can access the tools to achieve them. Setting standards around tech that most can’t obtain doesn’t just ignore reality—it reinforces the stigma of not measuring up.

A stunning retelling of our story of hope

May 2, 2025 in Awareness, Communication, Diabetes, Research | Leave a comment

It’s not an exaggeration when I say that I give thanks to Frederick Banting every single day. I have a photo of him in my office next to an artwork of the word HOPE. And anytime I am sitting at my desk working or sitting in my office reading and find myself looking at the photo, I say these words: ‘Thank you for my life’.

The story of the discovery of insulin has been told many times. There are some excellently researched and detailed accounts of what it took to get to the ‘Eureka!’ moment, as well as documentaries and a couple of feature length movies. But despite having a dozen or so books on my shelf that tell the story, I was so excited to order this version:

Photo of the children's book 'It Belongs to the World'.

‘It Belongs to the World’ is a gorgeous children’s book by Lisa Katzenberger, and illustrated by the supremely talented Janina Gaudin, (better known online as Miss Diabetes), is a truly beautiful retelling of the story.

While it would make sense to say that this book would make a great gift for a child with diabetes, or parent living with diabetes to read to their kids, really, it’s is a book for everyone. Stories like this should be told over and over, and not just to those of us for whom it is personally relevant. Everyone should learn about the brilliance of scientific discovery. It’s a reminder of the importance of research, and how research saves lives each and every day. It serves to encourage us to get behind research efforts, as a participant or donor if possible. And it gives hope for what still lies ahead.

Oh, and it’s always good to support creators in our community. What a brilliant awareness raising effort from Janina and Lisa. Go get your copy now!

Disclosures

None! I paid for my own copy of this book through my local bookstore. They had to get it in, so you may need to order it. (Or it’s available to order through Amazon.)

Why language and stigma clangers persist

April 24, 2025 in Advocacy, Awareness, Communication, Community, Conferences, Diabetes, Engagement, Language, Lived experience, Stigma | 1 comment

One of the things of which I am most proud is seeing how the language matters movement has really made people stop and think about how we communicate about diabetes. Of course, there’s still a long way to go, but it is very clear that there have been great strides made to improve the framing of diabetes.

One area where there has been a noticeable difference is at diabetes conferences. I’m not for a moment suggesting that there is never negative language used at conferences and meetings, but the clangers stand out now and are likely to be highlighted by someone (i.e. #dedoc° voices) in the audience.

Earlier this month, the 75^th IDF World Congress was held in Bangkok. Sadly, there was no livestream of the Congress, but it’s a funny thing when you have a lot of friends and colleagues (i.e. #dedoc° voices) in attendance. It meant that I had my own livestream. Sadly, the majority of what I was being sent were the language clangers.

But let’s step back a week or so to before the Congress even started. I was feeling horrendous and my brain was in a foggy, virus haze, yet I still managed to be indignant and vent at the horrendously titled ‘World Adherence Day’ which was being ‘celebrated’ on 27 March. Here is my post from LinkedIn, which has been viewed close to 12,000 times:

LinkedIn post that reads To anyone familiar with me and my work in diabetes and language, it will come as no surprise to learn that I’m disappointed to see today marked as ‘World Adherence Day’. According to campaign materials, the day aims to highlight the importance of following prescribed healthcare plans to manage chronic conditions like diabetes.

Here’s the issue with the word adherence (and its close cousin, compliance): both imply that people with diabetes—and other chronic conditions—are expected to follow healthcare plans handed down to them, often with little or no shared decision-making. Too often, PWD are told what to do without consideration of whether those instructions are realistic, sustainable, or even appropriate for their personal circumstances.

This language of ‘adherence’ reinforces a paternalistic model of care, where healthcare professionals are positioned as the sole experts and people living with diabetes are expected to adhere (or comply) without question. It overlooks the fact that managing diabetes is a 24/7 job, filled with constant decision-making, emotional labour, and real-life trade-offs. Framing someone’s experience through the lens of adherence places blame when things don’t go to plan, instead of recognising the complexity of living with diabetes.

This campaign has missed the opportunity to spotlight what truly supports better outcomes: co-designed healthcare plans built through respectful, collaborative partnerships between people with diabetes and their healthcare team.

What I didn’t say in my post was that the IDF had eagerly endorsed the day with a media release and social media posts. My LinkedIn post took all my energy for that day, and I didn’t get a chance to follow up with the IDF. Plus, I assumed their attention would have been focused very much on the upcoming Congress.

Also, I hoped that it was a one-off misstep. I mean, surely the organisation had learnt its lesson after the Congress in South Korea when I boldly challenged incoming-president Andrew Boulton for his suggestion that people with diabetes need some ‘fear arousal’ to understand how serious diabetes is. You can see the video of my response to that at the end of this post and read the article I co-authored (Boulton was another co-author) about language here.

Alas, I was wrong. Just days before the Congress started, I saw flyers for this session shared online:

I was horrified and commented on a couple of the posts I saw. I was surprised to see some responses from advocates which amounted to ‘We can deal with it when we get there.’ Here are reasons that isn’t good enough. Firstly – not everyone is there, so all they see is the promotional of an event, comfortably using stigmatising language. It suggests that this language and the meaning behind it is okay. The discussion shouldn’t be happening after the fact. In fact, the question we should be asking is: HOW did this even happen? Where were the people with lived experience on the organising committee of the Congress speaking up about this? Did they get to see it before it was publicised? And how did the IDF miss it? This is, after all, the organisation that launched a ‘Language Philosophy’ document in 2014 (which sadly seems to be unavailable online today). It’s also the organisation that has invited me to give a number of talks about the importance of using appropriate and effective communication to IDF staff, attendees of the Young Leaders Program and as an invited speaker at a number of Congresses.

A major sponsor at the IDF Congress seemed to be very excited about the word adherence. In fact, it appeared over and over in their materials at the Congress. Here is just a couple of their questionable messaging sent to me by people (i.e. #dedoc° voices) attending the Congress:

I will point out that the IDF obviously understands the impact of stigma on people with diabetes and the harm it causes. There were sessions at the Congress dedicated to diabetes-related stigma and how to address it. In fact, I had been invited to give one of those talks. But what is disappointing is that despite this, terminology that contributes to stigma is being used without question.

I wasn’t at the Congress but from what I saw there was indeed a vibrant lived experience cohort there. #dedoc° had a scholarship program, and, as usual, there was a Living with Diabetes stream. However, I will point out that the LWD stream was not chaired by a grassroots advocate as has been the case for all previous LWD streams. It was chaired by a doctor with diabetes and while I am in no way trying to delegitimise his lived experience, I am unapologetically saying that this is a backwards step by the IDF. When there is an opportunity for a person with diabetes who is not also a health professional is given to a health professional or a researcher, that’s a missed opportunity for a person with diabetes. There were seven streams at the IDF Congress. All except for one are 100% chaired by clinicians and researchers. Only the LWD stream is open to PWD. I know that when I chaired the stream, the four members of the committee were diligent about looking through the entire and identifying any sessions that could be considered problematic for people with diabetes. It appears that didn’t happen this time.

All of this points to a persistent disconnect. It is undeniable that the language matters movement is growing, but it is still not embedded across the board—even within organisations that should know better. If we are serious about addressing stigma and centring lived experience in diabetes care, then language can’t be an afterthought or a debate to have after the posters are printed and the sessions are underway. It must be part of the planning and the review process. The easiest way to connect the dots is to ensure the lived experience community is not only present, but also listened to, respected, and in positions to influence and lead. We are long past the point where being in the room or offered a solitary seat is enough – the room is ours; we are the table.

Postscript:

I have written extensively on why language – and in particular the word ‘adherence’ – is problematic. It’s old news to me and to many others as well. This piece isn’t about that. But if you want to know why it’s problematic, here’s an old post you can read.

Disclosures:

I was an invited to give a talk about diabetes-related stigma at the IDF Congress in Bangkok, but disappointingly, had to cancel my attendance due to illness. The invitation included flights and accommodation as well as Congress registration. I was also on the program for two other sessions and was due to present to the YLD Program.

Other IDF disclosures: I have been faculty for the YLD Program for the last 10 years; I chaired the LWD Stream at the 2019 Congress and was deputy chair of the 2017 Congress.